As many readers know, I was diagnosed with PD in 2005. Since then, I have been trying to figure out how to make my life better. Due to the progressive and degenerative nature of the disease, what might have provided relief or worked two years ago no longer does. Part of my goal is to share my ideas with other PD patients, their family and friends. However, I do have a selfish goal; I am hoping to find other PD patients who have been proactive in engaging with the disease and discovered ways to ease the pain, increase mobility, or improve their lives in some other way.
I hope over the course of the next several months to cover some or all the following areas of interest to most PD patients:
- Walking and walking aids
- Speech
- Eating, chewing, and choking
- Constipation
- Standing up, sitting down, and falling
- Carbidopa levodopa therapy (series)
- Adjusting medicines when traveling by air across time zones
- The importance of sleep, the difficulty of sleep, sleep aids, and mid-day naps
- Depression and the danger of suicide
- Massage and yoga
- Exercise and exercise machines
- Restless legs, muscle cramps, and pain
- Dreams and hallucinations
As we travel this slope together, I imagine additional topics will find their way into the discourse.
A few years ago, I met a neurologist in an airport lounge. He said, “As a doctor, I often wished I could trade places for just one year with a patient like you so I could feel and experience what it was like to have PD.” He thought it would help him to understand the disease better and have more compassion for his patients.
I replied, “If you know how to do that, I am your man. Even if I could go back for only one year with no disease, it would be wonderful.”
He asked, “What would you most enjoy doing with your disease-free body?”
I could not give much of an answer because the thought overwhelmed me (and I had to catch a plane). However, I thought about it the whole rest of my trip. I decided on a fantasy Saturday morning. I would leap out of bed in the morning, having had an uninterrupted night of sleep. The smell of freshly-brewed coffee would tempt me to chug down a mug of java. Then I would whip up whatever I felt like enjoying for breakfast. After I had read a couple of newspapers, I would slip on my running shoes and go for a long gentle run in Central Park with a lap or two around the reservoir. Finally, I would meet up with friends, indulge in a nice dinner and go dancing. Then I would need four months to hike the two-thirds of the Appalachian Trail I had saved until it was too late. And my list goes on and on. You get the idea. So many simple joys of life are no longer possible.
Finally, remember I am NOT a medical doctor, and I have no medical training. All my university education has been in accounting, finance, statistics, and economics. My 50 plus years of work experience has been in economic analysis, investment management, and related fields. Thus, my blog will be based on my personal experience as a Parkinson’s Disease patient searching for answers wherever I can find them. Many of these ideas came from my doctors, other PD patients, books, articles, and my relentless desire to change my life from one of mumble, stumble and fumble to talk, walk, and dress myself as this disease follows its unforgiving downward spiral. I fully admit I take ideas from wherever I find them. I make no claims of originality for many of the thoughts you will read. However, I have added a few new twists and turns. I am not a scientist, but I understand and believe in the scientific method of creating testable hypotheses and trying to devise data sets that validate or reject the hypothesis. That said, I am a sample of one, and double-blind studies are not possible. Further, it is easy to mislead yourself when you hope for physical or mental relief. If you choose to take this ride with me, please help me if you discover I have erred. If you know of better solutions, share them here. Thank you for your help.
I do not plan on discussing the merits or demerits of any of the Parkinson’s medicines on the market other than what I take and my experience. Also, I do not intend to comment on the continuous flow of Parkinson’s research. I do not have the education or training to comment on either the medicines or the PD research. This blog is about living in my skin and my thoughts as they impact my brain, my heart, and my soul. My goal is to protect my spirit. It is painful to experience, painful to write, and may be too painful for many to read.
I hope it will be therapeutic for you and me.