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Home Modifications: From Falls to Freedom

After my multiple sclerosis diagnosis in 1997, I knew that I would be faced with obstacles in my life, but didn't know when they would occur or what they would be. I was a school teacher and coach, a former college athlete and father of two daughters. In my mind…I was still invincible.

In 1999 my son was born, and like most fathers I still remember dreaming of the day I would get to run alongside him, teaching him how to ride his bike. Four years later that day came. I placed my hand on his back and together we took off down the street ready for his first ride…or so I thought. My legs simply would not move. My son fell over on his bike and my strong legs could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment I had looked forward to for years...

Paving the way for MS research

It all started 30 years ago when I noticed that my vision deteriorated suddenly. I had always had 20/20 vision, so I became acutely aware that something was wrong when my TV started looking blurry, I mixed up my colors and my depth perception was off. Unnerved, I sought out a doctor’s opinion. I was relieved when he ruled out a brain tumor, but I was left with no definitive answers. As time passed, my vision gradually improved, but I started noticing other seemingly unrelated issues. Occasional muscle spasms would come and go when I wrote. I was getting much more tired during my weekly golf outings. Again, I set off to see my doctor but he dismissed both of these symptoms as dehydration...

Build with what you have

Building with LEGOs often results in an interesting quandary: the more one builds, the fewer pieces you have left in the collection, no matter how carefully they might be organized for easy retrieval. Living with a chronic, progressive, debilitating disease like multiple sclerosis is a lot like that. It can be described as “the gift that keeps on taking.” Ones strength, cognitive resources, coordination and stamina are all taken away slowly but surely…sometimes even quite abruptly...

Accommodations to get out the vote

When the Americans with Disabilities Act became the law of the land in the summer of 1990, I was probably experiencing early symptoms of multiple sclerosis and didn’t know it. I was physically active and enjoyed international travel and adventure, and sports such as hiking and cross country skiing. I lived and worked in Manhattan, traveled by subway, moved anonymously through crowded streets and retreated to my house in rural upstate NY on weekends. The only “accommodations” I concerned myself with then were the latest modern conveniences. Fast forward 11 or 12 years – I can’t remember exactly. The harsh diagnosis of MS ground to a halt almost everything I had loved to do, physically.

We Must Rally for Medical Research

When I finished graduate school and decided I wanted to do research on neurologic disease, I went to work with one of the first women studying myelin, Dr. Marjorie Lees. Marjorie inspired me to build my research around understanding myelin and oligodendrocytes which are damaged in MS. Over the years, my research has built on her training and kept me focused on identifying how myelin is made and repaired in the brain. There has been very exciting, fast progress over the past two decades in identifying new therapeutics that reduce the immune component of MS, but there remains damage in the central nervous system.

Kids DO get MS

Last week my husband and I went to Capitol Hill and spoke to more than 30 congressional members and staff who were gathered to learn more about a topic close to our hearts: pediatric MS. Together with the Director of Partners Pediatric MS Center and Associate Professor of Neurology at Harvard Medical School, Dr. Tanuja Chitnis, we helped shed light on a diagnosis that affects an estimated 8,000 to 10,000 children and adolescents, including our son Sean. Sean's symptoms started when he was just 7 years old. He was dizzy, off balance, and had slurred speech. We took him to the emergency room, where – during the course of a weeklong stay in the intensive care unit – a battery of tests was performed and a diagnosis of Acute Disseminating Encephalomyelitis (ADEM) was made. I remember reading about ADEM and the mention of MS, but I never thought twice about it since we had heard that “kids don’t get MS.” ...

Research, Politics, MS and Me

In 1985, I started experiencing numbness and motor deficiencies. Like many people, I was tested,  and then undiagnosed . Maybe it was multiple sclerosis… but I was not heat sensitive – in fact I loved living in Florida and soaking in the  hot tub – and it took 14 years for anything to show up on my MRIs. I was eventually diagnosed with MS. With ongoing treatment and attention to my overall health, I was able to keep working – as a university professor, teacher and researcher  – through my partial retirement and move to the Washington, D.C., area in 2004. My left leg doesn’t work very well, so for walking any distance or in a crowd I use crutches – or I fall down. That’s one nice thing about D.C.: there’s always a crowd to offer help if I fall. Also, the D.C. region is where decisions are made about state and federal funding. And as an MS activist, I like having a say in these decisions.

Empowered by Activism

My husband, Dan, and I were talking with some women at lunch a few weeks ago. They were sharing stories about an exercise class they teach and how rewarding it is to see their students’ progress. To stay involved in this exercise-related conversation, I commented about how I was looking forward to starting physical therapy (PT) to treat some weakness associated with my multiple sclerosis...

Advocating to One Day Hear These Words: You are Cured

John Platt is a husband and father of two daughters. Officially diagnosed with MS in 2005, John connected with the Society, has become a tireless MS activist and volunteer and was named chair of Pennsylvania’s Government Relations Committee in 2012. John’s website is named Moving Forward, which is his mantra. At the Society’s 2014 Public Policy Conference, John delivered this speech about what motivates him to be an MS activist. Become an MS activist and learn more about the Society’s advocacy priorities here.

Like Action? Become An MS Activist

I spent my formative years around a lot of complaining – mostly without action. An unlikely source of inspiration to be sure, but watching so much inaction somehow lit a fire beneath me. Turns out I don't much care for feckless grumblings. Consequently, striving to put purpose behind my words is a philosophy I live by. And following an MS diagnosis at age 27, I resolved to use my story only in the context of driving progress. We each have our own approach to MS. And this isn't exclusive to navigating symptoms on top of juggling life and uncertainty. It's really about how we retain our sense of self amidst all the chaos – holding onto a unique voice that empowers who we are and what we're capable of in spite of this disease. This sense of empowerment is why I became an MS activist...
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