I have Parkinson’s disease. I am not a hero, but a survivor of a number of challenges since 2000. They include Prostate cancer surgery, Rotator cuff Surgery, an acoustic neuroma between the brain and my left ear, surgery for colon cancer and cancer of the bowel, and two total knee replacements. Frankly, I was beginning to think I was invincible. The bionic man could survive anything. Then 6 years ago I developed a tremor in my left hand. Not a slight one but a serious tremor where I could not control the use of my hand at all. I am left handed. One doctor said it could be an acute tremor syndrome, or it could be Parkinson’s. Two other doctors quickly diagnosed it as Parkinson’s.
I knew enough about Parkinson’s to know that it is an incurable condition. Frankly, I was scared to death. What horrible thing had I done in my life to deserve this, on top of all the other rotten episodes I had suffered in the past 15 years (A bad cold and the flu was my history before 2000.)
I had heard that Parkinson’s was a genetic disease passed on through some gene malfunction, so I asked everyone in the family if they knew of another case of Parkinson’s or even a case of what they used to call St. Vitas Dance. All responses were negative. Where the hell could I have contacted anyone with the disease? I was looking for someone to blame. I considered several options. I’m sure you can imagine some of them. I even discussed my options with my Pastor. I told my financial advisor to design a plan for my wife and kids and that he had six months to prepare it. Then I could, in good conscience, make whatever decision I chose. That took place two years ago.
What happened to change my mind in the last two years? (Or maybe I just changed time tables) I have no delusion of ever having an opportunity to receive a cure for Parkinson’s. There is much research, but even if they find a cure, the FDA will not make a decision in my life time. I am 79 year old.
Someone once said “whenever God shuts a door, he always opens a window”. Today, I listened to an inspirational story, about a man who believed that everything comes out for the best. It’s a long story, so suffice it to say that he was proved right after receiving much ridicule.
My son and his wife, began to search for a place where I could go to live, in Denver, where my quality of life in my remaining years would be more secure than living in our home of 44 years in Vail, Colorado. They found a place that would provide the necessities of life, a complete medical facility and a comfortable home for my wife (who preferred not to leave Vail at all.).
Our house sold quickly which meant we needed to move quickly. There really wasn’t much time to lament the pending change; however that catches up to you later.
Now, you have a lot of background, maybe too much. The real purpose of this article is to explain how to live with Parkinson’s, or any other terminal disease. Let me propose some suggestions with brief explanations.
Each neurological disease attacks its host differently. Some have a fast progressing disease while others progress slowly. I believe attitude has a lot to do with the speed of progression. I believe people who dwell on their disease encourage its development. This is reflected on how frequency they talk about their affliction. Or they may be in denial. Either way, I believe the patient loses. I have found since living in a community, with an abnormal number of Parkinson’s victims, that denial is common. For those in denial the disease seem to progress quickly. Those who talk about their disease excessively victimize themselves. It is not the disease that licks them, their problem is their attitude. That also has a negative effect on their loved ones. We’ve all heard how a serious disease can destroy a family, psychologically and economically.
I’m not a doctor, and I’m probably not even a good patient, but I can tell you this. I don’t keep my Parkinson’s a secret, nor do I bitch about it. I accept the disease and I know there is nothing I can do about it. Worrying is only going to break my resistance and aide in speeding up its progression.
I also believe you need a strong goal, or several. If you are familiar with my precious articles, you already know my primary goal. I started an “in-house” closed-circuit radio station in our community, primarily for my own selfish entertainment. The Idea developed fast and suddenly I have found a new meaning to life. I realized our new radio station has helped the sight impaired and well as many others. Why? Because I tried an undiscovered talent that I didn’t realize I had. That station has helped a lot of wonderful people who really needed help. I spend about 40 hours a week on this volunteer activity.
I have other goals as well. I’m writing a two CD educational set on “the History of Slavery”. I have two completed sets already, one on the “Spirit of ’76, Renewed”, and the other on “the History of Old Glory”.
I am also compiling my published editorials over the past 6 or 7 years, and I just finished editing my second novel. Yes, I ‘m busy. I don’t know how much time I have to function normally, so I’m getting as much done as possible.
By the way, I think my Parkinson’s has been in remission for two years. Spiritually, I never felt better. What hidden talent(s) do you have to share to help others?