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Living with Parkinson’s, not dying with it

April is Parkinson’s Disease Awareness Month. Parkinson’s disease (PD) is a progressive, neurological disease for which there is no known cure. The motor symptoms of Parkinson's disease result from the death of dopamine-generating cells in the substantia nigra, a region of the midbrain; the cause of this cell death is unknown. Early in the course of the disease, the most obvious symptoms are movement-related; these include shaking, rigidity, slowness of movement and difficulty with walking and gait. Later, cognitive and behavioral problems may arise, with dementia commonly occurring in the advanced stages of the disease. Other symptoms include sensory, sleep and emotional problems. PD is more common in the elderly, with most cases occurring after the age of 50. On average, 1 person in every 500 is affected by Parkinson’s disease. About 10 percent of those people are under the age of 50.

I was diagnosed 11 ½ years ago, at age 47, after experiencing symptoms for three years before that. I have never kept it a secret because the stress that would have resulted from my trying to hide it would only have increased my symptoms. I also felt that it was a good opportunity to educate people about PD, because I knew very little about it when I was diagnosed. Like a lot of people I thought it was a disease of the elderly, until Michael J. Fox came forward with his diagnosis. I immediately went online to learn as much as I could.

Much of what I read was very scary stuff. A friend told me about a Parkinson Awareness annual meeting that was being held at the Vermont Life building in Montpelier, so I went. I met many people who were living with PD and came away with much good information. All of us affected with PD are living with the disease, not dying with it, and that’s the message I like to give to the uninformed. Exercise has been proven to slow the progression and I feel sure that is why I’ve been doing as well as I have. I stay active physically, mentally and socially and it keeps me feeling ready to greet each day with a good outlook. However, as time rolls on, the multitude of pills I take daily (for which I am extremely grateful) need to be increased in order to continue to be able to move well and lead a normal life. DBS surgery (Deep Brain Stimulation) has been available in the U.S. since 1997. Electrodes are placed inside the brain to stimulate the areas which aren’t producing enough dopamine naturally…sort of a pacemaker for the brain. This procedure is looking more and more attractive to me.

A very good thing that has come from having PD is that I have been able to provide information and encouragement for many newly diagnosed individuals in our area and even much further away. Various friends and acquaintances often refer PWPs (People with Parkinson’s) to me and I am so happy to be able to share information about organizations, support groups and helpful websites about Parkinson’s disease for them to look into. I am still enjoying a good life and I try to spread that message. Attitude is important!

Research into the causes of the PD (as it is commonly called) has been stepped up dramatically as a result of celebrities such as Michael J. Fox and Mohammed Ali going public with the disease and the effect it has on its victims. Many, many studies are being conducted around the world in the hopes of finding a cure as well as discovering more and more treatments for the people who are living with PD.

I will be participating in the Five Boro Bike Tour in New York City on May 5 to raise money for Parkinson’s research. If you have been touched by this disease through a family member or friend, consider making a donation to this worthy cause. You can contact me at 767-3391 for more information. Who knows? I may be contacting YOU!

Vivian Branschofsky lives in Granville, VT.

 

 

 

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