Ken Aidekman
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Parkinson’s is NOT funny.
The things that happen to us every day in life can be absolutely hysterical.
One of the first lessons I learned about PD was that having a good sense of humor gives you a significant advantage.
PD effects so many aspects of our lives. I would go bonkers if I took it too seriously. We’re on a whole different ride in the carnival. Better to laugh than to let it get you down. Humor is also an important way to stay socialized. Face it, your masked face and quiet demeanor aren’t winning you sympathy points.
Ken
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Yes, I participate in a support group. Thirty-five years ago there were a lot fewer support groups. Awareness about PD and its symptoms was quite low. At the same time lot’s of research and new medications were available and pwp’s needed that information to share. We used to call it an “invisible” disease. Many people were not aware of the value of support groups even if they might be near one where others were getting help.
I enjoy my support group mostly for the speakers they bring in to talk about various subjects regarding PD. A lot of friends have been made over time because people with PD generally feel comfortable talking with others with PD.
Support Groups are not all roses. Young-onset PWPs are often depressed by the shape other members are in after many years of having it. Also, many in the group are taken there by care partners who may vent about what a burden it is on them to take care of their loved one. Still, given the choice of isolation versus reacting with a community I’ll take the later every time. It is vitally important for us to stay active within our group of friends or make new ones because we are social beings and isolation is not good for our health.
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I enjoyed learning about research on the brain when I was in college. It came in handy when I learned my dad was diagnosed in 1975 and his father had PD before him. Now it’s three generations and counting.
I read what comes into my mailbox and that’s plenty. Today I turned 70 and still want to (and must) learn as much as I can. But, my poor memory and cognitive chalenges make this more difficult than it used to be.
The brain is the most fascinating thing in the universe. If you have PD all the more reason to keep up with neuroscience research.
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We have Mooka, our seven year old Whippet. She has black and white spots much like a cow. Mooka helps me with my Parkinson’s by taking me out for daily 2 mile walks. I don’t know who enjoys the Walk more. Mooka gets all excited at the beginning pulling on her leash and sniffing everywhere. By the second mile she tires enough to walk along side me. Then on the homestretch she starts to drag due to all the hot weather.
Mooka is also a championship napping dog. I appreciate that because with PD I do a fair bit of napping and she keeps me company.
Ken
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Yes I struggle with anxiety and depression. I’ve been generally depressed all my life. I had one episode of clinical depression when I was 19. I benefited from psychiatric counseling and electroconvulsive therapy.
During my clinical depression I learned that my father had a similar episode and I was seeing the same doctor he saw some 15 years earlier.
Since taking Venlafaxine my depression is under control for the most part.
Around 2015 I began to have episodes of anxiety and mild panic attacks. I now believe these were early Parkinson’s symptoms. I was diagnosed with PD in 2019. Looking back at my father’s PD diagnosis and symptoms he faced I also believe he suffered anxiety as a PD related symptom along with life-long depression.
I have made significant progress in dealing with my PD related anxiety. I’m fortunate to have an understanding wife who helps me face my worries and very good advice from friends who have lived with PD much longer than I have. They told me that my number one priority in treating PD should be to reduce or alleviate stress. Since concentrating on that aspect of my disease I’ve been able to gain better control over my symptoms.
Good luck.
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I believe my Parkinson’s was a combination of genetic and environmental factors. My father and grandfather had it. So it likely has a genetic component. No one else on my father’s side had it though one of my Dad’s brothers and his sister had Alzheimer’s.
The environmental part is a big question mark. My father grew up on his father’s dairy farm with well water and I’ve lived in two houses over the last 25 years with well water. I wouldn’t be surprised if the air pollution in New Jersey had a contributing effect. Thankfully, that’s been reduced.
As a kid I loved building model cars which included spray painting them in the basement with no windows open. I was exposed to DDT spraying on occasion. I’ve also enjoyed time outdoors in the summer but am sensitive to topical chemicals. I sprayed myself regularly to keep from getting bitten by mosquitoes and horse flies.
Sometimes I think that our environment is so filled with artificial toxic compounds that we can’t help but be exposed to something that triggers PD eventually. If only I hadn’t breathed or eaten over the last 60 years! We live in a dangerous world. I consider myself lucky to have made it this far.
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I have not undergone Deep Brain Stimulation but have followed developments in it for a long time.
I’m surprised the medical team that organized and performed the surgery did not tell your father that he would be able to take a lesser dose of Levodopa once his stimulator began working. Many people need less than half their dose before surgery.
Dyskinesia is generally a side-effect of longterm Levodopa use. I’m in an early stage of PD so I haven’t experienced it yet. But many people with PD experience it within 5 to 10 years of taking Levodopa. After a certain number of years increasing doses of Levodopa are needed. Dyskinesia can be a side effect of taking too much Levodopa as PD progresses. The bottom line is that having DBS lower the amount of Levodopa you have to take reduces your dyskinesia while ameliorating certain other PD symptoms.
The more symptomatic relief you get from Levodopa, the better your chances for successful DBS surgery are.