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When Parkinson's Disease is a 'Handicap You Can't See'

When Parkinson's Disease is a 'Handicap You Can't See'

Alice Belous is the mother of two adult children, and a poodle. She worked over fourteen years as a school librarian. Now she sells library books and ebooks for the largest book wholesaler in the U.S. and blogs at Bibmomma.

The diagnosis of Parkinson’s disease was determined before she was 50 yrs. old and as an Early Onset patient she tries to continue to be active. Alice loves to knit, nuno-felt and create items from felted wool in her spare time.

A year ago I gave in and applied for a handicap parking permit.  I feel funny using it because I want to “force” myself to walk without rigidity, but that doesn’t happen. I want to “force” myself to walk without stumbling, but that doesn’t happen either.  Like most people with Parkinson’s Disease I have good days and bad days. So far, my driving has not been affected.  I am able to respond quickly and I really don’t drive places other than the ‘hood. Everything like the bank, grocery, drug store and doctors are within a 2-5 mile radius of our home.

But I still feel strange parking in the handicap places.  So, on good days, I don’t. I park in normal spaces and walk, swinging my arms and carefully placing my feet one in front of the other. I haven’t fallen in public in a good long time.

Today we went to eat lunch and then to a “big box store”. I parked in the handicapped place next to the restaurant and when we finished we walked to the store. It was good exercise, but I was jiggling and tremoring my way through the parking lot.  Perhaps I feel guilty about having this handicap designation because my neurologist was hesitant to give it to me. He said that there were people in wheelchairs who “really” needed it more than me. But then my physical therapist intervened and told him that when I travel, or when I’m having a bad day, I really do need it – and he relented.

I hate having to rationalize Parkinson’s disease and my needs to people….most especially my doctor. And I hate being stared at in a parking lot having someone wonder, “is she really handicapped?” It makes this disease much harder to live with, much harder to deal with on a daily basis, and much harder to overcome.

Hopefully folks will realize that there are handicaps that cannot always be easily seen or recognized. I’m just doing the best I can. Let’s just extend some grace to one another – and ourselves.

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