Chapter 1, Parkinson’s Disease Journey

English: An IMAX theatre located in the Tennessee Aquarium at Chattanooga.

You notice something. You can’t quite put your finger on it but you definitely feel it in your gut. Sitting together at the kitchen table you notice a slight movement of his head. The fingers tremble slightly.

Thoughts enter your head. Is he becoming sick? Should I make a doctor’s appointment? It disappears from your view and in your mind. Life goes as planned. I help him pick out his clothes. He gets dressed and I make sure he has brushed his teeth. All is complete and I run him down to the Day Program.

This isn’t any normal day program. This is a place for adults with disabilities to hang out. Al, my brother, has the chance to feel independence. He can hang out with his buddies. He meets new friends.

He learns to play pool and how to get along with others. With him basically being with me all the time I feel it is very good for him to have friends of his own. He learns that he can get free lunches if he earns them. He sweeps the floor after lunch  or maybe he will set the table for the noon meal.

Al loves to hoard his money. His idea of money is to keep what he can and spend it on himself. Spending it on others is not in his plan. I have worked with him for years about gift giving and he did give in to my wishes but not with smiles.

Al experienced so much at his Day Program. He was able to go see a movie at the IMAX Theatre. He was able to go to Tampa and see ballgames. He went to zoos and the planetarium. There was usually a specific activity geared for learning and enjoyment each week.

The city that we lived in was so big. There were many businesses that donated tickets. The main one was the Symphonies. Al was lucky to get to hear some great music during these years.

Every afternoon when I picked him up he chattered non stop about what he did that day. I would give anything to  hear that chatter today. To see the sparkle in his eyes. To see the smiles spreading from cheek to cheek.

Al and I usually visited a flea market on Saturdays. He would beam from ear to ear if he found a coca cola item for sale. Al didn’t care if he had several of the same things at home. His mental challenges only allowed him to understand that here was something for sale with the words coke on it.

I tried to teach him about running out of room and not buying the same thing over and over. We made some progress but even today now that he has ventured into the classic car collections, he still has the same desires but we try to work through them.

We always made a point to go out to eat on Sundays. We usually went for supper for his convenience. Al is very structured in his routine. I could count on a bad day if I tried to change things around. He had to have a nap each day. So on Sundays it was routine to get up and go to church. Go home and get something light for lunch. He would watch his TV programs until 2:30 pm and then it was his nap time.

He would sleep until 5pm and then he was up and ready to go to supper. I was always amazed at how he had an internal alarm clock. He knew when it was time to rise in the mornings or from naps with his own built-in clock.

He loved to go to a restaurant called Dutch Heritage. You have to understand one thing about Al. I started caring for him when he was the age of 51 years old. Because he had disabilities and mental challenges his whole life he wasn’t along so many times when the family went out to eat.

It wasn’t, I hope, that Mom and Dad didn’t want him along. I believe that Al just liked time by himself. He had some on going  issues with his Dad and I think he enjoyed the freedom of making his own decisions when he was alone.

So the Dutch Heritage was a huge buffet type restaurant. At first when we arrived there I got up from my seat to start selecting my food and Al sat there. I asked, “What are you doing bud? Aren’t you coming?”

He replied, “I don’t know what to do. I am scared.”  He started to cry and then it dawned on me he had never been to a buffet before. I sat back down and taught him all about buffet style and after our first visit to the place I never had to teach him again when we returned.

He took so much pride in choosing his own foods. I sit here and smile as I think back to how he would fill his plate. It didn’t matter how many times we visited, he ate in the same order. His food was arranged the same each time. He would get ham, macaroni and cheese, cole slaw and mashed potatoes and one big roll.

He only went up to fill his plate once. I think he always thought that if he went back twice he or I would have to pay a second time. After our meals were eaten, the waitress would always come around and ask what dessert we wished for. Once again Al would look me in the eye with his starry eyes and with big pride beaming from his soul, he would make his own choice.

Always the same though out of all the choices. Cherry pie with ice-cream on top. Oh those Sunday memories I have with him. Seeing him learning and enjoying freedom of choice were some of the best times I ever had.

 

Related articles

• April Is All About Parkinson’s (dystoniamuse.com)
• Can Physical Activity be Promoted in Sedentary Patients with Parkinson’s Disease? (medindia.net)
• Early-onset Parkinson’s sufferer takes it a day at a time (blogs.windsorstar.com)
• KC’s TEDMED event will focus on Parkinson’s (bizjournals.com)
• (16) The Michael J. Fox Foundation for Parkinson’s Research (therantingpapizilla.wordpress.com)