RETURN TO TABLE OF CONTENTS
Summer 2003 

On the Inside Looking Out
By Karen Burke

Editor’s note: The author, who has Parkinson’s Disease, is the mother of CFIDS Association President & CEO Kim Kenney.

I see life from the same side of the window as you. Although I don’t have CFIDS , my experiences living with Parkinson’s are similar in more ways than you might imagine. You and I face many of the same challenges — and we can draw strength and wisdom from each other as we cope with the illnesses that have so drastically altered our lives.

I started reading about CFIDS when one of my longtime friends was diagnosed with it after many, many years of illness. Betty was one of the few people who understood when Parkinson’s forced me to cancel plans or cut an evening short without much notice. I didn’t need to explain to her why I spent twice as long looking for an up-close parking place as it would have taken to walk from the far end of the lot. And when she’d call at a time when I didn’t feel up to talking, a few words of apology were all that was needed before hanging up.

Many of our symptoms are the same. Betty and I both have problems with sleep — restless legs, night sweats, difficulty falling back to sleep if we wake in the night. Medications seem to behave strangely, with even low doses causing disproportionate side effects or unexpected reactions. I have plenty of fatigue and whole body weakness; I have poor stamina and only brief and unpredictable periods of good function. When my medicine isn’t working properly I am brain-fogged and “jiggly” (my term for dyskenesia or involuntary limb movements). I often get confused and waste precious energy shuffling from room to room, trying to remember what I am looking for. On the other hand, I can recall a childhood visit to the family farm or the first day of 8th grade with impressive detail.

We’re alike in other ways, too. I was diagnosed with Parkinson’s at a relatively young age — 48. Several friends and extended family members questioned the credibility of the diagnosis. (Remember: This was before Michael J. Fox brought better awareness to the fact that Parkinson’s can hit well before the “senior” years.) Because I continued to look pretty “normal,” held on to my nursing job after cutting back to part-time and was still able to travel, it was hard for some to understand that I was dealing with slowly worsening health problems.

Fairly early on, I joined the local Parkinson’s support group. Although I met wonderful people there, I often felt out of place as a middle-aged woman with an old man’s disease. Through that group I learned that many patients and family members feel burdened by the lack of understanding and awareness of Parkinson’s. My father had Parkinson’s and I was a nurse, so I don’t remember ever not knowing about it. I also learned that efforts were being made to change the name “Parkinson’s Disease.” Some wanted a term that was more descriptive; others just wanted to drop the word “disease” because they felt it conveyed contagion.

Finding a celebrity spokesperson was a frequent topic of discussion. At the time it was known that Muhammad Ali and the Pope had Parkinson’s, but they wanted someone even more famous to take up the cause. Of course, Michael J. Fox’s disclosure intensified awareness and support for research. I pray that the same thing will happen for people with CFIDS.

Betty and I have plenty of empathy for one another. Feeling isolated by illness is one of the hardest things to deal with. It’s good to know that it’s possible to connect with someone who shares so many common experiences, even if we don’t share a diagnosis. Neither of us has all the answers for the other, but we gain comfort and strength from our common bond. At least we’re not alone watching the world from the inside.