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.

coachw | @coachwock | 1 day ago

Kari will be having her battery turned on Friday ? For group what is the best sleeping pillow, position etc? Any advice appreciated

Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago

In reply to @vince195 "wondering how the hell; i got this" + (show)

Hello @vince195 and welcome to the Parkinson's support group on Mayo Connect, I see that you have been recently diagnosed with PD. A diagnosis of PD is not easy to think about. Have you begun treatment with medication and exercise yet?

I would encourage you to find an exercise routine that you enjoy and exercise on a regular basis. Exercise combined with medication tend to help the symptoms of PD.

Do you have any other troublesome symptoms?

vince195 | @vince195 | 3 days ago

In reply to @vince195 "wah having sore legs and arm tremors" + (show)

wondering how the hell; i got this

vince195 | @vince195 | 3 days ago

In reply to @vince195 "71 male just diagnosed last month" + (show)

wah having sore legs and arm tremors

vince195 | @vince195 | 3 days ago

In reply to @colleenyoung "Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth: I'd like to..." + (show)

71 male just diagnosed last month

Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago

In reply to @coachwock "I think we’re in the right post just seems like we have to really look for..." + (show)

@coachwock
You have posted in several different discussion groups. If you look at your profile, https://connect.mayoclinic.org/member/00-d84867696dbfc336503373/activity/comments/, you will see the discussion groups where you have posted. You can then look and see what replies you have received. Give that a try and see if it helps you find your replies.

coachw | @coachwock | 4 days ago

I think we’re in the right post just seems like we have to really look for the replies on our post at times

Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago

In reply to @coachwock "Are We Kari and Gary in this group we are trying to understand more of what..." + (show)

Hello @coachwock,

Yes, you are in this support group.

I see that I have responded to you as well as Colleen Young. Are you having any problems seeing the replies to your posts? Perhaps you are asking another question about Mayo Clinic? Please let me know what information you are looking for and I will try to help.

coachw | @coachwock | 4 days ago

In reply to @hopeful33250 "@tntredhead I'm sorry to hear that there isn't a simple answer to the problem. It is..." + (show)

Are We Kari and Gary in this group we are trying to understand more of what Mayo offers we do have an account and have posted items please confirm this Teresa !

Teresa, Volunteer Mentor | @hopeful33250 | 5 days ago

In reply to @hello56 "Hi, I’m Tina. I was diagnosed four years ago with Parkinson’s at 54 yrs old— only..." + (show)

@hello56

Hello Tina,

I am sorry to hear of the difficulties you are having with dystonia. You have mentioned several medications as well as the neuro patch. I'm wondering what other therapies might have been tried, such as physical therapy, etc. As you would like to meet others with dystonia, here is a link to other discussions where members have mentioned dystonia, https://connect.mayoclinic.org/search/?search=dystonia. Feel free to read their posts and reply with any questions you have.

Here is a link to some information from Mayo Clinic's website regarding dystonia and suggested treatments: https://www.mayoclinic.org/diseases-conditions/dystonia/symptoms-causes/syc-20350480. I see that deep brain stimulation is a treatment that is suggested. Has this been recommended for you?

Please know that it is always appropriate to seek a second opinion. Have you considered getting a second opinion? It would be best to obtain this second opinion from a Parkinson's Center of Excellence. Mayo Clinic is one of these centers. If you would be interested in an appointment, here is a link with information on obtaining a Mayo appointment, http://mayocl.in/1mtmR63. If for any reason, an appointment at Mayo is not possible, here is information about other Centers of Excellence in the United States, https://www.parkinson.org/about-us/news/parkinsons-foundation-designates-three-new-centers-of-excellence.

I look forward to hearing from you again.