MS Connection Blog

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.

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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...

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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.

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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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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...

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My Silver Lining

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.
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Accessing health insurance

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.
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Life with Pam

My wife, Pam, was diagnosed with MS in her mid-30s, after bouts of double-vision and “clumsiness.” For the first year or two, I sort of pretended like it wasn’t that big of a deal. However, she fairly quickly became dependent on a wheelchair and eventually lost all function except some use of her right hand. Now she needs round-the-clock care. Our three boys are grown up and moved out—one recently diagnosed with MS—and Pam and I both really want her to keep living at home. So far she is able to do so with in-home care and me: her husband and family caregiver.

For the past 15 years, our days have gone like this: I get up at 6:00 a.m. and help Pam out of bed with the lift. I take care of her restroom needs, then wash her and get her into her wheelchair. Then the certified nurse assistant (CNA) arrives so I can leave for work. Pam’s CNA feeds her breakfast, lunch and dinner, and manages her other needs including positioning to avoid pressure sores. Pam can be in her wheelchair for four hours at a time, and then she must be on the alternating-air mattress on her hospital bed (in our living room). After I get home from work we watch TV and talk; I scratch her nose for her or smooth her hair until bedtime. It may sound repetitive or leaden, and sometimes it is tough. But people get used to things—we’ve been doing this for a long time. Pam and I wouldn’t have it any other way.
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The new faces of MS

When I was diagnosed with multiple sclerosis way back in 2001, I learned that that MS primarily affected women who were between 20 and 40 years old. Then, and now, MS affects two or three times as many women as men. Those statistics made it easy to pigeonhole the condition as one that mostly mattered to women of childbearing age.
But recently we’ve heard about several young men such as Jack Osbourne and NHL goalie Josh Harding who have been diagnosed with the MS. The latest news is that NASCAR star Trevor Bayne has been diagnosed... 
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The MS Know-It-All

Have you ever run across the “Know-It-All”? You know, the guy or gal who has done, seen, tasted, smelled, tried, succeeded at (hardly ever failed – at anything), read, studied and/or experienced whatever topic might be at hand? And have you noticed that these KIAs (might as well give them a name, right?) have opinions about a subject that are almost always diametrically opposite yours on just about everything? It seems sometimes that these KIAs can only feel themselves to be right by making the rest of us feel like we are somehow wrong.

How about the MS KIA?
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