Last fall, my husband went to see a physical therapist for his back problems. He is a retired tile contractor, and years of laying tile floors and running up and down ladders with hundred-pound sacks of sand on his shoulders have taken their toll.
The physical therapist put him through a few exercises, and said, “Al, you have a neurological problem. I think you have Parkinson’s.”
Subsequently, two doctors suggested her suspicions were valid, so we saw a specialist at OHSU in Portland, Oregon. No question. Parkinson’s. Stage 2 (of 5).
In retrospect, of course, we had just never connected the dots. Parkinson’s Disease is such an individual thing. Each patient reacts to it differently. Al had many symptoms, but we thought they were just the effects of aging. The increasing tremor in his hand, we discounted as a “familial tremor,” common to men of his age. His sinus issues at night he contributed to dog dander or dust. Increasing pain in his lower back… well, all that tile work.
Parkinson’s is a progressive degenerative disease that will eventually rob my sweet husband of his robust good health and eventually his memory. All our retirement plans vanished in an instant with that diagnosis, and suddenly what money we had saved for years became redirected for his personal care as his disease progresses.
Resesarcher that I am, I started to learn everything I could about the disease. There is a very active Parkinson’s Disease Support Group in our town, and we go to the meetings to learn what to do, what to expect. There is also a very active Parkinson’s Caregivers Support Group here, and there I absorb the experience, hope, and strength from long-time caregivers who have so much to teach me.
The Michael J. Fox Foundation is a wealth of information, including very well-moderated monthly webinars. This is only one of a half dozen excellent organizations, and there are regional and local resources as well. I am involved and drawing from them all.
I need to learn about this disease, this new roommate, this interloper in our lives, but as Parkinson’s affects everyone differently, I don’t want to look too far in the future. First, because it scares the crap out of me, and secondly, because that is not necessarily how it’s going to be for Al, for us.
Today I’m grateful that he is in good health, and we work toward maintaining that with exercise and good humor. He still fishes, golfs, rides his bike. The only medication he takes so far is to help him get a good night’s sleep. More medication is in his future, and we are not looking forward to dealing with the side effects.
We are re-evaluating the things we want to do: trips he wants to take while he is still able to travel alone, trips I want to take while he is able to stay home by himself, trips we want to take while we are still able to travel together.
The irony is not lost on me that I, with zero patience, end up with a husband with Parkinson’s. But I have discovered that I can have patience. Right now I am concentrating on creating sweet moments for the two of us. That helps me stay on track. I can’t be impatient, bitchy, and resentful while simultaneously creating a sweet moment.
This blog has always been about my life–my life as a writer–and now much of my life is about Parkinson’s Disease. I won’t dedicate this blog to that, but I will post my own experience, strength, and hope as I move through this unexpected chapter.