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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
November 6, 2023
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Answer Summary

Members shared a range of experiences around Parkinson's staging assessments, with many saying they had never been offered one and others... Read more

Members shared a range of experiences around Parkinson's staging assessments, with many saying they had never been offered one and others describing different approaches from their movement specialists and neurologists. Several members noted that staging methods vary widely, with some doctors using the 1 to 5 scale, others preferring terms like mild or moderate, and some avoiding staging altogether. A recurring theme was that while staging can help track progression, many members chose to focus on managing symptoms, staying active, and keeping a positive mindset rather than worrying about a number.

A MyParkinsonsTeam Member

I think trying to figure out what stage you are in is needless worry. The fact is there are over 100 known symptoms of PD. How can you accurately figure what stage you are in? I think the average life expectancy of an adult male in the US is under 80 years old. I think you should talk freely with your movement specialist and keep moving.

November 12, 2023
A MyParkinsonsTeam Member

My MDS says that the"stages" are just for research. If you try to put me in a stage, I am in stage 1 and 2 and 3! My symptoms are all of the above and vary from day to day. I also don't put myself in a box. I do what I have to do, and keep moving. I'll fight until I can't fight any more. And then I'll fight some more. I will continue to do what I can for as long as I can.
Blessings, Karen

November 10, 2023
A MyParkinsonsTeam Member

I have not had an assessment, and I have not researched nor been told what constitutes a "stage" of PD. I personally don't want to know, because I don't want it to "define" me. I am afraid that if I know what "stage' I am at and what comes next, I'll be looking for it and I don't want to live that way. I am dealing with where I am at with PD (diagnosed in 2009, DBS in 2022) and I know it will get worse, but it is what it is and I am doing what I can to keep myself moving and staying positive.

November 7, 2023
A MyParkinsonsTeam Member

Great thinking and self-motivation Les. I was tested right after losing my husband and son and getting the PD diagnosis and now I know the resulting depression effected my testing and staging results so I have little confidence in that number. For me, logging my activity, diet, meds, etc reminds me I am holding onto the high ground in this battle.
I'm thrilled that you have a motivation and measure that works for you. Keep up the drive! You are doing great! Thanks for sharing. It made me remember why I am not driven by the staging and that we are all different, all thrivers and all amazing in our own way,
Find more joy in your day and share it with someone, pets included.
Maria

December 4, 2023
A MyParkinsonsTeam Member

I just focus on how to control my symptoms. Just enjoy your day.

November 10, 2023

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