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

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?

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

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/

I have been diagnosed with vascular parkinson's. What is my prognosis?
Mel

I just wrote a long reply and it got posted on the Parkinson's group when I clicked for the dystonia group. I do not have Parkinson's. I have dystonia.

I agree that a trial with Sinemet is a good idea but success or failure will not confirm anything. I was born with genetic dystonia and Carbidopa-Levodopa (Sinemet) works like a miracle for me. Yet it does not work for all types of dystonia. So Sinemet works for some movement disorders and not for others. Therefore, this will be a process of elimination and confirmation. If the Sinemet works or helps that does not confirm or deny Parkinson's; however, you will have something that helps. A trial period of using the drug supervised by a neurologist will provide a data point. The drug has been around a long time and is very safe. I have been taking it for YEARS otherwise I wouldn't have had any life at all. Remission of symptoms coupled with a neurological exam is the only way to diagnose neurological, movement disorders or neurological/muscular problems. Then narrowing it down is required. I know because I have lived successfully with dystonia for 74 years and it took a while to finally organize the treatment plan that worked best for me. I know others with dystonia and nothing works for them. My dystonia gradually progressed from tripping, falling and clumsiness and then to the inability to write script and color within the lines as a kid to trapezius twisting, head twisting, tremors and difficulty breathing and speaking simultaneously or the way most people take speaking and the ability to talk and walk for granted. I am not describing being winded but rather gulping between sentences. The carbidopa-levodopa enables me to function without any symptoms at all and I do not have Parkinson's. Good luck to you.

I read with interest about a Medicare paid program for Parkinson's called BIG Program. Can anyone share more ? I would like to look into it. Thanks

Hi,
My name is Michael and just joined this group. I was diagnosed with Parkinson's in August 2018.

Thank you. That sounds very interesting.

Bruceandruth1970, HIFU is high intensity ultra sound. I think if you google it you will find a good explanation - better than I can give you! Let me know what you think.
Elaine