1. < Parkinson's Disease
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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 | Oct 20, 2025

I also find it confusing. Some days I think I'm doing really well with it and other days can be an exhausting struggle to get through.
I follow all the advice I am given but it seems that no two people share exactly the same experience.
I wish you better days.

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cheryllynn1003ky | @cheryllynn1003ky | Feb 19 8:13pm
In reply to @hopeful33250 "Hello @johnnyvsn I'd like to join @lisalucier in welcoming you to the Parkison's support group on..." + (show)
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Hello @johnnyvsn

I'd like to join @lisalucier in welcoming you to the Parkison's support group on Mayo Connect. You make some valid observations about PD. It is very common to have "off-times" with PD. It is often associated with the wearing off of medication. Have you noticed how long after taking your medicine that these off-times occur?

What you say about movement is so very important. In order to feel your best with PD, exercise and medication are the best combination. I always say that PD is not something that you can take laying down. I would encourage you to find an exercise routine that you can follow several days each week. The more you exercise, the better you will feel.

A lot of YMCA facilities will have "Pedaling for Parkinsons." This is a group exercise program done on stationery exercise bike. There is also Rock Steady Boxing which many PD patients enjoy, and it helps with symptoms. The important thing is to keep yourself as strong as possible. In addition to these exercise programs, you can also find free exercise videos on YouTube. Just go to YouTube and search for exercises for PD and you will find many that can be done standing or sitting.

Do you have a regular exercise routine?

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@hopeful33250
my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or lay down, what is happening to me, most days medication wears off before next dose, I'm on Crexont 4x a day, i just don't know, is it possible to have more of the good days?

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southwest | @southwest | Feb 20 5:25am
In reply to @cheryllynn1003ky "@hopeful33250 my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or..." + (show)
Profile picture for cheryllynn1003ky @cheryllynn1003ky

@hopeful33250
my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or lay down, what is happening to me, most days medication wears off before next dose, I'm on Crexont 4x a day, i just don't know, is it possible to have more of the good days?

Jump to this post

@cheryllynn1003ky
I think it is crucial to be getting treatment from a board certified movement disorder specialist, not a general neuro doc or PCP. In my experience I am having to try out various drugs, to see what works for me. No major successes so far, so I am very familiar with the changes day to day, never knowing what to expect day to day or hour to hour.

There are also new drugs coming out frequently, and your doc has to know about them and be willing o go through the approval with insurance.

Exercise is very important. before I was diagnosed I did not understand what was going on with me, and spent literally years on my back all day, in a recliner etc., because I was so tired. It was scary to get the diagnosis of PD, but at least I know what I am dealing with.

I have also learned I have to fight against the fatigue, make myself move and that helps me feel better, on many days. A specialist doc could get you into parkinsons specific physical therapy, I hope it is available in your area.

I found a youtube channel "power for parkinsons" with many exercises I can follow, including exercises in sitting position. I slow down the videos when I can't keep up, or am learning a new routine.

good luck on this journey!!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20 7:49pm
In reply to @cheryllynn1003ky "@hopeful33250 my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or..." + (show)
Profile picture for cheryllynn1003ky @cheryllynn1003ky

@hopeful33250
my off days are just awful, tremors shaking,electrifying sentions in my whole body,cant sit or lay down, what is happening to me, most days medication wears off before next dose, I'm on Crexont 4x a day, i just don't know, is it possible to have more of the good days?

Jump to this post

@cheryllynn1003ky

I am sorry to hear that your PD symptoms are so troublesome. As @southwest said in her post, it is important to consult with a movement disorder specialist.

Have you asked about a referral for a second opinion?

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