summer 2013 western Pennsylvania chapter
MS Connection Newsletter MuckFest MS,
One mucky afternoon
Learn about the success of this event on page 22
INSIDE 06 THIS ISSUE
Living with ms: thirty-six years of ms
cooling vest and air conditioner program
advocacy: be your own best advocate
Employment: disclosure in the workplace
MS connection: summer 2013
Letter from the president
NMSS STRATEGIC RESPONSE TO MS 4 “ WE ARE ACTIVISTS”
Western Pennsylvania Chapter staff and volunteers pictured with Allegheny County Executive Rich Fitzgerald
Connect with us online: Western Pennsylvania Chapter nationalMSsociety.org/PAX firstname.lastname@example.org Like us: /MSWesternPA Follow us: @MSWesternPA Watch us: user/NationalMSSociety On the Cover: 2013 MuckFest MS
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As part of the National MS Society’s annual Public Policy Conference, more than 300 MS Activists went to Washington, D. C., on March 6th to urge Congress to preserve funding for MS research and drug approval. MS Activists, including 3 Chapter Staff and 3 Chapter Advocacy Volunteers, were briefed on the importance for National Institutes of Health, ( NIH ), the Congressionally Directed Medical Research Programs, ( CDMRP ), and the Food and Drug Administration, ( FDA ). The NIH has directed about $275 million to MS Research in the past five federal funding cycles and the CDMRP has supported more than $20 million of MS Research. What you might not know is that 2 local MS Activists, with connections to the late Congressman John P. Murtha, actually met with the Congressman in 2009, to urge him to allocate Department of Defense dollars to fund the CDMRP. At that time Congressman Murtha was the Chair of the Defense Department Appropriations Committee and due to the passionate advocacy efforts of, Jerry Hogenmiller and Angela Gorzlesky, he voted to fund and MS Research Program through the CDMRP. We call those local activists with connections to key legislators, “grass top” volunteers. You, too, can become a grass top MS Activist, by calling the Chapter and sharing your connections with your local legislators with the Chapter’s Advocacy staff. See page #14, for another example of grass top activists at work in the Erie area. To sign up to become and MS Activist, go to www.msactivepa.org. We all can make a difference together,
~ Anne Mageras
The gathering Table By Ronda Giangreco
On July 26th, 2008, I was a 53-year-oldwoman who considered herself very fortunate. I was just back from my latest adventure at a cooking school in Italy. My husband, Michael, and I had spent the day wine tasting in Napa with friends. Life was good. One day later I was a disabled woman. Learning that your wife has been diagnosed with sudden onset multiple sclerosis would be difficult for any man to accept, but for my husband it was a particularly cruel twist of fate. The disease had entered Michael’s life when he was just a child, taking away his mother when he was 16. Now it was back for his wife. Worried that I might not be able to walk for much longer, I asked myself the question, “Then to where should I walk now?” continued on page 4
National Multiple Sclerosis Society Western Pennsylvania Chapter 1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX Chairman: Douglas Miner, Esq. Chapter President: Anne Mageras Editor: Hannah Spear Design: Jennifer Skinner © 2013 National Multiple Sclerosis Society, Western Pennsylvania Chapter
Information provided by the Society is based uponprofessional 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 Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
4 The Gathering Table continued from page 3 My answer: to the kitchen! An avowed foodie, I always loved to cook. My kitchen is my sanctuary, where I can dispense with aggravations while surrounded by the aroma of bubbling soups and the comforting familiarity of my pots and pans. What better place to face the fear gnawing at my gut? It might not have been a conventional treatment plan, but why not attempt to triumph over MS with steaming plates of pasta? However, when I made the audacious vow to my husband that I would host a dinner party every Sunday night for an entire year as a means of warding off this disease, he thought I had lost my mind. One would have to be a bit certifiable to think about cooking 52 dinners while living with a neurological condition, but a discussion about parties would be immensely more entertaining than one about motorized wheelchairs. I would stare down MS with spatula in hand. We began by inviting every friend we knew. The first six who accepted the invitation would join us at our home in Sonoma, Calif., for an evening of laughter, good food and plenty of great wine. Throughout the year, we added people we had met at events, through friends, and even a woman I had struck up a conversation with in a grocery store aisle. Eventually, more than 130 people received our e-mail invitation each week. As we sat around our big, square dining table — referred to in the furniture industry as a “gathering table” — we heard stories that made us weak with laughter and others that brought tears to our eyes. We were given fresh insights into the
MS connection: summer 2013
people we thought we knew well, while we also formed dozens of new friendships.
I learned from the stories of others that the challenges we all face help form the core of who we are, giving us an insight into the strength within. There was the sweet, older neighbor who joined us for dinner one night and informed us that he had been Bozo the Clown in his younger days. The entire table was awestruck when he burst into character. Then we discovered one of our friends had helped make The Allman Brothers’ rock band famous. Another had been on a plane with the terrorists a week before 9/11. We had staunch conservatives sitting across from diehard liberals. We hosted Christian fundamentalists at the same table as a lesbian couple. And everyone learned there is more uniting than separating us. By the time week 52 arrived, I had made gallons of marinara sauce, scores of ravioli and mountains of gelato. In doing so, I was able to conquer my fear of the future. I learned from the stories of others that the challenges we all face help form the core of who we are, giving us an insight into the strength within. The icing on the cake … I was still on my feet. MS didn’t win. I did.
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I could never stomach my story being touted as yet another example of how merely thinking positively can change the course of your life, though. Anyone who has spent time in a hospital bed looking up at grim faces knows that there are some hurdles you cannot clear just by employing a perky disposition. The last thing I want to do is add to anyone’s burden by suggesting otherwise. My tale is not about bucking up. Simply put, it is a story about learning that I had more grit and resolve than I had imagined. I found that good friends are a powerful therapy, and I discovered that even though fate may shove you in a direction you don’t want to go, you can still find a means of traveling the road on your terms. n Ronda Giangreco has written a book about her year-long adventure called The Gathering Table — Defying Multiple Sclerosis with a Year of Pasta, Wine & Friends available at www.amazon.com. Sign up for her free monthly newsletter at www.thegatheringtable.net.
National Multiple Sclerosis Society’s United Way workplace giving designation code for Allegheny County only is: 898 Or call your local United Way office to check on the code number for your county.
Hear Ronda’s Story live Join the Western Pennsylvania Chapter at the 2013 Women on the Move Luncheon: Wednesday, September 25, 2013 10:30 am to 1:30 pm LeMont, Mt. Washington Register Online at nationalMSsociety.org/PAX or call 412.261.6347 The MS Women on the Move Luncheon is a unique fundraising experience that creates an inspiring, motivational and empowering environment. The event creates a social environment for like-minded people to gather, learn about multiple sclerosis, and raise funds to help end MS. While the event was founded by women who wanted to come together in bringing us closer to a world free of MS, we also invite and encourage men to attend and participate. The MS Women on the Move Luncheon creates an opportunity to empower each other to create a better future for those living with MS. n
MS connection: summer 2013
Living with ms
though air had been pumped into it. Had I morphed into an immense beach ball?
By Gail Isaacson
The following day I was back to normal. A few weeks later, I was an airhead again, but now I was a beach ball with a limp. Was I crazy? I consulted a shrink to try to make sense of the melee my life had become. But he thought my symptoms were real and sent me to the man to whom I owe my ability to have lived a relatively normal life with MS — my neurologist, Dr. Neil Allen.
thirty-six Years of MS I have had multiple sclerosis for 36 years. I was
“I have officially had MS longer than I have not had MS.”
diagnosed in 1976 when I was 26 years old. That means I have officially had MS longer than I have not had MS. Whew. If you asked me who I was before the world came to an end, I’d probably say active, talented, theatrical — the same words I’d use to describe myself now. You see, the world did not come to an end for me. Even though no one could assure me it wouldn’t. The title “drama queen” was invented for me. My plan was to spend my life singing and dancing on a stage. I was so stagestruck almost any stage would do. I was working toward this goal when, one summer day in 1976, I had trouble balancing on my toes and I couldn’t make my fingers sign my name. Oh yes, and my head had a spacy feeling, as
After a spinal tap (there were no MRIs back then), Dr. Allen diagnosed me with multiple sclerosis, words that, after 35 years as a professional writer, I still cannot spell. In 1976 there were no MS support groups to welcome me to the club, no injectable wonder drugs, no categories like relapsing-remitting or secondary-progressive. Dr. Allen treated me with prednisone*. I loved it because it beat back the madman. I hated it because it made my face look like Humpty Dumpty. And make no mistake; I have always been exceedingly vain. I came by this trait honestly from my beautiful mother, who had made it her life’s work to see her only child betrothed to a Jewish doctor or lawyer. Now that MS was in the first line of my bio, what was my life like? I had bad days, when I resembled an extra from Monty Python’s “Ministry of Silly Walks.” Other days, I was so dizzy I did a sloppy tango with walls and refrigerator
nationalmssociety.org | 1-800-344-4867 doors. But then I had good days, days so good that it seemed like I didn’t have MS at all.
“I had bad days, when I resembled an extra from Monty Python’s ‘Ministry of Silly Walks.’” The best advice, and what has kept me going for 36 years, was given to me by Dr. Allen. “Get on with your life. Don’t let MS define who you are. MS is unpredictable and affects everyone differently, so you must learn to know your MS and be your own doctor.” This last statement was incredibly ahead of its time, and remains so today. I took his advice and carried on. I hung up my tap shoes for good and focused on another talent, writing. I procured a job at an advertising agency and moved downtown so I could walk, or sometimes limp, to work. From my vantage point of 60 years, my life has not been very different from anyone else’s. I have continually tried to challenge myself, physically as well as mentally. It hasn’t always been easy, but MS has not ruined my life. I inject a disease-modifying drug three times a
week, which has taken away many of the surprises. I still experience fatigue and a handful of other manageable demons, but through a strict dietary regime and endeavoring to write and exercise most days, mine is a fine life. Oh and did I mention my wonderful husband of 17 years? Heart disease is part of his life, just as MS plays a role in mine. We hold hands on life’s roller coaster, take long walks with our baby, a yellow Labrador Retriever, and hold on to the wonder of it all, trying not to fall down. What more can anyone ask for? n Gail Isaacson can be heard reading her essays on Chicago Public Radio, Iowa Public Radio and Radio Harbor Country in southwest Michigan. Her essays have been featured in the Chicago Tribune and many literary magazines. Visit her website at www.gailisaacson.com. * Editor’s Note: prednisone is often used to treat relapses in MS today.
FAMILY NIGHT AT THE BALL PARK! Friday, July 26, 7:05 PM Jerry Uht Park, 110 E. 10th St., Erie, PA 16501 Program Cost: Person with MS: Free/Adults: $15.00 per person/Kids: $10.00 per child (14 & under) Price includes reserved seating and food ticket for the buffet dinner! For more information call 1 800.344.4867 or to register online: nationalMSsociety.org/ PAX
8 Living with ms
Heat and cognition By Julie Stachowiak, PhD
Results from a new study show a link between heat and impaired cognitive function in people with multiple sclerosis. I bet that many, if not most, of you reading this will think, “This is news? I could have told anyone that my thinking (along with other things) is impaired in hot weather.” However, this study actually is a big deal, because it is the first time that such a link has been formally demonstrated.
MS connection: summer 2013
This is important information for many reasons. The study scientists pointed out that this type of seasonality could affect clinical trial results. For instance, if people enrolled in a trial in the summer and were followed for six months through fall and into the winter, a drug to treat cognitive dysfunction (or many other MS symptoms, really) could seem like it was working, when in fact, some of the improvement might simply be due to temperatures dropping.
What you can do That is interesting from a scientific perspective, but what does this information about heat and cognition mean for people with MS? There are no treatments that are effective
The Numbers Researchers from the Kessler Foundation, with funding from the National MS Society and the National Institutes of Health, compared cognitive functioning under different temperature conditions in 40 people with MS and 40 people without MS. The data showed that cognitive functioning in people with MS was more affected by hot weather than cognitive functioning in people without MS. On cognitive testing, people with MS performed significantly better on cooler days than they did on warmer days, while people without MS performed the same regardless of the outside temperature. For more information on the study, which was published in Neurology, visit www.nationalMSsociety.org/heatcognition.
for cognitive dysfunction, but there are some things we might be able to do to help ourselves. Many of us have strategies we use to stay cool and avoid overheating. Here are a few additional tips you may want to consider:
Ask for accommodations at work You may want to explain to your employer that the hot weather makes things a little harder for you and that you want to do a good job, but need a little help. Be specific in what you want, such as asking for a fan or cooler working area, and why you need it. You could also ask for people to communicate with you in writing, so that you wouldn’t miss anything that might be mentioned in passing – document requests in email or using a shared online calendar might help. For more information about accommodations at work, visit www. nationalMSsociety.org/accommodations or call an MS Navigator® at 1-800-344-4867.
Fix your world
Cool liquids can help beat the heat
nationalmssociety.org | 1-800-344-4867
I think many of us are our own enemy when it comes to cognitive dysfunction. We try to multitask while living in a world with constant noise and clutter, which leads to stress and frustration when we can’t get everything done or we forget things. Try this: Clean up your house. Turn off the television. Focus on one thing at a time. When you talk on the phone, just concentrate on the conversation – don’t simultaneously fix dinner, surf the Internet and keep an eye on
your toddler. You may think you have no time for only doing one thing at a time – trust me, you will get more done and it will be done better if you don’t try to do it all at once.
Be patient Treat yourself kindly. Yes, I get mad at my brain for slowing down in the summer and I have gotten frustrated that my work doesn’t get done and I forget things and on top of it, I feel lousy for a good chunk of the year. Guess what? That hasn’t helped me one bit. In fact, it makes everything worse when I let myself get flustered. When I feel these emotions coming on, I try to slow down my reactions and figure out how to make my immediate situation better. Sometimes, dropping everything and having a big cold glass of iced tea is enough to derail the negativity. Other times, it may take a little more effort, like taking a cool shower or making a phone call to a friend. Diagnosed with MS in 2004, Julie Stachowiak is the author of The Multiple Sclerosis Manifesto and www. ms.about.com. Originally published at blog. nationalMSsociety.org.
For more tips on how to beat the heat, visit www.nationalMSsociety.org/beattheheat.
10 Living with ms
Cooling Vest and Air Conditioner Program
If the heat aggravates your MS symptoms, then a cooling product may be the way to go!
Now that spring has finally sprung and we are quickly diving into the warmer months of the year, the Western PA Chapter hears from a lot of people regarding the need for some cooling products due to his or her heat sensitivity issues. The heat of the summer months does affect the majority of people living with MS and many MS symptoms fluctuate depending on the level of heat sensitivity individualâ€™s face. The key then is to try to stay as cool as possible while still enjoying fun summer activities outdoors. Weâ€™re here to help! The Chapter offers a grant for the funding of cooling products, such as cooling vests and air conditioners. After the application process with a Chapter representative, the Cooling Vest Program offers different types of cooling technology to best suit your cooling needs. Whether you think a full cooling vest meet or exceed your needs, we will work with you to find the cooling accessory that fits best. Accessories include scarves, hats, bandanas, wrist wraps, bra coolers, and more.
MS connection: summer 2013 Additionally, after the application process with a Chapter representative, the Air Conditioner Program offers assistance and guidance when choosing which air conditioner would best fit your home and your cooling needs. We assist with window units, portable units, and central units and we can even assist with repairs including vehicle cooling system repairs! Please note, the Chapter can only assist with one unit per person. For more information, please contact the Brian Sibenac at 1-800-344-4867. n
an Evening about MS Therapies Wednesday, August 28, 2013 5:30 PM - 8:00 PM Holiday Inn, 7195 Eastwood Road Beaver Falls, PA 15010 Presented by: Thomas Scott, MD This unique opportunity will allow you to have a frank discussion with an MS Specialist regarding MS Therapies. Learn about the questions you should ask and answers you should know when deciding which medication is right for you. Understand the importance of being on an MS therapy and why compliance is important. This program is free and open to Persons with MS, Caregivers, Family/Friends. This program developed in collaboration with Western PA Chapter of the MS Society and the West Penn Allegheny MS Treatment Center. Pre-Registration Required, 412.261.6347 or nationalMSsociety.org/PAX
nationalmssociety.org | 1-800-344-4867
MS connection: summer 2013 come naturally. I, for one, have always been a bit reticent to ask others to do things for me. The National MS Society, recognizing that many people are in the same boat, offers helpful advice at www.nationalMSsociety.org/selfadvocacy for learning to take on the role of self-advocate in the key realms of our lives, from our workplaces and schools to our families and communities.
Be your own Best advocate By Jennifer LaRue Huget
Your whole life changes when you learn you have multiple sclerosis; mine sure did. In my case, those changes weren’t largely physical. Rather, my diagnosis caused me to reconsider my place in the world and the way I interact with other people and institutions. Like many others with MS, the process of learning to live with my condition opened my eyes to the necessity for me to become an advocate — for myself and, by extension, for others with MS. I suppose I was accustomed to the concept of advocacy before I was diagnosed. As a mother I advocated for my kids, seeking the best healthcare, education opportunities and play dates possible. But those of us with MS also have to learn to advocate for ourselves. We need to assert our own needs and effectively communicate them to our doctors, employers, insurers, even our families and friends. But self-advocacy doesn’t necessarily
A recent legal settlement highlights the importance of self-advocacy for people with MS who are navigating the healthcare system. In the case of Jimmo vs. Sebelius (in which the Society was a plaintiff), a federal judge on January 24 approved a settlement that reaffirmed patients’ access to Medicare benefits, regardless of whether their condition improves as a result of the treatment provided.
Self-advocacy doesn’t always come naturally. A bit of background: For decades, Medicare beneficiaries, especially those with long-term or degenerating conditions and those who needed rehabilitation services, have been denied care on the grounds that those services didn’t result in improvements to their condition. For patients whose conditions remained stable or chronic, rehabilitative services were often deemed to be for “maintenance only,” and thus weren’t covered. The new settlement reinforces the original intent of the law — that it’s not legal for Medicare to deny coverage on that basis. The law requires the Centers for Medicare & Medicaid Services
nationalmssociety.org | 1-800-344-4867 (CMS) to revise its Medicare Benefit Policy Manual and numerous other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled maintenance services in home health, nursing home and outpatient settings. Here’s where self-advocacy kicks in. The new policy is already in force. People with MS don’t have to wait until the CMS revises its documents to gain coverage for the care they need. People who are denied Medicare for skilled maintenance nursing or therapy because they are “not improving” can appeal those decisions right away. That’s a very important form of self-advocacy. To that end, another of the plaintiffs in the settlement, the Center for Medicare Advocacy, offers self-help materials at www.medicare advocacy.org/take-action/self-help-packets-formedicare-appeals to help people understand coverage rules and learn how to contest Medicare denials for outpatient, home health or skilled nursing facility care. Of course, it’s important to bear in mind that the settlement doesn’t guarantee coverage; providers and people seeking Medicare coverage for treatments still have to demonstrate that the care is medically reasonable and necessary. Still, eliminating the standard that required patients to show improvement in their condition, not just maintenance, is a big step in the right direction — and one that we should all be aware of as we navigate the healthcare system. The term “self-advocacy” can sound kind of daunting; when I first heard it, I thought it meant going to Washington, D.C., to lobby for funds for MS research. I have since learned that,
13 yes, lobbying is at one end of the self-advocacy spectrum. But at the other end of that spectrum there are many everyday opportunities for self-advocacy. Making sure you’re getting the medical attention you need? That’s self-advocacy. Reminding others that you can still do your job well, despite any limitations your MS places on you? That’s self-advocacy. At the most basic level, though, self-advocacy begins with becoming informed. As I said at the start, self-advocacy doesn’t come naturally to me. But I can read and learn and discuss issues related to MS. Armed with information, I can advocate for myself with the best of ’em. n Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children’s book author, she lives in Connecticut with her husband, two teenage kids and two brown dogs. Visit her website at www.jenniferlaruehuget.com. Originally published at blog.nationalMSsociety.org. Transpor t U, LLC . Accessible Transp or tation (doc tors appointments/ shopping/social appointments and more) A Western PA Base d sp e cialize d transp or tation company with a focus on p ersonalize d trips. Call today to schedule a trip or inquire about our ser vices! 412. 281. 8350
No Opportunity Left Behind – Advocacy and walk ms: erie By Karen Mariner
Congratulations to all those who worked to make Walk MS a success this year. We had some great examples of how to weave advocacy into Walk and wanted to share one of our successes. Congressman Glenn Thompson attended the Erie Walk MS and spoke with John Platt, Chair of our statewide Government Relations Committee (GRC) and Western PA Chapter Board Member Chuck Knight. Congressman Thompson told John he was going to speak about his Walk MS experience on the floor of the U.S. House of Representatives so that it could be entered into the Congressional Record. Not only is the Walk MS now a part of the official record of Congress, but Congressman Thompson is the newest member of the PA delegation of the MS Caucus! That means 6 of our 18 House members are on the caucus. GRC members will be working on increasing that number. Senator Toomey has not joined yet, but Senator Casey is co-chair in the Senate. n
MS connection: summer 2013 May 6, 2013: CONGRESSIONAL RECORD - HOUSE H2415 WALK TO CREATE A WORLD FREE OF MULTIPLE SCLEROSIS (Mr. THOMPSON of Pennsylvania asked and was given permission to address the House for 1 minute and to revise and extend his remarks.) Mr. THOMPSON of Pennsylvania. Mr. Speaker, this past Saturday, I had the honor of participating in the Walk to Create a World Free of Multiple Sclerosis. Sponsored by the Pennsylvania Chapter of the National MS Society, this Erie County event provided hope for people living with MS, their families and loved ones. Nationwide, the Walk MS: 2013 campaign will include 250,000 participants across 700 cities to raise awareness and support for research and services for those living with multiple sclerosis. Now, more than any time in history, there are more therapies in development for MS. Basic and clinical re- search has led to the development of many of the approved disease-modifying drugs for MS, including new oral medications.Congratulations to the National Multiple Sclerosis Society for having trained or funded many of the leading MS researchers creating these life-changing breakthroughs. Mr. Speaker, I also want to thank Lori and Tommy Straub for inviting me to be a part of Team ‘‘Walk a Myelin My Shoes.’’ Together, we will continue to work towards a world free of MS.
nationalmssociety.org | 1-800-344-4867
Living with ms
Respite Care Program Does your caregiver need a break? Do you need extra help with you personal care needs?
If you answered “yes” to either of the questions above, then we have some helpful options for you. Part of our mission is to improve the quality of life for everyone who is affected by MS. We recognize that MS impacts the person who has been diagnosed with the disease, and that it also affects people closest to them. The Western Pennsylvania Chapter of the National MS Society has resources and programs available to help when you are feeling overwhelmed, and assistance for your sporadic or daily needs. After an application process with a Chapter Representative, the Respite Care Program provides assistance in arranging and financing temporary respite care for family care partners to give them a break from their caregiving responsibilities. You have the option of hiring a caregiver on your own, working with a Chapter contracted home health care agency, or even a nursing facility if 24 hour supervised care is required for you. Personal care includes toileting, bathing, dressing, meal preparation,
eating, and even light household chores. We also provide community agency referrals if on-going respite care needs are required beyond the capacity of the Chapter’s grant. Additionally, the Western PA Chapter offers a similar program for those who are unable live in their own home/ apartment anymore and who currently reside in a long-term facility. For these persons with MS, the chapter offer a companionship program where a contracted home health care facility matches a trained companion with the person in need who yearns for some nice conversation and companionship. Caregiver services are designed to provide a break or an extra set of hands for those who provide care for a loved one with multiple sclerosis. Taking the time to pay attention to your own needs as well as the person you’re caring for is critical for everyone involved. For more information, please contact Brian Sibenac at 1-800-344-4867. n
T he L if t P rofessional
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DISCLOSURE IN THE WORKPLACE PLANNING AHEAD IS KEY
Disclosing one’s MS diagnosis to your employer is one of the most difficult decisions people with MS face. You need to consider carefully before making the decision to do so, as it has legal and job-related implications that can be ongoing. When disclosing to an employer, there are many issues to consider. There may be good reasons to disclose and benefits from doing so. Once information is given, however, it can never be taken back; so it’s important to make certain that telling does benefit you. If you require an accommodation or need to take medical leave, these are reasons that require some level of disclosure. However, some people choose to disclose just for the sake of disclosing. This may reduce their stress level or make them feel more comfortable asking for accommodations in the future when or if their symptoms change. The decision will differ from one person to another depending on symptoms, accommodations needed, and personal preferences. There are several key issues to consider: who at work needs to know; when does your employer need to know; why would your employer need to know; and what do they need to know? Disclosing your MS to your employer is something that might need to be revisited throughout your time working with MS, whether
MS connection: summer 2013 with the same employer or a new one. Planning ahead is key as knowledge is power and this should help protect you should you decide to disclose. Under the Americans with Disabilities Act (ADA), if you work for a private employer with 15 or more employees, an employee is required to disclose if he or she needs an accommodation. The accommodation can be requested during the interview process or over the course of your employment. You need to be able to perform the essential functions of your job, with or without accommodations, but in order to get the accommodations needed, you must first disclose. Some of the practical or emotional reasons for disclosure include reducing stress, being able to more freely examine insurance and benefits, and it simply may make you feel more comfortable in case there is a change in your symptoms in the future. It is also important to be proactive and not delay until you have a poor performance evaluation. Once it has gotten to that point, it may be too late. Be sure to consider both the legal and practical sides of disclosure, the advantages and disadvantages of disclosure, and explore the components of a disclosure script. Some general suggestions on how to disclose include: • Your disclosure should be brief, concise, nearly devoid of technical medical terms, and end with how you manage your symptoms so you are able to get a job done. • Show how the disability is just one aspect of your life.
nationalmssociety.org | 1-800-344-4867 • Assume that the employer either knows nothing about your disability or perhaps has misconceptions. A big part of disclosing is educating your employer. • Write out your disclosure script and practice it on friends and family. Ask if it is too technical, medical, or scary. There are many resources available to help you navigate this important decision. The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy and can be reached at http://askJAN.org or by phone at 1-800-526-7234. The National MS Society offers a disclosure tool online at nationalMSsociety.org/DiscloseWork. The National MS Society also offers several publications that cover disclosure and other employment issues: The Win-Win Approach to Reasonable Accommodations, Disclosure (Basic Facts Series) addresses disclosure issues in both personal and professional relationships, A Place in the Workforce includes an article entitled “Disclosure or Not, ” and ADA and People with MS. These publications can be obtained online at nationalmssociety.org/ multimedia-library/brochures/employment-issues/ index.aspx. The National MS Society can provide assistance and support regarding your employment questions. Call 1-800-344-4867 to speak with an MS Navigator. You can discuss disclosure issues and accommodation strategies, as well as obtain referrals to other employment resources.
join the movement
MS Miles of Smiles
Runners fight MS at the 6 th Annual MS Miles of Smiles
The 2013 MS Miles of Smiles took place on Sunday, May 19th when nearly 400 runners converged on the North Park Boathouse for this 5 Mile and 5K Race. The 6th annual race hopes to raise $100,000! Runners enjoyed the scenic route and enjoyed their post-race t-shirt, goodie bags and raffle. Thank you to everyone who helped make this year’s event such a success. Mark your Calendar: 7th MS Miles of Smiles Run/Walk 2014 to support those with Multiple Sclerosis May 18, 2014 Visit http://www.msmilesofsmiles.com/ for more information, 2014 registration opening soon! n
Don’t let MS keep you from your independence! Brant’s Driving School has over 30 years of experience in evaluating and training people with adaptive equipment. • • • • • •
Whatever you decide, don’t do it alone. Remember that no two situations are the same and you want to be the one in control. n
6 cars equipped with hand controls and steering devices One car with reduced-effort steering 2 lowered-floor minivans that are able to be driven from a wheelchair High-tech (EMC) controls including joystick and voice-activated secondary controls Full-size truck with hand controls and Bruno Valet Plus seat 2 Certified Driver Rehabilitation Specialists on-staff Office locations in Pittsburgh, Harmarville, and Johnstown We provide door-to-door-service!
MS connection: summer 2013 Hannah Libell
Each recipient received a $2,000.00 scholarship for the upcoming 2013-2014 academic year. The National MS Society’s scholarship program exists — to help outstanding individuals who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The National MS Society Scholarship Program is for first-time college freshmen (of any age) only. The program opens October 1 and closes mid-January 2014. For more information visit the website at www.nationalmssociety.org/scholarship n
Leah was chosen as one of eighteen students out of 424 national scholarship recipients and recognized as a Top Scholar. Top scholars are selected based on academic performance, leadership and participation in school and community activities, an outside recommendation, work experience, education and career aspirations, and an essay on the impact of MS in their lives. As a Top Scholar Leah is eligible for a renewable scholarship over the next 4 years.
S a v e t h e D a t e f o r L o b s t e r f e s t f o r MS Friday ~ September 27th 2013 Join us at the Bavarian Hall, Altoona, Pennsylvania
2013 Award Recipients The Western PA Chapter of the National MS Society is pleased to announce that scholarships have been awarded to seven recipients who demonstrated a commitment to academics, community service and involvement with Western PA Chapter of the National MS Society.
nationalmssociety.org | 1-800-344-4867
Your choice of a Whole Maine Lobster or Hoss’s Filet Mignon and all the fixins! Hors d’oeuvres, Spirits, Dancing, live and silent auction. Reserve your tickets today! By calling: 814-696-1017 or online at nationalMSsociety.org/PAX Sponsorship Opportunities Available Paid advertisement
Has Multiple Sclerosis (MS) Affected You? Join us for this free and interactive live event for people with MS, their families and care partners Wednesday, June 26th
Interact with a leading MS
Pleasant Hills, PA
Space is limited so RESERVE YOUR SPOT TODAY!
expert and others living with MS
Learn about a therapeutic option
Location: Panera Bread- Pleasant Hills, PA Address:
Panera Bread 623 Clairton Blvd Pleasant Hills, PA 15236
Wednesday, June 26th
Speaker Dr. Stuart Silverman, MD Associates of Neurology in Pittsburgh
Complimentary Food Sponsored by Acorda Therapeutics®, Inc.
20 Walk mS
Walk This Way
Walk MS is a simple, but incredibly powerful way for you to share in the hope for the future.
The 2013 Walk MS campaign got community members moving and left them moved! A special thank you goes out to everyone who came to one of the 16 Walk MS events throughout 26 counties of Western Pennsylvania. By joining the Walk MS movement, you joined our fight to stop MS. You shared a remarkable achievement with more than 8,000 other Western Pennsylvania walkers. Most importantly, you made a difference by helping to raise over $800,000 thus far for research and services for people with MS living in Western Pennsylvania! Our goal for 2013 is to raise over $900,000 and there is still time left to help us reach our goal – call the office at 412-261-6347 or visit walkMSwesternPA.org to learn how! Some highlights from the 2013 Walk MS campaign include YOU can be proud of: • Walk MS: Pittsburgh was held on Sunday April 21st, and despite a grueling and long winter, spring finally sprung and the weather was cool, but delightful! We are proud to report that the 2013 Walk MS: Pittsburgh was our largest yet… 3,500 walkers converged on Point State Park and with nearly $400,000 raised, we’re close to our goal! • 2013 Walk MS: Uniontown inaugural event was a smashing success! On April 27th more
MS connection: summer 2013 than 100 people came out to Penn State Fayette and raised over $11,000 – surpassing our goal! Thanks again to all of the wonderful people of Uniontown for your enthusiasm and generosity. We are all so proud of our youngest Walk MS and can’t wait for next year! • Walk MS: Erie rocked! Presque Isle State Park was full of sunshine and enthusiastic walkers on May 5th. Over 600 members of the community came to Presque Isle State Park and raised nearly $50,000! Way to go Erie! • Walk MS: Dubois had more than 400 participants converge on Treasure Lake on April 28th and knocked it out of the park raising over $22,000! We unite as a community during Walk MS to make a powerful statement – to keep us moving toward a cure of multiple sclerosis. Whether you walked, volunteered, donated or fundraised, we thank you for getting involved. We look forward to working with all of you for a great 2014 Walk MS season, and please stay tuned for walk dates, locations and more. n Thank you to our sponsors: Teletracking, KDKA TV, KDKA Radio, SAM’s Club, EMD Serono, Peoples Natural Gas, Betsy Ann Chocolates, The Pittsburgh CW, Lamar, Acorda, Questcor, Novartis, Genzyme, Excela, TR&C, Eat’n Park, Ritas, Panera Bread , Texas Roadhouse, Snyder, Pepsi, Sarris Candies, Toshiba, Mylan, Giant Eagle, Old Time Coffee, 5 Generation Bakers, Gitano Productions, Charwell, Cool 101, Ainsworth Pet Nutrition, Fox 66, Your Erie.com, UPMC Northwest, ABC, Northwestern Rural Electric, Jet 24, Northwest Savings Bank, American Refining Group, Froggy 98, WTAJ, Sunny 106, Imler’s, Papas Johns, and more!
nationalmssociety.org | 1-800-344-4867
walk ms presenting sponsor
Run to Stop MS
TeleTracking Technologies, does it again!
The Western PA chapter once again joined forces with the Pittsburgh Marathon as a Charity Partner. 43 marathon runners dedicated their participation to “Run to Stop MS” and raised over $35,000!
A huge thank you goes out to all of our friends at TeleTracking Technologies, who were once again our generous Walk MS Presenting Sponsor. Through corporate partnership and an awesome corporate team, TeleTrekkers, lead by employees Kayleigh Fontana and Kathy Unger, TeleTracking contributed over $27,000! The team and TeleTacking employees knocked it out of the park with a fun-filled afternoon fundraiser at the office which included treats from Rita’s and t-shirt sales. Together, Team TeleTrekkers raised over $1,000 in one afternoon! Way to go! Their continued support has helped us grow our Walk MS campaign to include over 8,000 walkers at 16 Walk MS events across 26 counties of Western PA. Thank you for your continued support TeleTracking, we look forward to working with you next year! n
The Pittsburgh Marathon
Congratulations runners on being a part of our best year thus far! All runners on the 2013 Run to Stop MS Team have been affected by multiple sclerosis, either personally, with a family member or close friend struggling with the disease. “This is an inspirational team and I was honored and blessed to meet and run with all of them,” Ellen Stweart, Run to Stop MS Coordinator said. Run to Stop MS is an initiative that gives athletes participating in a running event an opportunity to support people living with MS. n
Classifieds Rear entry wheelchair van; 2007 Dodge, 47,800 miles, asking $14,000 Call Linda at 412-893-2800 2004 Toyota Sienna XLE Limited Edition Midnight Blue, Leather interior, Navigation, Heated Seats, Moon Roof and power doors 43, 234 miles Modified vehicle side door ramp Asking price $20,000 or best offer. Vehicle in excellent condition if interested please contact Faith (412) 247-5491.
MS connection: summer 2013
nationalmssociety.org | 1-800-344-4867
Way to go muckers!
STACOOL UNDER VEST By susan cook
The inaugural MuckFestMS: Pittsburgh took place on Saturday May 25th in Wampum, Pa. Over 1,300 participants raised over $90,000 for the National MS Society, Western PA Chapter. The clear, crisp and cold morning air did not keep the masses away from getting “mucky” and the enthusiasm reverberated throughout the MuckFestival Area. After running the 5-mile mud obstacle course, participants grabbed a beer and some festival food, while checking out the MS Information tent and the MuckFest MS apparel. There is still time to support the mission behind the “muck” and help us reach our fundraising goal. Donate MuckFest MS by going online at muckfestms.com or call the chapter. Mucktacular plans are already in the works for 2014, see you in the MUCK!!!!! n
unforgettable rides. unbelievable destinations.
bike to create a world free of ms! Our signature rides are a great opportunity to support the chapter and our vision of a world free of MS. Keystone Country Ride July 20 - 21, 2013: 2 days, 150 miles Start/Finish: Hollidaysburg, PA Overnight: State College, PA Cook Forest River Ride September 21, 2013: 1 day, 35 or 60 miles Location: Cook Forest State Park, Cooksburg, PA
The StaCool Vest™ is the most lightweight, comfortable body cooling system available. It uses high-quality, durable materials and easily replaceable ThermoPaks to cool the body core efficiently. Made from comfortable, breathable Airprene Nontoxic and nonflammable ThermoPaks
MS Connection Fall Issue will include a wrap-up Bike MS: Escape to the Lake and Bike MS: Keystone Country Ride!
Register to ride or volunteer online at bikeMSwesternPA.org Please e-mail Chris (Chris.Pfeiffer@nmss.org) for more information or to register!
Spandex sides for additional comfort and flexibility Front zipper for easy dressing and removal Lightweight – adult sizes are 5 to 5½ pounds with hydrated ThermoPaks Wear under clothes or as an over vest Available in a wide range of sizes to fit any body type
MOST LIGHTWEIGHT, COMFORTABLE BODY COOLING SYSTEM
For more information visit us online at stacoolvest.com or call toll free 1-866-782-2665
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047
1501 Reedsdale St., Ste 105 Pittsburgh, PA 15233
Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1 800 344-4867, or visit nationalMSsociety.org/knowledge.
Tee off to help create a world free of MS. Erie Golf Outing
August 16, 2013 Riverside Golf Course, Cambridge Spring
Anne E. Barnes Memorial Tournament
September 5, 2013 Iron Masters Country Club, Roaring Spring
30th Annual MS Golf Tournament, Colleen McGuire Memorial September 16, 2013 Laurel Valley Golf Club, Ligonier