1. < Parkinson's Disease
Moderator

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

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

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.

marie | @mariemarie | May 17, 2018

I was browsing in a nutrition store today. Asked if there are customers buying anything for Parkinson. He said many Parkinson people buy hemp . Said they all feel great. Anyone on this forum taking hemp? If so, please share experiences.

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Moderator
Lisa Lucier, Moderator | @lisalucier | May 11, 2018
In reply to @melmaury "Hello I am caring for my husband who was diagnosed with PD 8 months ago; his..." + (show)
@melmaury

Hello
I am caring for my husband who was diagnosed with PD 8 months ago; his initial symptom was a profound and severe insomnia--that went on for many months!!!
It's difficult for me to tell this story
Prior to this illness he (and I) led an extremely active lifestyle; we were into avid cycling (both road and mountain) among other sports.
After a long and painful journey in and out of Psychiatry ( MDs were insistent he was having a bipolar illness) we finally were able to see a neurologist and obtain the diagnosis of PD
As of this writing my husband is so overwhelmed with anxiety he can barely get through his day!
We take walks 3-4 times a day ; do other exercises and attend a dance class on the weekends but he and I will tell you he is a shadow of his former self
We both feel since he has started taking these meds his anxiety has increased to the point of craziness
His MDs keep asking us to increase his meds (carbidopa/levodopa and pramipexole) but we both feel these are contributing to his anxiety -- as he is not feeling any relief since he has started them (he started the pramipexole initially several months ago, then the carbidopa/levodopa was added last month.
He tried taking other meds for anxiety but we found them not to be helpful
Prior to this illness he was not an anxious person at all!
To confound this he is now not sleeping very well; of course we are trying to keep the balance of healthy living/mindfulness/low stress/good support all in play here
We are both 62 years old; we live in Northern California

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Hi, @melmaury -- you are on my mind today, and I'm wondering how things are going with your husband and his Parkinson's. You'd mentioned he was having quite a bit of anxiety and that he was not sleeping well. How are things going with those?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 6, 2018
In reply to @pattywelch "Hi my name is Patty. i am 69yrs young. i was diagnosed with Parkinson's Disease 3..." + (show)
@pattywelch

Hi my name is Patty. i am 69yrs young. i was diagnosed with Parkinson's Disease 3 yrs ago. The tremor isn't my issue the stiffness and restless ness is very much an issue for me,

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@pattywelch Hello Patty:

I was thinking about you and noticed that when you posted last month you were discussing stiffness and restlessness. Have these symptoms improved any for you?

I hope that you are feeling better. I would enjoy hearing from you again.

Teresa

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ggopher | @ggopher | Apr 25, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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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Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 24, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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!

Jump to this post

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/

REPLY
ggopher | @ggopher | Apr 24, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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  

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 23, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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

REPLY
ggopher | @ggopher | Apr 20, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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!

Jump to this post

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  

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 19, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@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!

Jump to this post

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

REPLY
beverlyann | @beverlyann | Mar 26, 2018
In reply to @beverlyann "I’m just curious how this works when someone travel 12 hours to be seen by Mayo..." + (show)
@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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