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In her own words: living with Parkinson's disease

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Arlene learned that she had Parkinson’s disease 22 years ago, on her 50th birthday. Despite the disease’s progression, the Florida university professor continued teaching and traveling until a few years ago. Here’s her story.

What was your first sign that something was wrong? What symptoms did you experience?

I started having trouble buttoning the sleeves on my blouses and thought something was wrong with my fingers. I also experienced some difficulty getting out of a chair and moved more slowly than I had in the past. One day, a Parkinson’s donation solicitation arrived in the mail. I had all but one symptom listed, so I made an appointment with the doctor.

What was the diagnosis experience like?

My regular doctor agreed that Parkinson’s was a possibility. He ordered a CT scan to rule out a brain tumor and an EEG. He also sent me to a neurologist. The neurologist took one look at me and diagnosed Parkinson’s.

A friend had read about a Parkinson’s study under way at the National Institutes of Health (NIH), so I called and was interviewed by phone. I traveled to Maryland for a second opinion and stayed a week. They did all kinds of tests as part of a clinical trial to find the best way to diagnose Parkinson’s. I felt good about participating. I thought I’d find out something about my condition, and the study results could be helpful to someone else. I have followed that doctor as he moved on to other university-affiliated medical centers. It’s good to stay close to research, even if I am no longer eligible for a trial.

What was your initial and then longer-term reaction to the diagnosis?

My first thought was “Where can I go to get the truth—that I don’t have this disease.” At the same time, I knew it was the reason for what was happening. Currently, I read everything about Parkinson’s and try to help other people by passing along the information. I stay independent and continue doing things for myself. Sure, it takes longer to cook, thinking through every movement. But it’s worth the effort.

How is your disease treated?

I started on medications shortly after being diagnosed but held off taking Sinemet until 1983. I was concerned about its side effects. The medication made a big difference, but I did develop the unwanted movements that often come with it. And recently I started seeing visual illusions, another adverse effect.

Did you have to make any lifestyle or dietary changes in response to your illness?

I faithfully exercise; even knowing exercise alone won’t do it. But if I didn’t, I’d be in real trouble. We put in a heated pool, so I could exercise daily year round. It keeps my muscles strong. I can really feel the difference and don’t function as well if I don’t exercise for a few days. I gave up gardening, because I fall easily and can’t get up without crawling to the steps. For the Sinemet to be as effective as possible, a low-protein diet is recommended. So I limit my protein intake. I also avoid other food-drug or vitamin-drug interactions.

Did you seek any type of emotional support?

When I learned there wasn’t a local support group, I decided to start one. The doctor offered to notify his patients. More than 50 people came to that first meeting. I didn’t feel I really needed the group, but thought it might help others. It’s amazing how often we see people who have never talked to another person with Parkinson’s. Within a couple of months, they feel better, knowing there is hope.

Did/does your condition have any impact on your family?

Parkinson’s affects every part of our lives. The rigidity and mask face present difficulties. My husband, Bob, always asks me to speak to him, since he can’t read my face. With time, everything gets harder—getting in and out of bed, moving, making love. But we keep going. You can’t give up. In 1997, Bob was diagnosed with Parkinson’s. It’s rare for spouses to develop the disease. It complicated life significantly. We try helping each other. But at times, like when negotiating steep steps, we need a hand from a third party.

What advice would you give to anyone living with this disease?

Pop the pills and persevere. Learn all you can about Parkinson’s, so you can help manage your case. Join a support group. Laugh. Do as much as you can yourself, rather than depending on family members. And at least once a year, see a specialist involved with research or associated with a medical school.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.