April is Parkinson’s Awareness Month. So, in an effort to raise awareness of the disease, I want to try to explain some of the main aspects of the disease. In trying to explain Parkinson’s disease to youth, I came up with the following analogy.
Imagine the Sylvia the Train needs to travel 100 miles at full speed to get from Town A to Town B. However, because of a recent coal shortage, Sylvia the Train is only given enough fuel to go 20 miles at full speed, but that fuel still has to be enough for Sylvia to make 100 mile journey. So, Sylvia has to do things to try and stretch out the miles. The engine will not run smoothly. As it tries to conserve fuel, it will shake and sputter along, sometimes get stuck, things inside the train that need power to work will not work too well. She will get to her destination, but it will be a lot slower and not look smooth at all. She is like the little engine that could.
That may be an oversimplification of the movement difficulties we have with Parkinson’s disease. Basically, the brain normally produces a chemical called dopamine. Dopamine affects a number of functions in the brain, including our muscle movements. By the time someone is typically diagnosed with Parkinson’s, they have lost about 80 percent of their dopamine production ability. This why people with Parkinson’s have a tremor, or walk slower, shuffle their feet, etc.
Those are some aspects of the motor functions impaired by the lack of dopamine production in a person with Parkinson’s.
What most are not aware of are the non-motor aspects of the disease. These are things like cognitive changes, mood problems, sleep disorders, fatigue, loss of sense of smell, stomach and digestion problems, speech problems, etc. So, I have been dealing with Parkinson’s’ for 10 years now. A few years into my treatments, my stomach muscles stopped functioning properly. I would take a couple of bites of food and my stomach would cramp and I could not eat anymore. I lost 80 pounds in 10 months. One of the main problems I had as a classroom teacher trying to cope with Parkinson’s was I could no longer manage a classroom with multiple things going on at once.
Another aspect of Parkinson’s disease that is important to understand is that most everyone has it differently. Parkinson’s is often called the snowflake disease, because no two people have it alike. We may have some similar struggles, but rarely do we find people who have all of the exact same struggles. We all react differently to the medications, too.
For too many years Parkinson’s has been depicted as a disease that affects older men. Well, that is wrong. There are many women with Parkinson’s. Men are 1 1/2 times more likely to get it, though. It is estimated that about 15 percent of the people with Parkinson’s get it before the age of 50. There have even been some rare cases of teenagers getting Parkinson’s. All ethnicities can get Parkinson’s.
The cause of Parkinson’s is not yet known, but for the most part it is thought that people have a genetic predisposition to getting Parkinson’s (meaning they have the genetic makeup that has Parkinson’s) and then environmental factors can affect when it appears. For example, my doctors have said I had the genetic predisposition to getting Parkinson’s and then chemical exposures in the Air Force and some traumatic brain injuries brought it on early. So I was exhibiting signs of Parkinson’s, but since I was younger, we ended up going to many specialists for three years, and a couple who said that if I was in my 70s, they would say it was Parkinson’s, but I was too young.
Regardless of who or how we are affected by the disease, in recent years scientists and researchers have learned that forced intensive exercise can actually be as good as some medicines used to treat the disease and can sometimes slow down the progression of the disease.
This subject will be covered more carefully in a future article.
Brian Reedy, a former Carson High School teacher, was diagnosed with Parkinson’s disease in 2011.