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Tuesday, November 18, 2014

A New Challenge -- a patient's story

by Denise A. Coleman

I had already gone through several major life changes, leaving my career and seeing my daughter get married, have children and move 50 miles away from me. This was a lot but to have my physical, mental and emotional life affected by Multiple Sclerosis at the same time was overwhelming. Multiple Sclerosis (MS), is a chronic neurological condition that affects the Central Nervous System (CNS). When the myelin sheath or nerve fiber is damaged, nerve impulses to and from the brain is distorted or interrupted causing the symptoms, which are unpredictable and vary person to person.

In 1998, I had to leave my career, one I loved, and stop driving, both which helped me maintain my independence. I lived in Manhattan, which was great because there was plenty of cultural, intellectual and enjoyable things to do and an incredible city bus system that ran 24/7, and the buses were accessible whether I was on crutches, in a wheelchair or even when I was on my motorized scooter.

Over time I adjusted to most of the life and lifestyle changes I faced. I admit I had some difficult times, especially because my income decreased by about 60%. Plus I had to physically adjust as the number of MS symptoms I experienced increased and got worse. It is interesting how much you spend just going to work, and therefore how much you save when you stop—car and car insurance, parking fees, tolls and gas, clothing and dry cleaning, lunch out with colleagues, etc. etc. Trust me, I missed my lost income because I wanted to travel and start doing things I hadn't been able to do while Jen was younger. My status of being a disabled woman and the physical and financial changes that came with that had a huge impact on my life then and now, 16 years later.

Now that I have adjusted to these changes what's the big deal about a few more, right? Well that can depend on what size the adjustments are—there are small changes and huge changes, and I prefer small ones, or maybe mid-size. I decided to make a few significant changes in the past few years; I bought a house in Huntington, New York, to be near my daughter and her family. I lived on Long Island for the first 40 years of my life, so it wasn't all that new to me. In fact, it was familiar—I recognized the traffic on the Long Island Expressway, and all the growth in business and homes. Perhaps most familiar, which makes life as a disabled person very difficult, is the lack of public transportation, specifically accessible bus transportation. Yes there are County and Town Vans for People with Disabilities, however they only run until 7:30 PM, and on Sunday they have limited routes and times. It is very difficult to try to have a fulfilling life relying on pubic transportation, which I did in Manhattan very successfully. I used the NYC Bus Transit System, which runs 24/7, as does the Access-A-Ride, the city's Van. In short, I could take a bus or van anywhere in the city, any time of day or night, something I don't think I fully appreciated when I lived there.

I want to close this post with some good news. Over the last ten years I have worked with several organizations to advocate on behalf of people with MS, chronic pain, and other conditions, but for the two years before moving to Huntington, I pulled back and dealt with the changes going on in my own body and my life. Now that I am on LI, and I have made the necessary physical and emotional adjustments to my life with MS, I have gone back to my advocacy work. I am on the Government Relations Committee of the Long Island Chapter of the MS Society and have updated my relationship with the US Pain Foundation. I am also starting my own advocacy program in an effort to enhance the quality of life of people with chronic conditions and disabilities.

Several people have volunteered to work with me and I hope that more will because we need to reach out to County Legislators, print and broadcast media, people with these conditions and disabilities, and perhaps most of all the general public, people who don't know the impact illnesses like MS have on the lives of someone who has it, their family, friends, and neighbors. The more we educate people about these issues the better chance we have of achieving the changes needed to enhance the Quality of Life of everyone who needs assistance to live as independent and fulfilling a life as they want and are able to. Think about it, and then see what you can do to help in this cause. Thank you.

Denise Coleman 



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