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

Posted by johnnyvsn @johnnyvsn, Oct 27 9:23pm

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?

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eliz722 | @eliz722 | Nov 1 10:58pm

I was diagnosed with PD 2021. I am now taking 6 meds for the disease. Two were recently added. I can appreciate your frustration w/ the disease. My "ON" & "off" times seem so variable. I feel like I am alternating between tremors & dyskinesia. I feel worse when I have a lot of dyskinesia.
Exercise does help. I do Rock Steady Boxing. I never thought I would be hitting a boxing bag. It feels good. The social aspects of being int this group & getting out interacting w/other people is beneficial. Through my Rock Steady Boxing group I am more aware that there are other people with PD who have other challenges that they are dealing with. When I don't do Rock Steady Boxing I try to do the Zoom Parkinson exercise classes
I also see a therapist & take a low dose of an antideprresant. My therapist is helping w/my attitude of the glass being half full instead of 1/ 2 empty.
PD is a challenge. When I feel "on" I can do anything. When I am "off" it is difficult to move. I am learning that there is no "normal" PD. It is very variable. Good Luck. Try to find the good things in your life.
FYI I had 3 free samples of Inbrija. In the beginning it seemed to help. Later on I felt no benefit. I discontinued it. It would have been very expensive with my medicare plan.

johnnyvsn | @johnnyvsn | Nov 2 7:37am

The words you wrote, (My "ON" & "off" times seem so variable) and (when I feel "on" I can do anything) describe me exactly. I lack the skill to put my feelings to words effectively. One reason I used the word "confusing " is I can at times feel so wonderful, then other times feel so feeble and old. It has seemed to affect my cognitive thinking, which is embarrassing and difficult to admit. I think my healthcare provider has possibly found a "livable" medication dosage and schedule. I realize there is no magic cure. Thanks for wording similar feelings.

Teresa, Volunteer Mentor | @hopeful33250 | Nov 2 10:12am

Many of you may already be familiar with the Davis Phinney Foundation Parkinson's. They have regular webinars and panel discussions. I thought that many of you might find this panel discussion interesting as a PD patient talks about his journey with PD. Here is the link to the program,