Douglas Savchenko
Forum Replies Created
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For me it is largely caused by a “misunderstanding” of; the medical community, other patients, myself, family, friends and the public. Example, I was at a family event where my brother-in-laws best friend was in late stages with Parkinson’s and had pronounced tremors. When introduced, my daughter said – “….this is my father…. He has Parkinson’s as well…..”. The response from the friend was “….where’s your tremors?” I was diagnosed 5 years ago and still have only light – barely perceptible tremors and rigidity but boy did I get other symptoms in “excess”. We had a “movement disorder/Neurologist” even criticize us for essentially “….wasting her time…” by getting an appointment when I don’t need it. I wasn’t trying to do anything other than find a Neurologist who could help us navigate the problems, medications and other treatments. Like others, I am in my 60s with other physical ailments that can be Parkinson’s related or ? This adds to the doubt and frustration. I hope this isn’t read as a “whiney guy” but having a Neuro-degenerative disease that has so many paths and outcomes is bad enough. Not knowing what trajectory I will follow is scarey and stressful. COVID shut down so many of the support mechanisms available before 2020 like exercise groups, support groups and such and not getting empathy/support from the community I depend on, and expect help from, like Doctors, other patients and such – really causes a huge sense of isolation and loneliness.
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I had fusion at L2-L5 in December. Neurosurgeon told me the reason for Conflict between PD and hardware is that tremors tend to cause early fail. Back to topic I have had a horrible time with accelerated PD. I too now need a walker not just for stability but so I can rest every few minutes. I feel like I am wearing the weight bands they use in Physical Therapy but not just on my ankles. Trying to work with Pain Neuro, PD Neuro and Neurosurgeon on why is what is also exhausting
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Nice to read these because they help me realize – I’m not as weird as I thought. Sorry to put it this way but it’s comforting to know “there are others in the same row boat as myself”. My biggest issue with sleeping is on/off pattern. I started keeping logs and there is no definable pattern, but I will go weeks where I wake up at say 2 am and can’t get back to sleep until say 5 or 6 – nothing helps. Then all of a sudden I go to bed at say 9 and sleep all the night even into the morning say 7 or 8. My wife will even comment “are you ok …you are sure sleeping a lot”. Along with the long sleep nights, I get the most vivid – almost real life dreams that stay with me well after I wake up. This sleep pattern started about a year before my diagnosis and it seems I have tried every drug mentioned in earlier posts.
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I have “wide/flat” feet so need 4E width. I have used Kizik, Skechers, and others but I find the best for me are Step Ins from OrthoFeet. They help me with most issues but the roomy shoe really helps to not aggravate my neuropathy.