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Increased Awareness of Parkinson's Disease

Article on Parkinson's. April 9, 2018

April is Parkinson's Disease Awareness Month. I've been posed five questions by the Parkinson Society British Columbia and I'll be answering one each Monday.

The second question is, "Why is increased awareness about both Parkinson's disease and caring important?"

This a two-pronged question—Parkinson's and caregiving—and it deals with two audiences: people who are touched by Parkinson's and everyone else. I'll deal with the Parkinson's audience first.

People with Parkinson's are immersed in the medical system. Some of the doctors they see are specialists in PD, but most are not. This is especially true in hospitals where medical staff may know less about the disease than the patients do. This is not an indictment, just a recognition that there are thousands of medical conditions and nobody can be expert in them all.

Therefore, people with Parkinson's have to make the specifics of the disease clear. For example, medications must be given on time; swallowing is a potential problem; urinary tract infections are common.

It's also important for Parkinson's patients to be aware of the symptoms of the disease. Some doctors are quick to ascribe all medical problems to it. After a podiatrist told my wife that her sore feet were because of her Parkinson's, she said, "Parkinson's is a wonderful disease. Apparently having it means you can't get anything else." Parkinson's patients need to know if symptom x is not typical and to insist on diligent treatment.

Parkinson's patients need to be researchers, hunting for new treatments, therapies, or programs. That means recruiting friends and family. We discovered deep brain stimulation surgery when my mother told us about a news program she'd seen. We found out about a Parkinson's rehabilitation program at Wilfred Laurier University, because we had put ourselves on a mailing list. People with Parkinson's need to understand the disease and its treatment because nobody has a stronger interest in dealing with the condition than someone who is suffering it.

And all this advice is equally true of caregivers. While Parkinson's patients need to persist in their understanding, they need an ally. Someone who, when the disease has robbed them of their abilities to advocate for themselves, will take on that role. That's one job of caregivers: to learn. To enable them to provide effective care as well as to be an advocate for the patient within the medical system.

Why is it important for the public to be aware of Parkinson's? There are two reasons. First, there may be times a Parkinson's patient needs help. But the disease, with its unsteady gait and slurred speech, can be dismissed as drunkenness. Awareness means that passersby can interpret the symptoms as symptoms, not as the signs of a debauched life, and offer help instead of contempt.

The second reason is that Parkinson's needs research funding and support. People who understand the disease and its costs will be more likely to approve of that support.

Finally, like the disease itself, caregiving is physically and emotionally draining. The more that people appreciate its demands, the more likely it is they will sympathize. Like the stranger who gave my wife and me flowers at a coffee shop in the mall because she appreciated what she saw.