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Advocating to One Day Hear These Words: You are Cured

Blog Summary

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

Blog Summary

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...

Tilt-In-Space

Blog Summary

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...

My Silver Lining

Blog Summary

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.

Accessing health insurance

Blog Summary

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.

Life with Pam

Blog Summary

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.

The new faces of MS

Blog Summary

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... 

The MS Know-It-All

Blog Summary

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?

Why Can’t We All Just Get Along?

Blog Summary

The Unspeakable Bits From a Life With MSI believe that most people with multiple sclerosis are really good people dealt a challenging hand by the fates and who are just trying to get through and help others along the way. Results of the most recent CCSVI study, however, have once again highlighted some rather nasty patient-on-patient treatment. Over the years – and as social media interactions among people living with MS have increased – I have noticed some thoughtless, some insensitive and some downright rude behavior within the MS community… toward one another!

Celebrating the ADA

Blog Summary

Today, we celebrate the 23rd anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA is landmark civil rights legislation that resulted from the intense and selfless activism of individuals and groups including the National MS Society who fought for their right to receive equal treatment and access. Because of their activism, today, the rights of people with disabilities are protected in several areas including education, employment, public services such as public transportation, public accommodations (restaurants, hotels and retail stores) and telecommunications. Since the ADA’s passage, great strides have been taken to improve the quality of life of people with disabilities and to allow them to more fully participate in and contribute to mainstream society. Even before I was diagnosed with MS in 1987, I personally witnessed others benefit from this statute. Prior to the ADA, in my role as a health center professor and teacher at the University of Florida, I saw how difficult it was for “students” with disabilities to mainstream in medical training. After the passage of the ADA, other faculty members and I developed teaching and diagnostic aids to help students work hard to complete their dreams of becoming health professionals. We used translators and transcribers; we developed augmented stethoscopes and other diagnostic aids; and our school upgraded buildings to make them physically accessible with ramps, automatic doors and elevators. In 1986, when I started experiencing symptoms of MS (fatigue, numbness and motor deficiencies), I was able to continue my work as health center professor, teacher and researcher due to accommodations made by my University.

Empathy

Blog Summary

“I feel pain when I see young people in wheelchairs.” This statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy. I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator.  I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go.