The Neuropathy Association, Inc.: Adapt to the Curve Balls of This Disease

Adapt to the Curve Balls of This Disease
--Eugene R.

Having battled neuropathy for four decades, what has kept me grounded is my openness to adapting to the curve balls this disease has.

In 1999, after 31 years of a variety of diagnoses, and countless doctors visits, I was finally diagnosed with peripheral neuropathy. While it was a relief to finally have a name for what I was going through, the neurologist I saw didn’t give me very much information. That was where The Neuropathy Association’s website came in. I started reading other people’s personal stories on the Association’s Bulletin Board, and realized by reading about their symptoms, “My God, that’s me!”

The journey, however, was far from over. I visited neurologists to get better grip on my diagnosis, and, finally, find a way to control the disease that had me feeling electric shocks, and losing control of my balance and my body in ways that scared me. After countless tests and medications, I wasn’t getting much better. Instead of answers and treatments, doctors told me I was obsessive compulsive and that I was lying about my symptoms. It seemed that even the doctors who knew about neuropathy didn’t know about the specific type of neuropathy that I had (an autoimmune form called Chronic Inflammatory Demyelinating Polyneuropathy or CIDP).

In the middle of this process, my saving grace was a phone call from the Association’s late president Mary Ann Donovan. She called close to midnight on one of my lowest days. Our conversation changed my approach to seeking treatment. She told me that I had to take more control over my treatment, to get a second opinion when I was not satisfied with a doctor’s recommendations, to always ask questions, and be an active participant in my care: the doctors are not the problem, she told me. You have to take responsibility for your heath.

Share Your Story

I had a few false starts as doctors tried to determine best treatment, but finally, I found a doctor who suggested I try intravenous immune globulin (IVIG), which brings me to my latest battle in this 31 year journey. Although it’s the most effective treatment for my autoimmune neuropathy--CIDP, it’s taken a lot of work to convince Medicare to continue covering it as a result of the Medicare Modernization Act changes. In fact, I just went to Washington, D.C. to speak about this issue in April 2009.

My dialogue with Mary Ann and my time spent talking with other neuropathy patients propelled me to keep going. I started my own support network in Florida. My feeling is that if you help even one person, you’ve accomplished your goal. It’s not about getting dozens of people to meetings, it’s about giving that one piece of advice, that one doctor or book recommendation that finally helps a patient realize what they have.

But for as long as I can, I will continue to fight this disease. Having battled neuropathy for four decades now, what has kept me grounded is my openness to adapting to the curve balls this disease has.

- Lt. Col. Eugene B. Richardson (Retired)

All active news articles