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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.

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clearcut | @clearcut | Apr 24 4:54pm

I was diagnosed with Parkinson’s January 2026. I have just started my journey.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 24 3:08pm
In reply to @139108 "I am new to this forum but was diagnosed about five years ago. My first, regular..." + (show)
Profile picture for 139108 @139108

I am new to this forum but was diagnosed about five years ago. My first, regular neurologist as a disaster who gave me no information, expected me to make uninformed decisions, and laughed off PD symptoms--literally! Since then I have seen movement disorder specialists who have been attentive, knowlegable, supportive and great. (Three in all--first one moved, switched sites between second and third due to transportation issues.) They have all been great and I highly recommend that level of care. My progression has been slow and on the whole everything is managable. One thing I have not asked about--I worry that at some point progression will surge. Is there any way to predict that? Is a slower progression likely to stay slow, likely to surge, or who knows?

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Hello @139108, and welcome to the PD support group! I'm glad to hear that you found some good movement disorder specialists. That is important! I'm not sure about the answer to your question about progression being slow or surging. I can only share my experience, which has been slow without a lot of disability.

I've found that exercise is key to maintaining strength and flexibility. Here is a link to an article about the value of exercise in treating PD from the Parkinson's Foundation website:
https://www.parkinson.org/living-with-parkinsons/treatment/exercise

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 24 2:59pm
In reply to @kshansen "@139108 If I'm understanding it correct it seems like everyone with PD has very different problems..." + (show)
Profile picture for kshansen @kshansen

@139108
If I'm understanding it correct it seems like everyone with PD has very different problems and responds to treatment on their own levels.

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This is very true, @kshansen. No two PD patients have the same symptoms or respond similarly to the same treatment. The one thing that is helpful to most with PD is exercise. How long have you had PD?

You mention difficulty moving your legs and arms. There are some great YouTube videos that you can try once your PT ends. If you go to YouTube and search for Exercises for PD, you will find lots of chair and/or standing videos that will help you work on the ability to move different sides of your body at the same time.

One of my favorite YouTube channels is yes2next. While it is not specifically for PD, it is a great way to practice the movements you mentioned and gain flexibility.

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stephwilson1223 | @stephwilson1223 | Apr 24 1:31pm

Hi all,

My name is Stephanie, I am with the American Parkinson Disease Association's Iowa chapter. I am a Gerontologist by trade, and currently do program development for the entire state of Iowa. I wanted to let you know about our upcoming statewide Parkinson's conference on June 5th, 2026 in West Des Moines, IA. If you are not able to be there in person, we have a virtual live-stream option! It is a great day filled with connection, resources, and support. If you have any questions, please let me know!

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katrii | @katrii | Apr 24 1:19pm
In reply to @macbeth "I'm not sure I belong in this group, but I have a friend with PD, and..." + (show)
Profile picture for macbeth @macbeth

I'm not sure I belong in this group, but I have a friend with PD, and I do care.

My husband has Agent Orange related ischemic heart disease, and my gut feeling is that, that has been instrumental in his development of early onset dementia, which I feel is due to ischemic buildup in the small blood vessels to the brain. Although the government has not yet recognized this connection officially yet, one VA comp Doctor believes it will eventually be connected to AO, due to some similarities to PD, but not until after many more years of testing.

From reading what I have so far, my heart aches for people who have this disease. There is so much more to it than I had realized.

I can relate, just a bit, but only in a very limited way, because I have "Essential Tremors" - a genetic gift from my mother's family. The shakiness drives me crazy some days, and, yes, you can see that others wonder what in the world your problem is. So, I can relate, even if only in a limited way. Feeling stressed only makes it worse. I've never understood why people are so judgmental about shakiness. My grandmother shook, my mother shook, I have cousins who shake, and, now, I shake, so I've been seeing it for years. It is such a ridiculous thing to be judgmental about.

I know that there is much more to PD than shakiness. As I said, it just allows me to relate a bit.

I will continue to follow this site, and I send my best wishes to all of you.

Macbeth

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@macbeth I like how you described ET as a “genetic gift.” It truly is! I’ve had mild ET tremors in mostly my head since 1989. I’ve taken Clonazepam since 1990 or 91, prescribed by a Mayo head of Neurology. I will take it forever, lowest dose possible, but it helps calm the inner shakiness I feel at times. My husband’s PD is causing mild shakiness, mostly in his feet while in the lazy boy chair watching t.v. We’re all navigating the best we can!!

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kshansen | @kshansen | Apr 24 12:32pm
In reply to @139108 "I am new to this forum but was diagnosed about five years ago. My first, regular..." + (show)
Profile picture for 139108 @139108

I am new to this forum but was diagnosed about five years ago. My first, regular neurologist as a disaster who gave me no information, expected me to make uninformed decisions, and laughed off PD symptoms--literally! Since then I have seen movement disorder specialists who have been attentive, knowlegable, supportive and great. (Three in all--first one moved, switched sites between second and third due to transportation issues.) They have all been great and I highly recommend that level of care. My progression has been slow and on the whole everything is managable. One thing I have not asked about--I worry that at some point progression will surge. Is there any way to predict that? Is a slower progression likely to stay slow, likely to surge, or who knows?

Jump to this post

@139108
If I'm understanding it correct it seems like everyone with PD has very different problems and responds to treatment on their own levels.

REPLY
1 reply
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kshansen | @kshansen | Apr 24 12:27pm
In reply to @emmit "@kshansen I too am new to this. I've been told that exercise is key to keeping..." + (show)
Profile picture for emmit @emmit

@kshansen
I too am new to this. I've been told that exercise is key to keeping symptoms at bay. when I exercise, I have found that to be the case. I just need to keep at it. Also, I was told to see a movement disorder specialist. I had my first "meeting" last week via zoom and my first in person is in 2 weeks. good luck and try to stay active---but don't shovel any snow

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@emmit I have been going with a PT for a few months. The biggest problem I seem to have with her exercises are where she has me simulate walking and trying to move arms in the opposite direction to the leg on the same time. In other words when I step forward with right foot I'm suppose to have my left arm swing forward. I can do it once or twice but then have to stop and think about it.

Not sure if my insurance will keep paying for this much longer.

As for shoveling snow with low temps in the mid to upper forties don't think that will be a problem until at least middle of October around here

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139108 | @139108 | Apr 24 11:29am

I am new to this forum but was diagnosed about five years ago. My first, regular neurologist as a disaster who gave me no information, expected me to make uninformed decisions, and laughed off PD symptoms--literally! Since then I have seen movement disorder specialists who have been attentive, knowlegable, supportive and great. (Three in all--first one moved, switched sites between second and third due to transportation issues.) They have all been great and I highly recommend that level of care. My progression has been slow and on the whole everything is managable. One thing I have not asked about--I worry that at some point progression will surge. Is there any way to predict that? Is a slower progression likely to stay slow, likely to surge, or who knows?

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2 replies
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emmit | @emmit | Apr 24 8:58am
In reply to @kshansen "I'm new here so hope I don't make too many mistakes! Not sure what the reason..." + (show)
Profile picture for kshansen @kshansen

I'm new here so hope I don't make too many mistakes!

Not sure what the reason I have PD or exactly what caused it. At least for some reason the neurologist I was seeing says that is what I have.

One of my biggest problems is memory or lack of it! Another problem is what I guess I would call gastric, won't go it to details at this point.

The doctor has put me on an exercise program three times a day, basically a set of stretches and walking. No meds at this point and my next appointment is sometime in May.

Mornings are the worst for me. I used to be a guy who could get up at 5:30am and snow blow drive(in winter here in NY) before going to work then come home and do it again when I got home. I understand that as I turned 76 today that might be too much to expect but even a couple years ago I could still manage that and still have energy to do other work.

Now just doing my stretching things are a struggle in morning, late after noon not as bad.

I'll stop right here for now and see if I can be sure to know how to post this!

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@kshansen
I too am new to this. I've been told that exercise is key to keeping symptoms at bay. when I exercise, I have found that to be the case. I just need to keep at it. Also, I was told to see a movement disorder specialist. I had my first "meeting" last week via zoom and my first in person is in 2 weeks. good luck and try to stay active---but don't shovel any snow

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