Living with Parkinson's Disease - Meet others & come say hi

Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

@royprop

1. Ignorance.
2. I am on carbidopa levodopa.
3. No.
4. Solved constipation by week one. Generally takes four months for gross improvement.

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Hello @royprop,

From your post of yesterday, it sounds as if you are currently taking carbidopa-levodopa along with the thiamine regime. Is that correct?

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@hopeful33250

Hello @royprop,

From your post of yesterday, it sounds as if you are currently taking carbidopa-levodopa along with the thiamine regime. Is that correct?

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Yes

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Is there a place on this site to post my story? Get a list of participants? Thank you.

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@namaste88

Is there a place on this site to post my story? Get a list of participants? Thank you.

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Hello @namaste88 and welcome to Connect's Parkinson's discussion group.

This is the right place to post your story. Have you been recently diagnosed with Parkinson's? I hope you are doing well.
Your post will be read by all of the participants that have posted in this discussion group.

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@hopeful33250

Hello @namaste88 and welcome to Connect's Parkinson's discussion group.

This is the right place to post your story. Have you been recently diagnosed with Parkinson's? I hope you are doing well.
Your post will be read by all of the participants that have posted in this discussion group.

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Thank you. Do I post my story here?

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@namaste88

Thank you. Do I post my story here?

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Yes, @namaste88. Post it right here.

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@namaste88

Thank you. Do I post my story here?

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Hi, @namaste88 - I'd like to add my welcome to @hopeful33250's.

If you click VIEW & REPLY in this email notification, you can scroll back through the past and recent posts in this discussion on living with Parkinson's.

Will you share your story with Parkinson's: when you were diagnosed, what symptoms may have led you to seek a doctor, any challenges you might be encountering now?

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@lisalucier

Hi, @namaste88 - I'd like to add my welcome to @hopeful33250's.

If you click VIEW & REPLY in this email notification, you can scroll back through the past and recent posts in this discussion on living with Parkinson's.

Will you share your story with Parkinson's: when you were diagnosed, what symptoms may have led you to seek a doctor, any challenges you might be encountering now?

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I started my story yesterday, with a "more later" ending. I promise to finish it soon.

Thanks, Lin

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@namaste88

I started my story yesterday, with a "more later" ending. I promise to finish it soon.

Thanks, Lin

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Hi Lin (@namaste88), I see that you summarized some of your story in your profile https://connect.mayoclinic.org/member/181600aa003b5fe59e52315e9c3eafd834c74440fd/ We look forward to getting to know you better and learning more about you.

You mention that one of your biggest challenges at the moment is not sleeping well. You may be interested in adding your thoughts to this discussion:
- Parkinson's and Sleep Problems https://connect.mayoclinic.org/discussion/parkinsons-and-vivid-dreams/

I can imagine that it is frustrating not to be able to make plans as you're never sure how you might be feeling. Have you found that family and friends are understanding if you have to cancel plans? Do you have things you like to do when you're feeling well that don't require planning - like a friend who can drop everything to come over for a cup of tea?

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@namaste88 Hello Lin,

I just read your profile and see that you have been recently diagnosed with Parkinson's (PD). I'm glad that you posted here. I see from your profile that sleep problems are most troubling right now. In addition to the link that Lisa, @lisalucier, provided I would also like to direct you to a Youtube video about sleep problems as they relate to PD patient. Have you tried any meds to help you sleep? Some of us have been helped by low doses of antidepressants, like Trazodone and Cymbalta. Also, exercise is an important factor in dealing well with PD. It helps with movement and maintaining balance as well as helping you sleep. What type of exercise program are you involved in, @namaste88?

Here is the link to the video that was produced by the University of Michigan at one of their Parkinson's seminars that I attended. I hope you will find the information helpful.

https://www.youtube.com/watch?time_continue=222&v=6s4A6HFkjGo
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