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

Hi @dystonia, many people with Parkinson's also experience dystonia. Perhaps that is why you were attracted to a side topic of dystonia within the Parkinson's Disease support group.

Dystonia discussions can be found in the Brain & Nervous System support group here: https://connect.mayoclinic.org/group/brain-and-nerve-diseases/

here is the link to the Dystonia-specific discussions:
- Anyone dealing with Dystonia? https://connect.mayoclinic.org/discussion/anyone-dealing-with-dystonia/
- Dystonia Issues and the Issues it Causes https://connect.mayoclinic.org/discussion/dystonia-issues/
– Cervical dystonia (Spasmodic Torticollis): Looking for support https://connect.mayoclinic.org/discussion/spasmodic-torticollis/

My name is Warren Heck, I'm 86 years old, retired about 8 years, live in Manhattan in NYC, and was diagnosed with Parkinson's Disease about a year ago.
As the days go by I'm learning more about the illness and hopefully how to cope with it. I feel fortunate to have learned about Mayo Clinic Connect so that I can discuss my symptons with people with similar health issues.
If you wish to know more about me or my illness, I would be happy to respond to your questions. I am interested in knowing whether the group holds regular meetings and whether you do them remotely. I look foward to your response and how the group functions. Best, Warren Heck

Hello Warren, @wonderboy

How are you doing with your Parkinson's symptoms these days? On Connect, we do not have in-person support groups, but this online group.

Do you have any specific questions or problems that you would like to share?

Is there a place where a list of IN PERSON or live video support groups might be found?

Hello @melaniego

You might check the websites for both the Davis Phinney Foundation as well as the Michael J. Fox website and see what you find there for in-person or Zoom support groups.

Will you let me know if you find anything?

I'm just so exhaussted from all the searching now ... I have spent my year since being diagnosed last May, staring at a screen for a minimum of 10 hours per day. Overwhelmed and burned out.

@melaniego

Perhaps your local hospital, or your neurologist's office might have information on PD support groups in your area. I hope you find a group that can help you adjust to this health situation.

Is there any particular symptom that is most bothersome right now?

Hi, I am 68, and I was diagnosed w/Parkinson's 3 yrs ago, after retirement. I recently joined this support group. I have been to the Michael J. Fox Foundation & Parkinson's Foundation websites. I have been told I am in the early stages of the disease. I am dealing w/dyskinesia alternating w/ dystonia. I take medicines for them. I would like to use this support group for getting some answers to some of my questions re: Parkinson's I am seeing a Movement Disorder neurologist, but would like to find a different one. Does anyone have any recommendations for such a doctor in Michigan who is taking new patients? Glad to be part of this group> Thanks.

My tremors are my main symptom, and I refuse to take medications because I don't want to become dependent on drugs. Thanks for asking.

Hi, I was diagnosed in 2022. My main concern is the nonmotor symptoms. I can’t seem to get much help with those. Everyday is hard with nausea, abdominal pain,choking. If anyone has any suggestions, I’d be grateful!