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My Parkinson's life is so confusing - this is not easy.

Posted by johnnyvsn @johnnyvsn, Oct 27, 2024

I was officially diagnosed with Parkinson's May of 2019. I have been taking Rytary since diagnosis and can say it really does help me feel "normal", but just for windows of time. Sometimes the windows lasts a very short time, sometimes longer. I am not as sharp minded as I used to be. I just don't understand how my body can feel so bad a lot of the time, then feel normal at other times. Does anyone else struggle with accepting this as just the normal life of a Parkinson's sufferer?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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sunnyduckel | @sunnyduckel | 8 hours ago
In reply to @sunnyduckel "@kshansen actually I can understand other people NOT understanding as I believe it’s something only understood..." + (show)
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@kshansen actually I can understand other people NOT understanding as I believe it’s something only understood through actually experiencing the symptoms that come through personally having PD. That was a very long sentence! I also get GRUMPY. Symptoms are exasperating to endure…

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@sunnyduckel I’ve been using Claude AI to speak to on computer using just a few words to look up something and somehow Claude interprets what I’m trying to find the words to ask with answers and/or questions that require just a minimum of input from me. You may find it helpful somehow.

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sunnyduckel | @sunnyduckel | 8 hours ago
In reply to @sunnyduckel "@sunnyduckel I’ve been using Claude AI to speak to on computer using just a few words..." + (show)
Profile picture for sunnyduckel @sunnyduckel

@sunnyduckel I’ve been using Claude AI to speak to on computer using just a few words to look up something and somehow Claude interprets what I’m trying to find the words to ask with answers and/or questions that require just a minimum of input from me. You may find it helpful somehow.

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@sunnyduckel thereks a free version of Claude at Claude.com

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kshansen | @kshansen | 5 hours ago
In reply to @sunnyduckel "@kshansen actually I can understand other people NOT understanding as I believe it’s something only understood..." + (show)
Profile picture for sunnyduckel @sunnyduckel

@kshansen actually I can understand other people NOT understanding as I believe it’s something only understood through actually experiencing the symptoms that come through personally having PD. That was a very long sentence! I also get GRUMPY. Symptoms are exasperating to endure…

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@sunnyduckel
Thanks, and the other thing that seems to be hard to explain to people is how sometimes I can go from feeling horrible, mostly in gut area to not feeling too bad at all. I know this can be a problem for someone who does not have these mood/pain swings to understand.

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Teresa, Volunteer Mentor | @hopeful33250 | 1 hour ago
In reply to @esther589 "@hopeful33250 I saw a neurophyscologist last week. She said that it's an issue with executive function..." + (show)
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@hopeful33250
I saw a neurophyscologist last week. She said that it's an issue with executive function and she would talk to my neurologist about it. I see the neurologist next month.

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@esther589
I appreciate the update. Please post with any other questions or concerns. Will you post an update after you see your neurologist?

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