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.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

@knightkris Dear Kris: I am so sorry to hear of your recent diagnosis of PD. Most of us with PD have these same feelings when we are first diagnosed. We think that maybe it isn't true, or maybe it will just go away. I don't have tremors and many people just tell me that I should get another opinion because they are sure I don't have PD (how frustrating!). However, you and your doctor are the best judges of your reality. I gather from your post that this is a new diagnosis for you, so I'm guessing that you have started meds for PD. Have they helped your symptoms? What about physical therapy for PD? Meds and the right physical therapy can make a world of difference. They help you to feel better and, more importantly, help you to begin to "take control" of the situation. Often times, chronic illnesses leave you feeling out-of-control. Also, see if there is a PD support group in your area where you can meet with others who have PD and share with them. It will also strengthen you for this journey. Please keep in touch with us and let us walk with you through this difficult time. Best wishes and blessings!

trouble4343 | @trouble4343 | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

Finding a support group is a great idea - and if you can't find one, be a part of starting one, You don't need a lot of people. Where I live, there are 6 of us who have PD and we got together and started one. We meet monthly and have outside speakers, or be our own speakers. We look up a topic and tell some of the things we found out about it - like PD and exercise, PD and dementia, PD and legal issues, PD and depression . . . and it's been interesting. There is a national support group for Essential Tremor, too.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

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

Teresa, Volunteer Mentor | @hopeful33250 | Dec 9, 2016

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

knightkris | @knightkris | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

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

Teresa, Volunteer Mentor | @hopeful33250 | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

@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!

ggopher | @ggopher | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

I thought we had a group with Theresa. Steve

Colleen Young, Connect Director | @colleenyoung | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

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?

ggopher | @ggopher | Dec 9, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

Got it, thanks. Steve

johnjames | @johnjames | Dec 27, 2016

In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)

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