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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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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)
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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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@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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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)
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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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@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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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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2 replies
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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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bern7475 | @bern7475 | Oct 11, 2025

You just described exactly how I feel. MyPCP just ordered bloodwork for b12 levels and folate levels and they were both found to be abnormally low. I have a follow up appointment on 10/13/25. From what I’ve read these low levels could be contributing to my overall symptoms. Perhaps you should get yourself checked out. Hope you feel better

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Teresa, Volunteer Mentor | @hopeful33250 | Oct 10, 2025
In reply to @brentbg "@evynlouise Hi👋🏼.....I'm right there with you. I feel everything you are going through. I worked so..." + (show)
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@evynlouise

Hi👋🏼.....I'm right there with you. I feel everything you are going through. I worked so hard on life and the reward doesn't seem fair💔. I don't know how long I can hack this🤦🏼. I was such an active person prior to this and now I'm a scared person. I just wanted to say I can relate🌻

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Hello @brentbg and @evynlouise

I want to join @lisalucier in welcoming you to the PD support group on Mayo Clinic Connect. My PD diagnosis came several years ago, after having symptoms for at least 10 years. I understand that it is one of those disorders that is hard to get your mind around. Though PD is not curable, it can certainly be controlled with medication, exercise, and healthy eating habits.

Will you share about your most troublesome symptoms?

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Lisa Lucier, Moderator | @lisalucier | Oct 10, 2025
In reply to @brentbg "@evynlouise Hi👋🏼.....I'm right there with you. I feel everything you are going through. I worked so..." + (show)
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@evynlouise

Hi👋🏼.....I'm right there with you. I feel everything you are going through. I worked so hard on life and the reward doesn't seem fair💔. I don't know how long I can hack this🤦🏼. I was such an active person prior to this and now I'm a scared person. I just wanted to say I can relate🌻

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Hi @brentbg - welcome to Mayo Clinic Connect. I appreciate your note of compassion and empathy for @evynlouise.

I'm assuming from what you are saying that you are diagnosed with Parkinson's, but please let me know if I've got that wrong.

When you say you can relate to evynlouise, are there particular statements she made that you really relate to? When you talk about working really hard on life, are you talking about being active physically, or other aspects of life?

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brentbg | @brentbg | Oct 10, 2025
In reply to @evynlouise "This is very confusing and I hate that that I have to track everything such as..." + (show)
Profile picture for evynlouise @evynlouise

This is very confusing and I hate that that I have to track everything such as food, when I go to sleep, how much water I drink, whatkind of mood I’m in etc. And 90% of the time you still can’t figure out what is causing the side effects. just when you think you’re starting to feel normal Something else comes up. And it’s generally another side effect I have good days and bad, but unfortunately, I have more bad than good. I have not slept a full night since I got this. Surprisingly though I’m not .I have had to cancel plans at the last minute because of the way I feel. I hate the panic attacks that I get. And I really hate the restless leg, but I have to say is what I hate most is what it appears to be doingto my kids. I’m a single mom and raised my kids alone and was very independent now I have to depend on others. And I can see the worry on my kids faces. The really sad thing is I’m stuck with it. There’s no cure so I’m trying to make the best of it. It’s probably one of the worst things I’ve had to deal with in my life. and I really hate when they say the medication helps you manage the quality of life. I’m sorry I don’t see any quality in
This way of life. Today has seemed to be one of the better days, but that’s always something to change when I take my next dose but day by day I pray it gets better

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@evynlouise

Hi👋🏼.....I'm right there with you. I feel everything you are going through. I worked so hard on life and the reward doesn't seem fair💔. I don't know how long I can hack this🤦🏼. I was such an active person prior to this and now I'm a scared person. I just wanted to say I can relate🌻

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2 replies
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Teresa, Volunteer Mentor | @hopeful33250 | Jul 20, 2025
In reply to @wolfplanetzero "Singing loud and proud might also be beneficial. I usually sing positive songs like Sunshine on..." + (show)
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Singing loud and proud might also be beneficial. I usually sing positive songs like Sunshine on My Shoulders (John Denver) or Here Comes the Sun (The Beatles), or whatever song is stuck inside my head that day such as Our Lips Our Sealed (The Go-Go's). Besides strengthening my voice, singing usually boosts my mood and lessens my worries. Humming could also be helpful. Best of luck to you.

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Singing is a great therapy for PD patients, @wolfplanetzero. Some hospital systems offer PD choir practice. Here is a link to a video from the Parkinson's Foundation about singing,
https://www.bing.com/videos/riverview/relatedvideo
This video has information about how singing helps and also songs you can sing-along with.

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