Living with Parkinson's Disease - Meet others & come say hi

Posted by Colleen Young @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.

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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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

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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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@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

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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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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

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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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@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!

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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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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

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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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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

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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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@knightkris Thank you for sharing your story (and your mom’s story) of loss with @johnjames and with the rest of us at Mayo Connect. Loss is a real part of disabling diseases. We not only lose our physical abilities and our strength but we can also lose the company of our friends and family. I suppose that is why I’m such a strong proponent of support groups. Support groups help us to adjust to a “new normal” and give us “living examples” of people who have walked the pathway that we are walking. I know it is very difficult for some people to make that step to attending a support group, some people are “private” but just attending, even if you don’t share or say anything, provides a great place of solace and support. It also teaches us that we are not really alone nor do we have to be lonely. There are others who are willing to carry our burdens with us. Best wishes as you walk this journey of loss. I would encourage you to find a grief support group in your area. You are dealing with many losses right now and the loss of your mom is big one. Best wishes and keep in touch with us. We are “all ears.”

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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 @johnjames. I’m assuming that “Desert Ridge” area is in Arizona? If you could provide a large city, that might be helpful for my research. Thanks!

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@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

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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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Thank you for your insight. This coming month I will be attending my first couselling session at the PD Society of BC Canada. From there and maybe before I will search for a support group in my area. I have attended grief couselling for 6 months, plus other couselling ( couldn’t afford to continue) so I wait.

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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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@knightkris Thanks for letting us know, we will continue to care about you. Keep in touch!

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@elizabethbryant

@johnjames Yes John, it could be me speaking your same words with my Dysplasia, I believe that their
lives have to go on. The isolation is bad for us. I wrote a dear friend this morning of your same thoughts
and everyone seems to run to you as they did this past April upon diagnosis and stay for a time and then
leave. This website is excellent but doesn’t replace friends and family. I do know isolation is the worse
thing, there is a world of people just like us out there that are having the same feelings and those feelings
are very real.

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Thanks for your kind reply @elizabethbryant. I wish you the best in 2017.

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