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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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dodeebug | @dodeebug | Jul 16 4:55pm
In reply to @hopeful33250 "Hi @dodeebug, I love that phrase, "...the word is hanging in the air right in front..." + (show)
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Hi @dodeebug,

I love that phrase, "...the word is hanging in the air right in front of me but my brain won't let me say it." Great description of how frustrating it can be!

There is one thing that I learned in speech therapy is the value of reading out loud for a few minutes each day. While it doesn't necessarily fix all of the speech problems you might have, it makes a positive difference overall.

Will you give it a try and let me know what you think?

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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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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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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)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

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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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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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.

Jump to this post

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?&q=PD+Singing&qpvt=PD+Singing&mid=810E6238E34D59E20AA5810E6238E34D59E20AA5&&FORM=VRDGAR
This video has information about how singing helps and also songs you can sing-along with.

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