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Profile picture for Colleen Young, Connect Director
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.

Profile picture for goatgirl28
goatgirl28 | @goatgirl28 | Jun 11 4:58am
In reply to @hopeful33250 "Hello @goatgirl28 I would suggest that you visit the Davis Phinney Foundation website. They have excellent..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @goatgirl28

I would suggest that you visit the Davis Phinney Foundation website. They have excellent videos featuring PD patients, as well as webinars with movement disorder specialists. You can learn a lot from this website.

It, of course, is impossible to know what you have to look forward to when it comes to Parkinson's. We are all so different in the way our bodies respond to this disorder. There are important lifestyle changes you can make that can help with Parkinson's, including eating a healthy diet and exercising regularly. Tai Chi has been proven to be very helpful for PD patients. Tai Chi exercise videos are available on YouTube for free.

Here is a book that might be helpful for you:
How to Reduce Symptoms Through Exercise, by Kristine Meldrum (Author), Bastiaan R. Bloem (Foreword), & 2 more.

What are your most troublesome symptoms now?

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@hopeful33250 Thank you for your recommendations. I am challenged most by tremors and abdominal clenching. It is tough o exercise when I am curled up on the floor.

REPLY
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 10 8:02pm
In reply to @goatgirl28 "I was diagnosed 2.5 yrs ago and am ready to 'hear' what I have to look..." + (show)
Profile picture for goatgirl28 @goatgirl28

I was diagnosed 2.5 yrs ago and am ready to 'hear' what I have to look forward to. Can you recommend accurate reading material?

Jump to this post

Hello @goatgirl28

I would suggest that you visit the Davis Phinney Foundation website. They have excellent videos featuring PD patients, as well as webinars with movement disorder specialists. You can learn a lot from this website.

It, of course, is impossible to know what you have to look forward to when it comes to Parkinson's. We are all so different in the way our bodies respond to this disorder. There are important lifestyle changes you can make that can help with Parkinson's, including eating a healthy diet and exercising regularly. Tai Chi has been proven to be very helpful for PD patients. Tai Chi exercise videos are available on YouTube for free.

Here is a book that might be helpful for you:
How to Reduce Symptoms Through Exercise, by Kristine Meldrum (Author), Bastiaan R. Bloem (Foreword), & 2 more.

What are your most troublesome symptoms now?

REPLY
1 reply
Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 10 11:36am
In reply to @goatgirl28 "I was diagnosed 2.5 yrs ago and am ready to 'hear' what I have to look..." + (show)
Profile picture for goatgirl28 @goatgirl28

I was diagnosed 2.5 yrs ago and am ready to 'hear' what I have to look forward to. Can you recommend accurate reading material?

Jump to this post

@goatgirl28 - hoping that members here, such as @meg17 @hopeful33250 @boatman12 and others, will share any material they have read that might show you what to expect with your Parkinson's disease.

REPLY
Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 10 11:33am
In reply to @pmm1949 "Hi, I'm a 77 year old woman who was diagnosed with Parkinson's in 2023. PMM 1949" + (show)
Profile picture for pmm1949 @pmm1949

Hi,
I'm a 77 year old woman who was diagnosed with Parkinson's in 2023.
PMM 1949

Jump to this post

@pmm1949 - welcome to Mayo Clinic Connect. How have you been doing since your diagnosis?

REPLY
Profile picture for pmm1949
pmm1949 | @pmm1949 | Jun 10 9:27am

Hi,
I'm a 77 year old woman who was diagnosed with Parkinson's in 2023.
PMM 1949

REPLY
1 reply
Profile picture for emmit
emmit | @emmit | Jun 10 9:20am
In reply to @hopeful33250 "Hello @emmit How are you managing the symptoms of stiffness and soreness? Have you begun physical..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @emmit

How are you managing the symptoms of stiffness and soreness? Have you begun physical therapy for PD or any other medications?

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@hopeful33250
i have been to PT. done with that now but have good exercises to do at home. most of them are pretty simple. the balance ones and simple movements help. I think i need to implement stretching

REPLY
Profile picture for goatgirl28
goatgirl28 | @goatgirl28 | Jun 10 7:23am

I was diagnosed 2.5 yrs ago and am ready to 'hear' what I have to look forward to. Can you recommend accurate reading material?

REPLY
2 replies
Profile picture for meg17
meg17 | @meg17 | Jun 8 4:07pm
In reply to @hopeful33250 "Hello @meg17, and welcome to the PD support group on Mayo Clinic Connect. I can certainly..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @meg17, and welcome to the PD support group on Mayo Clinic Connect. I can certainly understand your difficulty in not wanting to "say the full word." It does take time to get used to a new diagnosis, especially one like PD.

Share, as you are comfortable, a little about your history with PD. For example, how long ago were you diagnosed? What treatments, such as medications, physical or speech therapy, have you tried?

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Madopar 100/25 three times a day + 1 slow release at night..can't say they do much for me 5/6 years since symptoms and formal diagnosis approx 3 years..physio not much results.no speech therapy and just regular neurology appointments..really horrid having it at all but the mouth and tongue is so hard to hide and cope with..

REPLY
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 8 3:11pm
In reply to @emmit "@boatman12 Hello. I was officially diagnosed 3 weeks ago. I have been dealing with various doctors..." + (show)
Profile picture for emmit @emmit

@boatman12
Hello. I was officially diagnosed 3 weeks ago. I have been dealing with various doctors and symptoms since last summer. I'm in early stages and my symptoms are manageable right now. lately its stiffness and soreness. need to try adding stretching exercises. Hope all is well

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Hello @emmit

How are you managing the symptoms of stiffness and soreness? Have you begun physical therapy for PD or any other medications?

REPLY
2 replies
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 8 3:09pm
In reply to @boatman12 "My name is Boat4557 , I was diagnosed with PD about 1 year ago." + (show)
Profile picture for boatman12 @boatman12

My name is Boat4557 , I was diagnosed with PD about 1 year ago.

Jump to this post

Hello @boatman12

How are you doing since your diagnosis? Have you begun any PD treatments such as physical therapy, exercise, or medications?

REPLY
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