Tiptoe through the Tulips? Not with Parkinson’s

By thewordverve author Adele Pfrimmer Hensley:

April is Parkinson’s Disease Awareness Month. It is not a cause for celebration, but it is an occasion to remember, to learn, and to hope.

We remember that Parkinson’s disease has never brought with it an automatic death sentence. It used to be even more disabling than it is now, before the discovery of a useful formulation of levodopa.

This winter I met a woman who said she remembered visiting her grandparents when she was little. Her grandfather was in the Army when he was stricken with Parkinson’s disease. He spent twenty years at Walter Reed Army Hospital. Her grandmother rented an apartment nearby. She visited him every day that she could.

We remember Alva Harris, author, professor, biologist, and outdoorsman, who died last year wishing there was more his doctor could do to relieve the disabling effects of his end-stage Parkinson’s disease. His doctor indicated he was holding something back “for later.” Alva wondered what a person had to do to communicate that there was not going to be any time “later”—this was the end.

We all need to become aware of the impact untreated Parkinson’s can have on a person’s health. One very common early symptom of Parkinson’s disease is chronic constipation. Lewy Bodies, the plaques of proteins that often clutter the brain in the late stages of Parkinson’s are also found in the intestines in high concentrations. Another seemingly unrelated symptom is that a person’s person’s breathing can be compromised by rigidity in their torso caused by Parkinson’s disease. If a person’s overall health is compromised but nothing seems to be wrong, it may be time to consider that Parkinson’s could be the cause.

Fine, you say, but that sounds pretty nebulous. After all, Parkinson’s disease is not easily diagnosed. No it is not, but there are a few diagnostic characteristics of Parkinson’s disease for which you could look. I am confident that my own case of Parkinson’s disease could have been diagnosed a few years earlier if someone who understood Parkinson’s had seen me walking. Two or three years before I was diagnosed, I was walking with a stooped posture and with my left arm bent at a ninety-degree angle, tucked into my side. If my neurologist saw me walk in those early years, he never saw me walk long enough that I assumed this characteristic posture of the disease.

Parkinson’s disease can be devastating. There is no cure. The best drug for treating symptoms is over forty years old. The disease gets worse the longer a person has it. Where, then, is the hope? Where can something be found that will stop the progression of Parkinson’s? I think we can look in two directions for help: research, which gets closer to finding a cure every year, and exercise. Vigorous exercise is the single best thing people with Parkinson’s disease can do for themselves every day to stay as healthy as possible and, perhaps, reverse the effects of the disease.

That exercise part is especially important because it is something you can do to help yourself. It is something with no side effects. It provides mood-enhancing endorphins. It can make a bad day better. It can fill you with the courage you need to be your own advocate. You will need to clearly communicate with your doctor just what you need when you need it, so you do not have to approach the end of your life wondering if there is something being held back “just in case.”

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Purchase Adele’s children’s books about Parkinson’s disease:  Monica, Mama, and the Ocotillo’s Leaves and How Marty’s Mom Became a Cyborg at our Bookstore.