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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.

oldsalt1947 | @oldsalt1947 | Nov 1, 2020
In reply to @colleenyoung "Hi @oldsalt1947. Happy to welcome you here in the Parkinson's Disease group on Mayo Connect. Do..." + (show)
@colleenyoung

Hi @oldsalt1947. Happy to welcome you here in the Parkinson's Disease group on Mayo Connect. Do you have Parkinson's disease? How are you doing today? I look forward to learning more about you and your journey.

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Yes, I have been diagnosed with Parkinson a few months ago, I am currently being treated with carbidopa-levodopa 25-100MG, 2 tabs at 8, 12,4,8. Still have off days, in process of getting a scooter with lift from VA. The cause of my Parkinson is the results of chemical exposure while serving as a combat USMC in Viet Nam. Would like to get a u-step walker. The mental trauma of dealing with the disease is still eating at me. I also have PTSD caused by war. Thank you for heling so many people. God Bless.

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ggopher | @ggopher | Nov 3, 2020

Semper Fi. No, I wasn’t a Marine, but I spent 6 months as an Army liaison with them in Danang. Good folks. I have some difficulties with the fact that I survived 18 months there and now the decisions of my own government are going to kill me. So I take each day as it comes determined to do what I can while I can. Fortunately, I’ve not bad enough now to keep me from doing most things but I just can’t do them as fast or precise as I once could - but I’m 75 now and figure I’d slow down anyway.
When I came back I met and almost married a nurse who volunteered at the VA. I saw a lot of guys way worse than I am and they mostly felt the same way. Then I found something I use to this day: I can not control the people and situations around me - I can only control what I do about them, so for today, and only today, I will........... I may not be able to do it tomorrow but I can do it today.
You can do this Marine. Just for today.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 14, 2020
In reply to @sherrieshe "I will be 61 November 24th I started slight jumping and shaking in my left fingers..." + (show)
@sherrieshe

I will be 61 November 24th I started slight jumping and shaking in my left fingers back in 2012 but it didn't happen often so I thought it was nerves. That went on till 2018! Of course it was a little worse each year. Then in 2018 I found it harder to get in and out of my car and much harder to turn myself in bed. I fell when there was nothing to make me fall. My legs would get so tired when walking any distance. Then one day the shakes were so bad I felt like I was shaking inside as bad as I was outside. I went to my family doctor that day. He took one look at me and said I had Parkinson's. He sent me to a neurologist. A brain scan was done but that showed nothing which only helped me to think that it could not be PD. I was prescribed Carbidopa- Levodopa by my neurologist but that made me crazy. He then tried another PD med which was just as bad. I had bad dreams. I would wake up screaming and often woke up because things were flying at me that were not there. When I told my neurologist this he stated "Well the PD meds would not do that so you probably don't have PD"! His comment only helped me to believe my Family doctor was wrong with his PD diagnoses. Right now I am only taking meds for tremors as I refuse to take the others because of the things it does to me and makes me feel. So I feel in my heart it is PD but I am still fighting it in my mind. I live in a rural area in Northeast Pennsylvania so the selections of doctors are very slim here and due to the Virus I have had to cancel 2 appointments in Rochester New York.

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Hello @sherrieshe,

It has been a while since you last posted about the possible diagnosis of Parkinson's. How are you doing with that? Have you been able to get a second opinion or start any medication to help with your symptoms?

I see that you asked me if I had Parkinson's. The answer is "yes." My symptoms are not as severe as some, but some of the stiffness and gait problems can be difficult to deal with.

I would enjoy hearing from you again. Will you post an update when it is convenient for you?

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bastiles | @bastiles | Apr 19, 2021

Can you give us referrals for housing for people who are on a fixed income and need some place to stay while going through the Mayo Clinic in Rochester?

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mshad69 | @mshad69 | Apr 24, 2021

Hi just looking to chat with others who have parkinsons

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1 reply
mshad69 | @mshad69 | Apr 24, 2021
In reply to @colleenyoung "Hi @oldsalt1947. Happy to welcome you here in the Parkinson's Disease group on Mayo Connect. Do..." + (show)
@colleenyoung

Hi @oldsalt1947. Happy to welcome you here in the Parkinson's Disease group on Mayo Connect. Do you have Parkinson's disease? How are you doing today? I look forward to learning more about you and your journey.

Jump to this post

Hi need to chat diagnosed about 6 month ago

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 24, 2021
In reply to @mshad69 "Hi just looking to chat with others who have parkinsons" + (show)
@mshad69

Hi just looking to chat with others who have parkinsons

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Hi @mshad69, welcome to the Parkinson's group. You will meet many helpful and supportive members here like @hopeful33250 @sherrieshe @oldsalt1947 @ggopher @farmerleebs @pspt @edschickel @johnjames and more.

While we wait for others to join the conversation, why don't you tell me a bit more about yourself, Mshad? When were you diagnosed? Are you on any treatment? How are you doing today? What is your biggest concern?

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1 reply
mshad69 | @mshad69 | Apr 24, 2021
In reply to @colleenyoung "Hi @mshad69, welcome to the Parkinson's group. You will meet many helpful and supportive members here..." + (show)
@colleenyoung

Hi @mshad69, welcome to the Parkinson's group. You will meet many helpful and supportive members here like @hopeful33250 @sherrieshe @oldsalt1947 @ggopher @farmerleebs @pspt @edschickel @johnjames and more.

While we wait for others to join the conversation, why don't you tell me a bit more about yourself, Mshad? When were you diagnosed? Are you on any treatment? How are you doing today? What is your biggest concern?

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Diagnosed with Parkinson’s about the 8 months ago. I am 73 married and love to travel hoping I can continue to trvel

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1 reply
mshad69 | @mshad69 | Apr 24, 2021
In reply to @mshad69 "Diagnosed with Parkinson’s about the 8 months ago. I am 73 married and love to travel..." + (show)
@mshad69

Diagnosed with Parkinson’s about the 8 months ago. I am 73 married and love to travel hoping I can continue to trvel

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Biggest concern is what does the future hold for me?

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mshad69 | @mshad69 | Apr 24, 2021

73 year old wit parkinsons wants to chat with others in With partkinson

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