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Should I know the progression of end stage Parkinson’s? Some people want to know what is around the corner and some don’t. I don’t know if I want to know everything. I do and I don’t.


What do you see as advantages of knowing? Are there advantages of not knowing or should I just cross bridges when I get to them?


I have read some things on Parkinson’s website or WebMD but diseases can vary from person to person and I get confused. Her doctor does tell me things as I ask him but mom is always present and he may not want to frighten her. I don’t want to frighten her. Should I ask him to explain over the phone instead of in person?


Can a doctor kind of know when it’s close to the end stages or when a person is close to death? The ‘waiting game’ creates a lot of anxiety. How do you all cope with watching someone suffer in the end stages of a disease? My dad died in 2002 after heart problems and a stroke and it was different.



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I think one of your paragraphs says it all. There IS no certainty as to what an individual's progression will be with this disease. Some do very, very well for a very long time, and adjust around the symptoms. As with things like MS it is very individual. I love the one who listed the "For Dummies" book, as I love those books for just about every subject on earth. I think that the doctor will tell her that it is a day a time sort of thing. As my Dad's doctor said to my father when he was diagnosed with cancer of the prostate in his late 80s "This is very unlikely to be the thing that kills you". He was right. My Dad went well into his 90s, and it wasn't prostate cancer that caught up with him. So it is just "a day at a time". There are many out there now publicly dealing with Parkinson's disease. Wishing you both the very best. PS, remember also we are all different. I like personally to read everything, scare myself to death, plan my funeral, then move on. Things I don't face dead on keep coming at me in the night.
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NeedHelpWithMom Jul 2019
Thanks for your feedback. It helps.
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The book: Parkinson's for Dummies was very helpful, and not too scary.
I believe it was written by specialists from UCLA at the movement disorders clinic.

Knowledge can actually decrease fear and allow you to be better prepared for all possibilities, some of which never happen.

Knowledge can help you accurately report changes to the doctor so meds or treatment can be adjusted, which may happen frequently in some. Keep in mind, that some patients rally, just when we imagine the worst. This can even happen in the course of a day.

Not every Parkinson's patient is the same, not all experience the same symptoms and not all progress at the same rate.
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NeedHelpWithMom Jul 2019
Thanks Sendhelp,

I really appreciate this information and do understand that I would reduce my anxiety if I feel more prepared. Hadn’t quite looked at it that way.
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