Parkinson’s Disease has many aspects that are hard to deal with, like a tremor in your dominant hand or freezing when you get nervous and need to get somewhere in a hurry. However, the emotional part involves all of us and is probably the hardest thing to deal with.
This is a problem to begin with: you have to accept that you are saddled with a disease that no one really knows much about. They don’t know why one person gets it and someone else doesn’t. You can get it, but you can’t catch it. They surmise a lot, but the truth is they don’t know. That’s scary to begin with, so you have to deal with that, right out of the gate.
You start out feeling well and you think, “This isn’t so bad.” They tell you that exercise will keep the symptoms down and you exercise as hard as you can and try to be as positive as you can for the situation you’re in. And then you start having problems with walking and talking and you finally realize that there is more to PD than you thought. You want someone who has the disease to talk to and make you feel a little better about your circumstances. You need someone else who’s in the same boat you are.
Some doctors will tell you, “The disease won’t kill you, but you do have to learn to live with it and it won’t get better, it’ll only get worse.” So, they give you the pills, which will only work for so long and then they become ineffective. Then, basically, you’re screwed if you’re as old as I am because the only other thing they can do is a deep brain stimulation on you and that only goes for people who are under 75.
Then comes the really hard part for a person who has always been very independent. You have to learn to feel good about yourself when someone has to hold your hand so you can get around without falling or getting in people’s way. You have to deal with the stares that you get as you balk at doorways and lines in the pavement or tight places (in other words “freezing.” You may think. “I wouldn’t mind a little freezing right now.” Wrong! Wrong kind.) That’s where positive thinking comes in. The more positive you can be, the better you’ll feel. You have to think yourself better. It really works if you keep it up, but we all need support. This is where the support group comes in. We all need support.
This is a disease that is as different as the people who have it. No two people have exactly the same symptoms and that makes it all the more important that you find a support group to meet with. You can see that someone else has problems too, and they can feel for you even if they don’t have the same problems you do.
There is such a group in Globe. We meet at 10 a.m. on the first and third Fridays of the month (the next meeting is Aug. 17) at St. John’s Episcopal Church, the little A-frame building on the corner of Hill and Oak streets. If you have Parkinson’s or know someone who does, come meet with us. We’ll welcome you.
