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?

@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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@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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@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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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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Hi, @mariemarie — I have moved your post to this discussion with many members who have talked about Parkinson's disease to get your question about whether any of them take hemp for their Parkinson's in front of a good cross section of members. Hoping some of them may have experiences or personal research into taking hemp to share.

I'm inviting @robertlclark @tree2fly @gailb @ou90n93 @doxyjune to join the conversation, as they have all talked about using hemp for a variety of medical conditions and may have some insights for you.

Did the employee in the nutrition store mention for what symptoms people with Parkinson's take hemp?

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@lisalucier

Hi, @mariemarie — I have moved your post to this discussion with many members who have talked about Parkinson's disease to get your question about whether any of them take hemp for their Parkinson's in front of a good cross section of members. Hoping some of them may have experiences or personal research into taking hemp to share.

I'm inviting @robertlclark @tree2fly @gailb @ou90n93 @doxyjune to join the conversation, as they have all talked about using hemp for a variety of medical conditions and may have some insights for you.

Did the employee in the nutrition store mention for what symptoms people with Parkinson's take hemp?

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Lisa, the employee said some PD folks take hemp to sleep.

Liked by Lisa Lucier

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@lisalucier

Hi, @mariemarie — I have moved your post to this discussion with many members who have talked about Parkinson's disease to get your question about whether any of them take hemp for their Parkinson's in front of a good cross section of members. Hoping some of them may have experiences or personal research into taking hemp to share.

I'm inviting @robertlclark @tree2fly @gailb @ou90n93 @doxyjune to join the conversation, as they have all talked about using hemp for a variety of medical conditions and may have some insights for you.

Did the employee in the nutrition store mention for what symptoms people with Parkinson's take hemp?

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@mariemarie Interesting since sleep is a major issue for PD. Teresa

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Where do I get HEMP?

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I have RA. But with RA, there are other issues that pop up. My teeth need replacement. My teeth were PERFECT prior to this year. It may be some other reason than RA. Then being tired all the time. BUT, not tremors on my hands. Talking and maybe a word and it does not come out right. I am concerned the doctors don't know what to treat The drugs for RA are extremely hard on the system. The tremors are not constant. My doctor gave it a name. If I am picking up a cup, or trying to eat with a fork..The tremors will appear. THEN to add to all of the above, I passed out and fell. The fall was a bad one. I hit my head hard and got a black eye and other cuts. They did so many many tests and came back with SUGGESTIONS of my illness. There was NO brain bleed. Everything looked Great. Thank God. I noticed the tremors prior to my fall and for a few years. What else causes Tremors? I stopped the hard drugs given me by the RA doctor. I just cannot stand the damage to my body. I could not eat and was vomiting the entire time on the RA meds.

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@oregongirl

Where do I get HEMP?

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A nutrition store sells hemp.

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My Doctor would call what you have "Essential Tremor". I have it. My hands only shake with I want them to work, like eating or writing. My Doctor said if I was just sitting still and I had a tremor, that was PD.

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