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 11:54am

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 10:24am

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 10 6:05pm
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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Moderator
Lisa Lucier, Moderator | @lisalucier | Oct 10 1:24pm
In reply to @brentbg "@evynlouise Hi👋🏼.....I'm right there with you. I feel everything you are going through. I worked so..." + (show)
Profile picture for brentbg @brentbg

@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 9:36am
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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Teresa, Volunteer Mentor | @hopeful33250 | Jul 20 7:41pm
In reply to @wolfplanetzero "Singing loud and proud might also be beneficial. I usually sing positive songs like Sunshine on..." + (show)
Profile picture for wolfplanetzero @wolfplanetzero

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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yvonne53 | @yvonne53 | Jul 20 4:27pm
In reply to @21amy "Has anyone used the inhaler Inbrija for freezing. I am going to try it in a..." + (show)
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Has anyone used the inhaler Inbrija for freezing. I am going to try it in a week or two when I receive it from my specialty pharmacy.

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My husband uses this . It helps with the freezing within 15 minutes after inhaling it. We have some with us at all times. He is in a program and we get it free - very thankful for the med and the program!

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wolfplanetzero | @wolfplanetzero | Jul 18 5:54pm
In reply to @hopeful33250 "Hi @dodeebug, After you try reading out loud for a week or so, would you let..." + (show)
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Hi @dodeebug,
After you try reading out loud for a week or so, would you let me know if you feel that it has helped?

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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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1 reply
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 17 7:17am
In reply to @dodeebug "Thanks I will try tonight. I love to read. Since I took care of dad with..." + (show)
Profile picture for dodeebug @dodeebug

Thanks I will try tonight. I love to read. Since I took care of dad with his PD for his last 2yrs I know some of the problems I am facing. But I do know each person has different problems
Thanks again for your suggestion

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Hi @dodeebug,
After you try reading out loud for a week or so, would you let me know if you feel that it has helped?

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