How you cope with the progression of Parkinson's?
This is a question for people with advanced Parkinson's or caregivers.
My husband was diagnosed about 7 years ago, was in his late 60s. First 5 years he had very little progression, nothing ever worried us. Took his meds, did all chores, exercised several times a week for 1-2 hours and we traveled, enjoyed living in different places.
Then it happened late 2020, one night, one quick moment, he fractured his hip, had surgery, went to recovery centre, PT and so on. Tons of tests, doctors, went even out of country for consultations and looking for solutions, all test and consultation showed he is healthy as somebody half his age. This man who was active, did marathons, was hockey coach, CPA and most intelligent person with extensive knowledge and zest for everything, now his neurologist put him from stage 1-2 to 4-5. He walks with walker since then, has all additional conditions mostly associated with Parkinson or levodopa. Does not do anything, no interest in anything, sleeps most days. We know about complications from surgery and Parkinson and so on, but this is not the case. In fact, he had in last few month two back surgeries and no effect whatsoever. Even if hip fracture is serious, we know lots of people who recovered quite well. There is something missing and I am not looking for answers, it is just my intuition telling me there is something that can be done.
So I want to hear from personal experience about progression of disease. It is totally unpredictable and cruel disease. I could ignore it for years until I could not anymore, everything I read from experts is simply telling me all the same which is nothing. I am only interested in real stories.
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Here's links to a bunch of articles about pain and Parkinsons. Neck and lower back pain are specially common. https://med.stanford.edu/parkinsons/symptoms-PD/pain.html
Does your husband have myoclonus? My husband has it a bit in his Parkinson's affected leg. Neurologist isn't sure it's Parkinson's related.
Read somewhere there is about 40 or so symptoms/ conditions associated with this disease.
How about all those other physical symptoms ? Constant back/ neck pain, (two surgeries this year and after 3-4 months back to the same), in addition constant cough, shortness of breath, changes in skin colour, swellings of ankles, constant sweating.
All tests show perfectly healthy individual, no dementia, all tests done.
Question for others with PD, is this normal?
To answer your questions, all those things you described I am well aware of them. I read everything I can find about PD. Every article, book, research about PD.
And no to depression, dementia, blood pressure perfect always. All extensive tests were done, re-done, all good, everything discussed with several specialists, post operation and so on.
i would say some doctors before surgery would not believe my husband had PD, but it was confirmed by 2 neurologists.
Or maybe it started long before official diagnosis and
indeed it is progressing now, he had some symptoms, such as loss of smell and changes in handwriting, but no tremors.
could be something entirely different as well.
Tomorrow my husband is going for extensive appointment and evaluation again with neurologist, don’t think we will find anything new.
Hope somebody will answer my original question if they experience such progression.
Hi OP! I hope you’ll be OK and your husband.
“We know about complications from surgery and Parkinson and so on, but this is not the case.”
You said his Parkinson’s suddenly became worse after the operation.
I have a friend whose family member has Parkinson’s. Fell, broke the hip, but luckily recovered.
I wonder if your husband’s surgery did affect him. For example, anesthesia can sometimes cause irreversible dementia. Dementia can lead to depression (and physical problems).
(I know you say, no dementia. But in the beginning, even if someone has dementia, a doctor won’t be able to diagnose it. The symptoms are subtle. Family notices.)
If he was mentally fit before the surgery, it’s possible the surgery affected him.
In addition: if for example doctors actually did something wrong during the operation, they’ll never admit they did anything wrong.
HUG.
“it is just my intuition telling me there is something that can be done.”
I hope so!
“We know about complications from surgery and Parkinson and so on, but this is not the case.”
You said his Parkinson’s suddenly became worse after the operation.
I have a friend whose family member has Parkinson’s. Fell, broke the hip, but luckily recovered.
I wonder if your husband’s surgery did affect him. For example, anesthesia can sometimes cause irreversible dementia. Dementia can lead to depression.
If he was mentally fit before the surgery, it’s possible the surgery affected him.
In addition: if for example doctors actually did something wrong during the operation, they’ll never admit they did anything wrong.
HUG.
“it is just my intuition telling me there is something that can be done.”
I hope so!