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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

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?

@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.

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Hello All:

For many Parkinson's patients, we have experienced a lot of symptoms that are PD related but don't involve tremors, gait, etc. which are more typical of PD symptoms. As I subscribe to Davis Phinney videos, I thought you might find this video interesting as it deals with non-motor symptoms of PD which includes sleep problems, problems with the digestive tract, etc. The title of the video is The Parkinson's You Don't See: Cognitive and Non-motor Symptoms.

Here is the link,

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@sadiecora

sadiecora. My husband has parkinson’s and I posted an introduction and question a few weeks ago. With all the messages on line, is there anyway people are notified and have their email pop up when there is a question or comment? My additional question is anyone having difficulty covering themselves at night? My husband is up a lot at night, too cold, too warm and too uncomfortable. When he gets back in bed and tries to cover himself, he can’t do it and gets cold. Would appreciate any special ggestions.

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@sadiecora Restlessness at night is very common for people with PD. I understand the hot/cold phenomena very well! Here is a video you might find interesting about PD and sleep problems,

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hi this is Dan or jdb I was recently diagnosed with Parkinson's disease and I'm just starting to deal with it I have questions regarding medication exercises and what to anticipate it seems to be a good idea to become a part of this discussion group and I'm totally new to this so I could use some input as to how to get going. I did post something last night and I don't even know how to find it but I'm sure in time I'll get this all figured out glad you have this forum and I look forward to being a member of it thanks.

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@jdb Hello Dan and welcome to Mayo Connect. I'm glad that you decided to become part of our Parkinson's discussion group. Many of our members joined when they were first diagnosed. A diagnosis of PD always comes as a surprise but it is a manageable disease if you keep in contact with your doctor, take the meds and most importantly exercise on a regular basis.

If you could share a little about yourself that would help us get to know you. For example: what type of symptoms were you having that led to this diagnosis; what is the most difficult symptom you are dealing with; do you currently have tremors; what information do you have already about treating PD?

Many PD symptoms begin with a gait problem (drifting to one side when you walk, especially when are tired), also foot-dragging, speech problems, etc.

I look forward to getting to know you and I'm sure lots of our Members will share with you about their experiences as well.

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Hi this is Dan. I'm a 68 year old male that lives in the woods of northern Wisconsin. I have numerous symptoms that led to a decent Parkinson's Disease diagnosis. The diagnosis helped to explain some of the symptoms that I was experiencing in the last, oh actually, couple of years. At this point in time I feel like I am able to deal with the symptoms. Probably most frustrating is the unpleasant reactions to the carbidopa-levodopa medication. Not seeing any positive effects after a month-and-a-half on the medication. Basically feel light-headed, dizzy, disoriented, fatigue while taking this medication. I'm seeing a new neurologist tomorrow and hopefully willl get some guidance on how to deal with this medication issue. Is this reaction to the carbidopa-levodopa uncommon?

I just have minor tremors in my right thumb. I've been doing a lot of research on dealing with Parkinson's. Luckily for me I enjoy vigorous exercise and continue to do that. I'm also looking into starting Big and Loud therapy.

in 1992 I had a serious accident that resulted in numerous fractures in my right leg. This makes exercising more difficult just dealing with the pain and swelling. Though complicated, I'm looking into a knee replacement sometime next spring if I feel that I have a handle on dealing with the PD.

Thanks for your help. I look forward to being a member iof Mayo Clinic Connect

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