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MOVING TOWARD A WORLD FREE OF MS | VOLUME 8 EDITION 3

MSCONNECTION

ENOUGH IS ENOUGH.
Today, we are putting our collective foot down and declaring this instant the time to take action. We have reached the point when individual efforts can be made exponentially stronger through support and collaboration through an MS research revolution. NOW, we stand together to raise $250 million to fuel MS research. Research that will STOP MS in its tracks. Research that will RESTORE whats been lost. Research that will END MS forever. NOW, we need everyone to be a champion in the MS Research Revolution. We have committed to raise $250 million by the end of 2015 for MS research, and it will take each and every one of us to make sure we reach our goal. NOW. No Opportunity Wasted. So help us get this revolution going. Weve joined together with Phil Keoghan from the Amazing Race, to help lead this effort. ITS EASY TO BE A CHAMPION FOR MS RESEARCH - HERES HOW YOU CAN JOIN US AND PROUDLY LET EVERYONE KNOW THAT YOURE HELPING TO LEAD THE MS RESEARCH REVOLUTION. Continued on page 2

INSIDE THIS ISSUE

Wii and Me PAGE 4

Yuck Factor: The Sequel PAGE 7

Ten Tips for Hiring Home Help PAGE 12

Pushing for a Cure for MS PAGE 19

MSCONNECTION
A PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY, MICHIGAN CHAPTER
21311 Civic Center Dr. Southfield, MI 48076-3911 Ph: 800 344 4867 or 248 351 2190 Fax: 248 350 0029 E-mail: info@mig.nmss.org Chapter Chair Dean Munger Chapter President Elana Sullivan Newsletter Editor Chris Collins The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS.
Copyright 2011 National MS Society, Michigan Chapter

MS NOW continued from page 1

In 2009, I biked across America, over 3,500 miles, to raise awareness and money for multiple sclerosis. Now, its time to do more, were raising the bar and starting an ms research revolution, join me and become a champion for MS research together. We will raise $250 million for this important cause. No opportunity wasted isnt just my lifes motto. Its how we can make a difference NOW.

Phil Keoghan

Visit the following link to learn more: www.nationalMSsociety.org/ nowchampion.

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NEWLY DIAGNOSED

THE BENEFITS OF DENIAL

Egypt. And it actually has a place in helping people absorb a diagnosis of MS.
Denial allows people to take time to get used to a new situation and not focus on fears of what might happen down the road. Denial gets a bad rap, said David Rintell, EdD, a psychologist at Partners MS Center at the Brigham and Womens Hospital in Boston, MA, but it can be very useful and is sometimes necessary. Denial is a very basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. In the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance. In fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety. Hopelessness is destructiveit reduces

motivation, and makes us less likely to adhere to treatment, he said. I encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time to get used to having MS. Loved ones can help by giving their diagnosed friend or family member permission to deny and therefore Denial is not a river in cope. However, said Dr. Giesser, denial doesnt work long-term. You have to move past denial in order to treat and make plans, she cautioned. If instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail yourself of appropriate therapy for both disease and symptom management. To develop a sensible perspective, its important to get as much information as possible. Find a neurologist you can work with, who allows you to be active in your own care, Dr. Giesser advised. Its less scary when you feel empowered. Dr. Rintell also suggested speaking with other people with MS or a professional with relevant experience. After the initial shock, most people learn that MS can be a difficult illness, but they realize that they will be OK with it. Being optimistic turns out to be realistic.

Knowledge is Power is a six week, free, at-home educational program for people who are newly diagnosed. Mail or e-mail formats. To register, call 1-800-344-4867, select option 1 or visit nationalMSociety.org/knowledge. TOLL FREE NUMBER 1 800 344 4867 | 3

LIVING WITH MS

Wii AND ME
BY JONATHAN RUBIN

rough tackling and big kicks downfield. Then, back in the good ol U.S. of A., I played youth and varsity high school soccer. I was not great, but always good, always in the game, ready to play, an able teammate. While at the University of California at Santa Cruz, I frequently played with members of the Banana Slugs Division III, but never went out for the team I think due to a youthful desire to be more intellectual, less jock. I played on every intramural team, in every league, in every pickup game, whenever I had the opportunity to join, and would spend hours and hours just running around an immense field overlooking the Pacific Ocean chasing and kicking a small white ball. It was pure freedom. It wasnt until the winter of 9293 that I realized just how important it was to me.

Eighteen years ago, when I was 24, I lost something very important. I lost the ability to compete. I had played competitive sports my entire life. So much so I never thought what life would be without them. They were just part of After my first MS attack, it took me five me. But my competitive ability was taken away months to get back on a basketball court by my first major MS attack, one that left me and a year to even kick a soccer ball (my legs dizzy, weak and bedridden were heavily affected). It was (temporarily) for the first My competitive ability probably 18 months before a time in my life. was taken away by my friend talked me into trying Soccer was my primary first major MS attack, a pickup soccer game. I was little shakier, passion, with tennis and one that left me dizzy and a little slower, abut it was a little weaker, hockey following close weak. soccer, by golly, and I loved it. behind. I was taught the However, after many ups and downs and all beautiful sport of soccer first by Africans arounds, my MS has shifted into secondarywho lived in our apartment complex in progressive. I now walk with a cane and can Madison, WI, when I was six. Then, when only imagine playing in an actual soccer match. my family moved to England for three years, I learned another version, English football, which involves less intricate passing and more

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LIVING WITH MS

Tennis is a similar story. It was an early casualty of MS. Running made me dizzy and confused, neither of which is conducive to playing quality tennis. It is difficult for me to even break a sweat these days, let alone get a true aerobic workout. The muscles in my legs quit after two minutes of stationary bike riding and after 10 on a rowing machine. If I work out for 15 minutes, it becomes next to impossible for me to walk out of the gym. I enjoy yoga, but my muscles buckle with any pose that involves the legs.

and still backpedal to the baseline. I can sweat Which brings me to the present, to this like a pig again. I am, in a sense, complete. Christmas actually, when my family and I (my My experience reminds me of two sons are jocks too go the scene in the movie Avatar figure) bought the Wii Fit Plus Thanks to Wii, I can where the wounded veteran, game station from Nintendo. play golf, and I am who has lost the use of his legs, Thanks to Wii, I can play golf, once again a champion has his mind put into the body and I am once again a champion of an avatar. He walks a few tennis player. (level 2000) tennis player. I can trembling steps, and then starts groundstroke endlessly, connect running and running and running. He will not on every overhead slam and whip forehand stop. It is impossible to imagine what it is like to winners crosscourt. I can serve big, rush the net, not be able to run until you cant.

Affording Wii

One of Wiis drawbacks is that its not cheap. It usually retails for $250 and up, depending on model, accessories and games, although with a little Internet research, you may uncover lower prices. Or call us to see if any communal Wii events, such as bowling tournaments, or classes on using a Wii, are coming up in the area.

I havent yet tried soccer and basketball on the Wii and Im not sure that Nintendo can capture the joy of those sports quite as well as they did with tennis. But Im ready to start the PGA tour with Woods and Mickelson. Who wants to caddy? Jonathan Rubin, who lives in Madison, WI, is currently ranked 5,024 in the world on Wii Grand Slam Tennis and hopes to be #1 by spring.

TOLL FREE NUMBER 1 800 344 4867

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RESEARCH

MEDICARE IMPROVEMENT STANDARD CHALLENGED

For many people with MS, physical, speech or occupational therapy may be essential in preventing their abilities from deteriorating. However, many of these folks have been denied medically necessary rehabilitation services that they are eligible for through Medicare because of something called the improvement standard. The standard actually violates Medicares own official regulations, which say that the restoration potential of a patient is not the deciding factor for coverage and that therapies that help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected, are to be covered. This past January, a classaction lawsuit was filed in the U.S. District Court in Vermont, with the National MS Society as the first national health organization named plaintiff, and subsequently joined by the Alzheimers Association, United Cerebral
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Palsy, Parkinsons Action Network and Paralyzed Veterans of America. The lawsuit seeks to assure that a persons improvement status is not a basis for denying ongoing therapy services. The outcome will be reported in Government News at www. nationalMSsociety.org/ advocacy.

Forward initiative to move this potential therapy toward clinical trial faster.

WELCOME TO DIGITAL MOMENTUM!

POTENTIAL ANTI-SPASTICITY TREATMENT BOOSTED BY THE SOCIETYS FAST FORWARD PROGRAM

Key early-stage research on an oral treatment for spasticity, the painful and debilitating muscle spasms associated with MS, is underway at Canbex Therapeutics. The UK-based company received a $2.8 million Translation Award in March, 2011, from the Wellcome Trust, a global charitable foundation, to support this research. The work is being led by David Baker, PhD, an MS investigator under the National MS Societys Promise: 2010 initiative. The Canbex spasticity program has been supported by the Societys Fast

Momentum, the National MS Societys flagship magazine, is now available online at www.nationalMSsociety. org/magazine in a fully digital edition with plenty of bonus features. It includes all content from the print edition, including advertisements, and allows you to click on live hyperlinks, comment on articles and respond to reader comments, download whole issues as PDFs, print pages and share articles via e-mail, links or by posting to social networks. Digital Momentum is also available for free from iTunes and the Android Market. The app includes the magazine, the latest Society news, our Twitter feed and videos.

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MONEY MATTERS

YUCK FACTOR: THE SEQUEL

If drinking a glass of worm eggs could help with MS, people might just grimace and swallow. Two recently published studies explore whether infection with relatively harmless parasitic worms, called helminths, can reduce disease activity. The idea stems from the hygiene hypothesis, which suggests that an early lack of exposure to infectious agents may cause the immune system to later overreact and trigger MS. In the first phase of a clinical trial (HelminthInduced Immunomodulation Therapy, or HINT) supported by the National MS Society, John Fleming, MD, and colleagues at the University of Wisconsin - Madison, administered a drink containing helminth eggs to five people with recently diagnosed MS. The participants were then monitored with MRI scans. Study results, published in Multiple Sclerosis Journal 2011 Mar 3, showed that participants tolerated the helminth treatment well and neurological symptoms did not get worse. However, the small number of participants and the study design made it difficult to draw firm conclusions about the treatments effectiveness. The second phase of this study is now under way. In a previously reported Argentine study, Jorge Correale, MD, and Mauricio Farez, MD, at the Institute for Neurological Research, Buenos Aires, followed the disease course of 12 people with MS who ingested helminth eggs. They showed fewer relapses, better disability scores and lower MRI activity compared with uninfected

people. In a follow-up study published in Journal of Neuroimmunology 2011 Jan 28, the researchers report that in four infected participants who required antiparasitic treatment, MS symptoms and disease-related MRI activity subsequently increased. However, again, because the study was so small, further studies are needed to establish a direct link between parasites and improvements in MS.

UPDATE ON ORAL BG-12

In April, Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced relapses in people with relapsingremitting MS in a phase III trial. The results of another study comparing BG-12 with glatiramer acetate against placebo are expected later this year.

AMERICAN ACADEMY OF NEUROLOGY MEETING

The American Academy of Neurologys annual meeting, held April 9-16 in Honolulu, offered promising results about oral MS medications, treatment of symptoms and better understanding of mechanisms involved in the disease. For example, the first reported results of a phase III trial of oral laquinimod suggested it could significantly reduce disease activity and disability progression, while appearing to be well-tolerated. For more news from the AAN conference, go to www.nationalMSsociety. org/AANews.
TOLL FREE NUMBER 1 800 344 4867 | 7

ADVOCACY

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.

policies, etc. define being disabled differently. You might have a life insurance policy that waives premiums (doesnt require you to make payments when you are disabled) and it might define disability as the inability to work or the loss of use or two hands or two feet or one hand and one foot. With the last 3 definitions of being disabled you could actually be fully employed but disabled by the loss of use of two hands test, etc. Oftentimes, disability is evaluated in terms of ADLs or activities of daily living. These are the basic tasks of everyday life and include (but are not limited to): bathing, dressing, grooming, oral care, toileting, transferring, walking, climbing stairs, eating, shopping, cooking, managing medications, using the telephone, housework, doing laundry, driving and managing finances. So, the important question is really what is the standard or context in which you are to be evaluated for disability. It means you should always check the applicable law, contract, regulation, rule or policy to determine exactly what standard applies and never assume you know. Although you may be working part or full time, you should know whether you might qualify as disabled in certain circumstances but not others. Just because you are denied SSI or Social Security disability benefits doesnt mean that you might not be entitled to waive insurance payments since you may disabled under the terms of the policy. You should know the disability test for any of these that might apply to you:

What does disabled mean? What determines whether I am disabled?

This is not a simple question. The term disabled has many different meanings depending on the circumstances. People often confuse having a medical diagnosis or a disease with being disabled. In general, it depends on the situation or context whether one is determined to be disabled. For example, if you are claiming to be disabled from work, you may have short and long term disability insurance coverage. When you first apply, the standard for disability will most likely be whether you can perform the last job you were doing at work. However, after you have been on long term disability insurance benefits for 24 months, the policy may provide that you have to be disabled from all jobs for which you are qualified. The standard of being disabled for Social Security disability benefits and SSI is that you must be unable to perform any substantial gainful activity (i.e., any work). Other programs,
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ADVOCACY

a. early withdrawal of IRA, pension or profit sharing money without penalty b. waiver of payment of car loan or lease if available c. waiver of school loan payments d. waiver of payment of credit card balances if available e. waiver of payment of insurance premiums if available f. waiver of association or union membership dues if available g. waiver of group membership fees if available h. eligibility for senior citizen rates (most reduced senior fees or benefits also apply to people who are disabled)

i. waiver of residential mortgage payments if available etc. So, dont assume anything and check out all of the possibilities. If you are deemed disabled under the applicable definition, you are entitled to the benefit! Clinics are scheduled six times a year on the first Saturday of every even numbered month. Future clinics in 2011 will take place October 1st and December 3rd. Call ahead to schedule your session at (800) 344-4867, select option 1.

SAMS CLUB RAISES NEARLY $1.2 MILLION DOLLARS TO BENEFIT PEOPLE LIVING WITH MS.
After six short weeks of fundraising in over 600 clubs across the country, and at the conclusion of an intense MS-themed dodge ball tournament at their annual meeting, Sams Club presented a check to the Society for nearly $1.2 million. Making the most of grass roots fundraising techniques that included donation jars, caramel apple and hot chocolate sales, and MS bracelet and sneaker sales in club parking lots, Sams Club employees rallied together to make a significant financial contribution to the MS movement. On behalf of the National MS Society and people with MS everywherethank you Sams Club!

Sams Club Dodge Ball Tournament

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NEWLY DIAGNOSED REGIONAL NEWS

(continued from previous page)

Washington, says, You need a prescription for a regular exercise program just as much as you need one for medications to slow down your disease or control your symptoms. Moving Forward, a program for people newly SAVE THE DATE: You may need to ask your physician for that prescription and diagnosed; Saturdays September 24, 2011 and for a referral 8 Hours to a Lifetime of Relationship October 1, 2011, 10:00 a.m. to 12:30 p.m. at the to a physical therapist or a rehabilitation physician and you Satisfaction - the therapist about MS. As Dr. William W. Kitti Education Center, 419 S. Coral may need to educate According to past participants, this PTs are the best MS programs ever offered. Street, Kalkaska. Topics that will be Kraft points out, many is one oftrained in sports medicine or how presented to deal with In this program for couples affected by MS, by speakers include the medical aspect of MS, the aftereffects of accidents or stroke. Ask about their participants will learn problem solving techniques, physical activity and rehabilitation,experience with MS. Its appropriate to invite a PT to contact the emotional Societys with communication skills and much more. The aspects of MS and employment issues, alongProfessional Resource Center at HealthProf_info@nmss. org to learn more program will plenty of time to ask questions of the speakers and about MS. be held in Grand Rapids Saturday, September 17, 2011 with Doug Schwentor, interact with other attendees. Its also appropriate to develop an exercise program that ts your LMSW as facilitator. The Illinois researchers For more information call Michelle Honer,and appeals to you personally. For more information call lifestyle (800) 344-4867, option 1. (231) 421-3706 or (800) 344-4867, select studies on exercise, not formal physical therapy sessions. analyzed Mary, diagnosed in 1997 option 1. Register by September 22 at Gateway to Wellness - a six week series where nationalMSsociety.org/mig you will learn, FIND LIVING WITH MS WHERE TOalong with 12-15 participants, how to make informed choices about lifestyle, medical Speak Up: Training for In-District Legislator You can read or download PDFs of Society care, and exercise. You will practice setting Visit - a toll-free telephone conference to help you brochures at nationalMSsociety.org/brochures. realistic personal goals so that you can achieve arrange a meeting close to your home with Or call 1-800-344-4867 for print copies. For READ ALL ABOUT ITyouyour IN a balance of play, work, family and self-care state legislators. The training will help feel easy searching, brochures are divided into activities in your SOCIETY BROCHURES being eight categories:life. Information, Newly confident and well-informed about issues General voted on in the Michigan legislature that are Diagnosed, Employment Issues, Staying Midland important to people with MS. Training managing Whether youre recently diagnosed, oris available Well, Managing Specic Issues, Managing Six Monday Evening Sessions August friend at 10:30 a.m. and repeated August an old 6, 2011 of a symptom, the Society offers Major Changes, For Children & Teenagers and October 3 - November 14, 2011 9, 2011 at on a range of issues related to call brochures7:30 p.m. For more informationMS. Informacin en Espaol. You can also download (no class on October 31) Ruth brochures (517) 339-6002 or (800) TheseLinnemann,are reviewed by experts in a PDF catalog with brief descriptions of all the 6:00 p.m. to 8:00 p.m. 344-4867, select revised for the most August 3 MS and regularlyoption 1. Register by accurate publications the Society offers clients. at nationalMS society.org/mig information possible. Grand Rapids Six Wednesday Evening EXTRA! EXTRA! Sessions Some brochures updated in 2009 include Aquatics for People with MS Ten Saturdays, October 5 - November 9, 2011 Living with MS; Multiple Sclerosis and 9:00 One brochure regularly updated with breaking September 10, 2011 until November 12, 2011, 6:00 is Disease-Modifying Drugs. The online newsp.m. to 8:00 p.m. Your Emotions; Research Directions in a.m. to 10:40 a.m. Sessions are held at the Grand version (nationalMSsociety.org/DMD) MS; Win-Win Approach to Reasonableare Traverse County Civic Center Pool. Sessions If you are interested, you may request an includes theby contactinginformation possible on Accommodations;instructor leads therapeutic free. The volunteer Food for Thought: MS and application most recent Christy Bomba at the disease-modifying drugs Avonex, Betaseron, Nutrition; A Guide for Caregivers; Solving exercises that do not require swimming ability. (989) 249-1184 or Christy.bomba@nmss.org Copaxone, Novantrone, Rebif and Tysabri. Cognitive Problems;is welcome to bring one Each person with MS and Depression and The booklet covers how they are taken, their Multiple For information call Roznumber of assistant. Sclerosis. In addition, a Nadeau, brochures are nowKirsten Ardery, (231)946-8606 or available in Spanish. Adems, benets, side effects, and how to pay for them. Check back regularly for new reports on DMDs. tenemos disponibles folletos en espaol. (231) 947-6098.

MICHIGAN CHAPTER PROGRAM CALENDAR

Courtesy of Moore, Ink.

4 | | JOIN THE MOVEMENT: nationalMSsociety.org 10 JOIN THE MOVEMENT: nationalMSsociety.org

REGIONAL NEWS

Live Your Best Life Independently will be offered in collaboration with St. Therese of Lisieux Health Ministry on Friday, September 30, 2011, in Shelby Township from 2:00 p.m. 5:00 p.m. Topics will include agency and community resources, fall prevention, home modifications, and more. A breakout session for caregivers is planned. Program details and registration info will be sent by e-mail and be available on our website in August. If you would like to receive a brochure when they are available, please leave your name, address, and phone number at (800) 344-4867, select option 2, ext. 232.

THE HEAT IS ON...

The hot, sunny days of summer are upon us! These warm days, however, can be uncomfortable ones for persons with MS. Research has proven heat and humidity often exacerbate common MS symptoms and cooling the body down provides temporary relief for people experiencing distress from these symptoms. The Chapter offers solutions for keeping the body temperature cooler through its Financial Assistance program. The most common portable cooling product is a vest that can be worn under or over clothing. The vest contains insulated pockets which hold small ice packs. Other products that might provide relief are neck and wrist wraps. For relief indoors, there is also financial assistance available for window air conditioning units. These units are standard window units that can cool a room approximately 150 square feet. The Chapter arranges the delivery of the units to the home but arrangements for installation have to be made independently. As a reminder to qualify for financial assistance from the Chapter, an application needs to be submitted along with a confirmation of MS diagnosis. Call (800) 344-4867, then select Option 1 to start the process.

MS ACHIEVEMENT CENTER
The MS Achievement Center is a great place to let your hair down and just have fun. Members enjoy bonding with the added benefit of steadily increasing wellness. With musical performances, yoga, crafts and potlucks theres really never a dull moment at the center. Participants also enjoy sessions on Tai Chi, therapeutic gardening and self-advocacy. Uniquely located right inside the Michigan Chapter headquarters, in Southfield the Achievement Center brings in people from all walks of life to learn skills, reduce stress, improve and maintain mobility and enhance their support system. Interested in volunteering or participating? There are TWO ways to sign up today, email rose.taylor@nmss.org or call (800) 3444867, select option 2, ext. 231 to request an application! Dont miss out on the fun! In case you were wondering, the Achievement Center is always accepting donations and looking for additional charismatic volunteers. WISH LIST - Acrylic Paint, Brushes, Computers, Markers, Glitter, Glue Sticks, Utensils, Paperware (cups, plates, napkins)

TOLL FREE NUMBER 1 800 344 4867

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MONEY MATTERS

TEN TIPS FOR HIRING HOME HELP

BY AL TAINSKY

3. Have him or her agree to give one months noticeand do the same. 4. Dont hire an alcoholic. (I expect my caregivers to be clean and sober in my home.) 5. Keep food separate. (Sometimes we eat together, sometimes we dont.) 6. The caregivers room should hold all the caregivers goods. (I have no room for storage and nothing should hinder my movement in my home.) 7. No sleepovers and no inviting friends over without permission. (I need night coverage and that is non-negotiable.)

Respect, honesty, compassion, compatibility and civility are core ingredients of a successful caregiving relationship. But a sense of humor and a soupon of soul dont hurt either. I was diagnosed with MS in 1987, but I trace the disease back to the 1950s and a summer so hot it melted the tar on Anderson Avenue in the Highbridge section of the Bronx. For nigh on 20 years, I have hired, fired and lived with caregivers. I call my current live-in caregiver Mr. Wizard. His technical and computer skills are remarkable. He has a sense of humor and he taught Sunday school for about 14 years. His younger sister is developmentally disabled and the love he feels for her shows a man of substance. Here are a few of my tips to finding your own Mr. Wizard. 1. Have applicants supply the names, addresses and phone numbers of three personal or work references. 2. Hire someone with a clean driving record.
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8. Keep your computer and printer for your personal use only. 9. If a caregiver steals, lies or cheats, make a plan for coverage before firing the miscreant, so youre not left on your own. 10. Dont surrender control of your life to anyone. Need help? Call a friend, call a relative, call the Society, call the closest Independent Living Center and if necessary call the police. Al Tainsky was a professional journalist and sometime writer of comedy for television when he was diagnosed with MS 24 years ago. He continued to live independently and to write articles for Momentum magazine, Real Living with MS, and other disability publications. He died of a heart attack in February shortly after completing this article. We will miss his smarts and his spirit.

Wondering how to afford a caregiver?

Call 1-800-344-4867 to talk to an MS Navigator. Also go to nationalMSsociety. org for the brochure, Hiring Help at Home.

NEWLY DIAGNOSED

(continued from previous page)

REGIONAL NEWS

Washington, says, You need a prescription for a M.D. Consortium of MS Centers Honors Robert Lisak,regular exercise program just as with Lifetime Achievement as much controlneed one for medications to slow Awardyou your symptoms. down your disease or

Wayne State School of Medicine to ask your physician for that prescription and You may need

for a Sclerosis care, teaching and mentoring as well as service to The Consortium of Multiplereferral to a physical therapist or a rehabilitation physician the scientific, clinical and patient organizations Centers has honored a and Statemay need to educate the therapist about MS. As Dr. Wayne you Kraft points out, beginning at trained in sports medicine or 45 University professor and department many PTs are the National Institutes of Health how years ago, said Dr. Lisak, the consortiums research chair for his lifetime ofto deal with the aftereffects of accidents or stroke. Ask about their commitment experience with director and newly to invite a PT to contact the and research to combat the condition. MS. Its appropriateelected secretary. But it also Societys Professional Resource Center at HealthProf_info@nmss. reflects the support of my family and the support The consortium presented to learn more about MS. Robert org and collaboration from colleagues at the NIH, the Lisak, M.D., Chair of the Department University of Pennsylvania, and for the last 24 years, of Neurology, with its Lifetime Achievement Award Its also appropriate to developUniversity. program that ts your Wayne State an exercise last week during its annual meeting inlifestyle and appeals to you personally. The Illinois researchers Montreal. Dr. Lisak has served in leadership therapy and Mary, diagnosed who cares. analyzed studies on exercise, not formal physical positions sessions. Bob Lisak is someonein 1997 He cares about on committees of the American Academy of his institution, serving as Parker Webber Chair in Neurology, the American Neurological Association, LIVING WITH MS professor of Neurology and Neurology, Chair and WHERE TO FIND of Neuroimmunology, the the International Society professor of Immunology and Microbiology at National Multiple Sclerosis Society, the Guillain You can read or download PDFs of Society Barre Wayne State University, Neurologist-in-Chief of Syndrome/CIDP Foundation and the Myasthenia brochures at nationalMSsociety.org/brochures. Detroit Medical Center and Chief of Neurology at Gravis 1-800-344-4867 for He also has been Or callFoundation of America. print copies. For Harper University Hospital, said Corey Ford, M.D., editor of the Journal of the Neurological Sciences, easy searching, brochures are divided into the Ph.D., professor of Neurology and associate dean for journal of the World Federation of Neurology. eight categories: General Information, Newly Research at the University of New Mexico School of He cares about his patients and has always Medicine youre recently diagnosed, or managing Diagnosed, Employment Issues, Stayingbeen a Whether and former president of the consortium. Well, Managing Specicand caring for those with clinician, attending clinics Issues, Managing He old friend hisa symptom, the published over cares about of research and has Society offers an Major Changes, For Childrensaid. He cares and neurological illnesses, Dr. Ford & Teenagers about 200 peer-reviewed scholarly articles, and to been brochures on a range of issues relatedhasMS. Informacin entrainees, many of whom he has his students and Espaol. You can also download funded by the National Institutes by experts in These brochures are reviewed of Health, the a PDF and mentored,brief descriptions of all the taught catalog with furthering their careers and National Multiple revised for the the Muscular MS and regularlySclerosis Society, most accurate publications the faculty. offers clients. those of his junior Society Dystrophy Association, information possible. the Myasthenia Gravis Foundation and many others. Bob is clearly a person EXTRA! EXTRA! who says yes much Some brochures updated in 2009 include more often than no. He is truly a role model The Consortium of Multiple Sclerosis Centers is a One brochure regularly updated with breaking Living with MS; Multiple Sclerosis and for the clinician-scientist, but it is unlikely his professional organization of MS health care providers news is Disease-Modifying Drugs. The online Your Emotions; Research Directions in accomplishments and contributions could be and researchers in North America. It seeks to increase version (nationalMSsociety.org/DMD) copied. MS; Win-Win Approach to Reasonable the ability of those professionals to impact the care includeshas been a recent information possible on Accommodations; Food for Thought: MS and Dr. Lisak the most member of the Michigan of MS sufferers and improve their quality of life. The the disease-modifying drugs Avonex, Betaseron, Chapters Board of trustees since 1990. He also serves Nutrition; also is an international clearinghouse for consortium A Guide for Caregivers; Solving Copaxone, Novantrone, Rebif the Clinical Advisory on the Executive Committee and and Tysabri. Cognitive Problems; and Depression and research results, the latest treatments, clinical trials The booklet covers how they are taken, their Committee. Multiple Sclerosis. In addition, a number of and patient education programs. brochures are now available in Spanish. Adems, benets, side effects, and how to pay for them. We congratulate Dr. Lisak on this great and very This a great honor for folletos en espaol. Check back regularly for new reports on DMDs. tenemos disponiblesme, recognizing my well deserved honor! contributions and leadership in research, clinical

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FUNDRAISING

SAVE THE DATE

Tuesday, August 30th 11:30 a.m. 1:30 p.m. Westin Book Cadillac Detroit

Yvette Bing, First Lady of Detroit Honorary Chairperson

Women on the Move is a leadership initiative to unite and empower women to help create a world free of multiple sclerosis (MS), a disease that greatly impacts women. Why WomenWhy Michigan? Two-thirds of people diagnosed with MS are women The affects are even greater when you consider that women are often care providers for others living with MS Michigan has one of the highest incidence rates of multiple sclerosis in the country, with over 18,000 people living with the disease in Michigan Keynote Speaker: Wendy Booker Wendy Bookers energy seems endless it takes more than mountaineering, marathons, mushing and multiple sclerosis to tame her passion for adventure. Wendy is the first
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person with MS to successfully climb 6 of the Seven Summits, and recently became the first person with MS to reach the North Pole the top of the world accompanied by her intrepid team of sled dogs. She is a mountaineer, an adventurer, an explorer and shes not done yet. Next stop: the bottom of the worldthe South Pole! Wendys passion, strength and tenacity are garnering attention from national and international press, and her career has evolved from interior design to motivational speaking around the globe. She will motivate and encourage anyone facing a challenge in life to push through and climb on the view from the top is breathtaking! TICKETS: $100 each or $1,000 per table of 10 guests - Each ticket includes inspirational
program, lunch, raffle and valet parking. To purchase tickets, call Patti Radzik at (248) 936-0342 or email patti.radzik@nmss.org. Tickets are also available for purchase online at: nationalMSsociety.org/mig (click Women on the Move on homepage)

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The National Multiple Sclerosis Society, Michigan Chapter is proud to present the MS Leadership Class of 2011. A new program launched this year, the Leadership Class honors successful business professionals in Southeast Michigan for their leadership in the community and in the workplace. It also provides a platform for future leaders of the National MS Society to be developed and to be actively engaged in the mission to create a world free of MS. Nominated by their peers, the members of the Leadership Class are participating in a special gifts campaign now through September to each raise a minimum of $1,000 for MS research, programs and services. The campaign kicked off in July at a reception sponsored by Blue Cross Blue Shield of Michigan and will conclude on September 27th at an awards reception hosted by Anthony J. Filippis, President & CEO of Wright & Filippis and the honorary chair of the MS Leadership Class. In August, members of the Leadership Class will tour the Multiple Sclerosis Treatment and Clinical Research Center at Wayne State University in Detroit and see firsthand the efforts that are underway by researchers to find a cure. To make a donation to members of the Leadership Class, visit nationalMSsociety.org/ mig (click on MS Leadership Class on home page) or call (248) 936-0342.

The MS Leadership Class of 2011*

*as of publication date, 8/1/11

Nicholas Baise, General Counsel Alken Ziegler Denise Barron, Senior Account Executive Kelly Services, Inc. Tim Belanger, Vice President AIM Construction Dana DeFlorio, Director, Medical Management Blue Care Network Forrest Dillon, Member Bodman PLC Kate Cahill Durak, Major Gifts Consultant St. John Providence Health System Foundations Jeffrey Eckles, Partner Plante & Moran LLP Steven Englehart, Vice President & Team Leader Fifth Third Bank Jane Kogan, Associate Warner Norcross & Judd LLP Nevena Mirkovic, Strategic Account Manager EMD Serono Kim Oblak, Vice President-Retail Banking Best Bank William Ogden, Managing Partner Kohl, Harris, Nolan, McCarthy, Turkelson & Ogden, P.C. Lauren Parrott, TV Show Host/Production Assistant WMTV5 Cheryl Rothe, Account Executive Crains Detroit Business Maria Szymanski, Senior Vice President & Chief Development Officer Trinity Health
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FUNDRAISING

the

da Vinci AwArds

Celebrating Innovative Assistive Technology from Around the Globe

The 2011 International da Vinci Awards are fast approaching. Amazing nominations are being submitted and we want you to join us on September 22nd at The Henry Ford in Dearborn, Michigan to watch as the winners are announced for the first time on stage. This year we will be honoring our 2011 Spirit of da Vinci Award winner Cody Unser, the founder of the Cody Unser First Step Foundation and the daughter of auto racing legend Al Unser, Jr. Paralyzed at age 12 from an autoimmune disorder called Transverse Myelitis, Cody started the Foundation to raise awareness for her condition and provide support to families and individuals living with this disorder. Through her foundation she also started a quality of life program called Codys Great Scuba Adventures where she introduces the freedom of scuba diving to people with disabilities by putting them in the open ocean where they get their final certification. The da Vinci Awards celebrate people who triumph over disabilities and those who have developed new technologies and innovations that enhance mobility and enable people to function at their fullest. There will be opportunities to network with many organizations about the products and people who embody what the da Vinci Awards are all about. Do not miss this amazing opportunity to help raise funds and awareness for the National Multiple Sclerosis Society, Michigan Chapter. Tickets for this gala event are available at: daVinciAwards.org; by email: daVinciAwards@nmss.org; or by calling (248) 936-0350.

Walk MS is a time and place for you, your family and friends to come together and proclaim, for all to hear: We are the movement to 2011 end MS! We would like to thank the more than 7,500 people who have already participated at a Walk MS event this year. Because of their hard work and dedication we have raised over $938,000 - taking us 78% of the way to
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reaching our $1.2 million goal. With three Walk MS events remaining this year there is still time for you to sign up and be an important part of the MS Movement. Please join us at one of these walk sites: Grand Haven September 10th Milford September 10th West Branch September 17th Register today at walkMSmi.org

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Are you someone living with MS and looking for a fun way to participate in Bike MS? The NOW and Novartis for MS professional womens Ride 2011 cycling team is looking for people with MS to ride on a tandem bike at the Fall Breakaway Bike MS Ride on Saturday, September 17th. If you are taking the Novartis oral therapy Gilenya and are interested in learning more, please contact Tammy Willis by email at Tammy.Willis@nmss.org or calling (517) 646-0807.

GOLF ALL SUMMER LONG!

Golf MS captains are able to create a team of four or more golfers, pick a course, pick a date suitable for their entire team, and play back-to-back rounds of golf. Currently, there are 39 partner courses around the state donating greens fees to Golf MS captains and their teams. There remain over 1,000 donated rounds of golf available through September 30th. For a complete list of golf courses and to register a team, visit golfMSmi.org, email golf@nmss.org or phone (248) 936-0350. Golf MS is sponsored by: FOX 2 Detroit, Hour Detroit, and TaylorMade Golf. What is Making Strides Against Multiple Sclerosis (MSAMS)? MSAMS is a group of dedicated runners whose single cause is to create a world free of MS through awareness and fundraising. The funds you raise will be honoring research, treatments, education, and supporting clients and family members throughout Michigan. Most of all, you will be moving us closer to a world free of MS! How Do I Get Started? First thing to do is to select a running event that is ideal and convenient for you. You can join the run of your choice to raise funds for MS and join the movement for the more than 18,000 people living with MS in Michigan. Continued on page 18
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Team Raymond James, Bike MS 2011

Our goal for Bike MS this year is to raise $800,000 to support MS research and fund programs and services for everyone living in Michigan with MS. We are excited to share that with your help we are over half the way to reaching our fund raising goal! There is still time to register for our two remaining rides this year: Fall Breakaway September 17th Bavarian Breakaway September 24 & 25th Register today at bikeMSmi.org

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Continued from page 17 We are gearing up for the Detroit Free Press Marathon on October 16, 2011. To register please visit DetroitFreePressMarathon.com and be sure to pick the National MS Society as your charity of choice! For questions, please contact Bris Roberts at (248) 936-0365 or via email bris.roberts@nmss.org.

COMMUNITY EVENTS
Please consider supporting these upcoming volunteer-coordinated fundraising events that will benefit the National MS Society, Michigan Chapter:

1st Annual Gilbert and Matt Weber Golf Classic

August 27, 2011 - Devils Ridge Golf Club 3700 Metamora Road Oxford, MI

GO GREEN & HELP SAVE THOUSANDS!

Did you know that with your help the Michigan Chapter can save thousands of dollars annually? Our environment would also benefit by the huge reduction of paper usage. How can you help? Sign up now to receive MS Connection and other mailings electronically. Try it. If you change your mind, we can always put you back on the list to receive printed copies. To sign up, visit our website at www.nationalmssociety.org/ mig. Complete the short form, and thats it!

For more information contact Laura Weber at: (248) 840-1297 or lauram@hersheyinsurance. com

14th Annual MS Motorcycle Run

August 27, 2011 - Bow Tie 8388 Alpine Avenue NW Sparta, MI Ride for a world free of MS. There will be raffle prizes and trophies for the first and second place winners! For more information, contact Kim at (616) 550-1777.

L. Barge Open 2011

September 17, 2011 - Fieldstone Golf Club 1984 Taylor Road Auburn Hills, MI Join us for an 18-hole golf scramble, putting contest, food and prizes. For more information contact L. Barge & Associates, Inc. at (248) 5823430 or via email at Finance@LBarge.com.

The National MS Society Michigan Chapter is on Facebook! Look for:

National MS Society, Michigan Chapter Bike MS Michigan Chapter Walk MS Michigan Chapter Golf MS da Vinci Awards MS Awareness Week
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2011 Hacker Scramble

October 8, 2011 - Brentwood Golf Course 2450 Havenwood Dr White Lake, MI Enjoy music, food, prizes and golfing at this annual event please save the date! For more information please contact Scott or Ruth Crichton at (248) 684-0020.

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Win a 2012 Ford Mustang GT and help people with MS!

Dont miss your chance to win a 2012 Mustang GT Manual Convertible, courtesy of The Ford Motor Company! Raffle tickets are on sale now through August 20th when the prize drawing will take place at the Woodward Dream Cruise and a winner is announced. (Winner need not be present to win. Winner is responsible for 25% Federal Income Tax, license and Title fees.) Raffle License #: R12418. Tickets are $10 each or 3 for $20 and are available for purchase online at nationalMSsociety.org/mig or by calling (248) 351-2190 ext. 212.

PUSHING FOR A CURE FOR MS!

Champagne & Marx Excavating is one of the top excavating companies in Mid-Michigan and is Pushing for a Cure to end MS. Employees of the company came up with the idea to have their new gravel train wrapped to increase awareness of MS and the National MS Society. The Kenworth Gravel Hauler was unveiled at a recent event hosted by the company to thank donors to the National MS Society, Michigan Chapter, and the result is just one more demonstration of the companys commitment to a world free of MS. Champagne & Marx also has teams that participate annually in the Walk MS and Bike MS events and have set a goal to raise more than $25,000 this year!

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21311 Civic Center Drive Southfield, MI 48076-3911

Mailing Label Changes

Please check the appropriate box below, correct the label then return to National MS Society, MI Chapter q Name change or misspelled q Address change q Remove from mailing list q Received more than one copy q Please send me my MS Connection via e-mail. My e-mail address is: ____________________________

EQUIPMENT CLASSIFIEDS:
Future ads for medical equipment will be placed on our website instead of MS Connection. If you are interested in placing a free ad to sell your medical equipment, send a detailed description of the item, along with the price and your phone number or other contact information. Send the ads to: MS Connection, National MS Society Michigan Chapter, 21311 Civic Center Dr, Southfield, MI 48076 or e-mail melissa.ryan@nmss.org.

Host Your Own Fundraising Event!

From carwashes and lacrosse tournaments to bake sales and martial arts tournaments, people put an impressive amount of time, resources and imagination into fundraising to create a world free of MS. By coordinating your groups very own event, you help bring research and programs to the more than 18,000 people living with MS in Michigan. Join the Movement today! For more information, please visit our website at nationalMSsociety.org/mig or contact us at (248) 351-2190, ext. 233.

If You or Someone You Know Has MS

Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at nationalMSsociety.org or 1.800.344.4867, option 1.