Well my dear friends, it has come to my attention that there are some individuals in the group, who have questions or don't much about Parkinson's Disease, and would like to remedy that situation. The wise women on the Coordinating Committee, suggested I write a blog, so as to answer the questions you might have about PD, keep y'all up to date on what's going on with me and my life, plus this gives me a chance to write, which I enjoy. Included on this blog our some old poems, some not so old poems, some political ravings, and a piece of fiction I started writing when I worked at Community Resources for Independence (CRI).
Read, enjoy, and ask me what's ever on your mind, and I'll do my best in responding.
I thought I would start out with a bit of a primer on Parkinson's Disease.
What causes Parkinson's disease?
Parkinson's disease is caused by the loss of brain cells that produce a chemical called dopamine, resulting in low levels of the chemical in the brain. Dopamine is a chemical messenger, or neurotransmitter, involved in passing messages within the brain and from the brain to the muscles. The part of the brain affected is called the substantia nigra, which co-ordinates movement.
The level of dopamine in the brain is linked with the levels of other chemicals, including one called acetylcholine. Low levels of dopamine and changes in other chemicals, including acetylcholine, cause the symptoms of Parkinson's disease.
Why do people get Parkinson's disease?No one knows why some people get Parkinsonease, but genetic factors seem to have a role. People who have a parent or a brother or sister with the condition are twice as likely to get it. In a small number of people with Parkinson's, the disease is inherited.
Certain chemicals in the environment that might be harmful to the brain, called neurotoxins, have been linked to Parkinson's disease. It's possible that people who are exposed to more of these neurotoxins are more likely to develop the condition. Doctors need to do more research on possible environmental risk factors for Parkinson's disease. It is my humble opinion that this is the reason I have PD!
Symptoms
The symptoms of Parkinson's disease often start on one side of the body first and then affect both sides. The main symptoms are as follows.
- Shaking (muscle tremor). This is one of the first symptoms in three-quarters of people, and affects most people with Parkinson's disease. It often starts in the hand with circular movements in the thumb and forefinger. It can affect your arms, legs, and sometimes your head and jaw. The tremor is most obvious when you are at rest, and reduced when you are moving or sleeping.
- Stiffness (rigidity). This makes your limbs feel difficult to move.
- Slowness. Slow movement or an inability to move are common in people with Parkinson's disease. Walking may start with a hesitant step, followed by a shuffle without swinging the arms.
As different muscles become affected, symptoms that can develop include:
- problems with posture and balance - people with Parkinson's disease may fall backwards and have difficulty turning or getting out of a chair
- speech changes - speech may become soft or unvaried
- loss of facial expression - less smiling and frowning, slow blinking
- small handwriting
- problems with swallowing
Other symptoms that can develop are not related to movement. These can include:
- depression - around half of people with Parkinson's disease develop mild to moderate depression
- bowel and bladder problems - constipation is common and there may be a frequent need to urinate
- impotence
- sleep problems
- tiredness
We're sll dying, but do people die from PD? I have heard people have died, and Parkinson's was given as the cause of death.To be more to the point, I believe that people with PD usually die from a side effect of the disease, then from the disease itself. For example: a person might have choked to death, which could happen to a person with PD, because it becomes more difficult to swallow and choking happens much more often if you happen to have PD. To say PD is the reason for a person's death is rather ambiguous, and tells you very little. There are so many maladies that manifest along with the PD, it can make your head spin. Just taking the the amount of medication I do, every day of my life, has a tremendous effect on my entire being. So, as far as I can tell I am not dying from Parkinson's Disease, although it has had a pround impact on my day-to-day life!
Currently, my life is well, status quo. It seems that over the past year the progression of this progressive, degenerating disease, has accelerated. Falling is much more frequent although my days are pretty good, I move alright, although I am pretty much in my manual wheelchair a large part of the day. I don't get out as often as I used to. I choose to stay at home for a number of reasons: 1. I get fatigued much sooner then I did a few years ago. 2. My speech is so soft and so inarticulate most of the day, it's just easier to not have to communicate with anyone. 3. I no longer have a car, and even if I did, i just don't feel that comfortable driving.
Generally, nights are much more difficult. My body is in the "off"`stage more often then on, which means my body does not want to move, I get rigid, and basically uncomfortable. Going to bed has become a bit of an ordeal, seeing as how I cannot move at night, the wheelchair is downstairs, and the bedside urnal is at times difficult to manage. So, we have moved on the the "Condom Catheter", which allows me to sleep through the night without worrying about having to urinate (to much information?). I am not as yet totally proficient in putting the condom part on, so my wonderful partner has taken on yet another care giving activity that she had not planned on.
I hope that gives you all a better idea of Life with Barry. I must admit it does at times become overwhelming, and depressing. Most of you have know me for awhile, and a lot of you knew me when I had a spiritual practice. After many years in the perverbial desert, I found the right fit -- Judaism. It was the right time in my life, and I went for it. After a few years, the passion left, Buddhism took center stage, however, my health was getting worse, and I just could not focus on or maintain any practice. Why am I telling you thiis? Just to put it out I guess, regaining a daily practice; meditation, dharma study, would be a wonderful addition to my program.
What do i do with my day? Hang out on the computer, read books, occasionally watch a movie, I like going out for breakfast or lunch! I love a good game of chess, and on Monday's now, Annie Roberts comes over with her set of "bones" (Dominoes), and we proceed to play some very hot games. So, do not hesitate to write me a question, a comment, praise, criticism, and any suggestions.
And always remember 'If you don't have a sense of humor, it just ain't funny".
Namaste!
"
1 comment:
Dear One,
How wonderful to read your blog! This is a great way to keep connected and give us all a chance to "visit" with you, especially those of us far away. I was very moved by your poem Nightmare in Slow Motion. How scary it sounds. I know good vibes make the body work better and let's hope your upcoming grandbaby will help! I love you very much, Laurie (Loving)
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