This is a personal story involving the growing movement of human social and civil rights surrounding #medication and so-called "mental" health movement under #prescribedHarm - please know the result is not the goal for most but just for me as a complex palliative care patient.
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I went through 17 years of misdiagnosis which ended up being Parkinson's. One doctor who specializes in movement disorders at Kaiser set my Tremor was like Parkinson's, but too fast. He prescribed clonazepam.
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I Parkinson's doctor tells me the number one reason for a Parkinson's patients to go to the ER is because of falling. Apparently one of the side effects of clonazepam is falling. For the six months I took it I fell a lot.
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Another doctor gave me a drug that turns into a narcotic in the bloodstream. I couldn't even walk down the short haul away from my bedroom to the bathroom without hitting the walls. I guess the reason why doctors called a practice it's because they're still practicing.
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When I was finally diagnosed with Parkinson's, because of the many missed diagnoses diagnosis I didn't believe the doctor. I ended up getting a very expensive test five months later that confirmed the Parkinson's diagnosis.
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I take carbidopa/levodopa for my Parkinson's. Since Parkinson's is incurable it is a palliative drug that reduces my symptoms most of the time. Since Parkinson's only gets worse every so often I have to increase the number of doses I take during a day.
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Have you talked with a palliative care specialist at all? They are very hard to find and reach very few people at this time. Your condition and situation qualify. It's about your decisions, not the doctors on quality of life for YOU to decide,
Jan 25, 2023 · 9:28 AM UTC
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