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 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!

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@trouble4343 Thanks for your encouraging words. That is great that you started your own group. We are stronger together than when we are alone!

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@trouble4343 Thanks for posting about your personal experience with tremors. Perhaps this will help @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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Thank you for your reply.

I have a mild tremor in my right hand only I am taking meds. Levo Carb. It is helping out. It is a you stated, frustrating. The one thing that I did do at the start was to get a second opinion. didn’t believe it myself. I never thought about Physical therapy for PD. No one suggested this to me. I will have to have the doctor refer me to this. I will have to look for a support group. This has been suggested to me, but I never did anything about it. Now is the time to do this.

I haven’t reached out to anyone. As I am strong and can do everything myself NOT.

Thank you for getting back to me so quickly.

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 So glad to be of help. Yes there is physical therapy for PD and it is great. It teaches you how to walk better and have better balance. Many hospitals offer balance classes as well. You can also look for Tai-Chi classes in your community, Tai-Chi is also good for balance. If you go the the National Parkinson’s website you can probably find support groups in your area. Your neurologist’s office also might be able to refer you to a support group! We wish you well – keep in touch and let us know how you are doing. Mayo Connect is a caring community!

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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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I thought we had a group with Theresa.

Steve  

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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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Indeed @ggopher. It’s the same gang of people, with Teresa at the helm. However, formerly the Parkinson’s discussions were mixed in with the Brain & Nervous System group and topics of all things related to neurology. This group or section of the community is dedicated to topics specifically related to Parkinson’s. If you click this link https://connect.mayoclinic.org/groups, you can see all the groups of Connect.

Make sense?

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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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Got it, thanks.

Steve  

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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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I have been diagnosed with Parkinson’s 3-4 years now- really been affected by it the last 2 years, what’s hard to deal with is-most al of my friends and co-workers has stopped coming around or even calling. I would say even my family at times think I’m too needy – about friendships and just being around people- which is also very hurtful to hear from those who ( I know -love me) but at times that doesn’t come out maybe the way they mean it-or if I’m depressed from the parkinson’s. So I have been isolating myself for the last year, not really seeing or talking to anyone and no one seems to pick up on the being alone -issues and think and tell me it’s my fault, which I know it’s not- God know we all need people and real friends- just to be friends. 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 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!

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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, 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.

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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
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

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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 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

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