Some basic facts about Parkinson’s disease:
- It now affects the old and young.
- It is on the rise among the old and young.
- It is a "designer disease" because it affects each person differently.
- There is no known way to slow its progression at this time.
- Far too many people know little about Parkinson's disease.
- Far too many people, despite the wealth of information available about PD, either rely on what someone says about PD, or do not even bother to check the facts.
- Far too many people are unaware how serious an issue this is on many fronts.
- Far too many people have politicized Parkinson's disease.
- People afflicted with PD must make lifestyle changes that vary from person to person. A task that was once so easy and was taken for granted can now turn into a major production.
- Far too many people do not realize that lifestyle changes must be made even by those with PD who appear to be doing well.
I have young-onset Parkinson’s disease. An annual forum in Washington, D.C. provides me with research, education, and public policy information on PD. It is also one place where I see a growing number of people with PD.
Here in my hometown I have also made this discovery. My advocacy work includes writing letters to the editor as well as articles for my local newspapers. I also contribute by writing to elected officials. This advocacy work, combinded with interacting with people, has introduced me to even more young-onset PDers.
Some things I let people know about Parkinson's disese include :
- Leave a message if I do not answer the phone. I may not be able to get to the phone. Sometimes I have made it to the phone with difficulty and not quite fast enough. No message is left. If you are not prepared or willing to leave a message, please do not call.
- If I am visiting and must leave to go home and exercise do not try to cajole me into staying.
- Realize that I had to leave my job because it was too sedentary. Don’t expect me to sit for hours on end keeping you or a relative company. Or give me a big stack of books to read. Do not give me sedentary things to do when I say I have put limits on them.
- I am thankful and blessed that much of the time I look and am feeling well. However, please recognize that it takes a long time (specifically exercising and taking care of myself) to get that way. I am not yet cured.
- Do not paint with a broad brush and think only older people get PD. Do not look at me like I am from Mars when I say I have Parkinson’s.
- Recognize that a task that is easy for you to perform may be a major hurdle for me.
- Do not pity me. A gentleman who meant well told me of someone in church who had been looking my way with such a look of sadness on his face. That information did not help me feel better.
- Don’t try to help me when I specifically state I can do something. It may be done slower but it will get done.
- Use all the resources that are available to everyone to learn about Parkinson’s disease. Don’t try to learn by word of mouth.
- A cure for PD will lead the way to cure other diseases.
I am glad I waited until the end of this entry to tell you its name—“Selfishness is Good for Parkinson’s Disease.” As I end, I recognize that in all I mention above, I am not being selfish. I am being good to myself.
My daily updates for the month of October are lessons I have learned from Parkinson's disease. That is what they will be titled, along with the corresponding Part 1, Part 2, Part 3, and Part 4. You will find the real title near the end of each blog. I am doing so because the real title may surprise you, and even cause you to not read it. PD has put me in a mood. A little hint: the previous sentence is the real title for Part 4.
- Patti
