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.

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.

@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

@johnjames Thanks so much for sharing with us the difficult place that you find yourself in right now. I appreciate your honesty. I’m sure that you are hurting right now. Because Parksinson’s is a brain disorder, there is an emotional component to having PD.When you say, that it’s not your fault, you are right, it is most likely a brain chemistry problem. I would encourage you to talk with a doctor about how you are feeling. There are some good meds that help deal with the brain chemistry problem that Parkinson’s causes.. There are a lot of different meds available, if one does not work you can always try another. I am hopeful that once the meds help the brain chemistry problem, you can then begin to get out with others. This might include a support group, an exercise class (water exercise is very good) and you will begin to feel better. Keep us posted on how you are doing. At one time those of us with PD have been where you are and we know the road out of isolation and depression is not an easy road to travel, but once you begin the journey you will be so glad that you did. Best wishes, my friend!

REPLY
@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 JohnJames, Thanks for having the courage to reach out when your instinct is to isolate yourself. I’m bringing @trouble4343 into this conversation because she, too, has experience with Parkinson’s and managing mental health.

REPLY
@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

@johnjames
I totally understand. The same thing has happened to my husband, who has dementia, and myself. Friends, and most family, have done the disappearing act. I saw the same thing happen with my parents – who had been VERY involved, social people – when my father had Alzheimer’s.

I’m not sure what that is about. A lot of people who are relatively well just don’t want to deal with illness – even the ill person’s children, often do not want to deal with it. I also think that many, if not most, people in our society, get pretty freaked out about anything that effects the brain, cognition, functionality. There is a real lack of maturity in many people when it comes to those things.

If you could become involved in a support group, at least there would surely be others who have the same situation as you do, who would understand what you are going through, and may even have some helpful suggestions, or may be interested in having coffee some time. I’m still working on this myself. It may not be our preference, but, at least, it is something, and it is a place to start.

Wishing you strength and success.

Macbeth

REPLY
@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

Thank you for sharing- right now I’m at the complete ” burned out level” in time I’m sure-as you said it will get better, it’s hard to believe friends and family -after 20-30 years turn the other way. WOW- Thank God He doesn’t HOOAH

REPLY
@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

I have been looking for a support group- and not been real sucessfull in that area, it me I’m sure, being a retired soldier after 40 plus years-it hard to be around allot of people. Hope that doesn’t sound like a cop out. Thanks much JJAMES

REPLY
@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

@johnjames
No, it doesn’t sound like a cop-out. I’ve always been pretty quiet and inward, and it’s difficult for me, too – also with family, some of whom I’ve fallen away from over the years, too. I get it.

Best wishes,

Macbeth

REPLY
@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

johnjames, Colleen connected your name and mine, I think because I have been involved in the PD/mental health combination for quite awhile: Bipolar Disorder for some 40+ years and PD for who knows how long. I think of them as the two “rulers of my life” – and I am not always sure which one is on top. We talk about stigma a lot with mental health, but what PD people ‘receive’ from their friends is about the same thing! Really the only thing you can do is get to the point where you know “you are the one in charge of you” and what the others think is really their problem. It is easy (and I know it first hand) to pull back and just remain alone, but being the ‘only one in charge of you’ when you pull back, the ‘only one you are hurting” is also your. Want to talk more, just let me know! Trouble4343

REPLY
@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

@johnjames You are right! He does not turn the other way, He is always there! I have no doubt that you will have the courage to walk through this valley as you have walked through so many others. (Also, if you give me the general geographic area where you live I might be able to find a PD support group and then you can make a decision to go when you feel ready.) Blessings!

REPLY
@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

Thanks- I live in the Desert Ridge area, and looking for a group that starts after 11am. I can’t get moving until that time, the body just doesn’t work. Thanks again JJAMES

REPLY
@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

Hello JohnJames

I do understand very much what you are going through. I took care of my mother for over a dozen years and through out that time, all of my friends stopped talking to me. My mother’s family, the rest of them, including my sisters, stopped coming to see mom or just came once in a while. My answer has always been, buck up, it is your mother and to bad if you don’t want to see her that way. Get a grip.

But during my mother’s last years of life I was diagnosed with PD,then the next year I was diagnosed with Fibromyalgia, then this past year diabetes, This past January is when my mother passed away, So I am dealing with this loss as well. This compounds the situation further. . Plus everything else that was wrong with me before these diagnoses. Between my mother and my friends thinking that I could be making better use of my time, ( Taking care of my mother was the biggest gift I could of every received), car accidents and everything that has happened since, I don’t have any friends left.

I know what it is like to be alone, I have experienced this allot in my life.,But being lonely, this is something different. This I can’t get use to. I think it is everyone’s loss that they can’t deal with these issues. It should bring people closer, but most are afraid of things they can’t understand. They are afraid of their own mortality. Again their loss.

John if you need to talk or write in this case, feel free to do so. I do understand what you are going through.

Kris

REPLY
Please sign in or register to post a reply.