PeopleWithMS - Stories & Pictures

In our lives, all of us living with MS find ways to overcome the challenges the disease presents each day. Racing to the toilet, needing a nap at inopportune times, Were you drinking? words slurred wobbling and all the others. It can be easier to stay away from life than to confront these obstacles and live. Let’s all be honest, what lies ahead, even just ten minutes from now, can at times be frightening. How we feel can change so rapidly, however, not always for the worse. This fact taught me an important lesson, keep trying to accomplish your goals; while any given day can be tougher than the next the opposite is also true. Tomorrow might in fact be easier than today. If you are actively pursuing a goal the effort, overcoming the obstacles MS puts in the way, makes success so much sweeter. Tougher for us than some others, maybe, but can I or can’t I. The answer is I can and do. I am a father, small business owner, elected official and a committed MS advocate. I live with MS. The story I have to tell revolves around striving to over come the obstacles that the illness presents

    My family had been actively working for the cure long before my diagnosis. My sister Sue has been living with MS for the past 23 years. While the disease has made life challenging with the help of family and friends both she and I continue to smile and fight on.

   I was diagnosed fifteen years ago. Like many of us I have seen my physical condition worsen gradually over time. Today I use a power wheelchair, no longer can drive, but I do get around.

   Here on Long Island I’ve been a very active member of our local NMSS chapters Government Relation Committee. I travel to both Albany and Washington advocating on behalf of legislation important to those of us with MS. I have developed wonderful relationships with the local, state and federal officials who represent my area.

   I’m especially proud of the success I had in having town and county pools made accessible. With the support of the NMSS chapter I held meetings with numerous town and county elected officials, having researched in advance ways to make pool facilities accessible to the physically challenged. One by one a combination of lifts, ramps and aquatic wheelchairs were added to fifteen pools.

   I’ve also participated in two MS drug clinical trials, Antegren and APL. I learned a great deal about the new drug development process, especially how long and expensive it can be. I met with my Congresswoman Mrs. Carolyn McCarthy with an idea to help expedite the process. Proposed that federal money be made available to University labs and small biotech companies to fund phase one and small phase two trials of molecules which were candidates to treat small illnesses which currently are poorly treated by available drugs. IND ’s with the FDA and all federal regulations would be followed. An independent group of scientists would evaluate applications for funding. If the drug ever was ultimately to reach the market five percent of the profits would go back to the program to fund other clinical trials. A bill was brought to the House floor.

   Five years ago I decided to run for elected office in my home town. On my wheelchair, in the heart of the winter, I campaigned door to door and won. I was recently reelected to my second term as Trustee in the Village of New Hyde Park We have just begun work on a downtown revitalization project. Many of the elected officials I first befriended through my MS work have been involved in helping me fund the project. We recently broke ground on the streetscape portion of the project. I’m very proud of it.

I operate a Shoe Repair business at the train station in New York City . Everyday I take my wheelchair to the train and commute to the City. It’s gotten tougher over the years but so far I’ve been able to keep it going.

   MS probably played a role in the break up of my marriage. I was married fifteen years and have two daughters Angella and Marielena. While the break up of any marriage is sad I wanted to briefly discuss an important lesson I’ve learned. MS can change your ability to perform sexually. This is difficult for all of us to accept. I never believed that intimacy with your partner could be special and mutually rewarding because of this. I was wrong; unfortunately I didn’t learn this lesson until after my divorce. Probably in my case I wouldn’t have if I had not met a wonderful lady who by the way also has MS. We met on Teva’s web site in the chat room and have become wonderful friends. Love and intimacy can still be a part of your life with MS. Tough to talk about but I want everyone to remain open to this possibility, it’s a special part of life.

I live with a disease called Multiple Sclerosis and live I do. I thank God and my family for the help they give me. I remain determined, learning to accept limitations but striving to challenge myself to over come the hurdles.

My name is Don

I enjoy the company on the board very much great place to sneak away to.

Ok I'm 48yrs old hopping I'm still kissable LOL. Was dx'ed in 1990 my sister Sue and I both have MS. I divorced five yrs have two daughters ANGELA 26 Marielena 17. I am a RN though not worked as one for 16 yrs. I do a lot of advocacy work as a volunteer for the NMSS ravel to DC and ALBANY all over Long Island NY where I live.

I USE A POWER CHAIR TO ET AROUND outside walker inside. Own a shoe repair shop in Penna STA NYC. GENERALLY I'M A HAPPY GUY HATE MS BUT WHO DOESN'T. LOOKING FOR A GREAT ROMANCE

Iʼve participated in two clinical trials. Iʼm proud of being in an early Tysabri trial as it seems to be helping to improve the lives of many MSerʼs.

Iʼve used Tysabri for the past 18 months The monthly infusions have been easy to take. No side effects. For safety after the third infusion you see the Dr prior to each subsequent one. Also your asked to list what meds your taking. Tysabri canʼt be used if you take any other imunomodulating /suppresive drug.

I am choosing to stop Tysabri. While Iʼve had no flare ups I feel a bit weaker so Iʼm considering other options. I do however want to say that the majority of the people in my group are stable or reporting theyʼre doing a bit better. The improvement most often described is mental acuity.

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Don