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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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esther589 | @esther589 | Jun 20 1:02am
In reply to @hopeful33250 "@esther589 I appreciate the update. Please post with any other questions or concerns. Will you post..." + (show)
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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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@hopeful33250
I will 😊

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 19 10:00pm
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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kshansen | @kshansen | Jun 19 5:57pm
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
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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sunnyduckel | @sunnyduckel | Jun 19 3:18pm
In reply to @sunnyduckel "@sunnyduckel I’ve been using Claude AI to speak to on computer using just a few words..." + (show)
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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 thereks a free version of Claude at Claude.com

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sunnyduckel | @sunnyduckel | Jun 19 3:15pm
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…

Jump to this post

@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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1 reply
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sunnyduckel | @sunnyduckel | Jun 19 3:08pm
In reply to @kshansen "@sunnyduckel I think I have the same problems and hate to say it but my wife..." + (show)
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@sunnyduckel
I think I have the same problems and hate to say it but my wife does not understand it at times. I know it can be difficult to understand what I'm trying to say. Then I can get over whelmed trying to find the right words that should be simple to come up with other times. Then I know I can get grumpy when I have to reword what I just said.

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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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2 replies
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kshansen | @kshansen | Jun 19 12:41pm
In reply to @sunnyduckel "Yes, I also definitely attribute my lack of recall to Parkinson’s Disease. Also, if someone interrupts..." + (show)
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Yes, I also definitely attribute my lack of recall to Parkinson’s Disease. Also, if someone interrupts me while I’m trying to ask a question, I’m totally confused and can no longer remember what I was saying and/or my train of thought. It’s one of the most frustrating symptoms I endure!

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@sunnyduckel
I think I have the same problems and hate to say it but my wife does not understand it at times. I know it can be difficult to understand what I'm trying to say. Then I can get over whelmed trying to find the right words that should be simple to come up with other times. Then I know I can get grumpy when I have to reword what I just said.

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sunnyduckel | @sunnyduckel | Jun 18 5:25pm

Yes, I also definitely attribute my lack of recall to Parkinson’s Disease. Also, if someone interrupts me while I’m trying to ask a question, I’m totally confused and can no longer remember what I was saying and/or my train of thought. It’s one of the most frustrating symptoms I endure!

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dodeebug | @dodeebug | Jun 17 1:32pm
In reply to @kshansen "@lisalucier Thanks for the quick reply! I would welcome anyone who can offer some help or..." + (show)
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@lisalucier
Thanks for the quick reply! I would welcome anyone who can offer some help or support of any kind.

I'm thinking it would be difficult for someone not having these problems to understand how difficult it can be to deal with it. I also know I seem to have major problems at times putting things in words. Not sure if that is because of the Parkinson's or just my problem explaining things I may not know the proper/correct terms to use for it.

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I can agree with this problem. Believe me it is the Parkinson. I will be talking and just stop and grasp for a word. It seems to be hanging in mid air.

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