You are on page 1of 48

Volume 3 Issue 2 July 2000

Since her developing TM, we have effects of TM as a cause of sexuality


From the Editor
Sandy Siegel read about dysfunctional sexual problems?
issues and the physiological causes
both for men and for women. You may have an easy answer to that
My column in this issue is about sex. question. And you may not.
If a frank discussion about sex is Dysfunctional sex? Functional sex?
going to offend you, please skip to And I certainly do not mean to imply
Deanne’s column. I do not want to Trying to describe functional sex in in any way that the physical problems
offend anyone, and Deanne is way too American culture is probably a lot associated with sexual dysfunction are
smart to write a potentially offensive like describing the American family not significant. If I had TM, the first
column. Also, if you do not want structure; exactly what version are thing I would say to my neurologist
your children to read this, please hide we talking about? Sex is among the upon diagnosis is that I need to be
it away with your National most complicated aspects of our able to play golf, and I would like to
Geographics and American Urology behavior. It is most certainly a be able to have an erection – and not
Journals. physical behavior, but it is also a at the same time. I am merely
social behavior, and a psychological suggesting that the physical issues are
I am writing this column about sex behavior and a spiritual behavior. only among some of the issues to
because it has become very apparent And for most people, the consider, because the act of making
to me that this is a critical issue for so distinctions are not at all clearly love with your partner is much more
many adults who have TM. And for drawn. What’s my point? Well, my than the physical act of sex.
many adults with TM, it is not being point is that there are lots of people
dealt with reasonably, rationally or in America and lots of couples in It is critically important to talk to your
effectively. America who are fully functioning neurologist and/or other doctors about
in the physical realm who do not your sexuality issues. It is important
First, I am not an expert. I am a have functional sex by someone’s to understand the physiological issues;
cultural anthropologist, which pretty definition. It is not functional what is possible and what is not
much makes me an expert of nothing. because they do not love their possible from a physiological
I am a forty-eight year old man who partner or they do not love perspective. A neurologist may
has a permanent relationship with a themselves. It is not functional suggest different strategies with you
wonderful and beautiful woman who because they are not honest with and your partner. They can also
has TM. It is from my personal their partner or they are not discuss your medications with you
experiences and from the experiences monogamous. It is not functional and can identify which ones might
I have shared over the past five years because it is not physically interfere with your sex drive or your
with other members of the TMA that I satisfying. It is not functional sexual functioning. They might also
have developed my perspective. I because the relationship is not suggest medications that would help
have received many requests for emotionally satisfying. We are all in your sexual functioning.
information and have also had going to define functional sex
numerous discussions with people differently. And the definition is My experience has been that these
about these issues. This past month, I going to change with different discussions do not occur as a matter of
received an anonymous letter from a partners and with the same partner course. When you go to your
person asking for information; another at different times in our lives. We neurologist or other doctors, they may
cry for help. People are searching for change a lot during our lives and go through a list of questions with you
answers in this important area of their our attitudes about sex change, our while they are performing an
lives. expectations about sex change, and examination. Have you been asked
our definitions of satisfying sex about your sexual relationship with
Pauline’s and my sexual relationship change. So, here is the first your spouse or partner? In all of the
has changed since she contracted TM. challenge; how do you isolate the appointments I attended with Pauline
Page 2 The Transverse Myelitis Association
within the first two or three years of bunch of loaner adaptive Knowing where the uterus and
her onset, the issue of our sexual equipment on a Friday afternoon fallopian tubes are located isn’t
relationship was never initiated by and I brought Pauline home. That going to make you a good lover.
any of the doctors who cared for her. night, between my shleping her on Knowledge of anatomy doesn’t
And we have seen some very and off of the portable potty chair, translate into sensitivity, tenderness
wonderful, caring, competent and we made love. and care. Pay close attention to the
skilled doctors. This may be due, in effect you have on your partner. If
part, to the primary concern that both Here is what I was communicating you care enough how she feels and
you and your doctor have for treating to Pauline: I love you. I find you what she enjoys, you’ll get it figured
some of the serious symptoms you not one iota less attractive or out. If you are in this entirely for
have with TM, such as pain, appealing or sensuous than you yourself, there are less complicated
spasticity, or bowel and bladder were two weeks ago. We are and more efficient ways to achieve
functioning. There may be mobility going to have a life together no the same result.
problems, which become matter what; please don’t worry
overwhelming and leave little time or about anything. I am here for you. Find a way to talk about sex. Most
energy for other issues to be people have a difficult time
discussed. Sexuality may just not Here is how Pauline interpreted communicating about the kind of
make it to the top of the list of issues my message: Wow, men are just breakfast cereal they like; don’t
in comparison to some of the more totally amazing. think you are going to get what you
severe symptoms you are like about sex communicated non-
experiencing. But from what I hear I didn’t know this until sometime verbally. You’ll be too old to try
and read from our members, much later when Pauline and I had half of what you want to do by the
sexuality issues are not insignificant. a conversation about her first night time you get all of the grunts and
home from the hospital. Pauline groans of positive reinforcement
If you are going to begin to deal with sometimes has a conception of figured out. If you are not
these issues for yourself, for your men that is likely shared by many uncomfortable to talk about it,
partner and for your relationship, you women in our society: men are you’re made in the shade.
are going to have to raise these issues capable of having a satisfying
with your doctor. They have sexual relationship with an I also told them to study a lot every
information that can help you. But inanimate object, if the mood is day, to never cut a class, even when
you are going to have to make right. I’m not going to tell you they were sick, and to kiss their
yourself responsible for raising the that I think sex is the same for a teachers’ butts with great fervor and
issue. A good approach to take when man and a woman; I don’t think it frequency.
visiting your doctor is to have all of can be. But I do think that men
your questions and concerns written have evolved a little bit in the last So, this is the most important thing I
out. It will keep you organized in 40,000 years. Hey, we have have to say: please talk to each
your thoughts and will help you from feelings, too! other, and talk to each other can-
forgetting your questions. Be sure didly and honestly. Sexual issues
your sexuality questions are on your So, again, what’s my point? Well, are complicated issues when all of
list for your next appointment. And Pauline needed to hear my the parts are in working order.
be sure that you receive information communication more clearly than When they are not, it is only much
that you understand. was possible from the approach I more complicated. And, of course,
took in sending it. I needed to use it is not just the parts involved in the
I learned an important lesson in my my words. Then she would have complications. There are self-
relationship with Pauline very early had a chance to understand me. concept issues involved and there
in her bout with TM. Pauline was are relationship issues involved.
totally paralyzed from the waist When my boys went off to You shouldn’t assume anything
down at the onset of TM. She lost college, I offered them some about what your partner is thinking
bowel and bladder function and she advice about school and a variety and feeling. I also told my boys that
had lost a great deal of sensation of other subjects, among them the only way they would ever know
below her waist. After two weeks of being their relationships with their partner in her totality would be
hospitalization, the doctors told me women. Here are two pieces of if they were able to share every con-
that I could bring her home for a advice that I provided them: ceivable experience with her. Obvi-
weekend. Well, we packed up a ously, no one does. So, we do not
The Transverse Myelitis Association Page 3
know everything about our partners. bage, did a couple of loads of
If you have never been through a se- laundry, and cleaned the bath- From the President
rious illness with your partner, or if room? Deanne Gilmur
you have never been through a period
of sexual dysfunction, you are likely Talking may not cure anything,
going to find out a lot about yourself but it is not going to hurt any- provided so many memorable people
through this experience and you are thing. Life has changed with TM. who have inspired and enriched our
going to find out a lot about your Whether you have TM or your lives with their personal stories of
partner. You are also going to learn partner has TM, your lives have strength, bravery, and generosity in
something about your relationship. changed and your relationship has the face of this challenging condition.
How you learn it and what you do changed. It takes a lot of time, en- Week after week, I am contacted by
with what you learn is going to be ergy and care to understand and many who are trying to come to grips
very much dependent upon how deal with all of these changes. with their TM diagnosis and manage
much you talk about it with each And it takes a lot of talking. If the the various symptoms associated with
other and how you talk about it. talking is difficult for you, and it TM. Each person’s struggle drives
is for many, please be honest home the importance of the
Anthropologically, I am fascinated by about it, and seek help. There are information provided by TMA and
a society that produces individuals counselors who do this for a living the mutual support offered by TMA
who are total strangers to me and and they can facilitate this discus- members to each other. Thank you to
send me email inviting me into some sion with you. And they can help the many who have given generously
type of pictorial sexual excursion. you uncover some of the thoughts of their time and efforts to others and
The same society produces individu- and feelings that you might be the TMA at large in spite of the
als who are uncomfortable talking having a difficult time understand- additional hardships that either their
about sex with the person they have ing on your own. Ask your doc- TM symptoms or caring for a family
the most intimate relationship with in tors for suggestions about where member with TM has thrust upon
their lives and with whom they have you can find this help. them.
sex. Definitely, very fascinating na-
tives! I am very grateful to Dr. Lynn and Congratulations to Cathy Dorocak for
Leslie Moore for writing the won- beginning the important fundraising
I have entered about 470 respondent derful article in this newsletter on program “Reading for Rachel” in
surveys to the TMA questionnaire. the issues of sexuality surrounding honor of her young daughter who was
There are an amazingly small number TM. They offer some very impor- diagnosed with TM at age 6 1/2
of people who identify sexual prob- tant information and some inter- months. Congratulations to Cody
lems among their past or current esting strategies. I know that Unser for developing the “First Step
symptoms of TM. What does this ab- many of you will find this infor- Foundation” to promote treatment
sence of response communicate about mation useful. I wish you all the and TM research
where people are with this issue? best in this really remarkable jour- (www.codysfirststep.org). Kudos to
From my observations of American ney we are on. Be kind to your- Pamela Schechter for organizing a
culture, I would guess that it does not selves and to each other; and find meeting held May 27th in celebration
emanate from any lack of signifi- a way to talk about these issues. of the first anniversary of the New
cance we place on sex in our society. York State “Transverse Myelitis
Nor does it reflect any insignificance Take good care of yourselves and Awareness Day.” Bravo to Richard
we place on sex as individuals. each other. Boyle (Gunny) for getting the
General Assembly of the State of
If you are comfortable to talk, it Ohio to pass a Resolution setting
would help to talk about it. And talk- June 6, 2000 as Transverse Myelitis
ing in details is a good idea. What Our family recently recognized Day, and for his soon to be published
feels good emotionally? How can I the 10th year since our daughter’s book that describes his experiences
be more romantic? What feels good transverse myelitis (TM) with TM. Good work Board
physically? What doesn’t feel good? diagnosis. What a road it has member, Debbie Capen, who traveled
Where does it feel good? Where is it been! While we have experienced across the country to attend and
irritating? Where does it hurt? losses, so have we gained support the awareness event in New
Would it help if I took out the gar- something. The TMA has York. Thank you to Medical
Advisory Board member Dr. Kerr for
Page 4 The Transverse Myelitis Association
speaking at the New York support First International Symposium in the fund as of June to $6,550.
group and, as is so characteristic, for have been completed and made TMA is hopeful that the “challenge
giving so much professionally and available for purchase (see Janu- goal” will be met by the end of the
personally to the TMA and to TM ary 2000 newsletter or website). year. Every one of us wants to see
treatment and research. Thank you to Our talented website director, Jim medical research occur which will
Ann Moran from Ireland who took it Lubin, continues to add vital in- result in quicker diagnosis and initial
upon herself to increase TM formation to the TMA website treatment, improved and more
awareness during a meeting held by (www.myelitis.org). The effect successful treatments, and innovative
the National Broadcasting Service in that this site has had in allowing and effective therapies that improves
her hometown which led to her quick access to pertinent informa- life for all those with TM. This takes
appearance on the radio during which tion is immeasurable. Those who a strong commitment by our TMA
she talked about her experience with are recently diagnosed, often community to fund this kind of
TM. Thank you to Errol White of the mention the quality and helpful- research. We are lucky that in recent
Transverse Myelitis Support Group ness of our site! Jim consistently months, perhaps for the first time
in Australia who helped reduce TMA enhances and updates the website ever, there has been an increase in
publishing and mailing costs by so if you haven’t visited it lately, public awareness and education on
printing and mailing the last please take another look at what a TM. While this increase in
newsletter and this newsletter to our wonderful resource it is. Addi- awareness may ultimately assist us in
members in Australia and New tionally, we have had a continua- these efforts, we still need to
Zealand. They also held their second tion of generosity by TMA mem- strengthen our organizational
TM Awareness Day on May 17th. I bers new and old who have do- advocacy and support for cure
also want to thank the members of nated funds that continue to sup- research. The Endowment Fund is a
the Medical Advisory Board for their port the Association’s good work. very specific and direct way to take
ongoing involvement and help in the Small and large donations are this lead. As the Endowment Fund
Association. Thank you to Perry what makes it possible to meet so does not support TMA’s operational
Peltier and Board member, Paula many of TMA’s functions, such activities and services, please
Lazzeri, for producing and as this newsletter! The future of consider an additional contribution as
distributing the TMA Symposium TMA depends on membership part of meeting the “challenge,” or
videotapes. And of course, I must support of the Association’s gen- consider developing a local
say a special thank you to Sandy eral operational activities and ser- fundraising event/program that will
Siegel and his undaunted devotion to vices. Please consider giving to benefit the Endowment Fund.
the TMA newsletter. I know that I TMA so we can continue to grow
have neglected to acknowledge so and develop, and meet the needs And lastly, our 2000 goal of having
many others who have made of our membership. TMA members initiate awareness
generous and noteworthy activities in at least six states and four
contributions of their time and efforts In the last newsletter the Board of countries is well underway with
to support the TMA. These Directors also announced the positive actions/events having
extraordinary people of the TMA creation of the TM Endowment occurred in New York, New Mexico,
membership are making a difference Fund. The purpose of this fund is Ohio, Ireland and Australia. In
in this Association’s efforts to to generate a lasting source of previous newsletters I have discussed
increase awareness of TM and TMA, funds that can contribute to what I called “State and National
to offer support where and when it is ongoing and future TM cure Volunteer Representatives activities”
needed, and to encourage in every research efforts. The Board put and many individuals have contacted
practical way possible research that forth a “challenge goal” to our me and expressed interest in being
will eventually have a positive membership to help build the involved in such roles. Following
impact on those diagnosed with TM. Endowment Fund to $100,000 much consideration, it now seems
We are all more hopeful because of during the year 2000. We have best for TMA and our members to
everyone’s work. received limited response to this not formalize such roles for specific
challenge so far, but we are happy individuals, but to continue to support
During the past 6 months, TMA has to say that the funds generated by all persons with an interest in
made positive strides towards its the “Reading for Rachael” developing or participating in such
goals for 2000 (see January 2000 program have been designated for activities to work together to develop
newsletter). Video tapes of TMA’s the fund. This brings the amount these supports and working groups.
The Transverse Myelitis Association Page 5
After a working support group gets year. This will be an incredible The ‘inflammatory’ cases were
started, the group can identify a opportunity to forge new postulated to be due to an infectious
specific representative or relationships and to continue the or an allergic mechanism.
representatives for more formal Association’s momentum that was (Unfortunately, 118 years later we
coordination purposes. This should started with the last Symposium. don’t have a markedly improved
be a more effective and inclusive My best to all. concept of inflammatory transverse
way to jump start local support Dr. Kerr is an Assistant Professor myelitis).
activities. We hope those that have in the Departments of Neurology
been interested in such activities or and Molecular Microbiology and Dr. William Spiller at the University
roles will now move forward and Immunology, Johns Hopkins Hos- of Pennsylvania published a report in
develop contacts with other TMA pital. He is also the Co -director of 1909 detailing thrombosis of the
members to build connections, offer the Johns Hopkins Transverse cervical anterior spinal artery and
mutual support to existing members Myelopathy Center. Dr. Kerr proposed strongly that virtually all
and those newly diagnosed, and to serves on The Transverse Myelitis cases of acute myelitis are due to
undertake TM awareness activities. blood clots, not inflammation (we
The History of TM: The now know that either blood clots or
Responsibilities and Duties, and Origins of the Name and the inflammation may cause TM). His
Guidelines for persons interested in Identification of the Disease patient in that report (named John W.)
developing local groups and serving Douglas Kerr, MD, PhD
was an employee of the Philadelphia
as State and National Volunteer General Hospital who was required
Representatives have been completed one morning to lift 100-pound blocks
and will be included on our website. Association Medical Advisory of ice with assistance of another man.
This information along with other Board. (These blocks were then transported
information available from the TMA to each patient’s room as “air
website may be accessed and How long has TM been around? conditioning” and to provide cool
replicated for these purposes. We Reports in the medical literature washcloths). Shortly after lifting the
also encourage you to be in contact of “acute myelitis” date back to fourth ice block, John W. “began to
with Pamela Schechter who has been 1882 and are credited to Dr. H.C. have a sensation of coldness and pain
developing a support group in New Bastain, an English neurologist between the shoulders.” He then
York. We have asked Pamela to (Bastain, Quain’s Dictionary of noted “stiffness, then lower limb
chair this effort for TMA by being Medicine, 1st Edition, 1882). He numbness and weakness.” He became
available to share the process that described several cases of acute paralyzed by the next day, and despite
she undertook in her home state. myelitis resulting in “softening of utilization of an iron lung ventilator,
This will hopefully be a resource to the spinal cord.” He presented the John W. died shortly thereafter.
people who may be attempting pathologic findings of several Autopsy of his spinal cord showed a
similar processes. autopsies from patients who died blood clot in the cervical anterior
of the myelitis and divided the spinal artery, and it was proposed that
The Board continues to work with cases into those that he thought the lifting had caused the clot to form.
the Johns Hopkins Transverse were due to “thrombotic events to
Myelopathy Center on the blood vessels supplying the spinal In 1922 and 1923, physicians in
development of the Second cord” and those that were due to England and Holland became aware
International Symposium on acute inflammation. A of a rare complication of smallpox
Transverse Myelitis that is planned thrombotic event means a vaccination: inflammation of the
to be held July 12 - 15, 2001 in “stroke” of the spinal cord in spinal cord and brain (reviewed by Dr.
Baltimore, Maryland. Thank you to which a clot forms in one of the T. M. Rivers, JAMA, 1929). Given
everyone who filled out the Patient spinal arteries, thus depriving the the term post-vaccinal
and Family Needs Survey from the spinal cord of oxygen and causing encephalomyelitis, over 200 cases
January 2000 newsletter. Your input death of nerve cells in that area. were reported in those two years
will assist greatly in ensuring that the Most of these cases were due to alone. Pathologic analyses of fatal
Symposium program addresses the syphilis (syphilitic endarteritis - cases revealed inflammatory cells and
needs of TMA members. TMA meaning that the syphilis causes demyelinization rather than the
members will receive registration an inflammation of small arteries vascular pathology noted above. It
notices/packets by the end of the as they enter the spinal cord). was interesting to note that the ratio of
Page 6 The Transverse Myelitis Association
cases to vaccination was 1:50,000 in viruses (Morris and Robbins, since the clinical events are due to
England and 1:5,000 in Holland. Journal of Pediatrics, 1943; blockage of blood flow. Therefore,
England carried out all its smallpox Senseman, Archives of Neurology we utilize the term first introduced by
inoculations in children less than one and Psychiatry, 1945). It was in Paine and Byers (American Journal
year of age, giving rise to the notion 1948 that Dr. Suchett-Kaye, an of Diseases in Children, 1953) of
that “infants are relatively English neurologist at St. Charles ‘transverse myelopathy.’ This is an
insusceptible to post-vaccinal Hospital in London, utilized the all inclusive term which indicates any
encephalomyelitis.” What was term “acute transverse focal injury to the spinal cord,
perplexing then (and continues to be myelitis” (Suchett-Kaye, The whether it be infectious, post-
perplexing today) is that family Lancet, 1948) in reporting a case infectious, vascular, traumatic or the
members got the identical vaccine of acute TM complicating dreaded idiopathic (which is a fancy
(or in many cases today got the same pneumonia. Though not indicated term to mean that we do not know
“cold”), but only one member of the in the initial report, the addition of what caused the myelopathy).
family developed acute myelitis. ‘transverse’ reflected the common David Irani, MD is an Assistant Pro-
clinical finding that patients fessor of the Department of Neurol-
Dr. Frank Ford reported in 1928 reported a ‘band like’ horizontal ogy, Johns Hopkins Hospital. He is
(Ford, F.R.: Bulletin of Johns area of altered sensation on the also the Co -director of the Johns
Hopkins Hospital, 1928) his neck or torso. Below this area, Hopkins Transverse Myelopathy Cen-
hypothesis that many cases of acute sensation was absent or at least ter. Dr. Irani obtained his MD de-
myelitis are post-infectious rather altered and was associated with gree from University of Michigan
than infectious in cause. His bowel and bladder dysfunction (Ann Arbor) in 1987 and completed
reasoning was that in many cases of and weakness. Above this area,
acute myelitis associated with patients were normal. We now Transverse Myelitis-Related
mumps, the patients’ “fever had know by looking at MRIs of the Research at The Johns
fallen and the rash had begun to spinal cord that this reflects Hopkins University School of
fade” when the myelitis symptoms inflammation or injury in a Medicine: Current Status and
began. He proposed the idea, particular area of the spinal cord, Future
therefore, that it was an “allergic” with uninjured nerve cells above Directions
response to the virus rather than the this area.
virus itself that caused the spinal
cord damage. Dr. Ford also noted Since that time, the syndrome of his internship at St. Joseph Mercy
that “neuroparalytic” accidents had progressive paralysis due to spinal Hospital at Ann Arbor. He then came
been noted even dating back to 1887. cord inflammation has been to Johns Hopkins Department of Neu-
Specifically, many patients had known as transverse myelopathy rology as a fellow in Neurovirology
become paralyzed following rabies or transverse myelitis. What is (1988-1990) and completed his resi-
virus vaccination. The paralysis was the difference between dency training in Neurology. In 1993,
not found to be due to the rabies ‘myelopathy’ and ‘myelitis?’ Dr. Irani joined the faculty of the De-
virus itself, but rather to the repeated Technically, any ‘…itis’ means partment of Neurology at Johns Hop-
inoculation of patients with brain ‘inflammation’: ‘Arthritis’ means kins Hospital and has focused his re-
tissue carrying the virus. Dr. Ford inflammation of the arthus (joint); search activities in neuroimmunology
was not aware of the functions of the ‘sinusitis’ means inflammation of and neurovirology. He has been ac-
immune system, but we would the sinuses, for example. tively involved in studies of viral in-
conclude today that the immune Inflammation means that the fections of the CNS and leukocyte
response generated against the brain immune system is activated and trafficking.
tissue then attacked the spinal cord recruited to the area, potentially Transverse myelitis (TM) remains a
and caused the paralysis. causing damage. But several of difficult problem from a variety of
the cases we see today may be standpoints. Since it occurs relatively
Several cases were then reported due to vascular events like infrequently, even subspecialist
over the next two decades showing thrombosis, hemorrhage or dural neurologists may have little practical
that though Dr. Ford may be right in AV fistulas (abnormal collection experience with the disorder. Since it
some instances, several infectious of blood vessels on the surface of may have many underlying causes
agents can directly cause acute the spinal cord). These are not (only some of which are uncovered at
myelitis, notably measles and rubella truly inflammatory conditions the time of the acute illness),
The Transverse Myelitis Association Page 7
predicting the long-term clinical laboratory techniques. We have biopsies on patients with acute TM is
outcome for an individual patient can already found that certain proteins both impractical and potentially
be difficult. And since we are still which normally reside within dangerous, we do not have access to
quite limited in our capacity to nerve cells of the spinal cord are such samples. To circumvent this
promote meaningful neurologic released into the CSF of some limitation, we have developed a
recovery once the inciting event has patients with acute TM. Detecting model of TM in experimental
subsided, physicians may have few these proteins are clues to us that animals caused by direct viral
treatments to offer their patients the underlying cause of TM in infection of the spinal cord. This has
during later stages of disease. In the those cases is quite severe (the allowed us to study how and why
face of such obstacles, one might be nerve cells are actually being nerve cells degenerate in this
tempted to conclude that conducting damaged and are releasing these situation, and because affected
research on TM is an impossible proteins). As a result, this assay animals become paralyzed to varying
task. Indeed, the disorder has been may serve to help us predict how degrees, it has provided an excellent
relatively neglected by the much function a given patient will model system to test the effects of
biomedical research community, eventually recover during the new therapies that might eventually
perhaps for some of the very reasons earliest stages of TM. We also show promise in humans. Thus, we
described above. Nevertheless, my plan to look for alterations in the are now trying to establish the
colleagues at Hopkins and I have immune systems of affected experimental conditions under which
initiated a comprehensive research patients that may have made some stem cells can be implanted into the
effort to study TM in both the clinic of them susceptible to TM. We spinal cords of paralyzed mice and be
and the laboratory. Our goal is to suspect that part of the coaxed into resprouting new nerve
take advantage of new scientific susceptibility of certain patients to connections. We have also begun to
developments in the fields of TM resides in the unique way that figure out how to interrupt some of
neuroscience, virology, and their immune systems respond to the signals that the virus uses to
immunology to better understand certain infections. To try and trigger the death of infected nerve
TM. We hope to make advances that promote delayed recovery in cells in the spinal cord. We hope this
will translate into new diagnostic and patients well after their acute TM, may lead to the development of novel
treatment applications which can be we plan to test the effectiveness drugs that could exert the same effect
used in the hospital and the clinic in of drugs that increase the in humans. While we realize that the
the near future. transmission of electrical signals use of laboratory animals in
in the remaining intact spinal cord biomedical research is highly
One approach we have taken in our nerve cells. On the horizon may controversial, there simply is no
research is to directly study TM as it be the potential to grow nerve other way to answer the kinds of
occurs in humans. There are several cells or precursors that turn into questions we are asking. Overall,
important issues we are trying to nerve cells (called stem cells) in while research progress is slow, we
tackle: enhancing our understanding culture dishes for implantation feel that we have already made some
of the underlying causes of TM, into the spinal cords of patients important observations and have
improving our ability to predict a who have had TM. In this setting, plans to expand these efforts as
patient’s eventual clinical outcome in it is hoped that the implanted cells future research support becomes
the earliest stages of his or her can re-establish some of the available.
disease, and testing whether there connections that were damaged
might be ways to improve neurologic during the acute phase of the Despite some early optimism, it is
function well after the acute illness illness and promote some degree fair to say that TM-related
has occurred. One hypothesis we are of clinical recovery. The biomedical research is still in its
examining is that many cases of TM groundwork experiments for such infancy. Nevertheless, I believe that
are caused by viral infections that an approach are underway in our laboratory efforts, in particular,
develop in the spinal cord; viruses experimental animals (see below). will bear fruit in the foreseeable
that go undetected because the future. As clinicians in this field, it is
diagnostic tests needed to identify Successful disease-related the explicit goal of my colleagues
them are not available. As a result, biomedical research is often best and I to translate our laboratory
we are looking for novel viruses in accomplished through the direct progress rapidly, but safely, to
the cerebrospinal fluid (CSF) of study of affected tissue. However, therapeutic trials in human patients.
patients with acute TM using new since performing spinal cord We are actively working to increase
Page 8 The Transverse Myelitis Association
awareness and support of our brief question and is without the excitement phase. There is also a
research efforts. benefit of a complete history or an reflex component to erection which
examination. Any decisions does not require input from the
Joanne Lynn, MD is an Assistant regarding diagnosis or treatment brain. Local stimulation to genitalia
Professor of Neurology at The Ohio should be made in consultation or even a stimulus such as a full
State University. She is on the staff with your personal physician who bladder can lead to activation of a
of The Ohio State University is best suited to make appropriate reflex arc involving the lower part of
Multiple Sclerosis Center and has medical recommendations for the spinal cord (sacral part) resulting
special interests in clinical research you. in erection. Obviously, complete
on the treatment of MS. Dr. Lynn transection of the spinal cord will
serves on the Medical Advisory Q. If a person has bladder and prevent autonomic impulses from
Board of The Transverse Myelitis bowel function return, is this coming from the brain to the lower
Member Questions and any sign that sexual functioning cord. Injury to the spinal cord in
Answers from Joanne Lynn, could also return? What causes inflammatory diseases such as TM
MD: Issues of Sexuality sexual dysfunction from spinal or MS are often partial and may
Surrounding TM injury? Is sexual function an interfere with these descending
Joanne Lynn, MD and Leslie area of treatment that should be pathways or ascending nerves
Moore, RN discussed with a patient's bringing sensory information from
neurologist? the genital areas to varying degrees.
Bowel and bladder function is also
Association. If you have questions This question brings up the bigger mediated by transmission of
for Dr. Lynn regarding the topic of sexuality in TM. Sexual information through the spinal cord
Transverse Myelitis condition, please function with or without spinal and improvement in this function
send those to Sandy Siegel; we will cord injury is a very complicated may or may not be associated with
attempt to have your questions issue and an important facet of life improvement in sexual function; but
addressed in a future newsletter. for both men and women. Much it is a hopeful sign.
of what is included in this article
Leslie Moore, RN graduated from comes from writings and studies Specialists interested in sexual
The Ohio State University in 1986. of people with sexual dysfunction dysfunction break it down into
She worked in Neuro Intensive Care due to multiple sclerosis (MS). several categories: primary,
for seven years and through her There is a significant body of secondary and tertiary sexual
work with spinal cord injured pa- literature regarding the mechanics dysfunction. Primary sexual
tients, the interest in bowel, bladder and psychological ramifications of dysfunction is the alteration in
and sexuality issues began. She then sexual dysfunction in MS, which sexual feelings and response that is
worked in the Interventional Radiol- also affects the spinal cord. directly related to the neurologic
ogy Department for two years. To People with TM should refer to spinal cord injury. This may include
expand her role with education of some of the MS references listed decreased libido, reduced or
patients, she took a position at the at the end for more detailed and unfamiliar or unpleasant genital
MS Center at Ohio State and as a helpful information. sensations, decreased vaginal
faculty member of the Peer Support Erection may occur due to lubrication, problems in achieving
Program sponsored by Berlex. Les- psychogenic stimuli (such as or maintaining an erection, and
lie has moved to Wisconsin where visual stimuli or fantasy). In this reduced ejaculatory force or ability
she has continued as a faculty mem- situation, nervous impulses travel to ejaculate, and decreased orgasmic
ber with the Peer Support Program in the autonomic nervous system response. Secondary sexual
and works in the local ICU. down from the brain, through the dysfunction results from the various
spinal cord to the lower thoracic symptoms that may be caused by
The following information is offered and upper lumbar levels. Fibers TM, including fatigue, spasticity
as a general response to questions then leave the spinal cord and (increased muscle tone), bladder and
related to Transverse Myelitis and is travel to blood vessels in the penis bowel problems, and pain. Tertiary
not to be construed as a specific directing vascular engorgement in sexual dysfunction is used to
medical recommendation for any men and vaginal/clitoral describe effects caused by
individual. This information is based engorgement and lubrication in psychologic responses to the effects
on the information provided in a women. This is part of the of TM.
The Transverse Myelitis Association Page 9
and there is significant danger of master this technique. There is a high
Primary sexual dysfunction heart attack or other cardiac rate of success for this type of
problems including death in treatment. Complications include
Decreased libido is a difficult patients with heart disease. priapism which is a painful prolonged
problem which can be stressful to Vibratory stimulation may be erection with risk of damage to the
both the person with TM and his/her used to enhance erections and to penis itself. This occurs
partner. Often changes in libido may assist in stimulation towards approximately 0.8 to 1.5 % of the
be due to changes in emotional state orgasm. time and requires urgent treatment by
caused by the response to illness and a urologist. Repeated use can cause
perhaps decreased independence if Vacuum erection devices have fibrosis or scarring within the penis
neurologic impairment is severe. been used successfully in spinal tissue itself in a small number of men
Individual and couples counseling is cord injury and in patients with (0.5%).
often helpful to explore feelings and multiple sclerosis. These consist
improve communication. Efforts of a plastic tube that is placed Another option for treatment of
should be made to determine if there over the penis. A pump is used to neurogenic erectile dysfunction due
is a component of underlying pump air out of the tube, creating to TM is the use of penile prosthesis
depression and this should be a vacuum that draws blood into or implants. There are several types
addressed. the penis (didn’t someone say of prostheses including inflatable and
nature abhors a vacuum?). A semirigid. One problem with these
Evaluation of male sexual constricting ring is then slipped implants is that they may become
dysfunction over the base of the penis to infected as may any foreign implant
prevent blood from returning to such as an artificial joint (estimated
The initial step in the evaluation of the heart, thereby helping in rate 1.2 to 1.8%). At least one study
male sexual dysfunction involves maintenance of the erection. has shown that men that choose this
significant sexual counseling. Some men find this approach option have sex more frequently and
Testing to determine if erectile uncomfortable or painful, or with higher personal and partner
function is intact may be useful. report that their penis is cold. satisfaction than men on injection
Urologists may use Doppler Studies Some feel that this approach therapy.
to assess blood flow in the penis and seems less natural. This approach
monitor for nocturnal penile also requires a significant amount Evaluation of female sexual
tumescence. There are several of manual dexterity. However, dysfunction
therapies available to assist or others use this relatively
augment penile erection. The newest inexpensive approach with good Decreased genital sensation is a
is oral sildenafil (Viagra). Studies in success. major problem that contributes to
the traumatic spinal cord injury sexual dysfunction in TM. This is
population have shown that a Another approach towards often the cause of sexual dysfunction
majority of patients have success improvement of erectile function for women and there are fewer fancy
when sildenafil is used in is that of introduction of gadgets or treatments than are
combination with vibratory vasoactive medications into the available for male sexual dysfunction.
stimulation. Sildafenil 50 to 100 mg penis. Vasoactive means a Treatment of decreased genital
is taken one hour before sexual medication that has effects on the sensation often requires exploration
intercourse and results in improved blood vessels. One such with different and more intense
erectile function when combined medication, prostaglandin E1, stimulation both in the genital area
with psychologic and/or tactile may be introduced as a and exercises to allow a person to
stimulation. This drug dose has suppository into the penile learn a wider range of sexual
some known side effects which opening of the urethra. Other pleasuring outside of the genital area.
include nasal congestion, headache, medications, such as another form Increased use of oral stimulation of
flushing, and heartburn in of prostaglandin E1 or papavarine the clitoris may be useful. Use of a
approximately 6 to 18% of patients. may be injected right into the vibrator, which can be purchased at a
In addition, this drug must never be shaft of the penis. Obviously, one medical supply store, may also
taken in combination with nitrates must overcome the natural fear of enhance genital sensation and
which are drugs that are used to such an objection but many men increase ability to have an orgasm.
dilate the blood vessels of the heart and/or their sexual partners do There are many different types of
Page 10 The Transverse Myelitis Association
vibrators and some strap-on to occur during female orgasm. The tightness) in the legs or genital areas
deliver stimulation to the clitoris Kegel exercise is performed by that interfere with sexual function.
directly without interfering with alternatively tightening and Sometimes just being rubbed or
intercourse. Stimulation to other relaxing this muscle (which may stroked by one’s lover might evoke
erogenous zones such as breasts, lips, be identified as the muscle which pain rather than pleasure. Various
neck, ears may be useful to heighten stops and starts urine flow medications may be tried to decrease
excitement and pleasure and to midstream). these painful sensations called
enhance the likelihood of orgasm. dysesthesias, including Amitriptyline
Increasing the amount of nipple Secondary sexual dysfunction (Elavil), Gabapentin (Neurontin), and
stimulation may increase vaginal Carbamazepine (Tegretol). This is
lubrication and uterine contractions Many people with TM find their another situation in which couples
which could increase ability to reach sex lives hampered by other will benefit from working together to
orgasm. One tool used in sexual symptoms related to the spinal map out body areas in which
counseling is to request that the cord injury. One example might stimulation causes pain or pleasure.
couple work on making a map of be that a woman or man would Experimentation with different
personal erogenous zones outside of find it difficult to relax if he/she positions for sexual intercourse may
the genital area. This requires that was always worrying about also minimize problems associated
the couple talk about this and work whether urinary/fecal with fatigue, spasticity or painful
together, devoting time to finding incontinence would occur and dysesthesias.
new ways to pleasure each other. how his/her partner would react
There is often benefit to increasing to this. There are things that can Tertiary sexual dysfunction
non-erotic stimulation such as be done to establish a good bowel
handholding, backrubs, etc. regimen to make this less likely. Tertiary sexual dysfunction is a
Reviving romantic gestures such as A bowel program can be complicated area in which
gifts of flowers, hugs, etc. may also established by choosing a specific psychological responses to TM may
help to stimulate libido. time each day to have a bowel impair sexual functioning. Weakness
movement, usually after a meal. or other dysfunction may lead to
Decreased vaginal lubrication despite Increase fiber to increase softness changes in self-esteem and self-
sexual stimulation can be caused by of stool. For more persistent image that affect sexual performance.
spinal cord injury and can contribute bowel problems a program Both an individual with neurologic
to pain during sexual intercourse. including a suppository each day dysfunction and/or the partner may
Water-soluble lubricants such as may be needed. Simply perceive that disability makes the
Replens are available to deal with remembering to void the bladder person with TM less attractive or less
decreased vaginal lubrication. K-Y before sexual activity is sufficient masculine or feminine. Some
jelly may also be used. Vaseline to prevent accidents for some; partners who give significant care in
should not be used because it is not urinary self-catheterization can the form of dressing, transferring,
water-soluble and may cause urinary help others to ensure that the bathing, urinary catheterization, etc.
tract infections. Women should also bladder is empty. may have difficulty switching gears
be aware that vaginal lubrication from the role of caregiver to that of
may decrease as a normal response Fatigue is a problem for many; lover. Frustration, resentment, and
to decreased estrogen levels during planning the time of sexual fears of abandonment may be
menopause and vaginal tissues may activity for periods of the day unspoken emotions that hinder the
thin. Hormone replacement therapy when energy is highest can be expression of love and sexuality.
may be beneficial for sexual function helpful. Obviously, painful leg Open communication between
for women at this stage of life as it spasms will detract from sexual partners and psychotherapy are the
may reverse some of these age- activity and can often be reduced best approaches to deal with these
related changes. by proper medications (taken two problems.
hours prior to intercourse) or by
Some sexual therapists recommend working gentle stretching into the Perhaps the most important thing is
Kegel exercises to strengthen and foreplay period to reduce that a couple approach sexuality with
increase responsiveness of the spasticity. Some people with TM an open mind and a willingness to try
pubococcygeus muscle in the pelvic develop painful sensations (such new things. Some people with spinal
floor. Contractions of this muscle as tingling, burning, stabbing, cord injury think along the lines of
The Transverse Myelitis Association Page 11
“If I can’t have sex the way I used to, Answers to Your Questions. Paul 2823.
forget it!” Sexual therapists remind W. Brookes Publishing Co.
us that our society tends to view sex Baltimore. 1997.
as a goal-oriented activity directed
towards achievement of orgasm. Foley FW and Werner MA.
While this is, of course, a worthwhile Sexuality in Kalb RC. Multiple
goal, it may be helpful to refocus on a Sclerosis - The Questions You
broader range of sexual activities that Have, The Answers You Need.
bring physical and psychological Demos Vermande, New York,
pleasure and wellbeing. A 1996: pp. 223-247. (This is an
willingness to try new approaches to excellent chapter on sexuality in Thinking About Return to
romance and sexual stimulation will MS. It is set up as common Work after Severe Injury
open new doors to positive questions followed by detailed and Illness
expression of affection and sexuality Denise Rabold, Ph.D. and
answers. Highly recommended).
and this will have benefits for the James A. Arnett, Ph.D.
relationship beyond the bedroom. Geiger RC. Neurophysiology of
Sexual Response in Spinal Cord
It is absolutely appropriate to discuss Injury. Sexuality and Disability. Drs. Rabold and Arnett have been
sexual function after spinal cord Vol 2 (4). Winter 1979. writing a series of articles for the
injury with your neurologist. TMA Newsletter on the process of
However, in truth, very few Kalb RC and LaRocca NG. adaptation to the effects of severe in-
neurologists have any sort of formal Sexuality and Family Planning in jury and illness. Dr. Arnett is a fac-
training during their residencies in Halper J, Holland N. ulty member in the Division of Reha-
sexual function or spinal cord injury. Comprehensive Nursing Care in bilitation Psychology, Department of
Therefore, forgive your neurologist if Multiple Sclerosis. Demos Physical Medicine and Rehabilita-
he or she is inexperienced and unable Vermande. New York, 1997: pp. tion at The Ohio State University.
to tell you much and try to work with 109-125. Dr. Rabold has a private practice.
him/her to address these various Rehabilitation Psychology is a spe-
issues. You may also find assistance Kaplan HS. The Illustrated cialty of psychology that serves indi-
from seeking out neurologists, Manual of Sex Therapy (2nd viduals with disabilities as they ad-
nurses, urologists, sex therapists or edition). New York: Brunner just, adapt, and progress toward
physiatrists who care for patients who Mazel Publishers, 1987. healthy and satisfying lifestyles.
have experienced spinal cord trauma Psychologists working in rehabilita-
or multiple sclerosis, especially at a Neistadt ME, Freda M. Choices: tion use education, remediation,
large hospital, rehabilitation center or A Guide to Sex Counseling with counseling, and advocacy to mini-
university center. The National Physically Disabled Adults. mize effects of impairments due to
Multiple Sclerosis Society (1-800- Malabar, FL: Robert E. Krieger disabling medical conditions and
FIGHT MS) also has some literature Publishing, 1987. promote wellness through optimal
on sexual dysfunction and MS which psychological and social functioning.
is applicable to TM. The Foley and Werner chapter in Dr. Arnett has a broad base of ex-
the Kalb book also lists several perience with a range of disabling
References: catalogue sources for sexually conditions, and specializes in evalua-
oriented materials not specifically tion of mental performance and ad-
Derry F, Gardner BP, Glass C et al. targeted towards people with TM, justment issues associated with im-
Sildenafil (Viagra): a double blind, but potentially helpful: paired brain function. Dr. Rabold is
placebo controlled single dose two licensed as both a psychologist and
way cross-over study in men with Eve’s Garden International, Ltd. speech-language pathologist. She
erectile dysfunction caused by 1-800-848-3837. specializes in counseling and cogni-
traumatic spinal cord injury tive remediation for work, school,
(abstract). J Urol 1997; 154:181. Good Vibrations, Inc. 1-800- and community re-entry after ac-
289-8423. quired brain injury.
Ducharme SH and Gill KM. As noted in our second article about
Sexuality after Spinal Cord Injury: Lawrence Research 1-800-242- adjustment and adaptation following
severe disabling injury and illness
Page 12 The Transverse Myelitis Association
(Dealing With Change. TMA when it appears return to the old advocacy to assist the individual in
Newsletter, Volume 2, Issue 2), the job will not be possible because realizing their potential. It is often
adaptation process involves moving of the effects of illness. We must important to work with a professional
beyond a focus on losses. This is a also make the assumption that the who can view the case holistically,
difficult process, and unique to the effects of the illness are stabilized giving consideration to impairments,
individual. It is often very difficult and relatively permanent. potential, work demands, and
to move the focus of attention to the employer demands. The
future when so much appears to have Returning to the Old Job Rehabilitation Psychologist will
been taken away. Adapting to crisis consider individual perceptions of
involves restoring emotional balance, In many cases, a person with new job demands and concerns from the
dealing with effects of illness, physical impairments can return perspectives of both the employee
establishing and maintaining to a formerly held job, with and the employer. Contact with the
relationships, and planning for the reasonable accommodations. employer is often made to obtain a
future. Restoring and maintaining Work involving primary activities job description, and possibly to visit
emotional health must involve of thinking, reasoning, problem and evaluate conditions at the job
dealing with these adaptive tasks. solving, and communicating fall site.
Moving forward toward a more into this category. The first step
functional, independent, and in the return-to-work process is to Changes in job duties are
productive lifestyle means moving determine whether or not it is increasingly a factor in return to
away from the illness and its effects. possible to perform the former job work. In our experience, a person
Time is an important healing agent; with present functional status. who is off work for three months or
although the time required to more is very likely to find significant
effectively manage these adaptive Returning to a former job and changes have been made to the job
tasks varies greatly among work environment can be they left. Change compounds the
individuals. frightening and possibly difficulty of returning to work. The
overwhelming. The process can individual not only must manage
Work, whether for pay or not, is a be simplified by mobilizing a some level of disability, but must
major part of life. Regular support system to assist with also deal with a job that has changed
involvement in some productive education, problem solving, to some degree.
activity brings structure and meaning advocacy, and implementation of
to life, along with a feeling of needed accommodations. Following a severe and protracted
control. To work means to be on a illness, a gradual return to work is
schedule, which in turn leads to A first step in the return-to-work always recommended. Returning to
planning ahead for activities outside process may be a referral to the the old job after an extended absence
of work. Work also brings human Bureau of Vocational can be an emotional and physical
interaction, which is stimulating and Rehabilitation (BVR). BVR is a “shock.” In spite of efforts at
essential to basic human needs. For government-funded agency whose physical conditioning, most
those persons who were employed goal is to assist individuals with individuals returning to work after a
before illness onset, the return to disabilities in returning to gainful long absence find the effort very
work helps greatly to restore a sense employment. Services provided exhausting, both physically and
of normalcy, competence, and self- include evaluation, training, work mentally. Useful guidelines involve
worth. adjustment, and identification of a return-to-work schedule, which
modifications and includes part-time employment for a
The effects of illness vary greatly. accommodations that may be period of two or more weeks. Plans
Consideration of the return to work needed to facilitate the vary greatly; and as an example, the
process must allow for great individual’s success. initial workweek may involve two to
variations in severity of physical four hours per day, or four hours
impairment, and the physical As a second step, the assistance of every other day. Of equal
demands of certain jobs. We will a Rehabilitation Psychologist importance to hours per day, is the
attempt to address two rehabilitation should be considered. This definition and assignment of
processes: First, return to the same professional is trained to provide responsibilities. Most jobs, no matter
job held before the disabling illness; needed education, remediation, how well they are described on
and second, considerations of work adjustment counseling, and paper, involve many, often small,
The Transverse Myelitis Association Page 13
undefined or poorly defined duties. a useful way of exploring interests.
These “as needed” duties can be time Briefly, Holland’s theory divides Most people’s interests are best
consuming and can easily interfere all jobs into six types (Holland described by three of the Holland
with early return success. A clear refers to Occupational work environments; although, there
description of work assignments is Environments): Realistic, may be one type that is strongest. As
helpful during the return-to-work Investigative, Artistic, Social, an example, a person with a “Holland
phase. Our practice is to always Conventional, and Enterprising. Code” of S-E-C (Social, Enterprising,
attempt to place the returning As the theory goes, these six Conventional) may find interests in a
individual in a situation where they environment descriptors can be large number of jobs that are assigned
can experience success and a feeling used to describe any job. Going a to one or more of these three
of control from the very start of the step further, by examining the environments. Working with a
return process. It is not productive interests an individual has in Vocational Counselor or
and often harmful to have the different jobs, it is possible to Rehabilitation Psychologist can be
returning individual experience a describe that individual’s interests helpful in considering work interests
failure in trying to meet work in terms of a “Holland Code” and options. Again we encourage the
demands in a job they once did well. made of the three strongest use of agencies such as the Bureau of
A feeling of success and a feeling of Occupational Environments. Vocational Rehabilitation.
“I can do more” is always preferred
to the experience of anxiety about The Holland occupational We have found many inspirational
failure and questions of performance. environments offer a useful and comments in the “In Their Own
interesting way of thinking about Words” section of the TMA
Considering New and Different work and work interests. As job Newsletter. Two of these appear very
Work descriptors, the occupational relevant to this article: “[Adapting
environments work this way: meant] Coming to terms with the fact
In many cases the effects of illness Realistic jobs are characterized by that it is unlikely that I‘m going to
make it impossible to return to the active behavior, interest in achieve the goals and aspirations that
formerly held job. Often jobs activities requiring motor I had set for myself in the future,
involving a high demand for physical coordination, skill, and physical especially in terms of things like
labor will no longer be possible. The strength. Truck Driver is a good work.” Success may involve setting
individual must now consider other example of a “realistic” new goals, and considering new
options including exploration of occupation. Investigative jobs are opportunities. It is vital not to close
opportunities and investigation of characterized by thinking, doors. Develop a support team by
their interests and abilities. The organizing and understanding. getting connected with friends and
individual with new physical These jobs are well represented others who can help. We must also
limitations may need to think about by chemists, biologists, and recommend “supportive group”
new and different occupations, many laboratory technicians. Artistic activities involving others with
of which were never considered jobs involve self-expression and similar experiences. As another
before illness. relating to others through artistic TMA member writes, “I cannot state
expression. Social jobs involve strongly enough the need for a
We have found that the career working with others in a teaching positive attitude.”
typology theory of John Holland is a or helping way, as do Teachers,
useful way of describing and Social Workers, and Therapists. Reference:
thinking about work and work Enterprising jobs require verbal
interests (Osipow, 1983). Holland’s skills and influencing others, as Osipow, S.H. Theories of Career
theory has been widely researched with sales and politics. Development. (3rd Ed.) (1983). P
and offers an excellent way of Conventional jobs involve Englewood Cliffs, N.J: Prentice-Hall.
evaluating career interests. A career following procedures, rules, and
interest inventory, The Self-Directed regulations. Bookkeeper and
Search, which is based on Holland’s Bank Teller are examples of
theory and used by Psychologists and conventional job types.
Vocational Counselors, is a very
commonly used device for helping As noted, the Holland theory is a Robin Sopher is a Physical Therapist
explore work interests. useful way of describing jobs, and at The Ohio State University Outpa-
tient Rehabilitation Department. She
Page 14 The Transverse Myelitis Association
number of continuing education vidual with TM, but this does not
Why a Person with TM Should courses every two years.
Consider Physical Therapy change in an individual with a com-
Robin Sopher plete SCI. However, an individual
When a therapist initially sees a with an incomplete SCI may have
client, he/she performs an initial similar changes. The difference be-
evaluation. This consists of a tween SCI and TM is the method of
received her BS degree in Physical thorough exam of medical his- injury to the spinal cord. A SCI is
Therapy from The Ohio State Uni- tory, current medications, pain, usually the result of a traumatic inci-
versity College of Allied Medicine. client goals, muscle strength, dent like a car accident, fall, gunshot
She has participated in prosthetic range of motion of the joints, gait wound, etc. and TM is caused by in-
and orthotic clinics at both the (walking), posture and structural flammation of the spinal cord.
Medical College of Ohio and The assessment, balance, sensation,
Ohio State University. She has spe- specialized tests, functional abili- An individual with an incomplete
cial interests in orthopedic struc- ties and basic neurological test- SCI and an individual with TM pre-
tural assessments and bracing/ ing. This tells us the client’s sent with similar abilities. Both of
orthotics. She works with clients di- baseline so that we can assess these diagnoses, however, have vari-
agnosed with either orthopedic and/ progress during the duration of ous types of clinical presentations.
or neurological problems. treatment. We continue to re- This means the return of strength and
evaluate the above information to sensation in various combinations in
One may ask; what is a physical advance the difficulty of their the body. There are no two people
therapist and what could a physical program. that present with all the same symp-
therapist do for me? A physical toms. It depends on what areas and
therapist is a specialist trained to Physical therapists work with cli- what levels of the spinal cord are in-
evaluate and treat neuromuscular ents that have been diagnosed jured. The physical therapist’s gen-
and musculoskeletal disorders. with transverse myelitis (TM) in eral plan is the same for both of these
Physical therapy means the evalua- various settings. One may ini- clients, to continue to strengthen and
tion and treatment of a person by tially see a physical therapist (PT) maximize function of whatever the
physical measures and the use of in acute care (hospital), inpatient client has remaining. Individualized
therapeutic exercises and rehabilita- rehab (when the client is still goals will be set from that initial
tive procedures for the purpose of staying in a rehab center), outpa- evaluation. Some individuals will re-
preventing, correcting, or alleviating tient rehab (when the client has turn to walking, some may not. Let’s
disability. As physical therapists, been discharged to home) or say a person gets strength back in
our goals are to strive to train and home health rehab (if the client is most of the muscles on one side of
teach each client to be as independ- considered home bound). the body, but the foot on that side is
ent as possible. We may use modali- weak and limits their ability to pick
ties (various machines) to relieve or When one reads about the reha- up their foot without falling. We
minimize pain and to try to optimize bilitation for a client with TM, it may choose to use a brace at that
strength gains. We make our pa- may be compared to the rehabili- point to assist those muscles in which
tients work hard, not because we like tation of a client with a spinal the strength does not return, which
to see people sweat, but rather the cord injury. This is because the allows the person to still walk safely.
fact that we want the clients to maxi- resulting physical effects are Again, the goals of physical therapy
mize the quality of their lives. To similar. A spinal cord injury are to make the client as independent
become a physical therapist, one (SCI) can be categorized into a as possible.
must complete two years of under- complete or incomplete SCI. A
graduate work, apply to a physical complete means the patient does Because a physical therapist is highly
therapy program and then undergo not have sensation or motor func- trained in gait evaluation, he/she is
two to three years in a physical ther- tion including sacral segments of able to determine if a type of bracing
apy program. This will give a thera- the spine. We may see this with for the lower extremities would be
pist a BS or MS degree depending severe cases of TM or in the be- appropriate. He/she can fabricate a
on the length of the program. Some ginning stage of TM. Usually temporary brace to help during gait
therapists may go on to achieve one within 1-3 months, you may be- training, but an orthotist fabricates a
or more specialist degrees. We are gin to see these strength and sen- more permanent brace. All the deci-
then required to attend a specific sation deficits change in an indi- sions about bracing must be approved
The Transverse Myelitis Association Page 15
by one’s physician. A therapist usu- the individual has. Aquatic ther- one may progress through the use of
ally tries to delay recommending a apy is very beneficial in the be- various assistive devices. They may
permanent brace for the feet or legs ginning, because the buoyancy of start with a walker (one with wheels
until the end of therapy. The reason the water can be used in ways to or no wheels) and progress to a quad
this is done is because the client’s assist the client’s movements. cane (four-prong cane) or straight
strength may change. When select- Buoyancy is a property of water cane. Some clients may benefit more
ing a brace, one must feel fairly con- that exerts an upward force. This from loftstrand crutches (forearm
fident that the current strength of the will make the limb feel lighter. crutches). The amount of bracing
area being braced has reached a pla- There will be exercises the client needed for the legs will also help to
teau or will not be making any im- can do in the water that he/she determine what type of assistive de-
mediate dramatic changes. For ex- cannot do on land. Walking can vice will be achievable.
ample, if a client started out with sig- also be facilitated earlier in the
nificant weakness upon the initial water as opposed to land therapy. Part of inpatient and outpatient reha-
evaluation, one may recommend The physical therapist will ensure bilitation is to help orient the client
long leg braces (braces extending up that there are components of both back into the community with the
to the thigh area) at that time. How- land and water therapy to ensure new strategies they have learned.
ever, during therapy this client’s optimal carryover regarding func- Tasks that were not given any con-
strength may change to the point tion. One should be prepared for sideration prior to the injury, at first,
where at the end of therapy he may changing levels of assistance seem like overwhelming obstacles.
only need an AFO (a brace extending needed by others. In the begin- Activities such as grocery shopping,
to just below the knee). Therefore, ning, a lot of assistance from your going to a restaurant, or going to a
the effectiveness of the brace de- therapist may be needed to move mall may be community activities in
pends on an overall evaluation of the and this should gradually de- rehab. This lets the physical thera-
client’s abilities and an observation crease during your therapy, de- pist evaluate the client’s ability to
of his/her progress over time. pending on your potential for re- walk or propel their wheelchair com-
covery. munity distances, cross the street in a
The treatment plan is different for safe amount of time, negotiate curbs/
each client. The treatment plan re- Land therapy or therapy in the sidewalks/ stairs/ inclines, open
fers to what the client will be doing gym/community will progress as doors, negotiate shopping carts, pub-
each time he/she comes for a session one’s strength progresses. lic restroom accessibility, elevators,
and the overall strategy to reach the Physical therapists are known to escalators and any other community
patient’s individual goals. The plan always make exercises harder obstacle available. This lets the cli-
is developed based on the initial when they become easy! This ent try these tasks with the safety of
evaluation of the client’s abilities. challenge to the muscles is neces- their therapist if they may need help
Strength is a major factor in deter- sary for strength gains. Some ex- or direction. The chance to do this is
mining what types of treatments are ercises may not seem like what a large step toward gaining a sense of
appropriate. Strength is classified on one is used to, therefore the thera- independence.
a scale of 0-5. Zero meaning that pist will usually explain their ra-
there is no palpable or visual con- tionale for his/her creative exer- Another area in which a therapist can
traction of a muscle and five mean- cises. These creative exercises be of assistance is to decrease or alle-
ing that the therapist cannot break are not only to add some fun to viate pain. Pain may manifest itself
the client’s contraction of the mus- therapy, but most importantly to in various forms in a client with TM.
cle. In between, one through four, add balance training, multiple si- It could be joint or muscle pain in
are various intensities of muscle con- multaneous muscle function, co- which stretching may help. It could
tractions. The treatments may ini- ordination training, etc. The cli- be due to faulty posture in a wheel-
tially start with teaching strategies ent may do work with swiss balls, chair or while sleeping and the thera-
for basic self-care and daily living balance machines, cones, thera- pist can recommend changes. If it is
needs. For example, learning to roll bands, traditional weights, paral- due to nerve pain, a tens unit may
over in bed, sit up, transfer from the lel bars, rocker boards, etc. Elec- help. Sometimes a previous problem
bed to a chair, sit to stand, transfer tric stimulation machines may be can be exacerbated by the current
for bathing and toileting, etc. An ini- used to help facilitate stronger muscle weakness and types of sup-
tial exercise program should be initi- muscle contractions during the port may be recommended. Physical
ated for whatever level of strength exercises. During gait training, therapists also use machines to heat
Page 16 The Transverse Myelitis Association
tissues to facilitate stretching and Occupational Therapy from Medi- not easy to describe. Perhaps the
help with inflammation and the pool cal College of Ohio in Toledo. best way to explain the differences
can even be used to decrease pain Theresa has been employed at between physical and occupational
secondary to the warmth of a thera- The Ohio State University Medi- therapy is to offer an example of our
peutic pool. cal Center, Dodd Hall for seven approaches in the rehabilitation
years. She is currently the Spinal process.
I, myself, have seen individuals with Cord Injury System of Care Team
various severities of TM. I have Leader. She facilitates program- Should an individual have a
seen clients that needed assistance traumatic event, which has left them
for self and home tasks at the end of Why a Person with TM
immobile, and were they fortunate
therapy. I have seen individuals that Should Consider
enough to be able to work on the
regained enough strength to function Occupational Therapy
skills of walking, a physical therapist
Theresa Frasca Berner,
independently, but needed the use of would focus on the process of getting
MOT, OTR/L
bracing and/or a wheelchair. I have them to walk. An occupational
also seen individuals that were able therapist would enter this process
to return to walking and independent and would take it one step further.
living. Each stage is difficult for the ming for individuals with Spinal The occupational therapist would
client, because they are never sure Cord Injuries across the contin- perform an assessment of what the
exactly what they will get back and uum and ensures that their needs individual’s lifestyle had been before
they are forced to find new ways to are met from a therapy perspec- the traumatic event. The
do previous tasks. If someone will tive. Theresa also coordinates and occupational therapist would
need to use a wheelchair, even part runs a wheelchair seating and po- determine what strategies need to be
of the time, a team of experts should sitioning clinic with Lisa Fugate, in place and what skills need to be
recommend it. The posture one has MD. Theresa is very active in developed in order for the individual
in a wheelchair can influence their community organizations and is a to go home. Additionally, the
skin, breathing, eating, comfort, strong advocate for community occupational therapist would
proper joint function, proper muscle reentry, as well as adapted sports. evaluate the strategies and skills that
function and level of community would be required for the individual
function. Occupational therapy is a health to return to the roles that had been
and rehabilitation profession taken away from them or disrupted
What would happen to someone with designed to help people regain or diminished due to the traumatic
TM if they did not receive physical and build skills that are important event. Both physical therapists and
therapy? They would not maximize for health, well being, security, occupational therapists work with a
their potential for recovery of func- and happiness. Occupational person to help restore independence.
tion. It could be compared to an ath- therapists work with people of all A physical therapist will focus on the
lete without a coach. A therapist is ages who, because of physical, person’s physical abilities in
trained to evaluate and recommend developmental, social, or regaining independence; an
appropriate treatment during the en- emotional deficits, need occupational therapist will work on
tire duration of recovery. Something specialized assistance in learning strategies and skills to assist
as minor as an ankle becoming tight skills to enable them to lead restoring the individual’s
while you are in a stage of relative independent, productive, and independence in a more holistic
inactivity can become major if it is satisfying lives. sense. In other words, physical
allowed to stay tight for too long. It therapy teaches people how to walk,
can significantly impact your ability Most people tend to be familiar transfer, and move around.
to walk. Problems such as this are with the role physical therapy Occupational therapy helps people to
caught early by a physical therapist plays in the rehabilitation process. regain their lives by teaching them
and actions are taken to avoid or cor- People seem to be less aware of how to take care of themselves, how
rect them. the important role of occupational to get dressed, how to cook, how to
therapy in this process. A source manage their homes, and how to
Theresa received a Bachelors degree of people’s confusion may be that return to their previous roles and
in Early Childhood Education from the two professions are not clearly lifestyles. To accomplish these
The Ohio State University and went differentiated and while there are goals, occupational therapy can teach
on to receive a Masters degree in significant differences, they are someone compensatory skills to
The Transverse Myelitis Association Page 17
complete an activity, they can assist being able to go wherever you these important aspects of our lives
in modifying the environment to want to go? Have you thought has been disrupted, unhealthy habits
support the individual’s level of about wanting to go to the park may emerge.
ability, or they may introduce with your children? Have you
adaptive equipment to complete a thought about wanting to return Occupational therapy can help
task. to work? For those of you who people regain some of the
are adventurous, have you independence that is often lost when
Transverse Myelitis is a frightening thought about wanting to snow a person contracts TM. OT may also
and difficult condition, which can ski or water ski, play basketball, help you find ways to reestablish
cause one to loose their ability to or go rock climbing? many of the important roles that
complete even the simplest tasks. defined your life before your illness.
Many of you experienced the sudden For most of you, the answers to Finally, OT may be able to help you
onset of TM and were offered little these questions would be a find the important balance, which all
or no explanation as to the causes of resounding YES; and, yes, there of us need in our lives and which
this condition. Occupational is a way to participate in all the provides us with meaning, happiness
therapy is an important resource for above activities. We may need to and fulfillment. Having an illness,
the TM population, because we can alter the way you do it. For such as TM, can create significant
help you regain some control over instance, we might need to show losses for a person. Life may be
your lives as your body is recovering you tricks for tying your shoes different after TM; but an OT can
from the disease. The ability to do without using your fingers. Or assist you so that different does not
for oneself is one of the most we might have to teach you how have to mean a diminished quality of
powerful tools to having control over to modify the environment, for life.
a life-changing event that has placed instance, by installing hand
you in a position of helplessness. controls in your car. Or we might
Occupational therapy can help you even provide you with adaptive
begin the process of regaining back equipment, such as adaptive ski
that control. equipment to race down the ski
hill -- with lessons, of course!
It is difficult to use a global The important message is that
example, which would apply to there is a way to return to doing
every person, because each of you is almost any task, if you have the In July of 1999, Johns Hopkins
so different and possess different will to do it. Occupational opened the first transverse myelitis
needs. In addition, the disease therapists can become your
affects people at different levels, and partners in achieving any goals Progress Report of the Johns
the symptoms of TM demonstrate you set before yourself. Hopkins Transverse
great variability. Myelopathy Center
Many of you are in a grieving Douglas Kerr, MD, PhD
Think to yourself, what is it that process and may not think all of
would help you feel better about the above activities are important
yourself? To those of you who have because your primary focus is on center in the entire world. Why was
limited use of your arms, would you understanding what is going on this started? There were several
want to be able to get dressed at your with your body and on your reasons, including the fact that my
own pace and put on your makeup recovery. I am suggesting that research dating back to 1988 focused
by yourself? Would you like to be while your focus is vitally on central nervous system infections
able to cook your favorite meal by important, these other life-issues and inflammation. Foremost among
yourself? Would you want to be are critical, as well. Finding a the reasons for starting the center,
able to participate in leisure balance in life is so important to however, was the tenacity of my
activities, such as gardening or all of us, and that is regardless of cousin, Gunny (a.k.a Richard Boyle).
fishing? To those of you who are our life circumstances. He and the Gilmurs were quite
fortunate enough to have use of your Occupational therapy works from persuasive that a significant need
arms, but not be able to walk as you a premise that we should all have existed for such a center. They
previously did, have you thought a healthy balance in our lives of impressed upon me (confirmed by
about wanting to be able to drive and work, rest, and play. When any of my subsequent experience) that too
Page 18 The Transverse Myelitis Association
often patients received an erroneous Hopkins. It is actually a rare day both in size and in knowledge, and
diagnosis, or no diagnosis, or no that I do not get called from that our capacity to treat TM will
follow-up treatment, or no somewhere in the world about a likewise improve.
understanding of what the future patient with a disease that sounds
would hold for them. And I knew like TM (again, sometimes the Dear Association Members:
that to understand a disease, one has diagnosis has been wrong). We
to see a lot of it and to have smart will work with the family and
people think about it. With a rare local physicians, will have data Cody’s Firststep Foundation:
disease like TM, this would never sent to us for analysis, and will Education and Research
happen unless a ‘center of even analyze spinal fluid and Shelley Unser
excellence’ was established. blood in our laboratories.

So, Drs. Carlos Pardo, David Irani We have had some problems This letter is long overdue and I’ve
and myself dedicated ourselves to along the way, however. My sec- been anxious to tell the story.
doing just that. We recruited retary, Philis Carbonell, is a won- Cody’s story I’m not going to tell
physicians in other disciplines at derful and hard-working woman. you, you can look that up on the
Johns Hopkins, as well as other But she and I have been truly Internet under
health care personnel, to see TM swamped at times. (If anybody www.codysfirststep.org.
patients with us. The goal was feels that she has done an excel-
clearly stated: to better diagnose and lent job for them, please write her I am Shelley Unser, the proud
treat TM. Ultimately, we hope to a letter and let her know! It’ll mother of four great kids -- Al, 17;
devise restorative therapies for those make her day). Some days we Cody, 13; Shannon, 11; and Joey, 3.
who have had TM and preventative will get 75-100 calls or e-mails It’s been approximately 14 months
strategies for those at risk. just relating to TM patients. (I since Cody came down with an acute
also see patients with multiple case of Transverse Myelitis. I need
So, where are we now? We have sclerosis). So, we have failed to give a little background
seen over 120 patients with TM in some people in getting to them information before it all happened.
under a year. Many of these patients promptly. I apologize for that
were in the acute stages and received and hope that as we grow, we will I married Al Unser, Jr. in 1982 when
high dose steroids or a newer improve in this regard. we were very young. We had a very
therapy, plasmapheresis. For those public and sometimes stormy
more removed from the acute event, We hope to begin some clinical marriage that ended in November of
we have attempted to focus on trials within the next year. One 1998. I’ll spare everyone the details.
several issues: 1) to serve as an of those would be the drug
information resource about the fampridine (4-AP) that many of I was going through my own
disease itself, 2) to ensure that the you have heard about or even grieving process and loss of identity.
medical evaluation was complete and tried. Some patients have had I had always traveled with Al and
to perform additional studies as marked success with this, while was heavily involved in the racing
needed, 3) to consult with local others have not. We hope to scene, its fundraisers and all it
physicians as requested when new investigate this further and entails. I was also sports
issues arose, 4) to suggest and determine who would most commentating part-time in a sport
implement aggressive health benefit from this drug. We also which was all consuming and is
maintenance strategies, 5) to hope to investigate the extent of more of a way of life than most
effectively and aggressively manage and potential treatment for sexual people can imagine.
persistent symptoms, such as bladder dysfunction in TM, and to
dysfunction, pain or spasticity, and examine novel therapies for Cody’s Transverse Myelitis couldn’t
6) to serve as a source of hope that bladder dysfunction. have happened at a worse time. Her
we are working towards a day when father and I were barely speaking
we can better treat patients with TM. Every time I hear about someone (after being inseparable for 17 years)
getting TM, I become more and in the midst of a bitter divorce
We also have served as phone resolved to better understand this when Cody collapsed at her middle
consultants for patients afflicted with disease. My hope is that the school basketball practice.
TM and unable to come to Johns JHTMC will continue to grow
The Transverse Myelitis Association Page 19
Cody was taken to the hospital in move to help me feel more of held my daughter to her celebrity
Albuquerque where, being still what my daughter was going promises and, yes, at times worn her
somewhat of a small town, it was through! I would just cry and out.
decided she was probably just cry. Somewhere between denial
hysterical and trying to get attention and anger, Cody and I came to I know with research there will be a
due to her parent’s situation. terms at the same time and took a cure for paralysis caused by TM. I
different outlook. I suddenly know, through Cody's smile, she has
If you know Cody, or once you meet realized Cody Unser was certainly brought attention to TM. I
her, this will truly make you angry. obligated to use the famous name wish every person with TM could
She is not that kind of child! The and, despite the divorce, she and I have received the same amount of
hysteria they saw was actually a had every right to capitalize on attention Cody is getting (and she
severe needle phobia. The that name and do something good would gladly share it, believe me) but
ambulance EMTs had made several with it. more importantly, now that the word
attempts to put IVs in her on the way of TM is out, we need your help to
to the hospital. She was alone and I somehow found some of my old focus on TM.
frightened. I was out of town and, confidence and realized just how
by the time I got there, Cody was much I knew about public Cody has been sending out medical
paralyzed from the chest down. I relations, fundraising and forms for Johns Hopkins to collect
was in shock, mortified and had awareness from my contributions data. She has asked hospitals to
three other siblings at home looking to my marriage. I could do the contact Dr. Doug Kerr and share
to me for answers I could not give same for Cody and, in turn, help patient information during the acute
them. Fortunately, with the help of her and others. phase. To make this work, every
my family and a few true great person reading this newsletter needs
friends, we somehow lived through People Magazine started the to take the initiative so her efforts are
the beginning of the whole ordeal. snowball and before I knew it, not in vain.
Cody, like it or not, was
I knew from day one that Cody was becoming a poster child for Please use your own contacts to tell
going to make a difference; I just Transverse Myelitis. your doctors and hospitals to find a
didn’t know how. way to share data. This horrible
Her father and I had had condition needs to be diagnosed
With the last name Unser we were numerous discussions on the quicker so more people don’t end up
able to go outside Albuquerque for subject because his life was spent in wheelchairs.
help. I didn’t realize until later just in the limelight. He was worried
how many people struggle with their Cody would be used up and tired A very young couple in Indiana just
insurance companies and never get out. Ultimately, as her mother, I lost their dad, Frank Meloy, to TM.
this option. decided the decision was neither At the funeral they decided, instead
Al’s nor mine, but hers and I of flowers, to help Cody’s
I then found Dick and Deanne would support her all the way Foundation. They had their late
Gilmur through a friend on the with whatever she decided. father’s doctors contact Dr. Kerr and
Internet. Deanne also gave me the share their knowledge of his death.
number of a woman named Gail The rest is history. Fourteen
Hirsch who was going through the months and a few good mother/ Every single person with TM is a
same thing in California with her 13 daughter fights later, Cody has pioneer and, in my opinion, obligated
year old son, Evan. She still has no amazed me with 48 Hours (the to push the medical community to
idea how comforting it was to talk to television crew lived with us for understand it. We also need hospitals
her. She was a total stranger and yet two weeks), Inside Edition, that truly have a grip on how to treat
I poured my heart out sometimes in Courage and numerous articles. it.
the middle of the night during the We have pushed each other into
initial stages of grieving and looking TM mania. I no longer watch I am so proud of Cody and I am so
desperately for answers. racing, but medical shows. I feel touched by so many of you that I
like a pre-med student and I have have met and talked to in just one
I remember, as a mother, lying there found new meaning in “life.” I year’s time. This experience has
at night trying to pretend I couldn’t have become a better mother, restored my faith in humanity.
Page 20 The Transverse Myelitis Association

In Their Own Words


I cannot wait until the Symposium in
2001. Who knows, maybe they will The In Their Own Words articles in this newsletter have been written by
be closer to a cure before we even parents of children with TM. We are too frequently contacted by parents
get there. If nothing else, the world whose children have been recently diagnosed. Our goal is to provide them
will think twice before sending with as much information and to get them into a network of support as
someone away because they can’t quickly as we are able. We know that the articles that appear in this
diagnose it. I can envision the day newsletter about these very special children will offer invaluable
when they (the hospitals and doc- information to parents of children with TM; and to parents who will contact
tors) might get on line, type in a few us in the future. In writing these articles, we asked parents to provide the
symptoms, a red flag will go up. Dr. information they would have wanted to know when they were going through
Kerr will get a call and the proper these very difficult experiences with their own children.
drugs and procedures will be admin-
istered within hours and that fortu- I am forever grateful to these parents for taking the time and energy to write
nate person will walk out of the hos- about these experiences. Most of us can’t know the emotional energy that
pital within weeks never knowing was required for them to revisit these extremely difficult and personal issues.
that all of you and my daughter, We greatly appreciate their willingness to share in their childrens’ and their
Cody, made a difference! How cool families’ experiences.
would that be?
You may submit your stories for the In Their Own Words column by sending
them either by e-mail or through the postal service to Sandy Siegel.
We Don’t Want to Lose You

Please notify the Association of any


changes to your postal address, your Coline 9 Months a fever (39 °C) and we noticed she
phone number or your e-mail ad- Chantepie, France was a bit limp. The GP comes again
dress. You can notify the Associa- and thinks she is weak because of the
tion by sending a letter or postcard fever (he finds a double otitis plus a
to Sandy Siegel or by sending the in- and Coline, aged 3 ½. We live in laryngitis). Coline sleeps all this day
formation through e-mail to mem- a very beautiful area with the sea long. She sometimes has her eyes
bership@myelitis.org. If you iden- nearby and we could have been opened, but she doesn’t cry. At the
tify any errors in the membership di- perfectly happy if Transverse end of the afternoon we keep her out
rectory, you may also notify the As- Myelitis didn’t come and turn this of her little bed and we discover at
sociation with the corrections in the quiet stability upside down. this time that she is completely limp,
same manner. Myelitis: we never even have without any reaction. After a phone
heard about this disease before call to our GP, we go and take her to
July 97. the pediatric emergencies at the
The TMA does not endorse any of Hospital.
the medications, treatments or July 97: Coline is a pretty little
products reported in this newsletter. girl aged nine months. She just She cannot move her legs, her hands,
This information is intended only to begins to stand up in her playpen nor her arms. She only can move her
keep you informed. We strongly but she still doesn't walk. head from right to left when lying on
advise that you check any drugs or On the 17 th of July, her mother her back on the bed. In the space of a
treatments mentioned with your picks her up from her nanny's few hours, Coline has become almost
physician. home. Coline is very grouchy, totally vegetative!
Hello Sandy and all TMA members! she looks as if she has pain. The
This is Roland et Pascale Erhel. We GP comes to our home and only From then on, the medical team
are French thus, first of all, we must finds that her ears are lightly red, performs the following procedures:
ask your indulgence for the broken nothing more.
English we are writing in. We live A lumbar puncture (meningitis?);
in Chantepie, a little town near When Coline woke up on the An Electroencephalogram
Rennes, in the west of France. We morning of the 18th July, she had (convulsion when she was asleep?
have two daughters: Aurélie, aged 9,
The Transverse Myelitis Association Page 21
We were concerned about poisoning diseases, Pr Pierre Landrieu. He caused by TM are unfortunately
from medications that she might gives us a great deal of visible and deeply disabling: Coline
have gotten into at her nanny’s information about a disease we cannot normally maintain her chest,
home. This hypothesis was didn’t know until then, but he she stoops and has to lean on
abandoned). stayed very careful concerning armrests or her thighs to support her
A brain scanner (normal); the possibility of recovery for back. She wears as often as possible,
A MRI, which finally confirmed the Coline, insisting upon the fact a surgical corset which extends from
diagnosis of Myelitis made by the that there is an enormous her hips to the armpits. Essential to
neuropediatric of the medical team. individual variability in these prevent her spinal cord from any
It’s an acute cervical myelitis in C1 neurological problems. distortion, this corset limits to a
- C4. certain extent the movements of her
An echography of the bladder: the I can’t describe the state we were arms (when she plays, when she
bladder is full and Coline is unable in during this awful period. From draws ...) and turns out definitely
to empty it; this, again, confirms the one day to another, Coline was bothersome in certain situations
diagnosis. reduced to a vegetable state. We (when it’s warm, during our holidays
didn’t know how it happened in Corsica, for example ...).
Coline stayed for three weeks in this (perhaps a gastroenteritis she
vegetative state. She received made at the end of June; they Coline can use normally her right
different treatments: didn’t succeed in finding out the arm and right hand but her left hand
virus responsible for this). And has remained partially handicapped.
An IV for rehydratation; we also didn’t know how she In the beginning she could only use
Antibiotics (CLAFORAN, would recover. In fact, we didn’t her two fingers, thumb and
NETROMYCINE); know the reason it came to be, forefinger; she could use the pliers
Antipyretics (PRODAFFALGAN, and we didn’t know where we with the thumb and the forefinger,
ASPEGIC); were headed .… but the three other fingers remain
Morphine (SKENAN), because more oftenly folded and inactive.
Myelitis is often painful; At the end of the third week of She has yet to succeed in opening her
A daily session of Physical Therapy hospitalisation, the recovery hand, very slowly, for sease (for
(passive mobilization of the four began very progressively: support example, she can hold normally the
limbs). of the head, movements of arms, handlebars of her scooter -- open,
folding the right arm, getting her then close all her fingers on it -- I
There is actually no real treatment right hand to her mouth .... transformed it so that the accelerator
for Myelitis. A medical protocol is Coline went back home on the could be activated by hand and she
usually used in this case to try to 14th of August. After a few uses this little electric scooter to
attenuate the inflammation of the weeks at home, the drive around the neighbourhood).
spinal cord. Coline received this improvements tended to slow and Coline is recently able to open her
treatment during these three first then apparently stopped. hand, but not in a quick normal way.
weeks of hospitalisation:
From August 97 until today, we Coline can’t use her legs, even if
A bolus of Corticoids (a great dose haven’t stopped trying to find those are sometimes animated by
of corticoids given in a very short anyone able to help her, to help voluntary movements, mainly in the
time -- in French we say a dose de us: the best and the worst, serious way of pushing. We have in our
charge -- during three days); and honest people, but also home a verticalisator, that we call le
Immunoglobulines, one IV or charlatans (in desperation, we go debout (the stand up), a mobile
perfusion, lasting two hours, over a and see anybody pretending to be device in which we install her in
three day period; helpful for us. Love makes blind, order to fortify her legs (to avoid
Corticoids (little doses) per os (oral but sorrow too ...). demineralization and weakening of
-- by mouth) during 10 days. her bones). Seeing our little girl
Coline today is a very pretty little strapped up tight in her corset and
On the 11 th of August 97, Coline is girl aged 3 ½. Very happy to attached in her debout is a
transfered to Paris for a super- live, always smiling (which is a heartbreak. But we must get her in
consultation with the French great help for us, her parents, her it. She, herself, feels quite good in it
specialist of children’s neurological sister and relatives). Damages because of her unusual vertical
Page 22 The Transverse Myelitis Association
position which provides her a nothing)! Perhaps her intellectual It has been four years since Danielle
different perception of her own body development has come and was diagnosed with tm. I will start
and her environment. compensates for the motor from the beginning, the best that I
insufficiency. She now goes to can remember. Danielle was 9
To these already heavy handicaps go nursery-school three mornings a months old when she was diagnosed
in addition, as if it was not enough, a week. Annie, her teacher, is in February 1996.
whole trail of secondary problems assisted by Delphine, who’s job
(secondary but also hard to cope is exclusively to look after Coline On February 14th, I picked her up
with). The dysfunction of her at school. (These Youngs in from the baby-sitter’s house. She
bladder which compels us to practise France are called auxiliaires looked a little flushed to me. She did
three urinary catheterizations per day d'intégration -- Integration not seem happy when she saw me.
(at her awakening, at midday and in auxilary. I don't know if this When I picked her up, I could tell
the evening). We, of course, have exists elsewhere). A little non- that she had a fever, but thought it
learned to do ourselves this nursing mobile chair was created was maybe a cold or something. I
act whose daily repetition for more especially for Coline, for her only lived a few miles from the
than two years would seem activities in the classroom.
unbearable for many, but it’s now Danielle 9 Months
for us a part of our routine. Despite That was, until today, the story of Tennessee
these catheterizations, or maybe Coline (which is also, of course,
because of them, Coline often the story of us, her parents and all
develops urinary infections which her relatives). The poor little sitter’s house, so I waited to take her
need to be treated. Echographies of story of a poor little girl that had temperature until I got home.
the bladder are regularly done, and badly begun with life. Sorry, we
soon, a scintigraphy of the kidneys don’t believe in God. It’s When I did get home and took her
will take place. certainly a pity, because if we temperature, it was about 100. She
believed, it would be, without had a rash on her tummy. Again, I
Each ORL (Oto-Rhino- any doubt, of some help for us. was thinking it was a virus or cold.
Laryngologique -- ear, nose and But you just can’t obligate Her temperature was going up and
throat problems) infection brings yourself to believe. up for the next few hours. Tylenol
complications because Coline hasn’t was not helping with the fever. It
got a cough effective enough to clear We do hope that life will be had gotten to 102.5. So, I called her
the phlegms. Her daily session of better for Coline in the future -- doctor, and was told to give her a
physical therapy is then replaced by we believe in the progress of little more Tylenol to see if the fever
breathing physiotherapy, which science; and a great deal of our would come down a little. While I
occurs several times each winter. time and energy will be devoted was talking to the doctor, Danielle
to her. Before TM, we had no started to have trouble breathing and
Coline is being seen by Dr. Nicolas particular aim in life, now we could not swallow the Tylenol.
(Rehab) in Rennes. He deals with have one, and it is a magnificent
all the problems related to her challenge! We met the doctor at the hospital.
handicap, especially all that concerns When we got to the hospital,
the corset, different orthesis and Roland et Pascale Erhel Danielle’s fever was 105. She was
devices aimed to avoid distortions of E-mail: rolerhel@aol.com not crying or swallowing anything.
her spinal cord, her hips and inferior Website address: http:// She refused a bottle and the breast.
limbs. Three times a week she has a hometown.aol.com/rolerhel/ At this time we had x-rays done and
visit from Yves, her physical rolerh.htm bloodwork. When the x-rays came
therapist, and two times a week we back and were read, we were told
go and see Marie -Claude, a PT too, Roland and Pascale ERHEL that she had pneumonia. We were
but specialized in children with then sent to the local children’s
motor problems. 7, rue de Molène hospital. We were there for 21 days.
35135 Chantepie
Coline has been precocious as France After being in the hospital for three
regards language, she speaks very days, Danielle went limp from her
well and a lot (she is not a girl for neck down. She cried all the time.
We had been seen by so many
The Transverse Myelitis Association Page 23
doctors. We were tired of them rologist and pulmonologist on a shots four weeks before her illness
coming into the room and pocking weekly basis. There was PT three and the flu two weeks before her
and picking on my daughter. No one times a week for the first three illness. The morning of January 21st
could tell me what was going on. I months. We then went for PT 1998 at 7:30, Kristen's mother,
questioned whether a spinal tap twice a week and currently it is Teresa, took her to the babysitter and
should be done and was told that once a week. Danielle has been went to work. Kristen appeared fine.
there was really no need to be doing in and out of the hospital several Each day after my daughter, Heather,
a spinal tap. The doctors at the times with her lungs and not be-
hospital were going to diagnose her ing able to breathe properly. Her Kristen 7 Months
with something that (I can’t lungs are getting stronger. Arkansas
remember the name) was a
temporary form of paralysis. She is now only paralyzed from
the waist down. She does have
I talked to my doctor about it. The problems with being able to con- got out of school, she would pick
spinal tap was done the next day and trol going to the restroom, so we Kristen up from the sitter’s. When
they found out that she had spinal have her in pull ups. She started Heather picked Kristen up that day at
meningitis. So, antibiotics were going to pre-kindergarten this 3:30 p.m., she immediately noticed
started. Well, to say the least, past year and has made a lot of that Kristen did not raise her arms to
Danielle got worse. Danielle was friends. Everyone says she is greet her or move her body when she
still not eating and was swelling up special. I believe them; she is put her in the car seat. Heather called
like a balloon with all of the meds special. She has proven all of the Teresa at work. Teresa immediately
that she was on. The doctors did an doctors wrong; they told me that came home and took Kristen directly
MRI and CT and found that there she would not live two months af- to a local hospital. Due to Kristen’s
was fluid on the spine from c3--c7. ter being diagnosed. age and condition she was
At this time they thought that her immediately flown to Arkansas
ears had drained from an ear The out come of all of this is that Children’s Hospital in Little Rock.
infection to her spine. Danielle is a typical five-year-old Kristen had no movement from her
in a wheelchair. She loves her neck down.
We had an intern assigned to her wheelchair; it gives her freedom!
case. He came into our room about She also has braces and a walker Upon arrival at Arkansas Children’s
3 am one morning and said that he that help her when she wants to Hospital, Kristen was initially
knew what Danielle had. He said go walking. She loves to swim diagnosed with Guillian Barre
that it was so rare that he did not and play with her babies and Syndrome and treated with
know how or where she may have barbies. immunoglobulins. Three to four days
come in contact with it. Then told She is still in PT and will be later, after an MRI, this diagnosis was
me it was acute tm. He said that he attending kindergarten this up retracted and we were told that an
had never seen or heard of a case coming school year. unknown virus had attacked her spine
before. Now that we were destroying nerves on the inside and
diagnosed, I asked, “now what?” Mary Troup outside of her spinal cord. Her
work7days@aol.com immune system had also become
Physical therapy was started while confused and attacked her body.
we were in the hospital. The Kristen had been on a ventilator since
neurologist started her on an i.v.i.g.g her arrival at the hospital and now
drip that lasted two days and dripped was given large dosages of steroids.
for 12 hours at a time. Steroids and Kristen spent the winters of 1998 and
breathing treatments. There are so 1999 at Arkansas Children’s
many meds that she currently takes Hospital. Thankfully, this winter she
and that she has taken, that I February 28, 2000 has not been in the hospital at all.
couldn’t possibly begin to start Kristen’s diagnosis for the future -
listing them all. My granddaughter, Kristen, has she can be functional.
Transverse Myelitis. I would like
After we were sent home from the to tell Kristen’s story. Until this occurred in January of 1998
hospital, we started seeing the neu- Kristen appeared healthy. She rolled
Kristen had her six months baby
Page 24 The Transverse Myelitis Association
everywhere, sat up and had even when she was diagnosed with neurologist was telling us that our
begun to attempt to crawl. To date, TM. During the morning of the daughter had TM, which was
Kristen has moved every part of her onset, she had been her usual self, completely unknown to us. She was
body except her left hand. She will happy, rolling on the floor, admitted to the Pediatric Intensive
roll over, although she doesn’t do so rocking back and forth in a Care Unit for high doses of steroids
without encouragement and it crawling position, and sitting up and a dose of immunoglobulins.
requires a lot of effort to accomplish. by herself. After lunch, she When we saw her, she was on a
She will sit by herself if you place became irritable and fussy; she respirator, had two intravenous lines,
her in a sitting position, although she nursed and fell asleep in her and a foley. She stayed on the
slumps forward (this is improving). mother’s arms. We continued to respirator for three days. The
Kristen does not crawl, stand or rock her and comfort her through pediatric doctors and the neurologists
walk. She feeds herself fairly well the afternoon. We noticed ran many other tests trying to
using her right hand for grasping and something was not right while determine the cause of her illness,
her left hand for support. Kristen’s changing a diaper. Her arms and which ended up not telling us
right hand has loosened from a tight legs were limp and she was anything. We were told that the
fist and she has fairly good control Maria 6 Months cause was autoimmune, something
of it. Her left is very floppy. She is Pennsylvania within her immune system attacked
extremely active with her arms and her spinal fluid. Initially, her MRI
can move her legs, although she does showed the area of swelling in the
not do so with much frequency. She Cervical 4-6 and then continued
is very weak and can only lift light looking at us. She was able to down her entire spine. A week later
objects. move her head from side to side there was a mild decrease in swelling
but there was no movement from when compared to the first MRI. We
Kristen’s mother has begun to try to her neck down. Our pediatrician saw her first movement within the
potty train her. Kristen will use the did not understand what was first 48 hours when she lifted her left
potty, but we don’t see a controlled going on when we spoke to him arm up and down.
function. Bowel movements are over the phone but he did agree
extremely painful for her. that she needed to be seen. We On the fourth day, she developed a
were not aware of any previous urinary tract infection that required
Kristen is a delightful child. Last illness such as cold, flu, or antibiotics. A spinal tap was done a
winter at Arkansas Children’s anything else. She did have a week into the stay. The doctors
Hospital, she learned all her nurses’ mild diaper rash a couple of days expected to see signs of the infection
names so she could get extra before that had healed. Our but only found normal fluid. She
attention! She is very forgiving; daughter had double hernia remained hospitalized for 18 days in
even after painful medical surgery at four months old with the pediatric intensive care unit.
procedures she is still affectionate general anesthesia and a caudal Two days before we came home, she
with her doctors and nurses. And block. She also had had a cookie swallow done. She was
she is very loving. Because she is so immunizations at four months of able to chew and swallow normally
young, we are hoping to see age. so she started to eat some baby food
improvements in her condition as At the hospital, the emergency and take her bottle again. We had to
she grows. At age two she could doctor examined her. We were catheterize her two times a day,
recite her ABC’s, count to 10 and asked many times about how this because her bladder did not empty
sing several songs. happened to her. Making us feel completely. The medications
very frustrated and guilty, like we prescribed on discharge were prelone
We feel blessed to have our Kristen had done something to her. We (steroids), suprax (preventive), and
and pray that a cure will be available knew that our story was very oxygen. The equipment prescribed
for Kristen and everyone affected vague. Finally, the emergency on discharge was an oxygen
with Transverse Myelitis. doctor consulted with a concentrator (nasal cannula), suction
neurologist and a MRI was supplies (weak gag reflex), a pulse
Sincerely, ordered and done. They had to oximetry monitor, bladder catheters,
Donna K. Hibbs intubate and sedate her for the and bilateral hand and feet/ankle
MRI. Within six hours of splints.
Our daughter was 6 months old entering the hospital, the
The Transverse Myelitis Association Page 25
She started outpatient rehabilitation wheelchair that would be best for we thank G-d that she has the mind
three times per week for her. And looking for out-door of a three-year-old.
occupational and physical therapy. toys that are hand pedaled to give
We saw very slow improvement. We her the independence that she Pam and Morgan Hoge
tried to motivate any kind of needs.
movement through play and toys. At
one point, we also had the Early Her therapies consist of
Intervention Program come into our occupational therapy two times
home for occupational and physical per week and physical therapy
therapy. We felt that this was too three times per week. She started
many therapists with too many hydro (water) therapy at 32 19th October 1998
opinions. So we concentrated on the months old and equestrian
center for therapy. Our goal and (horseback riding) therapy at 35 Natasha got up for school as normal
hope is for her to have a complete months old. She loves them both feeling fine. I dropped her off and
recovery. Even though it's been two and seems to be doing better in went to work. At lunchtime (12.00
and a half years, we still believe this each activity.
to be possible. She presently has Natasha 9 Years
great upper body strength. She can Presently, she takes one dose of Cheshire England UK
crawl dragging her lower body bactrim daily to prevent bladder
without difficulty. She can get into infections. She also takes one
the proper crawling position with dose of detrol daily to help her noon) I went for a sandwich. While I
belly off the floor and knees under bladder to expand and hold urine. was out Natasha’s school had
her hips, yet only rocks in that She sees a urologist one to two telephoned and asked me to call
position. She feeds herself with times per year. She sees a back. I arrived back to the office at
either finger foods or feeding neurologist one time per year. 12.30 PM. I telephoned the school
utensils. She sits on a bench with She sees her pediatrician on a immediately to find out what was
usually one hand down to stabilize normal schedule, although our wrong and their answering machine
herself. We do see muscle activity visits may be longer and we was on; half an hour later I managed
in her legs. Her legs were floppy up request extra time. to get through.
until two years of age (post one and
a half years). Then we noticed she It has been tough as parents to I was told that she had been running
had her knees flexed in while see our child so ill with no around in the playground with her
sleeping and they were hard to relax. definite reason why and so many friends when she suddenly felt a pain
With the guidance of therapists, we unanswered questions. And not in her chest and felt sick. She was
made nighttime cloth leg splints to being sure what her future holds. told to go and play and not to be
keep her legs extended. She can Where will we be? Who will silly. Five minutes later she felt very
stand with minimal help at a bench take care of her? In addition, sick and went indoors. She was sick
for a brief period of time. trying to care and love siblings three times downstairs and twice
that are too young to understand upstairs. At that point the school
Presently, we use the following why their sister does not walk or decided to telephone me. Whilst they
equipment for her daily routine; run. It's been a long two and a were ringing me, Tash was left alone.
electric stimulation for her upper half years. She started to get a funny feeling in
legs, air splints for her legs while she her body and the pain in her chest
is standing, ankle/feet splints while We are not sure how we got was still there. She stood up and
she is standing or sleeping, night- through the last two and a half immediately fell to the floor and
time cloth leg splints, day-time hand years but we did. We talked a banged her head on the corner of a
splints to help keep her fingers lot, cried a lot, and hugged a lot. table. When the dinner ladies got
extended, night-time resting hand We have had good days and bad back to her, they realised what had
splints for muscles/joints to relax, days. We still hope and pray for happened.
catheterize her three times per day, complete healing to take place.
and a pony gait-trainer to get her Yet, we do want His will to be I arrived at school thinking that Tash
upright several times per day. We done. Our three-year-old is a had a stomach virus and would be
are researching the type of very happy and loving child and fine. When I saw her lying on the
Page 26 The Transverse Myelitis Association
bench, I called to her so I could pick mentioned performing a lumbar within the next few days that she
her up and give her a hug. She told puncture. would be like this for the rest of her
me she couldn’t move. I had no life; not being able to be touched
idea. The school had told me none They decided to contact the because the slightest movement
of this. Then I saw a huge lump and specialised Children’s Hospital causes more pain than you could
bruise on her head. (9.30 PM) about 10 miles away possibly imagine; not being able to
to see if they could admit her. move from the chest down; not being
I thought the loss of use in her legs Their main worry was whether able to give your mum a hug.
was a symptom of concussion due to her breathing would deteriorate
her bang on her head. I decided to further while she was being We are now 18 months down the
take her to our local hospital to transported from one hospital to line. She can sit up with a straight
check her out. We arrived at 2.15 another. spine for a short period. She can
PM. On the way and when we stand, although not for very long.
arrived at Casualty, Tash was We managed to get there OK And she can walk with a frame for
complaining of excruciating pain in (midnight). She was checked by about ten steps before she gets too
her back. She was extremely a House Doctor, who again tired. She can feel from the chest
distressed, as was I. thought she knew what it was but down although it does not feel right.
was not completely sure. A The base of her feet are still
The nurses and doctors in A&E were lumbar puncture was performed incredibly sensitive and she would
appalling. They had no idea what and she beeped the Consultant for rather you didn’t touch them but they
was going on and thought that further diagnosis. We were then are much better than 18 months ago.
Natasha was having them on. One taken to the High Dependency She has private physio three times a
nurse said, “Oh don’t worry, we’ve Unit for monitoring (2.00 AM). week and NHS physio once a week,
had loads of children in this week and she works incredibly hard. She
with the same symptoms, wanting At 2.30 AM I tried to put my set a goal last year to walk a step and
time off from school. They all got head down for a while. Natasha she did it. This year her goal is to
sent home with the same answer – had gone to sleep. At 2.45 AM I replace the walking frame with
go to bed, you will be fine in the was told that the Consultant had crutches. She has such a strong will.
morning.” arrived and she needed to speak I know she will do it.
to me. She had immediately
In Tasha’s case, they were sadly requested a MR Scan and told me Natasha is a remarkable child. She is
wrong. she would know further after brave and extremely strong willed.
seeing the scan. She always has a smile on her face
We were left alone in A&E for five and whenever I find that I can’t cope
hours not knowing what was going 4.00 AM in the scanner. I could and it gets to be too much, she gives
to happen. She had not been sick see the reaction on the me a huge hug and tells me
since I had picked her up, but from Consultant’s face. It was starting everything will be OK.
her chest down, she was getting to dawn on me that something
strange feelings. One minute she was seriously wrong. I will never forget those first few
could feel everything and the next days. I will never forget the
she felt nothing. It was ever so 5.00 AM. I was told what was traumatic three months in the
strange. wrong; it was TM. Natasha had hospital. I have been scared for life.
contracted a stomach virus that It still brings tears to my eyes every
They decided they would admit her had convinced her immune time I think about it. Writing this has
to the Children’s Ward (5.30 PM) system that the virus was in her been extremely hard.
and monitor her. When we arrived, spinal cord. The immune system
a Doctor examined her. He had no destroyed part of the cord. It was difficult not being able to talk
idea what was wrong, so he called We did not completely to parents who have had children
the Consultant. At this point understand the total severity of with TM that were attacked so
Natasha's breathing was quite quick. the situation until the Doctors quickly. It only took 20 minutes for
She was getting very breathless. drummed it into our heads the Natasha to go from a fully abled
They thought they knew what it was next day. We were told that if child to becoming a child paralysed
but they were not sure. They she didn’t start to regain anything from the chest down. It hits you like
The Transverse Myelitis Association Page 27
a ton of bricks and your life is turned lift up a little on her knees and definitively told of Rachel’s
upside down. It’s only time that could pretty much sit up without diagnosis and she began intravenous
heals and life does get better; even falling over when all of that steroid treatment. We were told of
though the future is uncertain. changed literally overnight last her diagnosis on this day only
Natasha will walk again on her own; October. because Rachel’s MRI showed a
she has me to make sure of that and couple of other things that they had
her determination. We took her back to the to rule out as having any contributory
Pediatrician’s office the next two affect. They found swelling at C3-
Andrea Allen days and they continued with the C7, a small thoracic syrinx (fluid
giu22@dial.pipex.com shots of antibiotics. She didn’t filled cyst) and they also said there
cry for any of them. Rachel did was a decreased amount of white
improve and began to look better matter in her brain for her age. This
and during these three days, she was all so scary!
began to move her arms, first the
right one and then the left in large During Rachel’s hospitalization, she
sweeping movements. When she had therapy everyday and she
It was Saturday, October 9, 1999, a showed no signs of leg movement showed rapid improvement in her
by Tuesday, the doctor arranged upper extremities, showing increased
Rachel 6 ½ Months for us to go to Rainbow, Babies purposeful movement and strength.
Ohio and Children’s Hospital in Also at the hospital, she periodically
Cleveland so the large staff of wore custom-made hand braces (to
pediatric specialists could help her fingers straighten out) and
day our family will never forget. It adequately access Rachel’s custom-made foot braces (to prevent
was on that day that our daughter, condition. We entered through her toes from pointing downward all
Rachel, woke up and could only the emergency room and left 18 the time). Her trunk was weak and
move her neck. She had exhibited days later. We were asked a lot she was not able to sit unassisted or
cold symptoms for two days prior of questions about Rachel’s roll over. It was also determined she
and we felt she was probably coming immunization history and she did, was retaining urine and so she had to
down with an ear infection (she had in fact, have immunizations for be catheterized every six hours and
two previously) so we had planned Diphtheria, Acellular Pertussis, this ultimately resulted in a urinary
on taking her to the Pediatrician on Tetanus (DtaP3) and Haemophilis tract infection. This condition did
Saturday morning anyway. Rachel Influenza B (HIB) on September reverse itself while in the hospital
looked very sick, and had a high 23, 1999, a little more than two and we were able to go home with
fever and very weak cry when she weeks prior to her onset of TM. her urinating on her own. The
woke up, although she was alert and Even today, her Neurologist Pediatric Urologist indicated her
responsive. We were obviously very cannot completely rule out some bladder was now considered
concerned and called her connection. At the hospital, they overactive and she dribbled urine
Pediatrician right away. When we performed a Cat Scan, a lumbar frequently. Thankfully, Rachel only
took her there about three hours after probe and then an MRI of the needed an enema once and we
she woke up, he did find a double brain and spine. During this time, continue to watch her bowels and
ear infection and gave her two shots they transferred Rachel to the monitor them through diet.
of antibiotics, one in each leg. She Pediatric Intensive Care Unit as a
didn’t cry when she got the shots precautionary measure since her We were very happy to go home,
(which, of course, concerned us) but respiration was weak and they having spent a lot of time away from
the doctor felt that her muscles shut wanted to watch her more closely. our two sons, Matthew (who turned
down due to the flu. After all, you They wanted to make sure six while Rachel was in the hospital)
don't go to bed with a cold and wake whatever she had would not and Kevin, age four. We arranged to
up with a neurological disorder, eventually affect her ability to have Occupational Therapy two
right?? Anyway, that was the breathe on her own. Thankfully, times per week and Physical Therapy
beginning of such sadness and we were only in the Intensive one time per week on an outpatient
mourning for our daughter who had Care Unit for two days. On basis. On November 1st we started
been developing so normally up until Saturday, one week after the our outpatient therapy and continued
that day. She was just beginning to onset of her TM, we were to see improvements at every visit.
Page 28 The Transverse Myelitis Association
This was very encouraging, but by being on her back unless she is surround her with a lot of love and
early December, the progress had very tired. Rachel stands in her encouragement and, hopefully,
slowed, although it was still there. standing frame for approximately someday our prayers, that one day
At first we were told by her one hour each day in 15 - 20 Rachel will walk, will be answered.
Neurologist that she would be minute increments which should
seriously concerned if Rachel was provide her some additional Cathy and Dan Dorocak
not moving her legs in three months weight bearing which will help in
and this made us extremely anxious. her structural development. We
We watched her constantly for any also periodically do warm water
sign of new movement. While in the pool therapy and she will be
hospital, Rachel could move her legs fitted for dynamic AFO’s in a
stiffly from the hips, however, after couple of weeks. At this point,
we got home, we would notice very Rachel spends a lot of time at
slight changes or frequency of therapy and at home we work on Carpenter With a Dream
movement. We would notice this a large therapy ball and do a lot
more when her upper body was of stretching exercises to keep Hal Ketchum is a country western
stimulated or when she was sitting her tone good so that if the singer and songwriter who contracted
on a hard surface. It was nothing signals do get through, her Transverse Myelitis. One of his fans,
regular or predictable, but it was muscles are loose and ready to Suzanna Eckchum, has written and
wonderful to see, just the same. move. recorded a song about Mr. Ketchum
to honor him and to celebrate her ap-
Rachel is now a little more than 13 Thankfully, throughout this, preciation of his music and career.
months old and she has had Rachel is not in any pain which Ms. Eckchum has graciously pledged
Transverse Myelitis longer than she many people experience with to donate all of the proceeds from the
hasn’t had it. It really is hard for us TM. She is a very happy baby sale of this song to The Transverse
to remember her any other way and and does not know that anything Myelitis Association. “I hope my
we really don’t have much memory is amiss. It is difficult to assess song will help The Transverse Mye-
of her being mobile at all since she everything about her condition litis Association find the cure.” We
was just beginning this stage of because she is non-verbal, but we are most appreciative of Suzanna
development when she got sick. She do know that she has some Eckchum’s kindness and generosity.
now goes to Physical Therapy two feeling in her legs. She had an
times per week and Occupational ear infection just a month ago and If you are interested in ordering the
Therapy one time per week since she they gave her a shot of antibiotics Carpenter With A Dream song,
has shown some increased leg in her leg and this time she please send a $10 check or money
movement and considerable upper wailed! Rachel has recently order to:
body improvement. Her trunk is still begun to scratch her legs quite a
weak although it has improved with bit and we feel this is in response FeatherMoon Publishing
therapy. Her arms are at 100% to increased sensation she is 902 CO Rd 345
strength and she can get around the getting in her legs. Marble Falls, TX 78654
house pretty quickly by doing the
commando crawl. We have noticed We don’t know exactly where
irregular movements in her hip this uncertain road will take us,
flexors and quads and we are but we do know it will take a
working hard at trying to capitalize very long time for Rachel to
on that. We do a lot of sit to stand recover whatever function she
exercises and have recently begun to will eventually have. The
do electrical stimulation on her back waiting and the uncertainty is so
and lower extremities. Rachel very difficult, but we continue to
cannot roll from her back to her be hopeful for Rachel’s future.
stomach without assistance so we are We have to be. We know at this In 1989, I was a fit and happy-go-
working on developing the muscles point that she would be able to lucky type of person. I was married
to help her do that so she doesn’t feel live independently and we are so to a smashing girl, Annie. We were
so trapped. She gets very frustrated grateful for that. As we wait, we living in a flat in a small town called
The Transverse Myelitis Association Page 29
ried out many tests, such as MRI,
Life After TM: Triumphs of the Spirit
CAT scans and spinal taps. The last
Mel and Darlene are members of The Transverse Myelitis Association and test that the neurologists asked for
both have TM. Coincidentally, Mel and Darlene recently communicated their was a myelogramme; this was the
experiences to me. I was so moved by their spirit and courage, that I worst of all the tests that they put me
requested permission to share their experiences with all of you. Both Mel and through. However, it did show ele-
Darlene have suffered from depression. What I found so inspiring about their vated CSF levels. The medical
experiences was that they found relief from their depression not from a maestros ruled out MS, because this
recovery from TM, but in spite of it. I do not mean in any way to imply that was the only attack that I'd had so
there is an easy fix for depression or a simple formula that a person may far.
apply to treat their depression. In fact, I believe that just the opposite is the
case; that the treatment of depression is extremely complex. With tremendous After many days of uncertainty, the
tenacity, Mel and Darlene have created some wonderful and positive changes senior neurologists decided that I
in their lives. If their stories inspire one person to seek that light at the end of was suffering from a condition called
the tunnel, they will be gratified for having shared their experiences. Transverse Myelitis. This was a
complete shock to my system; I did
not want anyone to get involved with
me. I went into the deepest black
Life After TM: An Olympic sleeping shift, a sudden sharp holes. The neurologists were going
Effort pain in my back woke me up. I to call the clinical shrink, but this
Melvyn Corley got up or I tried to get up but I was deemed unnecessary by the rest
could not. My legs would not of the medical staff. I felt like I was
move and they felt weak and the only person that had this terrible
Redbourn, which was in Herford- heavy. I remember trying to lift virus. I could not even call the
shire, England. I was working for a my arm to grab the phone in or- illness by its proper name.
major clothing company called Next. der to call the wife who was at
I took this job after leaving the work, but I found that the left arm My dearest wife, Anne, then went
Armed Forces in 1989. I left the ser- was in the same state as the legs. and found all that she could on TM.
vice because my new wife did not By now I was completely fright- We were lucky that she found a
like me going back and forth to ened. I was completely paralysed medical student that was looking into
Northern Ireland. down the left side of my body. I TM. He was brought onto the ward
had a massive headache, and and was questioned for hours on the
On the subject of the 23rd March there was a pain just below the disease. At the same time, the
1989, I was at work until the usual rib cage. I phoned my neighbour doctors were pumping me full of
time. But I felt unwell. I had previ- with the good arm, who contacted steroids. I believe that it was
ously had a massive chest infection the wife. She came home from predisalone. All that they did was
for which the doctors gave me some work, and immediately phoned blow me up in the face. They also
antibiotics. I had completed the for the doctor. The doctor said fitted a fulltime catheter, which was
course of antibiotics and then went that he had never come across later to change to a superpubic
back to work thinking that all was these symptoms. He decided that catheter. However, I kept on getting
well again with my body. That week it would be in my interest and his urinary tract infections. So by the
I was working nights. We had a rush to get me admitted to the hospital time I was discharged, I was on the
job on and I volunteered to stay on to get it checked out. He was the intermittent self-catheter, along with
and get the job done. We finished first visitor that I had, and he kept a condom catheter and leg bag to
around 10:00 PM. I had started on visiting me until they estab- catch the drips, so to speak.
work at 6:00 PM on the previous lished what was going on inside
evening. After I got home, I told the my body. My bowels were eventually brought
wife that I had a massive headache. back, but nowadays it is controlled
I took some paracetamol thinking I was first taken to the local hos- by diet. There are some days that I
that the headache was punishment pital A&E, but I was then trans- have to take matters into my own
for having worked so late and so ferred to a specialist hospital in hands, but I have been doing this for
many hours without rest. London, where they had all the so long, I have now got it down to
Anyway, during what I called my testing equipment. Here they car- fine art. I was given loads of PT
Page 30 The Transverse Myelitis Association
while I was on the wards, however, Much of my depression was Kelly. Now, this chap opened my
they were never able to get me up rectified by a visit to a spinal eyes, and brought a little bit of light
and walking again. I took my last hospital. My local occupational into my dullest days. He pointed out
walk on the 22 March 1989. The therapist showed me an article in different types of sports that were
only thing that the TM now causes a disability magazine; it was available to disabled men and
me problems with is pain, paralysis, outlining the benefits of taking women. He also said that if I was to
and the bladder. part in sport. Being an ex-service train regularly, there might be an
person, sport played a big part in opening to get me into national and
When the hospitals had completely my life. Therefore, I was able to international events. At the time I
finished with me, I went home. We channel all my energy and pain thought that he was full of hot air, but
were moved to a more suitable house into rebuilding some sort of life as the day progressed, I saw different
in St. Albans Herts. After the diag- for my family and myself. disabled people all taking part in
nosis I became a sort of slough spud; different sports. It was then that I
I sat in the front room watching TV Before my diagnosis I was a very realized there was something there to
all day, yelled at the kids because the sporty type person, who went for replace what I’d lost through my
pain was so bad, and basically made some running, and a little bit of disability.
everyone have a bad day along with swimming when I could find the
me. In fact, I often told the wife to time, but I was not the Olympic Then Wally showed me all types of
leave me and give me a divorce. champion at anything. Perhaps I equipment that are used by the
Then one day, we had a massive ar- have started things rolling within disabled. There were throwing
gument and once again we went my family now. chairs, basketball chairs, and chairs
round the same track. Me moaning for throwing the Javelin, which I
that I could not do anything for my- BEWSA stands for the British thought in the hands of disabled
self. We had no where to go, and my Ex-Service Wheelchair Sports chaps was a
life was a complete bore, so to speak. Association. It is a national asso- bit dangerous. I was then introduced
I told the wife that I wanted to die. ciation and is part of the Royal to a chap named Geof. Now, I
She then turned up and said, “fine, if British Legion that helps to fund thought that I had problems. But
you want to die then go ahead,” and the Association. It is quite simi- Geof had more than anyone else did.
then gave me the morphine pills. lar to your PVA, with which He was away on exercise with the
Annie then went out and left the BEWSA has grown great links. Royal Marines, and he was involved
wheelchair outside. So, I got myself We quite often send a team to the in a road accident. Because he had
off the Loo (John) and went outside PVA games each year. his legs on the dashboard of the
and dragged the chair in, with me ly- landrover, he had both of his legs
ing on the floor. It took ages, but I I then went on to take part in the chopped off; one above the knee and
did it. When the wife got in she was Leonard Cheshire Foundation one below. He also had massive
astounded that I had not taken the Project that was called internal injuries.
overdose. Annie said, “you did not “Workability.” The foundation
finish what you planned to do; did was kind enough to give me a His sport was wheelchair racing. He
you not have the bottle?” I re- computer linked up to the inter- had a chair that made my normal
sponded to her that there was some- net, and I passed the course and NHS wheelchair look like it was
thing worth living for. I have never graduated with a RSACLAIT something out of the dark ages. He
been a religious-type person, but on which stands for the Royal Soci- then went on about all of these major
that day, I’m sure that G-d had a pur- ety of the Arts Computer Literacy events in which he had taken part.
pose for me. Ever since that day, and Information Technology. He then mentioned how much
things have never got me down. I get This is how I discovered the BEWSA had helped him get over the
depressed, but that is because of the TMA. I also found out more bad days in his life. There was one
pain and all of the other problems we about BEWSA and other wheel- thing that shocked me. Not once did
have to put up with. That day I said, chair sports associations. he mention his disability. I thought I
“I got this problem, and I can work had problems, mine were nothing
round it.” Also, from that day on, So, I went along to the spinal compared to Geof’s.
Annie has always let me ask her if I hospital, namely the famous
wanted help. Stoke Mandevale in Aylesbury. Anyway, I signed up there, and paid
There I meet a chap named Wally my membership subs, which was
The Transverse Myelitis Association Page 31
only £10.00. I thought that this was team from BEWSA came in sec- cannot get out and do my training.
a good value. I then started to go ond to the USA. Unfortunately, I
away on training weekends. Here I did not take part in these games My Sport Career
was taught not only sporty trades, because of a shoulder injury that
but I was shown how to transfer had occurred during training Now things started to progress. Like
from a wheelchair to say a car seat. weekends. I said, I had been given the chair and
I was never taught this in the roller, and it was now my turn to
hospital. I then met up with Geof, Before I competed in the Brug- change my life like my old mate
and we got talking about wheelchair gen, it took many months of hard Geof. Geof was kind enough to be
racing. Then the Association was work, both at the RAF base and at my training coach for the Bruggen.
kind enough to lend me a Bob Hall home. I had to be self-motivated Every time that I had a problem, he
Racing wheelchair, along with a to get outdoors and face the fact was there. I first got started by
Bromakin Roller. The purpose of that I had to do at least 8-10 miles getting the chair to a dealer, who
the roller was if the weather was on each day. Then I had to go to the checked to make sure the chair was
the British type, wet and windy, I local gym, and take part in a rig- in a roadworthy state. Basically, I
would be able to stay inside a wheel orous training schedule that had did not want the wheels falling off as
whilst watching my neighbours. been set up for me by the team I was going along. I was lucky, all I
Then the team manager informed me manager. The biggest problems needed was some new tires.
about this race that was held in that I had were pain and my blad-
Germany, in a town called Bruggen. der. The pain played up when the Then I joined a local gym where I
He thought that this would be a good weather was really cold and wet, was able to pump some iron, and
start for my racing career. but I had to get out and do some- work on the cardiovascular part of
thing. The other problem was the body. I used weight training to
Training Weekends and Race with the “water works” in that it increase my upper body strength; the
Preparations would continue to empty. The cardiovascular exercise was designed
doctors said the only thing I could to make my heart work faster. This
Training weekends were held on a do was split the condom catheter part of my training played up with
RAF base in the UK. For security into two so I ended up having a the TM, because of the fatigue.
reasons I cannot tell you where; I leg bag strapped to each leg. This However, the more times that I did
hope you understand. Here we were was necessary because I had to the workouts, the easier it became to
put through our paces by an ex-PTI take on a lot of fluids during the handle. It was nice to be taken as a
who had broken his neck in a game race. I was also lucky, because normal person and be treated like one
of Rugby. And they say the game is my son also came out with me by other members at the gym. They
safe. We were placed in groups during the training periods. This started by asking if I needed help
where we completed different dis- then meant I had someone to talk opening doors and moving
abled sports, such as discus, shot- to, which helped pass the hours equipment, but as the time went on,
putting and javelin. We then had pe- that I was out. I also had prob- they saw that I wanted to be treated
riods of intensive physical torture; it lems with my legs. They would like the rest of them and they started
was like being back in the Army. keep on spasming as I was push- treating me like they treated each
Then once that was all completed, ing along. The spasms never other. In their words, I had to ask
we decided what sport we wanted to threw me out of the chair, but it them for help. It was nice knowing
continue and specialise in; this is was another problem that I had to that all I had to do was ask. After a
when I chose wheelchair racing. We deal with. couple of months, there was a new
also did campaigning for better ser- instructor who joined the gym. He
vices for war veterans, like war pen- As each week passed, I began to was ex-service so he was able to give
sions, etc. Then, in 1993, we had the feel different in some way. I can- me some more valuable assistance.
Challenge 93. This was where many not explain what it felt like, but I He even worked out with me. Then I
countries, including the USA, came do know that it made me think started to take the chair with me to a
across to the UK and took part in the how lucky I was that I did not local running track where I learned
first-ever disabled ex-servicemen take the dreaded pills that day. I how to handle the chair under a type
games. These were held at the fa- now knew that I had passed my of protective curtain. I did not want
mous Stoke Mandevale Spinal Unit darkest days. I still get de- to start my endurance training by
in Aylesbury UK. Of course, the pressed, but this is only because I taking the chair on the road, and I did
Page 32 The Transverse Myelitis Association
not know how to handle the chair learn to fly solo. For now, the the rest of the pack. It helped a little,
and avoid going under the first car wheelchair racing is my priority. but not a lot. I was going fine. The
that I came up against. The way that legs were causing a few problems,
Geof used to move in his chair, he After the flying, I had completed but not as bad as I thought that they
made it look so easy. But when I the Workability Project. I had were going to be. I settled myself in
got in mine, believe you me, it was taken the word-processing, behind another chap, who I had been
not easy. You have to make sure spreadsheet, and online drinking with in the mess the Friday
that the chair is always running communications examinations. I night before the race. He had lost
straight, and that you are pushing the was then awarded the RSA both of his legs in the Falklands War.
wheels to get the best out of the certificate. I then started a new I got to the centre of the town and
chair. I had problems getting into course called the European was going to approach the last corner
mine, because my legs would not Computer Driving License. This when I heard this sudden “hissing.”
bend. This caused me some severe was a computer course run by the I had four miles to go and I had
pain and discomfort. Even today, British Computer Society (BCS). picked up a puncture. What bad luck
they play up. But like everything I continue to plod my way I heard the crowd say. I would not
else, you learn to take the bad with through this course; it is longer let this get the better of me. So I put
the good. than the Workability Project. all my weight on the bad wheel.
This made the air in the good one in-
After going on the running track, I So, from then on, I was always flate slightly; this would help me to
ventured out onto the roads, and then busy either sitting behind a get to the end. It did but in a longer
I hit a snag in my preparations. computer with my head stuck in a time than I had hoped for. I went
Nobody told me that I needed public book, or I was stuck into pushing home on Monday, completely satis-
liability until a policeman stopped a wheelchair around the streets of fied. I had completed something that
me. But this did not cause too much St. Albans. It is nice because the medical people thought that I
of a headache. I then carried on people often remark at the would never accomplish. Even my
pushing with this new piece of paper difference in me. own Doc did not think I would fin-
in my pocket. I then increased the ish. I was not in the first group, but I
amount of miles that I did in each Anyway, the training for the was not in the last.
push. Some days it would be eight; Bruggen continued for many
some other days, it would be about months. There was a combination My next race is the New York City
10 or 15 miles. This roadwork was of swimming, weight-training or Marathon in November. But first me
incorporated with my gym work. pushing the chair. Then in March and the wife are going on Holiday
After a couple of months, I was 2000, it was time for the last push. for a week. On my return, it all
really keen to get outside and get the Geof had told me, that one month starts again. Watch this space; I’ll
wheels moving. It was like it was before the race, I should only train keep you posted on my progress.
taking over my life. The wife also 3 days per week. Now, this was a
mentioned that I was a different chap big culture shock. My body had Mel
to live with and the kids backed her started to get used to going mel@mcorley.freeserve.co.uk
up. everyday. But I had to listen to St. Albans Herts England UK
Geof; he was more experienced April 26, 2000
I then started a new venture; I went than me. This letter has been a long time
flying. There is an association called coming. Please be patient with this
the British Flying Club for the So, on the 11 April, I took off for long drawn out story! A year ago I
Disabled. Their aim is to get as Germany. The race was planned was trying to decide if I should
many disabled people flying as they for a Saturday morning, and it continue my education after earning
are able. I went one day in August was being held on a RAF base in an Associates Degree from our local
1999. Although I found it great fun, Germany. There were loads of junior college. The university I
it did not give me the same buzz as able-bodied runners and there would attend was difficult to
the racing, though it was nice to see were just as many wheelies. The navigate and the major I wanted to
the wheelchair on the ground as we race started at 11:00 AM. Be- go into was one that I was sure I
took off into the Oxfordshire skies. I cause I was a novice and I was would be discouraged from trying to
was sent a form to apply to go to not the only one, we were allowed earn. Fortunately, Social Workers
either South Africa or California to to start at least 30 minutes before are the kind of people who like to
The Transverse Myelitis Association Page 33
Life After TM: Finding the appointment for the following tuition and books paid for, and they
Light and a New Career at the week and again a two-hour helped pay for the lift in the van I use
End of the Tunnel session with the same results. and the balance that my insurance
Darlene Maynard Now, here I have to mention that did not cover on my scooter. My life
I have suffered from depression a compared to a year ago is completely
few times over the years but the different. For the first time in years,
help people. The head of the last time was the first time I had I look up as I “walk” (on my
department surprised me by telling been on medication. I truly scooter). I don’t have to worry about
me that I was perfect for the believe that if I had had someone falling anymore! I get from one
department within five minutes of like Beth from the beginning, I place to another so fast, it still
meeting me! As we discussed the would have had less trouble with amazes me. I love my scooter and
courses I would take, I brought up depression over the years. Beth the freedom it gives me. My grades
my concerns about navigating the had already been through are great. I love the people. Social
campus and before I realized what everything that I was going Workers are great people but their
had happened, she had a former through and I believe it was only fault is that they try to help too
student on the phone and I was difficult for her to relive it all, much sometimes. I have yet to open
talking to her and making an but she did for my sake. Well, a door by myself at school! It’s
appointment for that very same maybe for both our sakes. As either the automated doors or a
week. Before the week was over I others that have had a disabling fellow student. I have never enjoyed
would be registered for fall classes, I disease, we endured the stares, life as much as I do now. I am much
would have a peer counselor, and I and rude comments, thoughts more active than I ever thought I
would reapply for Vocational unlike “normal” people ever have would be at this stage of my life. I
Rehabilitation Services. As I said, cross their minds, the struggles had thought about the time I would
Social Workers like to help people just to keep up, and finally, being be in this condition. I knew it would
and they do not fool around when yelled at for using handicapped happen. I just did not expect it to
they are able to help someone! parking spaces because we look happen this soon. But, now that it
too young to have a disability! has, I am surprised to find myself
First, my peer counselor. I hope that But that was not all Beth did. She enjoying life so much. My daughter,
you and everyone with transverse helped me realize that by using a who is nineteen, cannot believe how
myelitis have heard of The Centers wheelchair or scooter, I would much I do. I volunteer at The Center
for Independent Living! I had not become more independent. There for Independent Living of Northwest
until that day and I really could have were trade-offs to be sure. And Florida. I’m also a Board Member.
used these people long before now! then she accompanied me to the I just finished my junior practicum
The first time I talked to Beth, I wheelchair clinic at my request working 120 hours this semester at
knew she was special. She was to be sure I was given the best Sacred Heart Hospital. I mentor a
bright and bubbly and so easy to talk recommendations possible first grader. Oh, and I go to school
to. When I met Beth for the first because I was too emotional to full time. This is the time I thought
time, well, she looked like her voice. think very clearly. I’d be spending reading, watching
Beth has a rare form of muscular TV, just enduring the last few years
dystrophy and uses a wheelchair but Beth was also my advocate and of my life; and I am so glad it
that is not the first thing you notice encouraged me to reapply to the doesn’t have to be that way.
about Beth. Her face reflects state’s Vocational Rehabilitation
everything you hear in her voice. Office for assistance in earning The most important part of this
She has very short, gray hair, and my degree. My previous attempt whole story though is that Beth knew
she just shines. I don’t know how was not what it was supposed to someone with transverse myelitis
else to explain it. Our first meeting be, but this time I had someone and she had your website address.
lasted at least two hours. Did I who knew what I was entitled to Why is this so important? March 2,
mention that Beth likes to talk? We and counseled me on how to 1962, this nine-year-old little girl
talked, we laughed, and we cried, handle unanswered phone calls woke up one morning paralyzed
and we talked some more. I was and one delay after another. As a from the waist down. As well as I
exhausted by the intensity and range result, I am now attending the had recovered and had kept my
of the emotions I went through in University of West Florida, I am spirits up, there was always
that two-hour period. We made an using a scooter, I am getting my something missing. I thought it was
Page 34 The Transverse Myelitis Association
because we were an army family and out in public and having to worry me. I cannot tell you how many
there was no extended family around about gas, because my sphincter comments I overhear from people
for support, but that was only part of does not work properly, or hav- who think it’s great. I even had a se-
it. I did have uncles that came to ing an accident, which happened curity guard at the hospital stick his
check on us, even in Germany. We all too often as a child in elemen- thumb out as if hitchhiking.
were transferred to Fort Sam tary school before all the won-
Houston, Brooke Hospital in San derful products they have now! I hope this hasn’t been too long or
Antonio, Texas after a couple How many people know what too boring. What I hope is that peo-
months and it was there that I found it’s like to worry about falling? I ple can see that even with a disabil-
two other people who had transverse don’t need a crack in the side- ity, life can be very satisfying. Our
myelitis. One person was a woman walk to cause a fall, my own feet attitude makes such a difference. I
who had a three-month-old baby and will do that! Depression, I don’t know it is a struggle to stay UP but it
by then they knew she would be even want to think about how can be done. It may have to begin
paralyzed for the rest of her life. The bad it was, I want to enjoy how with medication, but counseling is
other person was a young GI. He good I feel now. Although I am vital so when you can get off medi-
was just beginning to get some always on guard for those awful cation, you can stay UP by yourself.
feeling and movement back but I symptoms! Your points about Sometimes you have to stay on
don’t know how successful he was. I needing to talk about all these medication and that’s okay too. I
was lucky. I was able to walk again things are exactly why I want to can’t say that traditional counseling
and I do not have the pain that I’ve be a Social Worker. They are ex- doesn’t work, because it does. But at
read so much about. I do have the actly why I want to work with some point, a peer counselor, some-
usual bladder dysfunction so many of children with disabilities so they one who really knows what you are
us have though. Now my don’t have to go through all this going through, helps so much more
deterioration is due to age and the alone. There is a better life out than a regular counselor ever can. I
length of time my muscles have there for people with disabilities. will graduate in a year and I hope I
worked so hard to help me keep up There is happiness to be had and will not have trouble finding a job
with the “normal” people. But, last a life to enjoy. like most people with disabilities do,
year around this time, I found out but I will not regret any of this time I
that I was not alone. I was shocked A couple years ago, I took a class have spent earning this degree. I
by my reaction to finding out that in communication and the in- truly hope I can repay all the people
there are so many other people like structor had us play a game that have helped me get to where I
me. I was so overwhelmed that I where we would name a person am today. And I especially want to
could not reach out to anyone or to match the color she named. I thank you all for being there and
really share how I felt with anyone. I took this little test home and did letting me know that I AM NOT
tend to keep my feelings to myself it with my own children. My ALONE!!
probably because I’ve felt like I daughter chose me for the color
didn’t belong, even with my own yellow which really surprised Sincerely,
family (mother, brothers, and sister); me. When I asked her why she Darlene Maynard, Pace, FL
I never felt they really understood. thought I was yellow, she said Darlene.m@mindspring.com
They didn’t, how could they? because I was so sunny and Netta’s paintings are shown with
Now, a year later, it was all topped cheerful. Well, my depression Sam’s poem. The cloud, El Nino,
off by the most recent newsletter had gotten much better, but I felt was painted in February 1998
with your editorial and, again, I anything but sunny and cheerful. (acrylic on canvas; original size 25
could not get over the feelings of The way my daughter saw me cm x 20 cm). The birds were painted
having someone who knows how it touched me so much that when I in June 1998 (acrylic on canvas;
feels to feel so useless. During my choose the color of my scooter, I original size: 25 cm x 15 cm). The
last depression, the only reason I chose a bright yellow! It's a re- paintings are wonderful – Netta is
could not contemplate suicide was minder to me now not only of wonderful! To see these paintings in
my children. I simply could not do how she sees me, but it reminds color and to see her other paintings,
that to them. Even more than that, me to be cheerful. A really nice please go to Netta’s web site: http://
though, I have never put into words side affect of the bright yellow is go.to/netta
or read anyone else’s words describ- that it makes people feel more
ing how it felt to worry about going comfortable about approaching My name is Netta Ganor and I am 20
The Transverse Myelitis Association Page 35
Page 36 The Transverse Myelitis Association
In the meantime, I’m trying to do could not be right. When I tried to
The Painter: Netta Ganor
the maximum I can to make my play catch with my son and couldn’t
Israel
life as normal as possible. I just move or feel my arm, I knew
don’t see any point in sitting something had to be done. With the
years old. I am a c-4/5 quad from Is- around the whole day and support of a neurologist friend, Dr.
rael. I was struck down with Acute mourning. Currently, I’m a Christopher Martino, and my
TM on November 25th, 1994, at the second year student for Computer primary care physician, Dr. Leonard
age of 15. It all started one Friday af- Science at the College of Finn, I was referred for evaluation at
ternoon, after I came back from Management in Rishon Letzion. St. Elizabeth’s Medical Center
school. After lunch, I suddenly I’m still a fan of sports by neurologist Michael Hayes, and
started to feel a terrible sharp pain in (especially basketball) and stayed on May 23, 1997, my diagnosis was
my upper back (behind the shoul- an athlete in my soul :-) I was a confirmed as acute transverse
ders). Gradually, but quite fast, in tennis player and an athlete in myelitis. On that day, my life
less than one hour, I lost sensation high school. changed forever.
and the ability to move my hands
and finally my legs. My mother im- After one year of being disabled I responded well to IV and oral
mediately called an ambulance, (back in 1994-5), and after steroids, but was unable to come off
which took me to the hospital. I was watching some other quadriplegic of the steroids. I was one of those
taken to the IC department and was people painting with their with ongoing, smoldering TM. With
diagnosed after 10 days with Acute mouths, I decided to give it a try every effort at weaning me off of the
TM at c-3. Of course, I was venti- myself. It was very hard at first, steroids, my symptoms worsened,
lated. After three months, more or but as the time went by and with and by December of 1997 I could
less, I saw the first improvement; my a lot of practice, I learned how to barely walk. I fell frequently, once
left arm started to move. Gradually, paint this way. cutting my mouth so badly that
in the next one and a half years, I got I was the busy mother of two stitches were needed. I had severe
rid of the vent due to hard work in young sons; den mother, soccer spasms, if I extended my arm, or
exercising my breathing muscles. and T-ball coach, wife of a tried to open a twist jar, and I didn’t
After spending more than two and a physician, and nurse practitioner have enough strength to open a pop-
half years in the rehab hospital, we providing primary care to over top can of soda. Cytoxan helped
all had to move to a new house, and 100 elders in ten nursing homes tremendously, stopping the
that included leaving our city, Jeru- when I began to notice numbness progression of symptoms, and I
salem, in order to be geographically in the fingertips of one hand. began to reclaim a little of my life.
closer to our family. Over a period of several months,
I noticed the odd numbness and There have been many ups and
Today, I still have no sensation from tingling spreading up my arm. downs, as other autoimmune
the shoulders down, including my Then I noticed the same thing disorders struck. I developed severe
arms. I move the left arm without happening on my other arm. low blood pressure, and
feeling it. I’m driving a motorized Electric shock sensations shot inflammation of the eyes. I was
wheelchair, paint and write with my down my arms, if I flexed my found to have an unstable cervical
mouth, swim(!) with my head and neck or coughed. One spine, with the bones putting
shoulder movements and do things neurologist I consulted brushed pressure on the spinal cord. I
that people are not supposed to be me off, ordering no tests and required surgery, with placement of
able to do in my physical condition. insisting this would go away delicate screws and plates to prevent
I’m very optimistic as for my condi- The Poet: Sandra Sam further spinal cord damage. Multiple
tion in the future. I don’t know what Melville medication adjustments have been
will happen with me or when. I do Boston required to maintain function at a
know that others with TM have had livable degree. In order to live a
improvements that are measured in “normal life,” I take 30 some pills
years. I’ve never lost hope and I’m without treatment. My daily, and intravenous immunoglobin
sure that someday in the near future handwriting deteriorating, unable every four weeks. Today, I have
the medicine will find the right cure to type because of the numbness some degree of function of my hands
to our syndrome. in my hands, unable to feel the and arms, and can maintain my home
skin of my patients, I knew this and family with outside help doing
The Transverse Myelitis Association Page 37
housework and laundry. I plan my are keen to see the group Our Community relations Manager
activities carefully, with rest as develop. at the Association did a large media
needed. I can walk well for short release for TM Day. We also
distances, but use a cane or stick for Through its post polio developed posters for TM Day and
long distances. I have tremendous membership this organisation is had them distributed in various
support from my husband and sons, used to dealing with the problem General Practitioner’s rooms,
and other family members. I count of raising awareness of a little Community Health buildings and
myself fortunate in my abilities. My understood condition. In hospitals.
life is changed, but it is good. And Queensland the medical
TM does not have me. profession is sadly lacking in People who could not attend the
knowledge and understanding of awareness day meeting will receive
The Transverse Myelitis Support post polio. TM is another such copies of Dr. Geraghty's address in
Group is a group that developed in condition. our newsletter and videotapes will be
Australia, based in Brisbane available from our library. We
Queensland to provide information This year the group invited Dr. recently forwarded copies of the
and support to individuals with Tim Geraghty, the new Director TMA newsletters to all those in
Transverse Myelitis, their caregivers of the Spinal Injuries Unit, at the Australia who are on our database.
and families. The Second TM Princess Alexandra Hospital in Errol White, a member of the TM
Awareness Day meeting was held at Brisbane, to give the Second TM support group, provided us with the
the Paraplegic and Quadriplegic Awareness Day lecture to our originals.
Association, Kangaroo Point, members and staff. Dr. Geraghty
Brisbane, Queensland. informed those present that he In 1999 the Association registered
was not an expert on transverse the name Transverse Myelitis
The Paraplegic and Quadriplegic myelitis and that his specialty is Australia and all mail we send out
Association of Queensland is an rehabilitation. Dr. Geraghty gave goes to members across Australia
organisation that provides services an address on TM and the impact who we have on a separate database.
and support to people with spinal of the disease. We are pleased The Association has Member
disabilities including quadriplegia, that he is prepared to take Networks and there are local and
paraplegia, post polio and transverse transverse myelitis on board and regional forums throughout
pursue an interest in the Queensland where all members
AUSTRALIA condition. (including members with TM) come
Transverse Myelitis Awareness together around issues that are
Day: 17 May 2000 We had an audience of about 25 impacting on their lives as a result of
Penny Beeston individuals. Twelve of the living with a disability. This includes
pbeeston@pqaq.com.au people had transverse myelitis. issues of access to services and the
Some had traveled from regional environment (built and natural),
Queensland and one had traveled health issues, and equipment issues.
myelitis. I am manager of nearly 1,000 kilometres to attend. These are very dynamic gatherings
community services in the We had a bar-be-que after the and provide great linkages with all
organisation and my major role is to address and people came together members across a large state. As an
develop support groups and member in an informal group to share organisation of 40 years we take a
networks across Queensland in experiences. Queensland is a long-term view to raising awareness
response to our member needs. very large state and many of and build on each awareness
These groups are all convened by those on our database are spread campaign the following year.
people with spinal disabilities. The across enormous distances. The
Transverse Myelitis Support Group woman who traveled up from National Radio Interview (RTE)
commenced about two years ago at New South Wales to attend has a with Pat Kenny
the request of Ian Hawkins, a child with Transverse Myelitis
member with transverse myelitis. and she had attended the Seattle Hello to everyone and greetings
Ian is the convenor of this group. Symposium in 1999. After lunch from Ireland. On Monday May 8th,
We do not have a large number of she spoke to members about her RTE Radio Telefis Eireann, which is
people on our database with TM, experience. our National Radio and Television
however, those members with TM Service, came to my hometown,
Page 38 The Transverse Myelitis Association
Westport, to stage a public about how I had acquired this dis- Anyway, I kept quiet calm. My
awareness meeting on “the Future of ability and I described TM. daughter taped the interview for me,
Broadcasting in Ireland.” These There was great interest. By talk- and when I listened, I couldn’t
meetings, which are being held at ing out at the meeting, I made all believe how confident I sounded.
various venues around the country, of the people there, around two to My other daughter, who is a
are part of a strategy by RTE to three hundred, aware of TM. Pat reflexologist, was working on a local
promote their station and to get was actually sitting in the audi- bank manager (doing reflex) when
public opinion on the programs ence, just two rows from me. And the interview came on the air, so she
when I told about my disability asked if he would mind if she
IRELAND and a request for an awareness listened to it while working. He was
Creating TM Awareness program interview, Pat turned interested in hearing it also.
Ann Moran
around straight away and said that Afterwards, he said how articulate I
annmoran@gofree.indigo.ie
he would certainly do it and that I sounded. Okay, Okay, I’ll stop being
was to talk with his producer after big-headed!
the meeting. Pat did come and
being shown and listened to on RTE. talk to me himself afterwards, as There were a few calls into the studio
I went along to the meeting because, well. He was very interested. before I left, so I was able to take
since returning from the TMA He asked me, “so this could hap- them. I got home around 3 PM and
Symposium in Seattle, I have wanted pen to anyone, even me?” I told spent almost all of the rest of the day,
to get some awareness out there into him that TM knows no age or until 10 PM, on the telephone
the public in Ireland. But I had not class differences. It can happen answering calls about TM. I had the
done anything about it and had to anyone. same feelings with some of these
become annoyed with myself. So, people, just how we all felt in Seattle
when I discovered that RTE was An interview was to be set up for when we met; the sheer relief of
coming to Westport, and that Pat the following week. We uncov- having some other person to talk to
Kenny was also coming, I just knew ered another ‘awareness’ prob- who knows and understands how and
I had to go to the meeting. I must lem. The studios, which are what you feel like. I even had a call
explain now about the RTE people about eleven miles from me, were from the Rehabilitation Centre from
who were at the meeting. There was found to have three flights of con- a lady who had been recently
a panel of six people who were crete steps up to it. I guess that diagnosed. We spoke for almost an
producers and/or presenters of no one volunteered to carry me up hour. I think it was also a relief for
programs, both on TV and radio. as they put the interview off until her. They had not told her much at
Other reporters and presenters from the next week, and I was asked to the hospital where she was
the west of Ireland were also in travel to Galway, which is 52 miles diagnosed, and had sent her on to
attendance. But the most important from me! rehabilitation. Thursday was full of
person was Pat Kenny. Pat is one of Since then I have also done an many calls also. It feels so good to
RTE’s, most popular presenters. He interview with one local radio be able to help others, and
hosts a weekly TV program of chat station, a lot of which was about particularly thinking back on my
and entertainment called “The Late disability and I did get a plug in own experiences. I also spent a lot
Late Show.” He also does a radio about TM. of time on the telephone on Friday. I
program called “Kenny Live.” Pat have been contacted by 28 people. I
is such a pleasant person, and I Well, I had my “few minutes of
have given all of these people the
found him easy to talk with. He is fame.” I did the interview on the
address for the TMA and also the
well liked here. morning of Wednesday, May
tmic. For those who do not have
24th. All went very well, and I
access to the Internet, I will be
I am not so great about speaking out found that I didn’t have enough
sending them information about the
and was just going to see one of the airtime to tell all of what I had
TMA. I will be keeping in touch
producers after the question and an- planned! I only had about twenty
with all of these people.
swer session. But then I got to minutes. I had a whole pile of
thinking; that was the wrong way to notes on the table in front of me,
Center for Independent Living
go about it. So I got up the courage and I didn’t get to use any of
to raise my hand to put a question to them. I had butterflies on the
In 1991/1992 a Center for
the panel of producers. I explained journey to Galway studios, which
Independent Living was started up in
is about 50 miles from my town.
The Transverse Myelitis Association Page 39
our capital city, Dublin, with the had a chance to become part of to start over with a new PA. I,
help of a lady from, Berkeley, society. Some have found part- myself, had to leave the scheme after
California. She had been in Ireland time work. Having the three years. I have just started back
on a holiday and could not believe opportunity to leave their home with the group about five weeks ago.
how people with disabilities had to environments, get out into their I do a lot of my work from home. I
cope with everything. She went communities, and see how other am able to work out my own time
home and was thinking about Dublin people live their lives, has made schedule and try to visit everyone at
all the time, so eventually she such a difference to many. least twice a month. The rest of the
returned the next year, gave up what time we keep in touch by telephone.
she was doing in Berkeley, and There was a 22-year-old man As Mayo is a large county, and the
helped to set up the first Center for who had always lived at home roads are not good, it can take an
Independent Living. The Dublin and rarely went anywhere. When hour and a half to travel fifty miles.
Center was working very well. She I first started to visit him, I could I sometimes have to do more than
then decided to open two more barely hear him speak, because one hundred miles in a single visit.
Centers across the country, one here he was so shy. I would have to We are currently working, along
in Mayo, the other in Clare. coax him and keep asking him with other disability organizations,
questions just to be able to get under the flag of Disability
Mayo Center started up in May of him to talk. Two years later he Federation of Ireland (DFI). I had a
1995 and I joined them in June of really surprised me by giving a meeting Tuesday with my Program
that year, as a Leader Coordinator thank you speech to our Program Manager, who has asked me to apply
(name given to the person with a dis- Manager. It was short but it was to DFI to form a Support Group for
ability). My duties were to visit with such a joy to hear. He now TM. This was wonderful news, as I
all the people who wanted to be part works three days a week and may be able to get a little funding to
of a Center for Independent Living lives in an Independent Living help with phone calls and postage. It
(CIL). Becoming a participant in a Unit on the grounds of a Cheshire will give us an opportunity to appeal
CIL offered a person the opportunity Home. He has complete control for funding for TMA and will also
to work with a Personal Assistant over how he lives his life. create more awareness about TM.
who would assist them in living a
more independent life, and also help Things are still going very well Stars For A Brighter Future: Rais-
to take some pressure off of their with Centers for Independent ing Funds for TMA
families. We were able to get Living. We have an on-going
Personal Assistants into the Cheshire battle with the Government to I am making a quilt in order to raise
Foundations (Institutions). This make permanent funds available funds for the TMA. I announced this
caused a few problems at first with for this very necessary service, project on the TMIC by requesting
the staff in the homes, but now it is one which is considered a norm that people make blocks of 12 and a
acceptable. The Personal Assistants in other European Countries. At half-inch square depicting stars. Any
have helped to provide a new lease the moment it is run on a star pattern will be acceptable. The
on life to a lot of people; people who Community Employment colours I have chosen are
have often not had a say about their Scheme, which means that people predominantly blues and creams. I
lives, or never been outside an who want to become a Personal have chosen to name the quilt “Stars
institution, or had always been told Assistant have to be unemployed For A Brighter Future.”
what they could and could not do. for a year before they can take
We have two Personal Assistants in this job. Also, when they have It was suggested on the TMIC that
Mayo. completed a year working, if they the Quilt be auctioned over the
are less than 35 years of age, they Internet. This is a good idea, but if I
There were also people who lived at again have to relinquish their am going to pursue this approach, I
home, and were cared for by their roles as a Personal Assistant until will need assistance from someone
families. Many of these people also they are unemployed for another who has had previous experience in
lost a great deal of their year. The Leaders (PWD) then doing this type of auctioning.
independence, becoming very have to find another PA. This Another option would be to hold a
dependent on their families. As a can be very distressing for some raffle for the quilt. We will have
result of the Centers for Independent people, as they have gained trust plenty of time to think about this, as
Living, many of these people have in this person, and they now have it will take a while to get it together.
Page 40 The Transverse Myelitis Association
Members of my quilting group have able to attend the meeting The medicines do not travel
offered to help me to sandwich it and because he had a previous throughout the body and so there are
get it ready for quilting. I will takes engagement in the area. fewer side effects. Patients
pictures of the quilt when it is frequently report good to excellent
completed and will send them to Jim The meeting began with results and wish they had started
to post on our web site for everyone introductions; I wanted Dr. Kerr using the pump sooner as a means of
to see. If you would like to to meet our NY TMA members, pain/spasticity management. Dr.
contribute a block for the quilt, and some of the attendees were Kerr also emphasized that this
please contact me via email. I would meeting each other for the first procedure should be done only by
encourage as many people as time, as well. After the luncheon, experienced doctors or at large
possible to participate in this project. Dr. Kerr began his formal hospitals and/ or a major university.
I would really like for this to be a presentation. He opened his
truly international quilt by having it remarks with a description and Dr. Kerr explained that TM is mostly
composed of blocks from our TMA anatomy of the spinal cord and a one-time occurring illness unless
members from all over the world! the definition of TM and how it there is an underlying condition, such
effects the spinal cord. He as Lupus or Multiple Sclerosis and
My best to everyone, discussed the four major then TM can become a relapsing or
Love, Ann, in a rainy Westport symptoms associated with TM, reoccurring condition. He
annmoran@gofree.indigo.ie which include weakness, categorized TM as an auto-immune
numbness, bladder and bowel disorder which occurs when the anti-
dysfunction and pain. His bodies produced by the immune
On Saturday, May 27, 2000 the third comments were a general system to fight foreign substances or
meeting of the New York Transverse overview of the disease before viruses, instead attack the cells they
Myelitis Awareness Group was held getting to the more specific were produced to protect causing
at Ben’s Delicatessen and Restaurant aspects he wished to discuss. focal inflammation at one level of the
in Bayside, Queens. The luncheon, spinal cord. Dr. Kerr said that TM
support-group meeting marked the He remarked that most patients can happen at any age and nor is it
first anniversary of the New York with TM have spasticity while a gender or racially specific.
State Resolution and Proclamation fair number of them also have
of Transverse Myelitis Awareness pain due to the illness. He further Dr. Kerr then posed a question for
Day. On this special occasion, fifty commented that both symptoms the group. He asked, “how many
persons attended the meeting, may interfere with recovery and patients were diagnosed with TM at
including TM members and their with quality of life. He explained the onset of the illness versus how
families and friends from all over the that spasticity often makes it many were diagnosed much later?”
New York region. Some of the harder to move about or to use At least half responded to a later
attendees traveled from as far as one’s extremities in a coordinated diagnosis. He explained how we can
Newark, New Jersey and Madison, way. Many medicines are better educate our doctors to TM by
Connecticut. prescribed for these conditions, providing them, for example, with
but unfortunately, he said the information from the Johns Hopkins
Dr. Douglas A. Kerr, a co-director doses may be inadequate or in Transverse Myelopathy Center
suboptimal combinations and website or the TMA website. Dr.
NEW YORK
have troubling side effects, such Kerr feels very strongly that you
NY Transverse Myelitis
as fatigue. He went on to say that should not remain with a doctor who
Awareness Group Meeting
at Johns Hopkins, a novel does not take an ongoing concern and
Pam Schechter
approach is employed and may interest in providing you with the
(718)762-8463
be appropriate. A small catheter best and latest treatments for TM.
from a subcutaneous pump is At this point in the discussion, many
and distinguished neurologist at inserted directly into the fluid members who had come especially
Johns Hopkins Transverse space which bathes the spinal prepared to ask Dr. Kerr general or
Myelopathy Center at Johns Hopkins cord. This method can personal questions about TM
Hospital in Baltimore, MD had administer medicines directly proceeded to do so. Some questions
kindly consented to be our guest into this fluid either for pain concerned the use of the
speaker. Fortunately for us, he was control or for relief of spasticity. subcutaneous pump and who might
The Transverse Myelitis Association Page 41
benefit from it. Dr. Kerr replied that response, will come up positive attempted to have June 6th be
the pump would only help those for TM. He also suggested identified as TM awareness day. I
where the inflammation effected the seeing a neurologist who approached my state representative
lower extremities. He said it would specializes in MS or with this request. By Concurrent
not benefit those with shoulder and demyelinating disorders. In order Resolution No. 74, the Ohio General
hand involvement. Another member to follow Dr. Kerr’s presentation, Assembly has recognized June 6,
wanted to know if new treatments or each member received 2000 as Transverse Myelitis Day in
drugs would help those with a long- comprehensive literature obtained the State of Ohio. The Resolution
standing TM condition. Dr. Kerr from the Johns Hopkins was sponsored by Representative
replied that, yes, it would also help Transverse Myelopathy Center
and benefit those who have had TM Website. There was literature OHIO
a number of years. One of the thoughtfully supplied by Debbie June 6, 2000, Transverse
members told of taking a Capen, a TMA Officer, which Myelitis Day in Ohio
prescription drug to lower her included a guide to disability Richard J. Boyle
cholesterol, but instead worsened her rights laws, TMA brochures, and
TM condition. Dr. Kerr explained a news release about the TMA
that you have to be very careful celebration of five years of Ron Gerberry from the 65th House
about the prescription or over-the- service. District. The purpose of the
counter drugs you take because some resolution is to heighten the public’s
of the side effects may cause muscle The consensus of the members awareness of TM. It recognizes the
weakness. Other questions were was that this meeting was a great serious need we have to educate the
about whether vaccinations or flu success. Our special thanks to public and the medical profession
shots can cause TM. Dr. Kerr said it Debbie Capen, Secretary of the about Transverse Myelitis. The
was possible although he didn’t TMA, for coming all the way resolution also recognizes Rachel
know of any studies being done to from California to attend our Dorocak. Rachel contracted TM
support this. An unusual question modest luncheon and especially when she was six months old.
asked by a concerned parent of a for bringing her delightful friend Rachel celebrated her first birthday
seventeen-year-old daughter who and companion, Lori Biehler with this past March. Her brothers, Kevin
had TM for two years was if there her. We wish particularly to and Matthew, initiated the Reading
was a possibility that, as happened in thank Jude Dudow for the for Rachel Program to honor their
her daughter’s case, temperature tremendous job she did in helping sister. The resolution recognizes the
sensitivity could be lost on one side us organize the meeting and wonderful efforts of the Dorocak
of the body. Dr. Kerr replied that performing all of the tasks family in raising money for TM
this was possible but quite rare, necessary for a successful research.
because temperature sensitivity loss meeting. Our thanks to all of the
usually effects both sides of the TM members who came to the
body. Another interesting question meeting and asked such When Rachel first got sick last
was posed, “Is there a difference thoughtful and pertinent October, we were in such a state of
between the lesion of TM and that of questions of Dr. Kerr. And most shock and sadness for our baby girl.
MS as seen on an MRI?” His of all, our heartfelt thanks to Dr. She was only six and a half months
answer was, “No, under a Douglas Kerr for his generosity, old when TM struck, right when she
microscope, the lesions would look kindness and incredible was just beginning to become
the same.” Another member asked knowledge that he so willingly mobile. Life had been so good, and
whether after six months or longer, shared with all of us. overnight all that changed. At the
would scar tissue show up on an Participants in the TMIC had beginning we saw improvements
MRI to indicate the presence of TM. been expressing a need to follow come very quickly and so we were
He replied that, yes, it can depending on Pam Schechter’s lead in New very hopeful for a recovery. But
on the damage done to the site. York and request our state Rachel’s progress slowed and we
Generally, Dr. Kerr stated that, for legislatures to designate a TM really had to face the reality of our
example, a somato-sensory evoked awareness day in states around situation and as a family we wanted
potential test, urodynamic testing for the country. In deciding the to do something positive for Rachel
impaired bladder function, spinal appropriate date, we, again, and for others who have Transverse
taps done to show any inflammatory followed Pam’s efforts and Myelitis. More than anything, we
Page 42 The Transverse Myelitis Association
The Transverse Myelitis Association Page 43
its newsletter or in the student’s throughout the country. Not only did
Reading for Rachel book bags to take home. we raise funds; we have also raised
Cathy Dorocak Matthew’s school was very awareness of Transverse Myelitis in
supportive; allowing us to talk to our community - something we have
the students on a live TV been thanked many times for doing.
wanted a cure for TM so that other broadcast that featured Rachel, In addition, this whole project has
families would not feel the same pain Matthew and Kevin. They even taught a valuable lesson about
and suffering that our family had to simultaneously sponsored another helping others in need to so many
endure. program called “Reach for the young people. Together, we can
Stars for Rachel” where kids make a difference!
Our sons, Matthew (age six) and could buy stars for 25 cents each
Kevin (age four) thought of the and decorate them with their As you read earlier in this newsletter,
actual fund-raising event, called name or other designs. These the Reading for Rachel Program was
“Reading for Rachel,” where all stars were hung all over a tremendous success! Considering
funds collected would go towards Matthew’s school showing that we initiated the program with
research to find a cure. We all support for Rachel. about one month of preparation and
needed to channel our energies in a were somewhat limited in the
positive manner and the boys wanted In addition to promoting the geographic scope of our
this to be the best 1st birthday present program in the local school communications, we were able to
they could ever give Rachel! … And system, we contacted the local raise significant dollars for The
it was. newspaper to do a story about Transverse Myelitis Association. All
Rachel and take her picture so the of the money raised by the Reading
The first thing we did was come up kids in the community could see for Rachel Program is designated
with a letter that the boys helped whom they were helping. We exclusively for the purpose of
write. It talked about what happened made the front page with a very funding TM research. And as you
to their sister, Transverse Myelitis large story and even larger are aware from Dr. Irani’s article,
and how families could help. We picture! Rachel was also on the TM research is already being
asked kids in the community to read local CBS news following the
The Reading for Rachel
as many books as they could during airing of Cody Unser’s story on
Program: Help Us Fund TM
the month of March 2000, the month 48 Hours on March 2nd. The
Research
Rachel would celebrate her 1st timing was perfect since the local Cathy Dorocak, National and
birthday. We also requested that newscast made reference to the International Chair of the
they ask friends and family to fund-raiser and also gave out the Reading for Rachel Program
sponsor them for a certain amount TMA website address where the
per book they read. At the end of the “Reading for Rachel” materials
month, we asked them to collect were available. Our church was
from their sponsors and send the also supportive, providing performed at the Johns Hopkins
money they collected to the information about our fund-raiser Transverse Myelopathy Center. It is
Transverse Myelitis Association, in the church bulletin. imperative that we raise significant
referencing “Reading for Rachel.” dollars in order to further this
At first, we emailed our own We have received so many research and to attract other
personal friends and family but also wonderful notes and words of researchers into the specific study of
asked them to pass the email to as encouragement from so many the causes of, and treatments and
many people as they could. In people around the country during cures for Transverse Myelitis.
addition, we got support from the this process and above all, we are
local school system, by having so very proud of our two sons. The Reading for Rachel Program
information about the “Reading for The fund-raiser has raised over represents the first significant
Rachel” program included in all the $6,000 for TM research and this activity of the TMA designed for the
school newspapers. The preschool is just the beginning! We will be purpose of raising research funds.
PTA, an organization we are very planning for another “Reading for We have been so delighted by the
involved in, as well as Matthew’s Rachel” campaign for March positive response to Matthew and
school, put all the materials (letter, 2001 and hope to get the support Kevin’s efforts that we have decided
reading list, sponsor form) either in of many more school systems to roll out the Reading for Rachel
Page 44 The Transverse Myelitis Association
Program nationally and a classroom teacher, if you are sociated with the international mail-
internationally. active in a parent teacher ings. As some of you are aware,
organization or association, if Pauline and I made an attempt to so-
We need your help! We are looking you have children in school, if licit support from Sarah Ferguson
for Ambassadors for the Reading for you are a retired school when we met her last year. We have
Rachel Program. Ambassadors play employee, we need you to not heard back from her; we will
a critical role since they will be the become an Ambassador for the only be relying on Sarah for weight
local contacts for this very important Reading for Rachel Program. loss. My next attempt at soliciting
fund-raising effort. There is Working with and through
significant competition for good people in the schools with whom A Growing International
cause dollars. When individuals are you have existing relationships is Membership; And Thank You,
deciding what causes and the most effective way to Errol
organizations they wish to support, promote the Program. But
they have many from which to please do not hesitate to appear
choose. People support at district offices where you do assistance was a letter I wrote to the
organizations that they know and not know anyone; you may find executive director of the World
they support causes in which they sympathetic and supportive Health Organization. I did not ask
have a personal understanding and people even where there are no for money; I requested any assis-
an emotional tie. As an personal relationships. tance they might offer me in finding
Ambassador, you are the person in organizations that could assist us in
the personal with which individuals Gunny is serving as the Reading this area. They never answered me.
will identify. Rachel’s story has for Rachel Program
definitely motivated a great deal of Administrative Coordinator. I sent an email message to Errol
empathy in people and her Should you wish to become a White seeking assistance. Errol
experiences have touched many in Program Ambassador, please answered.
the TMA as well. But people who contact Gunny as soon as
have no knowledge of TM will more possible. Errol is a TMA member from Aus-
easily relate to a person they know tralia. If you are a member of the
of or who lives in their own Richard J. Boyle TMIC, you already know Errol very
community. It brings TM that much 4843 Westchester DR 207 well. We have a relatively large
closer to home. Youngstown OH 44515 membership from Australia and New
Phone number: (330)797-9465 Zealand. Errol very graciously of-
As an Ambassador, we are asking GUNNY0011@AOL.COM fered to take the responsibility for
you to promote the Reading for reproducing all of the TMA newslet-
Rachel Program in the schools in Gunny will provide you with the ters and directories for our members
your community. In order to instructions you will need to in Australia and New Zealand and
effectively promote the Program, we promote and initiate the Reading for mailing them. As printing and
need to organize our efforts this for Rachel Program in the postage remains the most costly ex-
summer and very early in the school schools in your community. We penses for the Association, he has
year. School districts and classroom are grateful for your participation saved the TMA a substantial amount
teachers do much of their planning in the Reading for Rachel of our operating budget. We wanted
and scheduling in advance of the Program. It is our great hope to take this opportunity to thank
school calendar year. The Reading that this research will result in Errol for his kindness and to recog-
for Rachel Program will be more effective treatments and a nize his contribution of time, energy
competing for classroom time with cure for Rachel and for all of and money to the TMA. Actually,
many different activities, from you! Errol offered to handle the mailings
science fairs to other fundraising for TMA members in Australia and I
efforts. If teachers are going to One of the most interesting and asked him if he would also take on
consider our Program, you are going exciting developments of the New Zealand. He was kind enough
to need to reach them early. TMA has been our growing in- to accept my request. Errol, I know
ternational membership. Along Australia and New Zealand are dif-
If you are a school administrator or with this excitement has come a ferent countries; from Ohio they
work for a school district, if you are concern for the costs that are as- look like the same neighborhood.
The Transverse Myelitis Association Page 45
India
Thank you, Errol! Ireland The TMA on the Internet
Israel
We are seeking other volunteers to Italy
assist the TMA with these important Japan srulyosef@aol.com or
mailings of newsletters and Korea ssiegel@myelitis.org
directories. The savings for the Malaysia
Association would be substantial Mauritius Island Automated Info reply:
since the postage costs for our Mexico info@myelitis.org
international mailings are quite high. Netherlands Membership related:
Our largest concentrations of New Zealand membership@myelitis.org
members for the international Norway Newsletter related:
mailings are from Canada and the Pakistan newsletter@myelitis.org
United Kingdom. We also have an Panama TMA Survey related:
increasing membership in India. If Peru survey@myelitis.org
you are interested in assisting the Portugal Web site related:
TMA by volunteering to help with Romania webmaster@myelitis.org
these mailings, please let me know. Russia
We would be very grateful for your Saudi Arabia The following are some of the TMA
help. In order to facilitate this work, Scotland web pages:
you will need to have Internet access Singapore
so that we can communicate via South Africa http://www.myelitis.org
email. Please contact me at Spain TMA Home Page
srulyosef@aol.com. Sweden
Switzerland http://www.myelitis.org/tmic
Our latest international member is Turkey TMIC Home Page
from Mauritius Island in the Indian UK
Ocean. Thank you, Jim Lubin; it is Uruguay http://www.myelitis.org/tmic/
your web site that has made this USA archive
international membership possible. Venezuela TMIC Message Archive

http://www.myelitis.org/tmic/
members
Members’ photos and links to
members’ home pages

The TMA international membership: The Transverse Myelitis


You can send us information, Association 1999 Statement of
Argentina submit stories and articles for the Financial Activities (in US Dollars)
Australia newsletter, contribute your
Bangladesh articles for the In Their Own Paula Lazzeri
Belgium Words column, send us your
Brazil questions and refer new members The following tables present The
Canada to TMA by using our Internet Transverse Myelitis Association An-
China addresses. You can also use the nual Report for 1999. The TMA
Denmark Internet to submit your surveys General Fund column presents all
France and to send questions for the Dr. funds received and expended directly
Germany Lynn and Dr. Uretsky Question by TMA as recorded in the Associa-
Greece and Answer columns for the tion’s financial account. The Total
Holland newsletter. Please send your e- Donations and Expenses to Benefit
Hong Kong mail to: TMA column is presented to help
Page 46 The Transverse Myelitis Association
convey the total costs of providing TMA member services during 1999. This column includes funds/activities re-
ported in the TMA General Fund as well as non-reimbursed expenses paid by members of the Board of Directors.
These non-reimbursed expenses also are shown as Donations made by Board of Directors under Revenues. The
Donations made by Board of Directors line item presents the amount of funds spent by members of the Board of
Directors that were not reimbursed by the TMA General Fund.

TMA General Fund Total Donations and Expenses


to Benefit TMA
Revenues
General Charitable Donations 15,398 15,398
iGive.com Donations 610 610
amazon.com Donations 35 35
Symposium Fees & T-shirt sales 14,285 14,285
Symposium Donations 2,900 2,900
Donations made by Board of Directors 11,556

Total Revenues 33,228 44,784

Expenses
Checks 31 31
Computer Software & Virus Protection - 158
Domain Address Subscription (myelitis.org) and Website 234 429
Internet Access - 790
Mileage & Parking - 123
Office Supplies - 1,213
Postage and shipping 1,789 4,869
Printing/Copying 2,538 2,717
Secretary of State Fees 10 10
Telephone & Fax - 1,471
TMA PR (Bellingham & Baltimore) - 1,740
Symposium & Board Meeting - -
Advertisement in Neurology publication 114 114
Board of Directors Fees, hotel, etc. - 2,260
Cake 64 64
Doctor/Presenter reimbursement for travel, hotel/meals 2,764 2,764
Hotel - meeting rooms, coffee, and event meals 11,167 11,167
Name tags/notepads - 307
Printing/Copying 2,193 2,231
Refunds 125 125
Transportation 400 400
T-shirts 631 631
Video tapes 100 100

Total Expenses 22,159 33,715

Net Income $11,069 $11,069

Transverse Myelitis Association 1999 Statement of TMA General Fund Account Balances

1998 End Balance 9,668

Add 1999 Deposits 33,228

Less 1999 Expenses 22,159

1999 End Balance $20,737

We would like to express our deepest gratitude to the persons and the organizations that support the work of The
Transverse Myelitis Association. It is through their generosity that we are able to offer services to our membership;
they also make possible the expansion of services to our existing and future members. The following persons and
organizations made donations to The Transverse Myelitis Association in 1999. The donations made by members of
the Board of Directors include non-reimbursed expenses.
The Transverse Myelitis Association Page 47

Transverse Myelitis Association Audre Nicholas* $1,500-2,000


1999 Donor Recognition D.J. Pendall Medtronic*
Paula Lazzeri Nellie Reyna Wal-Mart Foundation
Stan Riddle
Charlene Schapker $4,000-5,000
$5-25 Maria Scott Dick & Deanne Gilmur
Susan Artiga Norman Shafran
Pamela Ashcom Mildred Vaughan $5,000-6,200
Virginia Barnitz Claddagh Foundation, Inc.
Donna Baumgartner $50-100 Sandy Siegel & Pauline Habib
Frederick Beiner Robert Alex
Richard Chassee Bruce & Janet Andrews Contributions through MA United
Congregation Beth Tikvah Rabbi Charles Burress Way (Exact amount unknown)
Fund Carmen Cottrell Carla Lecompte
Cox Motor Co., Inc. Raymond Farr Pauline Moran
Sandra Deming Sian Foulkes
Edward Eaton Jill Hammond *Those who made specific
Terry Gregory Wendy Henderson donations to the First International
Phyllis Haney Roger Livingston TMA Symposium
Patrick James Judy Mayo
James Martin Dorothy Monahan*
Diane Mayer Marie Walker
Phyllis McGairk
Elizabeth Morris $100-200 The TMA does not endorse any of
Mary & Benjamin Morris Lisa Andrews the medications, treatments or
Jacque Moster Lawrence Dubow products reported in this newsletter.
Doris Phinney Hargrove Construction, Inc. This information is intended only to
O.L. Puccini Omnitronix, Inc. keep you informed. We strongly
Richard Renner J. Vincent O'Reilly advise that you check any drugs or
Thelma Rollins Buddy and Shauna Peltier treatments mentioned with your
Joseph Romagnano United Way (King County, WA) physician.
Barbara Rozul United Way (Wyoming Valley,
Susan Shalda PA)
Sherman & Barbara Siegel $200-300
Deborah Stephens Gail Buch*
Phyllis Stevens Maureen Wroblewski*
Eileen Sutherland
Barbara Synhorst Libby $300-400
Y. Trapp Debbie Capen
Margherita Wang Frank & Janet Hargrove
Janice Yoder Hart Crowser, Inc.
Evon Young Paula & Myk Lazzeri

$25-50 $500-700
Charles Appley Attachmate Corporation
Daniel & Barbara Cole Cyril Mansperger
Scarlet Cox Joseph Kopistecki
Ruth Dreyer Esther Stone
Monica Duebner
Judith Filler $700-800
Margaret Ingman Anchor Enviromental, L.L.C.
Roland Johnson Johnson International, Inc.*
Jackie Landry
Page 48 The Transverse Myelitis Association

The TMA Children’s and You can send the information to The Transverse Myelitis
Family Network Directory Sandy Siegel either through the Association Officers
postal service or the Internet.

The Transverse Myelitis Association The Transverse Myelitis Deanne Gilmur


is developing a Children’s and Family Association Medical Advisory President & Founder
Network Directory that will only be Board 3548 Tahoma Place W
provided to parents of children with Tacoma, WA 98466
TM. The purpose of the Children’s (253) 565-8156
and Family Network Directory is to James Bowen, MD dgilmur@myelitis.org
provide a safe means for parents to Assistant Professor of Neurology
support other parents and for parents and Assistant Professor of Rehabili- Sanford J. Siegel
to find other children for their children tation (adjunct), Director of Neurol- Vice President & Newsletter Editor
to communicate with and build ogy Services for the Multiple Scle- 1787 Sutter Parkway
friendships/supports with peers. rosis Center, Director of the Multi- Powell, Ohio 43065
Please note that the Children’s and ple Sclerosis Research Center, Uni- (614) 766-1806
Family Network Directory is still versity of Washington ssiegel@myelitis.org
under development and has not yet
been published. Our goal is to also Douglas A. Kerr, MD PhD Paula Lazzeri
publish annual updates to this Assistant Professor, Departments of Treasurer
directory. This directory will only be Neurology and Molecular 10105 167th Place NE
sent to those TMA members who Microbiology and Immunology, The Redmond, WA 98052
have registered for and are included Johns Hopkins Hospital; Co- (425) 883-7914
in this directory. We know there is a Director, Johns Hopkins Hospital plazzeri@myelitis.org
need for this information, because it is Transverse Myelopathy Center
frequently requested from both Deborah Capen
parents and children. Please take the Charles E. Levy, MD Secretary
time to send us the following directory System Chief, Physical Medicine PO Box 2084
information: and Rehabilitation Service, North Hemet, CA 92546
Florida/South Georgia Veterans (909) 658-2689
Parents’ Names Health Service; Assistant Professor, dcapen@myelitis.org
Street Address Department of Orthopaedics and
City, State/Province Rehabilitation, University of Florida Jim Lubin
Country, Zip or Postal Code Director, Internet and Web Site
Home & Work Phone & Fax Joanne Lynn, MD PO Box 82433
Parents’ Email Address Assistant Professor of Neurology, Kenmore, WA 98028-0433
Child’s Name Multiple Sclerosis Center, The Ohio fax: (425) 483-0215
Child’s Email Address State University jlubin@myelitis.org
Child’s Age at Onset of TM
Year of Onset of TM
Spinal Cord Level of Effect

The Transverse Myelitis Association

The Transverse Myelitis Association


announces the Second International
Symposium in Baltimore, July 12-15,
2001

You might also like