Tiptoe through the Tulips? Not with Parkinson’s

Rose HiRes

Rose HiResBy 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. 

Spotlight on Parkinson’s Disease

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It’s Parkinson’s Awareness Month and we don’t want to miss our unique opportunity to share information about the disease. We have two authors with the Parkinson’s (and several caretakers who have experience with the disease) on our team, and are proud to contribute to increasing #parkinsonsawareness with the following features.

Adele Pfrimmer Hensley, who has young-onset Parkinson’s disease, has written two books for children who have parents sufferingOcotillo Leaves Front Cover FINAL jpgMarty's Mom  Front Cover from chronic illnesses, like PD.  She wishes to offer a BUY ONE/GIVE ONE special — buy any one of her books and give any one of her books to the organization of your choice.  Just give us the details when you order.  Or contact Adele directly if you’d like a signed copy.  Click here to go to her website for more details on this special from her perspective. 

Her books are available in our bookstore, or email the publisher at writenow@thewordverve.com for more information.

Our second feature for this month includes a reprinting of a short story by the late Alva Harris, with the blessing of his wife and caretaker Donna Harris, called Gray Ghost: My Last Boat. It is available only on eBook and costs just 99 cents. Easy to read and share.  You’ll be happy (through tears) that you did. These are things we all should understand.

TheLastBoat 8DESCRIPTION: A short story about the impact of Parkinson’s disease on one man’s lifelong passion for the water. Includes photographs of the late Alva Harris, the Gray Ghost, and a letter from his wife Donna Harris.

Available on Amazon and B&N.  99 cents.

You can learn more about Alva and his writings at www.buzzardsmyth.com. Alva passed last year at the age of 83, but his efforts to understand PD and contribute to awareness lives on.

We Will Cover You

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