October/2006 News, p. 3 Award Goes To R. White, p. 6 Holiday Turnaround p. 8 Questions about MS, p. 9 Legal Briefs, p. 12 Progressive MS, p.

14 TeamMS Events, p. 16 Regional News, p. 18

Volume 3 Issue 4 Mike and Brooke Maroth

Michigan Chapter, Inc.

Because the future face of MS is everyones business....This is why were here.

Tiger's pitcher Mike Maroth teams up with Michigan Chapter

pictures, and mix and mingle with supporters! The fun and fundraising continued on Monday, August 21, 2006 at the National MS Society Night at Comerica Park. Nearly 1,000 supporters joined us at Comerica Park as we cheered our Detroit Tigers on to victory over the Chicago White Sox. The National MS Society, Michigan Chapter took part in a special pre-game ceremony to honor the Maroths, and our hearts were warmed as we watched Mikes father, Bill, throw the first pitch to his son.

arlier this year Detroit Tigers Pitcher, Mike Maroth and his wife Brooke, reached out to the National MS Society, Michigan Chapter, in support of Mike Maroths father, and asked how they could help. That initial phone call led to an exciting partnership as the Maroths were named as our 2006 National MS Society Michigan Ambassadors. They made it clear that they didnt want to be Ambassadors in name only and stepped up to the plate to prove that. They supported our MS Walk event, and their commitment led to the creation of the first annual Strike Out MS Bowling Spectacular Hosted by Mike & Brooke Maroth and National MS Society Night at Comerica Park. On Sunday, August 20, 2006 the Strike Out MS Bowling Spectacular, hosted by Mike & Brooke Maroth, was held at Thunderbird Lanes in Troy. The Maroths welcomed more than 30 teams, and close to 100 spectators, to the successful event. The highlight of the evening was when 14 Detroit Tigers arrived to sign autographs, take

(left to right) Mike and Brooke Maroth, Pat McDonald, Darrious Hilmon, Kim Howard and Mike's parents, Bill and Charlotte Maroth

A publication of the National Multiple Sclerosis Society, Michigan Chapter 21311 Civic Center Dr., Southfield, 48076-3911 Ph: 248-350-0020 800-243-5767 Fax: 248-350-0029 E-mail: info@mig.nmss.org Chapter Chair Peter Burton Chapter President Patricia A. McDonald Newsletter Editor Joseph Mead The Michigan Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience and expert opinion, but do not represent therapeutic recommendations or prescrip-tions. For specific information and advice, consult a qualified physician. The Michigan Chapter of the National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear (in this publication) solely because they are considered valuable information. The chapter assumes no liability whatsoever for the contents or use of any product or service mentioned. The mission of the National MS Society is to end the devastating effects of multiple sclerosis.
Copyright 2006 National MS Society

FALL2006 Promising TreATmenTs Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Societys medical advisors recommend that people with MS talk with their health care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National MS Society today at www.nationalmssociety.org or 1-800-FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

2007 SponSorShip propoSalS arE availablE

If you know of a company or have a contact with someone who may be interested in sponsoring one of the TeamMS 2007 special events, please contact the Societys Marketing & Development Department at 248-350-0020 ext.

Toll-Free Number: 1-800-FIGHT-MS

NEWS sTem CeLL BiLL VeToeD On July 19, President George W. Bush vetoed the Stem Cell Research Enhancement Act of 2005, which would have increased the supply and quality of human embry- onic stem cell lines that can be used in federally funded research. Hours later, the U.S. House of lowing its second approval by the FDA. Biogen Idec and Elan Pharmaceuticals anticipate some delays over the next few weeks while infusion professionals receive special training and new infusion sites are set up. The drug, given monthly by IV, is only available to patients and physicians who have registered in the TOUCH prescribing program at authorized infusion sites where medical personnel have been trained to minimize the risk of PML. PML (progressive multifocal leukoencephalophy) is a brain disease that occurred in three people who had been in Tysabri clinical trials. Two of them died. Under new FDA guidelines, Tysabri is generally recommended for people who are unable to tolerate or have had a poor response to the other approved disease-modifying MS therapies. It is not to be combined with the chronic use of any other immune-modifying agents and it is not recommended for anyone with a weakened immune system. Complete information, including frequently asked questions, is available on our national web site at nationalms society.org/tysabri.asp, or call us (1-800FIGHT-MS), or Biogen Idec (1-800-4562255). eXPerTs onLine The Rocky Mountain MS Center has an online Forum where anyone with a computer can get answers to questions from MS professionals as well as tap into the collective wisdom of expertspeople who live with MS. To participate, register at www. mscenter.org/forum. The Forum is moderated by the professional staff of the Center who will do their best to answer all questions. 3

Representatives fell 51 votes short of the two-thirds majority needed to override Bushs veto. The vote was 235 for, 193 against. President Bushs veto came in the face of bi-partisan congressional backing for the bill, and strong public supportincluding thousands of people with MS who called and e-mailed. Supporters noted that the original federally approved stem cell lines have been whittled down to about 20, all of them contaminated. Because of the veto, funding from the National Institutes of Health remains restricted to embryonic stem cell lines created before August 9, 2001. The ban goes beyond forbidding federal dollars to be applied to such research. It is illegal for any federally funded equipment to be used for research on newer cell lines. We regret the decision to veto the bill, Joyce Nelson, President and CEO of the Society, said. But we appreciate the many congressional leaders who see the promise in expanding this important research area. TYsABri AVAiLABLe AgAin Tysabri (natalizumab)the latest disease-modifying drug for controlling MSreturned to market this summer fol-

Visit our website at: www.nationalmssociety.org

NEWS DeATH oF senATe BiLL 1955 When Society activists converged on Washington last spring they hoped to stop S. 1955, the Health Insurance Marketplace Modernization and Affordability Act of 2005. Despite the appeal of words like modernize, affordability, and marketplace, our policy analysts quickly saw the pitfalls for people with MS. The bill would have allowed small businesses to opt for inadequate health coverage and it would have required them to pay higher insurance rates for their employees with chronic health problems. The MS community was deeply concerned about the impact this would have on getting or keeping a job with a small firm. MS activists visited 80 senators and made their concerns known. So did members of the Societys Action Network, who along with other advocacy groups, flooded Senate offices with calls and emails. On May 11th, the Senate failed to invoke cloture on S. 1955 (meaning a motion to bring the bill to a vote). The maneuver means the bill is dead. An alternative bill, S. 2510, has been introduced that may make insurance more affordable for small businesses without jeopardizing state health care protections. To keep abreast of federal insurance legislation and more, join the

FALL2006 MS Action Network. Go to nationalmssociety.org/ ActionNetwork. Or call us. miLesTones in ms CAre: 20, 9, AnD 6 YeArs oF serViCe MS professional organizations are flourishingwith success that brings benefits to everyone contending with this disease. 20 YEARS: The Consortium of MS Centers, or CMSC, pioneered the concept that people with MS need medical care plus rehabilitation, psychological, and social supports by a team of specialists. Today, CMSC connects 4,000 MS professionals in the U.S., Canada, and Europe. Go to www.mscare.com for an alphabetical list of the U.S. comprehensive MS care centers that are CMSC members. 9 YEARS: International Organization of MS Nurses (IOMSN), was formed to share the knowledge nurses need to best care for people with MS. It encourages nurseled research and offers certification examinations. In just nine years, IOMSN has certified 1 1,000 MS nurses in 29 countries. If you see a nurse name tag with MSCN on it, you have met an MS specialist. Visit www.iomsn.org. 6 YEARS: Latin Americas Committee for Treatment and Research in Multiple Sclerosis, or LACTRIMS, includes 500 professionals in 17 North, Central, and South American countries. Once considered rare among people of Hispanic backgrounds, MS is now reported at rates matching the U.S. in areas where MRI is readily available. LACTRIMS helps establish clinical care centers, stimulates research, and promotes the best MS treatment. Go to www.lactrims.org for more information.

Joshua Roberts

MS activists at work during the 2006 Public Policy Conference.

Toll-Free Number: 1-800-FIGHT-MS

NEWS new Books/DVD in soCieTY LiBrArY Multiple Sclerosis: 300 Tips for Making Life Easier, Second Edition, Shelley Peterman Schwarz, Demos Medical Publishing, 114 pages, 2006. This extensively revised second edition of Multiple Sclerosis: 300 Tips for Making Life Easier contains tips, techniques, and shortcuts to help people with MS organize and simplify their lives. From basic principles to specific ideas, this book is packed with helpful information for those coping with the special challenges of a chronic illness. Updated chapters cover Home Safety and Mealtime, and much more. Barrier-Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers, 2nd edition, Candy Harrington, Demos Medical publishing, 292 pages, 2005. Find and book an accessible room, cruise, ground transportation, and overseas travel. Learn your disability laws and rights, locate the right travel agent, protect your wheelchair when you travel, and be ready for the changes in security that affect the way you maneuver through airports. All this and much more is available in this book for those who use a wheelchair, walker, cane, or have mobility limitations. Also included is a greatly expanded section on cruises, new material on childrens travel issues, and global resources. There is Room at the Inn: Inns and B&Bs for Wheelers and Slow Walkers, by Candy Harrington, Demos Medical publishing, 227 pages, 2006. This book is a guide to accessible inns and B&Bs throughout the US. Grouped geographically by state, this handy guidebook contains detailed reviews of 117 properties in 40 states. It features a wide selection of lodging choices, from Victorian inns and quaint B&Bs to mountain retreats, a dude ranch, and even two safari parks. Multiple Sclerosis: Understanding the Cognitive Challenges, by Nicholas LaRocca, PhD & Rosalind Kalb, PhD, Demos Medical Publishing, 152 pages, 2006. Despite the prevalence of disabling cognitive symptoms among people living with multiple sclerosis, there is a dearth of literature on this important topic. This book is the first comprehensive discussion of MS-related cognitive dysfunction, including the changes that can occur, their assessment and treatment, and strategies for dealing with their impact in daily life. But You Still Look So Well (DVD). In a follow-up documentary about multiple sclerosis and the challenges faced by people who confront the disease, filmmakers Audrey Geyer and Kevin Lindenmuth explore what its like for people who have MS and their families. Interviews with healthcare professionals and spokespeople for the National MS Society, Michigan Chapter offer more details about MS, medication, programs, and services.

Visit our website at: www.nationalmssociety.org

LIVING WITH MS

FALL2006

Michigan Chapter Scholarship Awarded to Rachel White

he National MS Society Scholarship Program annually provides college scholarships to people with MS or children who have a parent with MS. During the past year, 942 applications for the scholarship program were received and $442,000 was awarded to 204 students from 49 chapters. The Michigan Chapters 2006 scholarship winner is Rachel White from New Lothrop, Michigan. Rachels mother, Mary Jo, was diagnosed with MS in 2002 after nine years of visits to neurologists offices and testing. That diagnosis began a journey, not only for Mary Jo, but also for her daughter Rachel. Rachel reports watching her mother give herself injections and then losing her usual energy for the next few days. Rachel then assumes many of the household duties her energetic, stay at home mom usually takes care of. However, Rachel says she has not been held back because of her mothers illness, and that her parents have always allowed her countless opportunities to be successful. Her list of school activities backs that statement up. Rachel was a member of the New Lothrop FFA, captain of the girls basketball team (she holds the schools three-point record), captain of the girls track and field team (she holds 6

the 3200m record), member and officer of the student government, lector and member of her church youth group, and a junior advisor for the Shiawassee County Fair board. She also graduated from high school in the top 5% of her class. Rachel is now attending the University of Michigan. Her goal is to become a well-known political analyst or a political news broadcaster. She is looking forward to being active in student government and to studying abroad in Australia while working in the Australian Parliament. After she graduates, she hopes to work at a major news network such as ABC News or FOX news as a news anchor, or work in the federal government. The National MS Society scholarships are annual awards. Eligibility requirements include: High school seniors who are the children of people with MS who will be attending an accredited post secondary school for the first time. High school seniors who have MS and will be attending an accredited post secondary school for the first time. High school (or GED) graduates of any age who have MS and who will be attending an accredited post secondary school for the first time. The scholarship program details and application form is available at www.nationalmssociety.org. It will remain posted until the closing date, January 15, 2007.

Toll-Free Number: 1-800-FIGHT-MS

LIVING WITH MS

Mind Games: Make the best of your cognition

he doorbell rings. The baby cries. The dog barks. You freeze. Theres too much coming at you at once and youve lostin this moment that executive function: what to do next. Cognitive problems can sneak up on people with MS. There are many things that help: keep a notebook and pen on hand for your to-do list; use an electronic organizer or digital recorder; post a family calendar on the refrigerator. But what else? keep the brain on its toes Anything that keeps your mind engaged and thats fun is beneficial, said Patricia Bednarik, a speech language pathologist at the University of Pittsburgh MS Center, which sees over 2,000 people with MS. Puzzles and games of all kinds are wonderful for the brain and really help exercise concentration, organizing, planning, and memory skills, Bednarik said. while waiting . . . Challenge yourself whenever you have to wait. Count backwards by 2, 3, or 5. Name states that start with M. Carry puzzle books or crafts. speaking of interactive Solitaire is good but playing games with others is better. If theres a club for your hobby or favorite game, join it. Interacting with other people has cognitive benefits, Bednarik said. get physical Work the other side of your brain. Brush your teeth or hair with your other (non-

dominant) hand. Button a shirt with your eyes closed, sitting down, Bednarik added. And remember physical exercise helps too. The brain benefits from the increased oxygen that exercise brings. Brain games On the Web www.gotofreegames.com Offers games for salepicture matching, card games, jigsaws, and moreand samples to play for free. www.cut-the-knot.org Has math games galore involving probability, illusions, fractals (if you play youll find out what they are). www.puzzledepot.com Has everything from traditional board games to animated cartoons. Some require good hand-eye coordination or may be hard to see, but sound effects and lively graphics make them fun. www.terrystickels.com Offers excellent brain stimulators from syndicated columnist Terry Stickels. In the Books Puzzle and game books are quieter and easier to carry. Moreover books can be used with magnifiers if MS is fuzzing ones vision. To discover whats personally appealing, sample crosswords, Sudoku, word search, acrostics, mazes, and more. Puzzle books can be found everywhere from dollar stores to bookstores. Amazon.com has a huge selection. 7

Visit our website at: www.nationalmssociety.org

LIVING WITH MS

FALL2006

Holiday Turnaround!
Sue Chapman, MA, MSW

ooooooo, it cant be that time of year again! Yet, the entranceway will soon be wet with melting snow, boots will be drying in the corner, and those songs will be back on the radio. Everyone will be running everywhere, doing secret things, decorating the house, laughing, and hoping something magical will happen. Whew, it often seems as if it is just too much to handle, doesnt it? Over the years, different ideas have been put forth for coping with the intensity of the season and to help us find meaning amidst the chaos and to remember what its really all about. Ideas such as giving your time in place of a gift, helping your kids make presents or bake cookies, and opening your home to someone who may be alone are all great. But this year, just for fun, why not make the holiday about you, too! Start thinking about what you want or need now and let folks know! When your family asks what you want, tell them! Now youre thinking, Oh, I cant do that. Sure you can, just be sure your request is do-able. For example, lets say you see something youd like on the shopping network, in a catalog or at the store. Help your partner out by letting him or her know. Maybe you can share a couple of options so there is still that magical element of surprise when you open the gift. Then you think, Well, what Id really like is for my daughter to clean her room once a month. That would be gift enough for me! So, tell her to wrap that promise 8 up and put it under the tree! Saves her money and you get something you really want. As for your grown kids who send you a plant, gloves, or a nice robe you dont need, perhaps the perfect gift you could open is a card promising to visit every month or call you on Sundays to say hello. Speak up and let your wishes be known. Give the season a little different twist and see what a happy and unusual holiday it will be for all. Its important that, like any gift, the promise must be wrapped up in a package or card that you can open and celebrate! Youll feel the holiday throughout the year as folks who gave promises follow through. Everyone will feel good knowing theyre giving you something you really want. And this technique can work both ways. Maybe someone has a wish you could fulfill for them making their holiday truly unique as well! Happy holiday turnaround to you now and throughout

Toll-Free Number: 1-800-FIGHT-MS

LIVING WITH MS

Questions about MS?

he National MS Society is proud to be your comprehensive source for information on multiple sclerosis or for referrals to programs and resources in your area. Trained volunteers and staff members answered questions from more than 1,400 callers statewide during the 2006 program year. We encourage you to use this service, too! The following is a sample of questions that have been posed by people with MS and their family and friends: I'm on disability but I want to work part-time. Who can help me get a job? My doctor doesn't really take the time to talk with me. I'm confused about MS symptoms. My daughter has MS. Where can she go for a self-help group? Where can I go? Can I sign her up to be on your mailing list? I need help to get a ramp for my van. I have been on medical leave for three months. I asked for a job accommodation that has been denied. My employer wants me to apply for long-term disability. What can I do to keep my job? What physical therapists and occupational therapists in my area are familiar with MS?

Can I be fired for refusing to work overtime or on weekends? My wife and I need some help around the house. Do you have volunteers who come to do chores? Now that I am enrolled in Medicare Part D, I am no longer eligible for assistance from the pharmaceutical company. It will cost me over $400 a month to continue treatment. Where can I get financial assistance? My husband has MS. I need a break from his constant needs. What should I do? Where can I get health insurance? I'm unemployed and have an income of $900 per month. If you have a question about MS or need a referral for a problem caused by your MS, please call our Information and Referral line at 800-2435767 ext. 235 or send a request by e-mail to: info@mig.nmss.org. Please note that due to our confid-entiality policy, we will not say we are calling from the National MS Society, Michigan Chapter, when we return a call or leave a message. Also, if you have Privacy Manager or Caller ID our phone number will show up as 1111111.

Visit our website at: www.nationalmssociety.org

RESEARCH sTorY memorY TeCHniQUe mAY imProVe memorY Many studies have shown that learning something new is a key problem for many people with MS. A small, Society-funded study last year suggested that using a memory exercise called story memory technique significantly improved this ability in people with moderate to severe MS cognitive impairment. Nancy Chiaravalloti, PhD, and colleagues at Kessler Medical Rehabilitation Research and Education

FALL2006 Corporation in West Orange, New Jersey, published their results in the February 2005 issue of Multiple Sclerosis. Story memory technique involves creating mental pictures and a context, or story, to help commit something to memory. The technique was so successful in last years study88% of participants showed significant improvementthat Dr. Chiaravallotis team is now testing it in a clinical trial that will involve 200 people with MS-related learning and memory deficits. The researchers expect to complete the trial in late 2009 and are currently seeking volunteers. For information, see www.clinicaltrials.gov/ct/show/.

Drug Trials: What do the names mean?

here are many MS therapies currently being studied in clinical trials. Youve read about some of them, and youll be reading about many more in the future, as new drugs and treatment approaches are developed. The current FDA-approved therapies for MS were studied for decades before being released to market, and studies didnt end with approval. Heres a look at the process that every drug goes through, from laboratory to local pharmacy. early studies; basic research Before a drug can be tested in humans, scientists must have a solid rationale as to why it would be helpful. They must also be reasonably certain that the drug wont cause more harm than good. Preliminary research under either name usually involves years of experiments in animals 10

and cells mandated by FDA regulations. MS drugs are often tested in lab animals with an MS-like disease called EAE (experimental allergic encephalo-myelitis). Only humans get MS, so researchers must use a model disease at this stage. If the results are encouraging, they will be submitted to the FDA with a request for permission to begin testing in people. Clinical trials, aka testing in people Clinical trials are normally done in three phases. They are defined by the FDA and each successive phase involves a larger number of people. Phase I: Is it safe? Usually lasts several months Involves a small number of healthy volunteers or people with MS

Toll-Free Number: 1-800-FIGHT-MS

RESEARCH

Drug Trials, continued from pg. 6

Determines how a drug is absorbed and metabolized by the human body, including any side effects Open-label, meaning that everyone knows what the volunteers are taking. Phase II: How well does it work to treat the disease? Lasts from several months to several years Involves larger numbers of participants with the disease Most are randomized, meaning one randomly chosen group receives the active drug, while a second control group gets either another treatment or an inactive look alike or placebo Can be double-blind, meaning neither the researchers nor participants know who is taking what until the trials completion. Phase III: Does it work over time for many people? Referred to as pivotal trials because, if successful, the next step is an application for FDA approval Lasts until all endpoints are met (often around two years) Involves several hundred to several thousand participants Often conducted by multiple teams at different sites around the countryor the world Provides more extensive understanding of the drugs effectiveness and the range of possible side effects Typically randomized and doubleblind, for the most persuasive data. Late Phase III/Phase IV: How does it perform out in the world? Just because the FDA has approved a new drug, the research isnt over. Most of the FDA-approved MS therapiesCopaxone, Betaseron, Rebif, and Avonexare still in post-marketing studies. Tysabri, which was approved for rerelease in June (see NEWS on page 3), will be closely studied for the next five years in some 5,000 people as part of an agreement between Tysabris sponsors, Biogen Idec and Elan Pharmaceuticals, Inc., and the FDA. Generally, those studies fall into one of three categories: Comparisons with other available drugs Studies of long-term safety and effectiveness and impact on the quality of peoples lives Cost-effectiveness relative to other therapies. Clinical Trials in ms The National MS Societys 2006 listing of clinical trials in MS features ongoing MS trials, trials being planned, and recently completed trials. This years list includes 141 studies in MS research, with everything from small, early-phase studies to later-stage trials involving hundreds and even thousands of people. Clinical Trials in MS can be read on our Web site at nationalmssociety. org/clinicaltrials, where it is available in two versions: a basic chart of agents under study, and an extended version with detailed scientific information and results. There is also a list, by state, of the clinical trials recruiting volunteers. No web access? Call us at 1-800FIGHT-MS and request a copy. 11

Visit our website at: www.nationalmssociety.org

ADVOCACY

FALL2006

Legal Briefs
By Ina Cohen There are many legal issues that have particular impact on the lives of those diagnosed with MS. While the local chapter cannot provide legal services, it does try to provide general information and referrals to resources. Ina C. Cohen is an attorney and member of the Board of Trustees, National Multiple Sclerosis Society, Michigan Chapter, Inc. plan approved by the Social Security Administration to resume employment. If you have such an approved plan, income may be saved toward specified future work related expenses (i.e., training or schooling) and not reduce benefits. In general, you are permitted to keep the first $65 you earn and one-half the amount over $65 as long as you continue to meet the requirements for receiving SSI. Social Security Disability If you earn $860 or more during a month, the SSA will consider your earnings substantial and your right to continuing disability benefits would be subject to re-evaluation unless you have entered into a formal trial work period by notifying the SSA. A trial work period (twp) is for nine months (the months need not be consecutive but all occur within a 60 month period) and it is intended to be an opportunity for you to test your ability to return to work. For any months of the twp that you earn over $620 for 2006, the month will count toward the total of nine months. After the twp, your benefits will be discontinued for any months in which you have substantial earnings ($860 in 2006). There are further additional rights which should be reviewed carefully before you start a twp. You are only entitled to one twp during your lifetime. If you do not enter into a twp, you can usually earn up to the $860 per month without necessarily jeopardizing your benefits. You should recognize, though, that if you routinely have earnings in

Q: a:

I am currently receiving disability benefits but feel that I could do some parttime work. Would this affect my receipt of disability benefits? This is a very tricky problem and needs to be examined on an individual basis. If you are referring to Social Security disability benefits, Supplemental Security Income benefits (SSI), employment provided long term disability benefits (LTD, EDB, etc.), private policy benefits or disability retirement benefits, different issues and concerns need to be evaluated. You should consider whether your attempt to work part-time will be part of a plan to return to full-time work or simply to supplement your income intermittently. I will briefly discuss the different sources of disability funds and the impact earnings might have on them. SSI is a needs based program for severely disabled individuals. Benefits are reduced due to the receipt of income and assets unless it is part of a formal 12

Toll-Free Number: 1-800-FIGHT-MS

ADVOCACY

Legal Briefs, continued from pg. 12

the range of $800 - $860 per month, it is likely that your disability will be reevaluated. Since there is a lag in reporting through the IRS, etc., the SSA might not notify you of the inquiry for some time. For both SSI and Social Security Disability benefits, there is a program entitled Ticket to Work. This enables people to start a program designed to resume working at some level without sacrificing health coverage or other support. It provides support services, vocational and rehabilitation counseling, etc., and it is intended to return you to the workforce. Employment Long Term Disability (LTD, EDB, etc.) - The right to earn income while receiving benefits is controlled by the actual policy language. The insurer may have the right to a setoff for each dollar earned or it might cause your benefits to be terminated. You must read the applicable provisions very carefully. Some policies have provisions about returning to your employer parttime where you retain your earnings for the hours worked and the insurance carrier will pay the remaining percent of your monthly benefit. Frequently, a former employer wont cooperate because it cant manage with part-time employees. Private policy benefits - Again, you must refer to the actual policy. If it does allow you to earn some income, you might lose benefits, have setoffs or have to start paying premiums for the insurance policy again. In conclusion, before you resume any work activity, you need to examine your sources of income and determine what restrictions exist for pursuing any work activity and what the consequences might be if you do earn income. Do not rely on your own interpretations but seek advice from knowledgeable sources. Do not rely on statements of persons not trained in your particular benefit. Make every effort to obtain a printed statement of the rules controlling your situation.

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13

NEWLY DIAGNOSED

FALL2006

Have You Been Diagnosed with Progressive MS?

by Sharon Brown

aybe some words from a veteran like me will help. Let me skip to the end of the story first. About 15 percent of us are progressive from the start, as I was. Within two years of my diagnosis, I was using a scooter almost full-time, although I could and I can still walk. The scooter didnt stop me from playing with my daughter, or helping to care for my mother. I have also dated, worked, and socialized. The past 11 years have had highs, lows, tears, laughter, and change. For me, MS has not been a smooth, sight-seeing kind of train ride, but it hasnt been an endlessly dark tunnel, either ... Back when I was a full-time health writer I was often asked if I liked the idea of managed health care. My answer was, Sure, as long as I do the managing. I believe no one knows my body the way I do and no one can be my medical advocate better than me. That doesnt mean I do everything alone! Far from it. Having support is vital. Finding support sometimes takes a bit of work. I found I needed more than a good doctor and good friends. Ive had a counselor of one type or another ever since I thought my bizarre symptoms meant I was going crazy. Unlike family members, I dont have to worry that a counselor wont be able to handle it. Its a professional relationship ... I wish I had learned sooner to keep track of my health as it changed. So, heres a suggestion: Keep a journal in a bedside drawer and whenever something changes start a new page with the date at 14

the top. Draw a stick figure and use circles or arrows to indicate changes. Take your journal with you to your next appointment. Write down your questions, too, as you think of them. Adapted from So You Have Progressive MS by Sharon Brown. Read it at nationalmssociety.org/BrochuresProgressive.asp or call us for a copy. Progressive MS Resources on the Web The National MS Society has devoted a comprehensive web page to progressive MS at nationalmssociety.org/ ProgressiveMS with links to more than two dozen articles on prognosis, symptom management, treatments, current research, life planning, and resources. If you cannot access the web, call us and ask for our progressive MS materials.

Knowledge Is Power is a 6-week free, at-home educational program for people who are newly diagnosed. Mail or e-mail formats. To register, call 1-800-FIGHT-MS (1-800-344-4867), or visit www.nationalmssociety.org. This is why were here.

Toll-Free Number: 1-800-FIGHT-MS

FUNDRAISING reTiremenT PAYmenTs YoU CAn DePenD on With all the ups and downs in the financial markets, many of the Societys friends are turning to our gift annuity program. A gift annuity is a contract between a donor and the Society wherein the donor transfers money or property to the Society in exchange for our promise to pay the donor fixed annual payments for life. It provides an ideal way for people to support the Society while making certain they have first provided for themselves. How it works Mr. and Mrs. Smith are both 75 years old. They donate $50,000 to the Society in exchange for a charitable gift annuity that pays them 6.3% percent (based on their combined ages) or $3,150 every year for the rest of their lives. And even when one of them dies, the surviving spouse will continue to receive the same fixed payments for the rest of his or her life. Because the payments are backed by the full assets of the National MS Society, the Smiths can have confidence that their annuity checks will always be there for them. They also have confidence that their charitable donation supports the Societys mission to end MS. You don't have to be married to obtain a gift annuitysingle-life annuities pay a higher rate. Also, the older a donor is, the higher the payment rate. To learn more, call our Special Gift Office at 800-923-7727. new TAX oPPorTUniTies On August 17, 2006, President Bush signed into law new tax incentives for charitable gifts from donors who are 70 12 or older. The Pension Protection Act of 2006 encourages financial support of qualified charitable organizations such as the National Multiple Sclerosis Society. Under this new law, you can make a lifetime gift using funds from your IRA without undesirable tax effects. Previously, if you had taken a distribution from your IRA or Roth IRA to make a gift to the Society, you would have been required to pay income tax on the distribution; then you would have been entitled to a charitable deduction for the gift amount to the Society. Fortunately, now these IRA gifts can be accomplished simply and with no out of pocket tax expense to you. Plus, you can make a substantial gift now while you are living and able to witness the benefits of your generosity. This opportunity is available for both the 2006 and 2007 tax years, so you will want to act soon! You can benefit from this new law if: You are age 70 12 or older The gift is $100,000 or less each year You make the gift on or before Dec. 31, 2006 for the 2006 tax year; or you make the gift on or before Dec. 31, 2007 for the 2007 tax year You transfer funds directly from an IRA, Rollover IRA or a Roth IRA to the National MS Society. How to Make a Gift Contact your IRA custodian to transfer your desired amount to the National MS Society. For More Information It is wise to consult tax professionals if you are contemplating a gift under the new law. The Societys Special Gift office is pleased to provide you educational information about the new law. Call us at 800-923-7727. 15

Visit our website at: www.nationalmssociety.org

FUNDRAISING

FALL2006

2006 Event Season Winds Down

Golf had a great year. Over 230 foursomes hitting the links to golf all day long without paying greens fees in exchange for raising funds to fight MS. Funds are still being received daily, but with a 30 percent gain of registered participants over 2005, this years goal of reaching $250,000 raised to fight MS is well within reach! This is why we golf! general motors ms 150 Bike Tour Fundraising goal within reach! Thanks to all of the General Motors MS 150 Bike Tour participants for making 2006 such a success! Over 1,400 cyclists came out to accept the challenge of cycling to a cure and help end the devastating effects of multiple sclerosis. Some of them braved drizzle and cool temperatures and others had to combat record high temperatures in July. They all battled hills, traffic, and wind and did it all to help the 16,000 people in Michigan with MS. Your efforts are well worth it to date over $873,000 has been raised! Although the pledge deadline to receive a prize has passed, its never too late to send in any remaining money youve collected. Help ensure that we reach our goal of $950,000 to make it our most successful year ever! This is why we ride! Thanks to all of our 2006 participants. We look forward to seeing you in 2007! All individuals raising $2,000 or more and teams raising $3,000 or more in 2006, will be invited to the 2006 Recognition Reception. Please watch your mail and email for more information.

The 2006 TeamMS events are proving to be a true success! Over 900 teams participated, raising over $1.7 million to date. The National MS Society, Michigan Chapter cannot express the excitement we have moving into the 2007 event season! Below are a few highlights from each of our events wrapping up in 2006. Christopher & Banks ms walk raises $1.42 million! Our 2006 Christopher & Banks MS Walk season is now complete, and what a great year it was! Nearly 8,700 people joined us as we continued our fight to end the devastating effects of MS. With a goal of $1.35 million, the supporters of the National MS Society rose to the challenge and raised $1.42 million! The commitment and dedication they showed to the more than 16,000 people living with MS in Michigan is clearly evident, and we cant thank them enough. Their efforts will allow us to continue to provide valuable programs and services to our clients and their families, and continue to pursue the research that is so important to finding the cause and cure for MS. Thank you for your wonderful display of HOPE! This is why we walk! Huntington ms Longest Day of golf comes close to reaching the 2006 goal of $250,000! Running throughout the month of May, the 2006 Huntington MS Longest Day of 16

Toll-Free Number: 1-800-FIGHT-MS

FUNDRAISING

Team Feature: Sprague Scooters

avid and Ruth Sprague began participating in the MS Walk in 1989, soon after their son, Steve Sprague, was diagnosed with multiple sclerosis. Steves journey with the devastating dis-

the team shows interest, we will continue doing it, said Sprague. In the 18 years of participation, Sprague and his team have participated in 11 of the 15 walk sites offered, visiting a few of them more than once upon team requests. In 2006, Sprague Scooters participated at the Grand Rapids MS Walk, with nine team members, raising nearly $5,000. The Society looks forward to their continued support in 2007, and we cant wait to see which walk site they will choose!

ease was a long struggle, enduring numbness in his legs, and several exacerbations, leaving him with temporary loss of vision and voice. Steve currently lives in Chicago, where he was fortunate to begin seeing an MS specialist, and was a test patient on Betaseron, which David and Ruth claim as his miracle drug, since Steve has been in remission for about five years. David Sprague, team captain of Sprague Scooters and his team have been participating in the MS Walk for 18 years, raising over $70,000 in honor of their son. The team consists of family, friends, and co-workers. The thing that makes Sprague Scooters so unique is that the team changes its walk location each year. Each year the team comes together, takes a vote on where they would like to participate, and begin making their plans for travel. We like to make the MS Walk a mini vacation and family reunion by going to a different location each year. As long as

Join 130 runners as part of the MSAMS team during the Dertoit Free Press/ Flagstar Marathon, October 29, 2006. For more information visit us online at www.nationalmssociety.org/mig or call 877-242-3784 ext. 16. 17

Visit our website at: www.nationalmssociety.org

REGIONAL NEWS noVemBer November 4 - Take Time for You, a program for caregivers only in Flint Family members of people with MS are invited to this event to re-charge their batteries and to receive appreciation for their dedication to the people with MS they love. The program will be held at the Holiday Inn Gateway in Flint from 10:30 a.m - 3:00 p.m. The cost is $5.00. Following lunch, Elaine ScribnerMcParlane, CEO of Cartwheels, will present a program on empowerment and resilience. A time of appreciation will follow. This program is for caregivers only! For more information call Sue Arnot at 800243-5767 ext. 232. November 11 Symptom Symposium in Grand Rapids Notos Old World Dining will be the site for this great program on managing the symptoms of MS. Speakers for this all day program (10:30 a.m. 3:30 p.m.) will include Albert Aniskiewicz, PhD, discussing cognitive issues; Barbara Jahnke, MD, speaking about fatigue; Paula Jamison, OTR, PhD, leading a session on mobility issues and others. Lunch will be served. The cost for this program is $7.50. Complimentary admission is available. Watch your mail for the brochure. For more information contact Karen Bables at 877-242-3784 (toll-free). November 18 - Creating Your Story in Lansing Doug Schwentor, LMSW, will present this brand new workshop on using expressive writing for personal growth. Psychological research indicates that writing about emotionally challenging experiences decreases 18

FALL2006 the risk for stress and illness, improves moods, and fosters a more positive outlook on life. No previous writing experience is necessary. Individuals who have difficulty with handwriting may bring a tape recorder. The program will be held at the Holiday Inn Lansing West Conference Center from 9:30 am 4:30 pm. The cost of this program is $7.50. Complimentary admission is available. For more information, contact Karen toll free at 877-2423784. November 21 Take Time for You, a program for caregivers only in Southfield Family members of people with MS are invited to this event to re-charge their batteries and to receive appreciation for their dedication to the people with MS they love. The program will be held in the Education Center of the Michigan Chapter Office, 21311 Civic Center Drive from 6:00 9:00 p.m. Following a light dinner, Elaine Scribner-McParlane, CEO of Cartwheels, will present a program on empowerment and resilience. A time of appreciation will follow. This program is for caregivers only! For more information, Sue at 800-243-5767 ext. 232. DeCemBer December 3 - Saginaw Valley Holiday Party in Midland The party will be held at the Valley Plaza Resort in Midland beginning at noon. A buffet luncheon, entertainment, and a raffle are just part of the fun. For more information, contact Christy Bomba at 989-746-9051.

Toll-Free Number: 1-800-FIGHT-MS

REGIONAL NEWS December 10 - Holiday Party in Warren The party will be at the Ukrainian Cultural Center in Warren. Mark your calendars so you wont miss this party filled with fun, food, friends, entertainment and prizes! If you dont receive an invitation in the mail by Thanksgiving, contact Sue at 800-2435767 ext. 232. If you have never attended, please join in the fun. oPPorTUniTies Caregiver group leader needed in Western Wayne County or Downriver area Help support other caregivers in your area by leading a self-help group. This volunteer position requires a minimum of a one-year commitment to help organize, plan and facilitate a monthly self-help group for caregivers in the Western Wayne County or Downriver area. The time commitment is approximately 3-4 hours per month and training will be provided. Please call Sarah at 800-243-5767 ext. 230 if you are interested. Youre Young. You have MS. Youre not alone! Join the Young Persons Network. The Michigan Chapter has started a new initiative to meet the unique needs of people with MS between the ages of 15 and 30. The Network provides information, and support, as well as the opportunity to connect with peers. For more information, or to join the network, call Amy Piscopink Taylor toll free at 877-242-3784 or email her at amy.piscopink.taylor@mig. nmss.org. VoLUnTeer oPPorTUniTies Information and Referral Volunteer Do you enjoy helping others? Is volunteering in a friendly office atmosphere appealing to you? Would you like access to the latest MS information and research? The National MS Society is looking for volunteers to work in the Southfield office who are computer knowledgeable, excellent communicators, detailoriented and can follow directions. These volunteers will work directly under National MS Society staff answering phone calls from people seeking information about MS and referrals to community resources. Extensive training will be provided. Community Resource Investigator Locating and updating local community resources has become a top priority for the Michigan Chapter. Having these resources organized and available will help us to provide accurate, up-to-date information to individuals who call for referrals, regardless of where they live in the state. We need volunteers from around the state who enjoy solving puzzles and uncovering buried information to help us gather resources we can use for referrals. These individuals must have excellent computer skills (i.e., internet search engines, e-mail, Word) and access to a computer and landline phone to conduct and report their research. If you would like to be considered for the position, contact Sue at 800-243-5767 ext. 232 or Sue.Arnot@mig.nmss.org to receive an application and job description. This opportunity is open to people who would like to come into our offices in Southfield or Grand Rapids or even work from home.

Visit our website at: www.nationalmssociety.org

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EQUIPMENT CORNER
Condo, fully handicapped accessible, located in Troy, 3 bed ranch, $145,000. Call Darlene 248-703-4823. 1997 Olds 88 LS, 67k miles, red w/ grey int., excellent condition. Equipped with driver hand controls and scooter lift on rear, $5,800. Call Dave or Sue at 269-345-3670. Heavy Duty Shop Rider Scooter, 4-wheel, w/ charger, $1,000 obo. Call 269-982-2266. Invacare 3-wheel elec. scooter, red, 3 years old, purchased for $3,000, asking $1,000. 2000 Dodge Intravan w/ ramp entrance, 55k miles, dual AC/heat, dr. seat swivels into back seat, $16,000 obo. Call James at 586-412-5473. Elec. scooter, elec. wc, 4-wheel walker, and more. Call Florence at 586-756-9591. Hoveround wc, used 8 mths., purchased for $9,000 asking $1,500. Call Shelly at 248-2426164. Action Ranger elec. wc, reasonably priced. Call Ralph at 248-647-8064. 2001 Amigo RT Express, 3-wheel scooter, w/ charger, like new, used inside only, $300. Call Dennis at 989-772-8046.

Fall2006
Scooter lift for minivan or car, $875. Companion seat for minivan, $500. Call Chuck at 586-468-1832. Jazzi elec. wc, 2 years old, never been used, w/ 2 batt., $2,500. Call Mary Jane at 906-8753901 or e-mail mihauben@uplogon.com Pwr. Trainer, asking $400. Jazzy pwr. wc, asking $1,000. InvaCare pwr. wc, asking $10,000. 1999 Chrysler Town & Country van--Entervan by Braun, wc accessible, low mileage, asking $10,000. Call Elmer at 810-686-5175 or cell 810-287-3193 or e-mail uncle45616@aol.com for any of these items. Hoveround elec. wc, batt. operated, w/ lift, has remote, $2,000. Call Nancy Whitaker at 734-449-8090. Stand up wc, like new, folds up for easy transportation. Call Arthur at 248-269-9575 (day) or 248-620-1919 (after 5 pm) for details. 1998 Chevy 1500 conv. van, 77k miles, Ricon side entry wc lift, $7,500. Call 231-7232963.

National Multiple Sclerosis Society Michigan Chapter, Inc. 21311 Civic Center Drive Southfield, MI 48076-3911

Closing in on a cure