movement

Issue 12 | March 2011

News Journal of Parkinson's Disease and Movement Disorder Society (PDMDS)

Facts About Stem Cell Therapies

Dr. Shilpa Chitnis On March 9, 2009, President Barack Obama issued an executive order entitled, removing barriers to responsible scientific research involving human stem cells. This states that the secretary of Health and Human Services, through the director of NIH, may conduct and support responsible, scientifically worthy human stem cell research, including human embryonic stem cell research to the extent permitted by law. Clinics around the world are o f fe r i n g u n p ro ve n ste m c e l l treatments to desperate patients suffering from incurable diseases such as Parkinson disease, multiple sclerosis (MS) and ALS (Lou Gehrigs disease). A study published in the journal Cell Stem Cell examined the direct-to-consumer advertising that these shady clinics use to attract customers. They looked at 19 web sites that advertised stem cell treatments in several countries including Mexico, China and Russia and found that the average cost of a course of therapy was about $ 21,500 excluding travel & accommodations for patients and caregivers. Stem cell clinics are becoming a lucrative part of medical tourism. These clinics offer to treat a wide range of medical conditions including Alzheimer disease, Parkinson disease, spinal cord injury, blindness and heart disease. The web sites often down play the experimental nature of the treatments and make little mention of side effects. This type of overhyped marketing directly to the patients puts them at risk of financial exploitation and physical danger from insufficiently studied and risky therapies. The purpose of this article is to educate regarding various types of stem cells, review facts about stem cell therapies and understand how medical safe guards have evolved over time to protect individuals from potentially harmful therapies. WHAT ARE STEM CELLS AND WHAT IS THEIR IMPORTANCE Stem cells carry remarkable potential to develop into many different cell

Inside This Update

Facts About Stem Cell Therapies Editorial One Day Symposium on Parkinsons Disease Support Group Initiatives Marathon 2011 Advocacy Helping Yourself and Others My Experiences on the Wheelchair at the Airport Jhalak of LADAKH Art Therapy My experience as a caretaker & as a patient Support Groups in Mumbai 1 3

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9 15 17

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The contents of

movement aim to

provide the maximum possible facts /information but since some information involves areas of personal judgement, their publication does not mean that the PDMDS necessarily endorses them. All contributions are welcome.

movement
The Editor (G. S. Kohli), F l a t D - 5 1 0 , M i l t o n A p t s ., Juhu Azad Rd., Juhu Koliwada, Santacruz (W), Mumbai- 400 049. Phone : 65761242

Address all correspondence to: THE PARKINSONS DISEASE & MOVEMENT DISORDER SOCIETY Dr. B. S. Singhal, Bombay Hospital, 12 Marine Lines, Mumbai 400 020 Tel: (91 22) 2206 8787, 2206 4747 | E-mail: pdmds.india@gmail.com | Website : www.parkinsonssocietyindia.com Published by Neurology Foundation

OFFICE BEARERS President Mr.B.K.Parekh Mumbai Past President Dr.S.M.Katrak Mumbai Vice-Presidents Dr. J.S.Kathpal Indore Dr. Shilpa Chitnis U.S.A Governing Council Dr. Madhuri Behari Delhi Dr. K.Bhattacharya Kolkata Dr. Rupam Borgohain Hyderabad Dr. S. M. Katrak Mumbai Dr. S.V. Khadilkar Mumbai Dr. Uday Muthane Bangalore Dr. S. Prabhakar Chandigarh Dr. Charu Sankhla Mumbai Dr. A. B. Shah Mumbai Dr. N. Surya Mumbai Dr. P. Wadia Mumbai Dr. P. Pal Bangalore Ms. K. Vania Mumbai Hon. Secretary Dr. B. S. Singhal Mumbai Hon. Treasurer Dr. J. A. Lalkaka Mumbai Editors Mr. G. S. Kohli Dr. J. A. Lalkaka CEO Dr. Maria Baretto Mumbai

From the editor's desk

It is assuring to note that support groups are being established at a rapid pace in the suburbs the latest ones at Chembur and Vashi. It is even more assuring that helpless patients are being spotted by the Society (PDMDS) and rehabilitated, as published in the Mumbai Mirror dated 5th February, 2011. The care-givers, the patients as also the individuals connected with PD and its cause had an opportunity to enhance/update their information at a symposium organized for their benefit. As in previous years, this time too doctors, patients and care-givers ran the Marathon led by Dr. B.S.Singhal. The proverbial stem cell raises its head again. In one of the best compilations I have read on the subject, this one gives us reason to be happy, but also sounds alarm bells if taken too simplistically. And in my Round Up, Surgical Techniques have been used to treat Parkinsons since the 1930s. The early procedures were risky and were largely abandoned. The drug Levodopa became an established treatment for the condition in the late 1960s. In recent years, there has been renewed interest in surgery because the drug, although very effective, does not work for everyone. There have also been advances in surgical techniques and developments i n n e u ro - i m a g i n g a n d co m p u te r technology that have enabled surgeons to pinpoint target sites in the brain more accurately. Surgery does not provide a cure or a slow down progression in Parkinson, but in some people, it can provide good symptom control. Because of the risks involved, surgery is mainly used to treat people who have had PD for several years, whose symptoms are resident to drugs or people who are finding that the drugs no longer control their system. Those who have conditions such as high blood p res s u re , ca rd i o vas c u l a r d i s eas e , depression, dementia, will not be suitable candidates for surgery. Physiotherapists are trained health professionals who use physical treatments to help treat people of any age who have physical problems because of illness, aging, or injury. Physiotherapists will be particularly interested in assessing and treating the effects that Parkinsons can have on mobility, gait, posture balance, activities involving transfers (such as getting in and out of bed) and dexterity. They may also be involved in managing non- motor symptoms, such as pain & sleep related problems. In the early stages of the condition, maintaining your functional ability through exercise and relaxation will be a p hys i o t h e ra p i st s m a i n fo c u s . A s Parkinsons progresses and the symptoms tend to be more profound they may also advise you on ways of managing particular difficulties you are experiencing, such as freezing, balance problems, falls and immobility. For more information contact me or the Society website. Remember you are never alone.

If you want to be happy and sucessful in life, never stop learning

One Day Symposium on Parkinsons Disease

On the 25th of November 2010 the PDMDS, along with Jupiter Hospital and the Indian Medical Association (Thane Chapter) organized a one day Symposium on Parkinsons Disease for medical and allied health professionals. The session was chaired by Dr. Pravina Shah and Dr. Yogesh Thakkar. Dr. Shilpa Chitnis and Dr. Pettarusp Wadia were the speakers for the day. Dr. Maria Barretto, Co-ordinator of the PDMDS opened the session with a video presentation of the various activities of the Society. Dr. Pravina Shah introduced Dr. Shilpa Chitnis and invited her to take the podium. Dr. Chitnis led the

audience through a very detailed and highly informative talk e n t i t l e d A n O v e r v i e w o f Parkinson's disease, Medical and Surgical Management. She began with a brief historical overview of the disease, before moving onto the modern theories, including biological theories and environmental factors. Following this, she explored the various symptoms of Parkinsons disease; the easily recognizable motor symptoms, as well as the lesser known Non Motor Symptoms. She also touched on other Parkinsonian conditions such as PSP, MSA, etc. To round up the session, Dr. Chitnis spoke about the

various treatment options from the drug treatments available to the surgical options. Dr. Yogesh Thakkar then introduced Dr. Pettarusp Wadia, the second speaker for the day. Dr. Wadias talk consisted of illustrative case presentations, through video clips. Dr. Chitnis also showed a few video clips of patients with Parkinsons and Parkinsons related conditions. The talks were followed by a brief Question and Answer session. The Symposium concluded with a vote of thanks, during which the speakers were presented with bouquets as tokens of appreciation.

To see happiness in action, Smile and star a chain reaction

Support Group Initiatives

Though the venue for conducting the meeting was good, access to the venue posed a problem to some of our patients. We therefore had to relocate. Our Lady of Perpetual Succor (OLPS) church in Chembur offered us a venue at their Seva Daan Special School. The group meets here on the third Saturday of every month at 10:00 am. ADDRESS Seva Daan Special School, Opposite OLPS Church, Near Diamond Garden, St. Anthony s Road, Chembur (W), Mumbai 400 071

Learning the basics of exercising- Chembur Support Group

CHEMBUR SUPPORT GROUP On the 17th of July 2010, we inaugurated our new Chembur support group. The group was initiated by Mr K. Kamdar of our Dadar support group who networked with the Dignity foundation for the use of their premises. It was heartwarming to see this event so enthusiastically at tended by patients and caregivers. Mr. Srinivasan, representative of the Dignity Foundation welcomed us to the premises and proceeded to give u s a n i n t ro d u c t i o n o n t h e Foundation. He emphasized how glad he was to be working with the

PDMDS and to be able to reach out to so many people. Dr. Maria Barretto then gave a short talk on the Society and its activities. She gave a brief overview of Parkinsons disease and the role the society played in assisting the patients and caregivers. This was followed by a question and answer session, where patients came forward with their concerns and the various problems they faced with Parkinsons. An interactive physiotherapy session was conducted. The physiotherapist guided the group through a series of basic exercises that they could practice at home.

VASHI SUPPORT GROUP October marked the inauguration of our support group in Vashi. In collaboration with the Specialty Physiotherapy Department of MGM Hospital, the first meeting was held on the 26th of October, 2010. The meeting was well attended with patients along with their caregivers and family as well as the faculty of the physiotherapy department. Dr. Maria Barretto opened the meeting with a presentation on the PDMDS and its role in the lives of people affected by Parkinsons disease. Dr. Kalyani Sen, the medical

Learn from yesterday, live for today, hope for tomorrow

Superintendent said a few words g i v i n g h e r s u p p o r t to t h i s undertaking. D r. S h i l pa a n d D r. M e r u l a , physiotherapists at MGM hospital gave a brief presentation on Parkinsons disease, speaking about the causes, symptoms and the management of the disease. The group was then rearranged into a circle and the physiotherapy session began. The highlight of this session was the involvement of the entire physiotherapy department with each patient receiving

individual attention and being assisted throughout the session. The evening was rounded off with refreshments provided by the Hospital. A special mention must be made of Dr. Brinda Shah of MGM Hospital who was instrumental in coordinating this Support group from inception to actualization.

Lets exercise together Physiotherapy at Vashi Support Group

The Vashi Support Group meets every last Tuesday of the month, at 3:00 pm.

ADDRESS : Specialty Physiotherapy Dept., MGM Hospital, Sector3, Vashi, Navi Mumbai 400 703

In all things it is better to hope than to despair

Marathon 2011
PDMDS has like to take this been creating opportunity to awareness by thank each one regularly of you for your participating in support, in the Mumbai participating in Marathon. This this charitable year was a event, and also record of sorts f o r y o u r Team PDMDS 2011 with youngest participant Master Karan Sankhla (Age 12 yrs) as we had generous participants in contribution in Mr. Pierre Dsouza who initated the every category . Dr. B.S Singhal raising funds. The Mumbai participation of the PDMDS as our Founder Member of PDMDS) and Marathon has always provided us dream runner at the 2007 Mr. T. K. Roy ( Vice-President, Sun with a platform to create awareness Marathon this year ran the Full Pharma) led the team of 36 and we look forward to greater Marathon. Mr. R Mahimtura, supporters, from various walks of participation from our supporters (South Mumbai support group life in the category of Dream Run. in the coming year. member), made his mark in the wheelchair category while Mr.Shreyas Malkhan (Borivli Support group member) completed the Half Marathon.! We also saw participation of our supporters Mr. Ghanshani and his friends in the Senior citizen run. The t-shirts donned by the participants and the PDMDS banners carried by each group drew the attention of many who approached us to gather knowledge on Parkinsons disease and the Helping us create work of the society. We would awareness: Mrs Baker-(Caregiver) Dr. Lalkaka & Dr. Wadia for PDMDS

Positive anything is better than negative nothing

Glimpses of Marathon 2011

Spreading Awareness - Mr. Ghanshani & Friends

Mr. Pierre D'souza at the Marathon

Mr. Shreyas Malkhan completing the Half Marathon !!!

Advocacy Helping Yourself and Others

Mr. Ronald Rodrigues

Woody Allen said, People can be divided into three groups: those who make things happen, those who watch things happen and those who wonder what happened, showing up is 80% of life. You had no choice about the entrance of Parkinsons disease into to your life, but you do have a choice in how you will live your life and what your future will be. You may be thinking, what can one person do to make a difference or effect the future? The answer is plenty. Become an Advocate for Parkinson disease Advocates make things happen. Advocating for Parkinsons disease takes as little or much commitment as you decide to put towards the cause. Advocacy can take many

forms. Here are some ways you can make a difference: Walk out your door and let others see you with your symptoms. In this way you will be educating others about what PD is and is not. Attend PD support group meetings. This is one of the best ways to learn

to yours, find resources, or share your own knowledge about PD with others. Over time as you get to know the members of the group it becomes more comfortable to be with people at various stages of the disease. It feels good. The satisfaction and pride you feel when helping others are important reasons to volunteer, when you commit your time and effort to an organization or cause you care about. The fulfilment can lift spirits and feel empowering. As caregiver, you also become a role model for making the world a better place. Whatever you choose to do, volunteering and community service can benefit you, your family and the community.

Close bonding: Myself (right) and my friend Mr. Ubhaikar

about PD, get support from others who are experiencing issues similar

When you have love in your heart ypu can see beauty in everything

My Experiences on the Wheelchair at the Airport

Mrs. Shail Pandey

One might wonder as to what is so unusual for a person to use a wheelchair at any airport; often these are people who are sick, old or unable to walk due to fractures or disability. For me it was scary, challenging and full of

often had dyskinesia, so by the time I had reached the airport I had started having symptoms of the same. Previously I had to ask for an escort when travelling alone. The escort usually absconded not thinking that I needed any help. As previously planned, my brother had come to see me off, was to escort me till the security area. But unfortunately, he was not allowed to in spite of his having a Defence ID pass, as he is the Project Director, NAG missiles. This happens only in India. So seeing him worried and anxious, I told him not to worry and that I will ask for a wheelchair and manage. I also realized that due to my dyskinesia I may fall and hurt myself or the clumsiness may make things awkward for me. So at the ticket counter, I requested for the obvious. But when the escort with the wheelchair arrived and asked me to sit; reality stuck me; that I had reached the stage when perforce I would require this

vehicle not only at the airport, but at many other places too. Lots of thoughts invaded my mind and for few seconds I was oblivious to where I was until the escort had asked me again to sit. I recovered and sat on it so clumsily that one had to see it to believe it and at the same time I realized that people were looking at me with puzzlement , curiosity as they must have thought as to why this lady who was walking normally had to resort to a wheelchair. You see till that time I was not shaking and fumbling in other words my involuntary movements due to dyskinesia had not become too obvious. Well, I got a grip on my thoughts and said to myself, what the heck; this had to happen one day. Why should I feel awkward and pity for myself? What is there is there; I am not a freak. Once in control of my confidence things became easier to handle. At one time; when I realized my escort trying to peep

apprehension. Thats because I have been a patient of Parkinson disease for the last ten to twelve years. Parkinsons disease is a neurological disorder caused by degeneration of brain cells and is a progressive disease which leads to chronic disabilities of movements like slowness, tremors, drooping rigidity called Bradyskinesia and Dyskinesia which cause involuntary movements etc. To come to the subject, my Parkinsonism had progressed and I

There are always flowers for those who want to see them

inside my purse; I looked up and just glared at him- giving the message loud and clear Look young man, I may look disabled and demented ; dont try to act smart and get a false impression. The fellow got the message and then onwards it was a smooth ride. I quite enjoyed and felt privileged as I did not have to stand in the queue. Along came a n o t h e r fe l l o w t rave l e r i n h i s chariot i.e. a w h e e l c h a i r. I immediately started conversing with him. We e xc h a n g e d t h e cause of our i n d i v i d u a l problems. By this t i m e m y

it in her head. In other words, I did look demented. But by this time, I did not care and even looked at them and smiled. It even crossed my mind to wink at some but controlled myself. In the aircraft, things went off well. By the time I reached Bangalore, my dykinesic movements had

puzzlement on the faces of my copassengers. Surely they wondered, Whats with this lady, first she resorts to wheelchair and looks demented and then now she walks quite normally and does look normal. Well my dear friend this is what happens to a P.D. patient. If they could understand how difficult things become and it is even more agonizing and traumatic it is to deal with them. It was also not an easy experience for me, but I am glad that God gave me the strength to bear it like a fighter. To say the least, I

Mrs Pandey assisting friends at Support Groups

patted myself for my courage in handling this wheelchair experience without much self pity and fear. I always believe in the motto that God helps these who help themselves I narrated my whole ordeal to my son on the way home. I am sure he also must have felt proud of me.

involuntary movements did increase and the same people who looked with puzzlement when I had stepped into the wheelchair, glanced at me with sympathy and pity. I could well read their thoughts how sad poor thing... she is not normal and it looks as if she has lost

decreased and I told the air-hostess to give the wheelchair to my copassengers who needed it more. My only request was to provide me an escort to help me with my luggage etc. My son had come to pick me up. By the way I should mention here that there was new

Either you run the day or the day runs you

Facts About Stem Cell Therapies - Continued from page 1 types in the body during early life and growth. In many tissues they serve as an internal repair system, dividing without limit to replenish other cells. When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialized function such as a red blood cell or brain cell or muscle cell etc. Stem cells can be distinguished from other cell types by two important characteristics: 1. they are unspecialized cells capable of renewing themselves through cell division. 2. they can be induced to become tissue or organ specific cells with special functions. Types of Stem Cells 1. Embryonic stem cells: As the name suggests, these are derived from embryos. The embryos from which these cells are derived are typically four or five days old and are a microscopic ball of cells called the blastocyst. Theoretically these cells can give rise to all cell types in the body. Growing cells in the laboratory is called cell culture. To b e u s ed i n c e l l t ra n s p l a n t treatments the cells will need to be directed into a more mature cell type to be therapeutically effective with minimal risks. However coaxing these cells to become a particular cell types isnt easy. Embryonic stem cells carry the risk of transforming into cancerous tissue after transplantation. If scientists can reliably direct the differentiation of embryonic stem cells into specific cell types, they may be able to use the resulting, differentiated cells to treat certain diseases in the future; however there are currently no treatments available using embryonic stem cells. 2. Adult stem cells: This is thought to be an undifferentiated cell found amongst differentiated cells in a tissue or organ that can renew itself and can differentiate to yield some or all of the major specialized cell types of the tissue or organ. The primary role of adult stem cells is to maintain and repair the tissue in which they are found. There are a few stem cell therapies that are widely accepted and these use tissue-specific stem cells such as bone marrow or cord blood stem cells to treat diseases of the blood or to restore the blood system after treatment for specific cancers. Types of adult stem cell are mesenchymal stem cells (found in tissues such as the bone marrow and is able to produce bone, cartilage and fat), hematopoietic stem cells (give rise to all types of blood cells), neural stem cells (in the brain give rise to neurons, astrocytes and oligodendrocytes) and epithelial and skin stem cells. 3. Cord blood stem cells: At birth the blood in umbilical cord is rich in blood-forming stem cells. These are used similarly to adult stem cells to treat blood disorders or restore the blood system after treatment for certain cancers. 4. Fetal stem cells: These are taken from the fetus; most tissues in a fetus contain stem cells that drive the rapid growth and development of organs. Like adult stem cells, these are generally tissue-specific and generate mature cell types within the particular tissue or organ in which they are found. 5. Induced pluripotent stem cells: These are adult cells that have been genetically reprogrammed to an embryonic stem cell-like state by being forced to express genes and factors important for maintaining t h e d ef i n i n g p ro p e r t i es o f embryonic stem cells. 6. Somatic cell nuclear transfer (SCNT): This is a laboratory technique for creating a clonal embryo, using an ovum with a donor nucleus; it can be used in embryonic stem cell research or in regenerative medicine where it is sometimes referred to as therapeutic cloning. In SCNT, the nucleus which contains the

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Action expresses priorities

organisms DNA, of a somatic cell is removed and the rest of the cell discarded. At the same time, the nucleus of an egg cell is also removed. The nucleus of the somatic cell is then inserted into the enucleated egg cell and the somatic cell nucleus is reprogrammed by the host cell. The egg now containing the nucleus of the somatic cell is stimulated with a shock and will begin to divide. After many divisions in culture, this single cell forms a blastocyst with almost identical DNA to the organism. HOW DO CLINICAL TRIALS WORK A clinical trial usually has an experimental treatment group which consists of patients receiving the drug under study while another group serves as a control group. The results of these trials are analyzed using statistical methodologies to determine whether any difference between t h e t wo g ro u p s i s d u e to coincidence or placebo effect or is a real statistically significant and meaningful therapeutic response. There are four stages of testing in a clinical trial. In Phase I, small group of people are studied with the goal to determine safety and dosage range and identify any side effects. Therapeutic benefit is not the primary goal of this initial phase

although this may be at times be addressed. Phase II trials involve a larger group of patients based on findings of the phase I trial and effectiveness is studied along with ongoing monitoring for side effects. In a phase III trial, a larger group of patients are treated to confirm effectiveness compared to standard therapies. Last but not the least, phase IV trial happens after a medication has been approved and is sometimes called post-marketing surveillance study. Rare but serious side effects are at times only detected during large phase IV trials. WHY AND HOW MEDICAL SAFEGUARDS HAVE EVOLVED There have been circumstances in the past where the rights of patients were not respected which resulted in tremendous harm. One of them called The Nuremberg Code was formed in direct response to experiments c o n d u c t ed i n G e r m a ny o n prisoners during the Nazi rule and war. This code dictates that research must involve voluntary informed consent of the persons being experimented on after discussion regarding safety and potential side effects of the treatment. The Belmont Report outlines ethical guidelines for three main principles to be followed in

experimentation on humans; respect for persons, beneficence or promoting well being of others and justice. This report resulted after review of the Tuskegee Syphilis Study which followed the progression of Syphilis in nearly 400 african-american men over a period of 40 years without informing them that there was an effective treatment available. As a result of this many died from the disease and their wives and children were infected as well. Another important cornerstone of ethical human experimentation is the Helsinki Declaration which calls for approval of a research ethics committee and scientific evidence suggesting that the experimental treatment can be expected to be beneficial. If these safeguards are not followed, then disastrous complications can result such as cancerous growth of the implanted stem cells and its sequalae and the infamous Thalidomide Tragedy where children of women treated with this sedative medication were born with a rare birth defect called Phocomelia, in which legs or arms are severely malformed or missing. WHAT SHOULD YOU KNOW ABOUT STEM CELL TREATMENTS 1. There are different types of stem cells each with their own purpose: this is addressed above.

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Be the change that you want to see in the world

2. A single stem cell treatment will not work on different unrelated diseases: each type of stem cell fulfills a specific function in the body and cannot be expected to make cell types from other tissues. It is critical that the cell type used as a treatment be appropriate to the specific disease. One of main warning signs that a clinic may not be credible is when they offer treatment for a wide variety of condition and rely on only a single cell type. 3. There are very few widely accepted stem cell therapies available currently: as addressed above, blood stem cell transplantation is one of the better defined modalities. In addition some skin disorders and corneal diseases may be treated with grafting that depend on stem cells from these specific organs only. 4. Beware of anecdotal patient testimonials stating they got better: there are multiple reasons why patients say that they feel better after a stem cell treatment. Firstly the intense desire or belief that a treatment will work can cause a patient to have a positive physical and mental change, this phenomenon is called the placebo effect. Secondly other adjunct therapies offered along with the stem cell treatment such as dietary

modifications, physical therapy, relaxation techniques and other medications may make the patient feel better in a manner that is unrelated to the stem cell treatment. 5. Why it takes time to develop new therapies: new ideas are initially tested in a laboratory setting and many a times these experiments do not work. Even when the basic science is well addressed in cell and tissue culture models, they may fail as a therapy in animal models and lastly something that works in an animal model cannot be extrapolated to human patients without extensive study. A new therapy takes decades to transition from the laboratory bench into an approved treatment modality. If a treatment has not extensively studied in a well designed and executed clinical trial and gone through the mandatory preclinical and clinical testing including addressing important safety issues, it is unlikely to be approved as a therapy by the regulating organizations. 6. Although stem cells came from your own body, it doesnt mean that they are safe: while it is mostly unlikely to have an immune response to your own cells, the procedures that are required to obtain these cells from the body,

grown in cell cultures and eventually delivered back are not without their risks. These cells after leaving a patients body are subject to extensive manipulations that could change the characteristics of the cells; they may be contaminated with b a c t e r i a , v i r u s es o r o t h e r pathogens which could cause disease. 7. What do you lose by trying out an unproven treatment: some of the conditions that stem cells offer a cure for are considered incurable and patients feel like they have nothing else to lose by trying these radical treatments. However there is real risk of complications, both immediate and long term without any clinical benefit. Participating in an unproven therapy may at times make a patient ineligible to participate in a meaningful, regulated clinical study. Lastly not to forget the tremendous financial burden to the patient and family with long term implications for the future. 8. An experimental treatment is not the same as a clinical trial: the fact that a procedure is touted as new and experimental doesnt make it part of a carefully designed clinical study. Before starting a clinical trial, there has to be preclinical data demonstrating

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Peace comes from within

s a fe t y a n d eff i ca c y o f t h e treatment. There is also oversight from the institutional review board (IRB) or medical ethics committee and in Europe and USA, the trial is assessed and approved by the governing agencies such as European Medicines Agency (EMEA) and Food and Drug Administration (FDA). The cost of such a clinical trial is usually covered by the pharmaceutical or biological company trying to develop the new therapy and there is no cost to the patient. There is a well defined protocol with a procedure which involves identifying inclusion and exclusion criteria and a detailed and frank discussion of expectations, side effects and the need to sign an informed consent by the patient prior to participation.
WHAT TO ASK A STEM CELL CLINIC

4. What is the cost of this therapy and will my insurance cover this (if it is not an approved therapy the likelihood of insurance covering this is zero). 5. How does this compare to existing alternate treatment options for my condition? 6. What is the source of the stem cells, how are they being isolated, grown and differentiated into specialized populations before inplantation? 7. If these cells arent taken from my own body, then what will be done to prevent my immune system from reacting to these transplanted cells? 8. What are the risks of the procedure, possible short term and long term side effects of the therapy? 9. Is your clinic adequately equipped to address any emergencies such as a severe allergic reaction or any other side effects of the therapy? 10. What compensation am I e nt i t l ed to as a res u l t o f participating in this study (most clinical trials come with some compensation for the patient in the form of cash payment to cover travel expenses and all visits, lab tests, imaging studies as part of the study are covered with no

additional expense to the patient). THE FUTURE OF STEM CELL SCIENCE Having said everything, stem cell science is extraordinarily promising. There have been tremendous advances in treating diseases of the blood forming system, replacing cells lost to side effects of aggressive chemotherapy for cancers and corneal grafts. There are clinical trials being approved to conduct neural stem cell treatment for stroke and embryonic stem cell-based therapy is being reviewed for acute spinal cord injury and may translate into a clinical trial in the near future. There is hope that stem cell therapies will be available some day to treat a wide range of incurable diseases. Until this happens, we should approach the claims of stem cell clinics with trepidation and intense skepticism to avoid physical, mental and financial loss.
REFERENCES AND ADDITIONAL READING 1. Stem Cell Information, The National Institutes of Health Resource for Stem Cell Research (http://stemcells.nih.gov) 2. International Society for Stem Cell Research (ISSCR), www.isscr.org 3. Darren Lau, Ubaka Ogbogu, Benjamin Taylor et al. Stem Cell Clinics Online: The Direct-to-Consumer Portrayal of Stem Cell Medicine. Cell Stem Cell, Volume 3, Issue 6, 591-594, 4 December 2008 4.http://www.nature.com/stemcells/2008/0806/080 626/full/stemcells.2008.98.html 5.http://cellmedicinesociety.org/component/conte nt/category/49?layout=blog

1. Is this treatment part of an approved formal clinical trial? (the discussion should really end here if the answer is NO)! 2. Show me some published scientific evidence that this therapy has worked in smaller groups of patients and safety issues have been adequately addressed. 3. Show me the credential, qualifications and experience of your staff with this therapy.

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Happiness comes from your own actions

Jhalak of LADAKH
Mr. Milind Phadke (Khar Support Group) When Sudhir, a friend of mine who o rga n i zes e co - to u rs i n t h e Himalayas, mentioned how difficult it was to find replacements for last minute drop outs from his trek in Ladakh particularly when the group would be away from the usual tourist trail, almost instantly I made up my mind to sign up. With Sudhir, I have been to the foothills of Himalayas, climbed u p t o Tu n g N a t h & Nagtibba, trekked Har Ki Dhun, this was in the pre-PD days. Now with the onset of PD, it was a flat refusal from Sudhir as well as my wife. Why?, I argued. PD is not a lifestyle aliment, I look at it as tough draw of luck. Should it dictate my life, No, I said. Its nearly 5 years ago, that a routine annual health check up lead to visit to neurologist. Early onset he declared. It was a crushing blow for myself as well as my wife. Is it like a Majestic Black Necked Crane of Ladakh realized that Parkinson or similar neurological disorders are not uncommon in our society. Though, we do not know factors that lead to it and unfortunately today there is no cure, I am sure that with rapid advances in science its not long before this becomes common. What surprised me most was that cancer or heart attack or worse ? Doubts swarmed our minds. At 43, there was so much to do, to dream and have fun trying follow this dream together. Have I lost everything ? What about my family? Am I on borrowed time ? As we read more about Parkinson, I there were Parkinson affected elders in families of some of my close friends and aquaintances. Unfortunately branded as Elders Disease, they were confined to home, it was almost as if they had resigned to this fate. Having a positive outlook and leading a normal healthy life was key to overcome this setback. With a strong support from my wife, I continued with work & hectic travel, started on hobby that I had been putting off. Love life, Live life became my motto. For the trek in Ladakh, my wife soon supported on condition of getting a clean chit from the doctors. As if to rein in my enthusiasm my family decided to join in this adventure. Fortunately, neurologist as well the as cardiologist advised that going to ladakh, while taking due care, would not be difficult.

14

Be faithful in small things because it is in them that your strength lies

This was followed by days of frenzied preparation. We started on longer walks and exercise. We did a dry run of Rajgad trek. To my relief, I could manage this without much difficulty. Since the group bookings were already done, we scrambled for flights and decided to join everybody a day late to give us time to acclamatise ourselves to the altitude. Sudhir chalked out a schedule and trail considering our limitations, while I conceded to have a guide and help to accompany us. We got ready for the challenge and to experience the humbling beauty of nature. The journey from Shrinagar to Leh, gradually took us through the long, steep winding roads of Zanskar range. While this tools us across the Himalayas to the Indus platau. The contrasting landscape was interesting to note. After overnight halt at Kargil, we reached Leh. A small welcoming party, Sudhir

and rest of group, quickly helped us settle down and filled us in on camp details and the part of the trail we were joining. While everyone was bubbling with e xc i t e m e n t , I w a s g e t t i n g apprehensive about what I had planned to do. Rest of the day was spent discovering Leh and markets. We started early next morning and headed to the camp site in Hemis National Park. This was to be our

natural beauty I brought up the rear. This set up tone for rest of the four days. We went up to altitudes exceeding 17000 ft. Managed to spot Bharal. Got a glimpse of the golden eagle and majestic black necked crane. Parkinsons is not a disorder any of us wants. Now I would say it has opened new doors for me, given a perspective to live everyday to its fullest. My first thoughts were that my work was done in, my family was done in. Then I realized that the problem was my focus was on things done. Being diagnosed with Parkinson, made me re a l i ze o f m a ny things that I would like to do. I wasnt going to waste the best years ahead of me. Trek in Ladakh, gave us positive attitude and with my wife we made our motto Yes, we can together we are going to overcome insurmountable obstacles along the way.

Mezmerizing Ladakh base for next few days, while we would trek the trails in search of the illusive crane and blue sheep. Tents allocated, Sponge sheets & sleeping bags distributed, we started on the first leg. Soon the younger team disappeared, in pretext of photographing birds and

15

Great people usually dont feel important; they make others feel important

Art Therapy
Mrs. Chitra Sen When we had the first "Art Session" with the patients, afflicted with Parkinson's disease, I did not know drawings. Beautiful because they expressed straight from the heart with amazing enthusiasm. Some have had long careers in p r o fe s s i o n s close to art forms and one could see that in their work. T
Art Therapy at Dadar Support group

imagined they could see in the resultant patterns. Our experiments with brush and paint had some making strong statements on social health issues like - "Stop Smoking"! These sessions have encouraged and inspired some to work on their art skills at home and one of them is actually compiling her sketches in a book form. Drawing, painting, lines and colours have always had very healing effects on the mind. The enthusiasm the group has shown to embrace this in their lives has given the support group members and me, a hope of putting up an

promised to go back to sketching. Some have been drawing pictures with their children and grandchildren and have now discovered that they are enjoying doing this on their own too. Others who were exposed to this for the co-ordination and most importantly divert their mind from dwelling on the existing problems. When asked to draw from nature or a person, or an event or anything that makes them happy, everyone came up with really beautiful first time, found it fun enough to regret not having done this before. Another s es s i o n h ad t h e m creatively overlap basic forms to make designs or whatever they

what to expect from them and myself. What happened in that session was most encouraging for me as well as (I think) for the participants. I became confident that art is going to help them therapeutically for improved motor movements,

Drawing our thoughts

exhibition of their works and expressions sometime in the future.

16

The Life given us by nature is short, but the memory of a well spent life is eternal

My experience as a caretaker & as a patient

Mahindra Sanghvi- Borivli Support Group

depression. Along with it I lost sleep, appetite and within a few weeks lost around 5 kgs. I had to soon depend on sleeping pills and antidepressants. With time I decided to work on my other symptoms. I implemented yoga, walking, physiotherapy and praying in my daily regime. My mother was living with Parkinsons from 1981-2001. Infact you would be surprised to know that in her 20 years of living with Parkinsons she never stopped living. She made the most of time and even went touring India with f a m i l y. S h e l i v e d a f a i r l y comfortable life until her last 4 years. In 1997 I started experiencing a problem in my writing. My speed reduced and the writing became smaller in size. I also started developing pain in my hands. Helping my mother in dealing with Parkinsons I was already aware of t h e sy m p t o m s , a n d h e n c e immediately approached the neurologist. When I was diagnosed with Parkinsons I went into Including these activities helped me tremendously. The time I would take just to carry out my activities of daily living reduced rapidly. Im proud to say that its been 6 years that I have been off sleeping pills and anti depressants. It has developed a more positive approach in living with Parkinsons. I attend the support group regularly and also try to socialize. As and when time permits I also try to catch up with my friends for a game of badminton. I have also been travelling across the globe discovering new places along with my family and caregiver. By putting into practice some changes in my daily lifestyle has given me a different outlook, and Im sure it will, to all of youll too!

A different journey awaits each one, but our destination is the same. Besides movement , localized support groups, seminars, national and international representation have helped PDMDS move closer towards its goal to Make the PD World Smaller. To make it still smaller we invite non-member patients to become a part of our society. Moreover, none of our existing patientmembers should have to miss out on being a part of the activities or receiving an update of movement because of a change in residence. Therefore keep us informed of any change in address or telephone numbers. We further invite any organizations or support groups associated with PD & movement disorders, anywhere in the world, to get yourselves enrolled in our mailing list, and we request enrollment into your mailing list. PDMDS consistent goal, being a Charity Society, has been to make the healthcare system accessible, to spread awareness of tried but dormant ways, and discover new ways of making a difference in the lives of patients and caregivers. It goes without saying that funding is required for these purposes, and therefore we request those well-wishers interested in making donations to our efforts and cause, to contact us. If you wish to correspond with us for any of the above, or require any information regarding the same, please do contact us.

17

Love changes everything it touches

PDMDS Groups in Mumbai

SUPPORT GROUPS in Mumbai Borivali (W): Saraswati foundation, E-15, Bharat Baug, 1st floor, Lane next to Vijay Sales, Near Chandorkar Hospital, Behind Shiv Temple, S.V. Road, Borivli (W), Mumbai- 92 Dadar (W): Our Lady of Salvation Church, (Formerly known as Portuguese Church) Gokhale Rd South, Dadar (W), Mumbai 400 028. Chembur: Seva Daan Special School, St. Anthonys Rd, Near OLPS Church, Chembur, Mumbai 400 071 Khar Santacruz: Wi Wurry, Society of the Sacred Heart 69 Provincial House, Sardar Vallabhai Patel Road, Behind Standard Chartered Bank, Off Linking Road (Lane between Standard Chartered and Tommy Hilfiger Showroom). Santacruz (W), Mumbai-54 Vashi: Specialty Physiotherapy Department, MGM Hospital, Sector 3, Vashi, Navi Mumbai 400 705 New Marine Lines: MRC Bldg, Bombay Hospital Classroom,2nd floor, 12 New Marine Lines, Mumbai- 20 First Saturday of every month, 10 am

Second Saturday of every month 3:30 pm

Third Saturday of every month 10:00 am Third Saturday of every month, 4pm

Fourth Tuesday of every month 3:30 pm Last Saturday of every month 12:30pm

Physiotherapy Support Groups in Mumbai Wadala : Rotary Centre, Karve Park, Behind Bharat Motor Training School, D. S. Barato Marg (Wadala Station Road) Borivali (W): Saraswati foundation, E-15, Bharat Baug, 1st floor, Lane next to Vijay Sales, Near Chandorkar Hospital, Behind Shiv Temple, S.V. Road, Borivli (W), Mumbai- 92 Every Thursday 3:30- 5pm

Every Tuesday 10am-12 noon

For further information about support groups in your area and attending the meeting please contact: Ms.Shibani on 91-22-22068787/22064747 /9967774944 | Poorva 9920756750 | Debbie - 9867400480 You can also write to us at : Parkinsons Disease and Movement Disorder Society, C/o Dr.B.S.Singhal, Rm 131, Bombay Hospital, 12 Marine Lines, Mumbai - 400 020 Email: pdmds.india@gmail.com

18

Keep your fears to yourself but share your courage

movement

Book-Post

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If undelivered, please return to : THE PARKINSONS DISEASE & MOVEMENT DISORDER SOCIETY, 6, Jasville, 1st Floor, Opp. Liberty Cinema, Marine Lines, Mumbai 400020.

Issue 12 | March 2011

KLERT