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.
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.
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.” ...
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.
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...
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.
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...
In May 1997 I graduated from the University of Michigan, Flint with a Bachelor of Arts degree in sociology. I was diagnosed with multiple sclerosis six months later. I was 23 years old.
From the beginning, this disease was aggressive. Within a year of diagnosis, I had tried each of the three disease-modifying medications that were available at that time. Unfortunately, I continued having flare-ups almost monthly. I spent numerous hours receiving intravenous steroid infusions to combat inflammation. At physical therapy I learned how to properly use a simple cane, but my MS was relentless. I quickly learned how to use a small-base, and then a large-base quad cane to assist me with my wobbles. When my wobbles became falls, my therapist recommended using a walker...
I was diagnosed with relapsing-remitting MS (RRMS) when I was 36, in the prime of my life and career as an athletic trainer. I tried all three disease-modifying therapies that were available at the time but unfortunately none were helpful to me. In 2003, I traveled to Northwestern University hospital in Chicago to enroll in a clinical trial. It was a bone marrow transplant study and even though the therapy had a high mortality rate, I was willing to take the risk to help better understand and treat MS; but I was not accepted.
That was probably the toughest day in all my now 17 years of battling the challenges MS presents; not just because I was not accepted into the trial, but because it was the first time I was told I had primary-progressive MS (PPMS) — I now know that I had PPMS from the start, but because it manifested so slowly, no doctor was able to "label" me with it right away. Hearing I have a form of MS that is chronically progressive and has no therapies felt like being told to “go home and make the best of it” because they had nothing to offer me.
Since my multiple sclerosis diagnosis in 1997, I have been mostly uninsured. Before my diagnosis, I worked as a bank trust officer. I bought a minority share in a private business in the mid 1990’s. This did not work out, I wasn't able to get back into my former profession, and I was also unable to secure a position in a related field that would provide health insurance coverage.
Being uninsured, I typically self-pay for most of my medical treatment. As a person with MS, I’m sure I don’t have to tell you how expensive this can be. Thankfully, I have been able to receive my disease modifying therapy (DMT) at a reduced cost through a patient assistance program. If this program didn’t exist as a safety net, who knows where my disease would be today without treatment to slow its progression.