How you cope with the progression of Parkinson's?

Yes, myoclonus is present and the same opinion from neurologist not sure if it is Parkinson’s related.

You sounded in earlier postings as though you had already done a lot of research on Parkinsons, so not sure I can add much. Some of the symptoms you describe here may be related to autonomic nervous system problems that often accompany Parkinson's. https://www.parkinson.org/sites/default/files/attachments/FINAL_Slides_3.26.pdf

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.

Anybody dealing with PD has this experience? learning about dyskinesia, then myoclonus then dysphagia I wonder what is next?
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?

Thank you for your input, however, it does not answer my question.
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.

TChamp, who is always quite negative, says "Parkinson's is a progressive and incurable disease that eventually kills the sufferer after years of a miserable life." I am not in full agreement. Parkinson's is progressive to be sure, but people can function quite comfortably for long periods of time at every stage and many people live for a long time before being in "end stage" disease. How long ago did your husband have the hip surgery? Effects of anesthesia can sometimes last for some time. It's also possible that medications given post surgery could have had an effect. Like you, I'd be suspicious about the sudden decline and would try to get more information about the surgery and post surgery hospital stay, and also ask the neurologist if they can provide more information about what might be going on--maybe also have them review the anesthesia and post surgical meds. Does your husband have swallowing or digestive problems? Might that have gotten worse? People with Parkinson's often have very slow motility (esophogeal and lower) which affects the absorption of carbidopa/levodopa. So, even if there is an adequate dose of medication, enough might not be getting absorbed. I understand there are pumps (duopa) that can help with that problem. Going suddenly to stage 4-5 must be very difficult for both you and your husband. The sudden increase in the non-motor symptoms (apathy, sleeping too much, etc.) is especially worrisome. How's his blood pressure? Autonomic nervous system symptoms such as low blood pressure are common in Parkinson's, and tiredness can be partly caused by low BP. Is he having the sleep disturbances common with Parkinson's (e.g., nightmares, thrashing)? Poor night time sleep leads to excessive daytime sleepiness. Wishing you all the best in this difficult journey.

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.

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!

I wish I could give you good news, but I don't believe in being politically correct and besides, you want to know the truth. My brother, my sister and one brother-in-law suffered from it. They are all dead now, but their lives were a martyry. Parkinson's is a progressive and incurable disease that eventually kills the sufferer after years of a miserable life. They got to the point when they couldn't move anymore and had periods of psychosis and depression brought out by their dementia or from the side-effects of the medicines. My brother and my brother-in-law both, had developed Lewy body dementia. This type of dementia usually accompanies Parkinson's. I'm sorry for your husband. You have no choice but to prepare for the worse.