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.

@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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My neurologist put me on 1/2 escalating to 1  0.6 mg Clonazepam at bedtime and another 12 hours later I guess to keep the blood level reasonably constant and it helps my moderate anxiety. Been a couple weeks and no particular difference though I am still on

the half tab. Hard to move forward after the NY Times article the other day. 

I have also been through the sleep test and have a mouthpiece, no CPAP required.  Later retest showed I was fine with the mouthpiece and that is not the case.

Steve  

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Hello @beverlyann

Here is a link to a video about sleep disorders and Parkinson's. This is from a symposium on PD that was sponsored by University of Michigan, https://www.youtube.com/watch?v=6s4A6HFkjGo&feature=youtu.be

I would like to hear from you again and know how you are doing. Will you post again?

Teresa

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Thank you very much!! I really appreciate you!

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@beverlyann

I’m just curious how this works when someone travel 12 hours to be seen by Mayo Clinic. Does one see a team of Doctors and then determine what all test need to be ordered. And do the test require prior authorization?

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Thank you! They tried that medicine but it didn’t do anything for my mom unfortunately. Thanks for your input!

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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Hi, @ggopher -- wondering how things are going with the Parkinson's, and also how that bucket list of yours is coming along?

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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One day closer to a cure every day.  Honestly, at this point my back causes me more issues. And a sick cat.

Due to my aversion to flying (several incidents in Nam including being shot down and I wasn’t even a pilot) we took a cruise ship to Hawaii.

Five days on the water going over, 5 days touring the islands and 5 days back. Guess which 5 days were rainy and cold? Yep. Had fun anyway. Met some wonderful Brits and we’ll be visiting them at their home next year. Spending a week with my best friend

and his wife on a Caribbean cruise in the fall. Doin’ what I can while I can.

Saw my neurologist a week ago. No increase in Sinemet (1.5 tabs 5x) or Azilect but a few months ago he added a half anti-anxiety pill 2x as needed and it helps a lot. I’d been having some issues with rapid shallow breathing with mental or physical effort.

Can’t imagine why I’d be anxious about anything. I’ve played with timing and it doesn’t appear to cause any issues so I consider life to be Golden right now. Oh, came up a little anemic so added a vitamin with iron timed between Sinemets. Started a probiotic

a few months ago and rarely need Miralax now. 

Now I have no more secrets.... Doing great living on the sunny side of the lake.

Steve  

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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Hi, @ggopher -- a cruise to Hawaii sounds marvelous, the weather notwithstanding.

Glad the anti-anxiety pill is helping.

I wanted to point you to these other discussions on Connect about Parkinson's and mood, if you've not seen them before? If not, these might be of interest to you and places where you'd also like to join in:

- https://mayocl.in/2HpAKlq
- https://mayocl.in/2JjSjzI

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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I got a “page not found” on both and tried manually entering them on my browser with the same result.

Steve  

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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Hi, @ggopher -- not sure why that might be, but no matter. Here are the full links. Hoping this helps:
https://connect.mayoclinic.org/discussion/moods-and-parkinsons-disease/
https://connect.mayoclinic.org/discussion/parkinsons-and-moods/

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@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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I’m already part of the Moods connection though it isn’t very active.

Steve  

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