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Pictures of You
By Mary Bolster

Staying Positive Through Peripheral Neuropathy

Leading a support group on Long Island helps Joseph Malkevitch, 77, keep an optimistic outlook on life.

You've had peripheral neuropathy for almost 30 years. What has helped you deal with it?

I didn't know it at the time, but joining a support group 20 years ago was one of the best things I could have done.

Joseph Malkevitch
Photograph by Marius Bugge
How is this support group special?

It's loosely affiliated with the Foundation for Peripheral Neuropathy. Over the years, we've invited people to make presentations about various aspects of neuropathy. We're also known for encouraging people to speak candidly about their doctors and identify the knowledgeable ones and the less knowledgeable ones.

What have you learned about your condition?

It was very helpful to be told that people rarely die from this. Of course, neuropathy causes balance problems, so you could die from a fall. It was also helpful to learn that if you live long enough, you're more likely to develop neuropathy.

About 10 years ago, you became the leader of the support group. How do you contribute in that role?

Being a mathematician, I appreciate empirical data, and I look for patterns and connections. For instance, one of our attendees was a first responder after September 11, and our support group suggested he tell his neurologist that he was exposed to toxic chemicals. Another time, we had two men who had spent their careers using movable lead type. Since lead poisoning is associated with neuropathy, our group thought this was an important point for them to share with their doctors.

In what other ways do you help attendees?

I try to educate them about the clinical aspects of the disease, such as the different types of nerves, and how elusive a cause can be. I also encourage people to make good use of their neurologists' time by helping them ask the right questions.

How have you adapted to your condition?

About five years ago, I lost 25 pounds. And I try to be more physically active, even though I find exercise boring. Instead, I walk faster to and from the train station on the days I still teach. I'm conscious of not sitting still for too long. I stopped driving, because I can't tell how much pressure I'm putting on the gas pedal or brakes because of the numbness in my feet. I wear loose-fitting socks at night, which helps with the tingling, although that may just be a placebo effect for me. I'm also very careful when I walk so I don't fall. I've also noticed that I now have symptoms in my fingers and the neuropathy is moving up my legs. The only time I don't notice the numbness is when I do mathematics.

What advice do you have for people with this condition?

You have to accept that neuropathy is a chronic disease and try not to let it take over your life. People can go from doctor to doctor and try many different drugs in their quest for a cause and a cure. I also think patients should be required to give feedback on the perceived success of their medication or treatment and any side effects for the benefit of future uses of those treatments and medications.