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

If you have a teaching hospital anywhere within striking distance, you might do better with their Movement Disorder Department. Switching from a local neurologist to the university hospital near us made a positive difference in my husband’s treatment. I’m sorry about your back pain. Good luck.

@jaybee51 I am quite interested in your comments about Pregabalin. I have been taking it for years for another condition, long before I was diagnosed with PD. I had no idea it can cause problems with dopamine production. I will be seeing my neurologist next week and will ask him what he thinks. I can probably go off it.
My neurologist is excellent, and I hope you can find one that knows how to treat PD and pain! I am sorry you have been treated so poorly. Sometimes, we don't have many doctors to choose from, so I hope you will find good ones!

I HAVE PD AND I HAVE THE HAND TREMORS THAT YOU DESCRIBE. I HAVE JAW TREMORS ALSO. I WOULD LIKE TO KNOW IF ANYTHING HELIP.

Hi, my name is Janet and my husband who was recently diagnosed with PD is Stan. I’m a young and active 84 year old psychotherapist, still maintaining a part-time private practice. Stan will be 85 in February. Since his retirement 12 years ago as a high school history teacher and a horologist, in general he’s been depressed and withdrawn. He was diagnosed with PD in December 2024. Stan has the beginnings of Parkinson having both physical and cognitive symptoms. We are both in need of a support group, having so many emotions re: this diagnosis. Is there a virtual support group that meets regularly ? How does the Mayo Clinic group function?

Hello! Welcome to the group @janetgeller9. I am sure you were taken aback when you found out about your spouse's diagnosis. My heart goes out to you. It is a hard pill to swallow. My spouse has had Parkinsons for quite some time. He has other health conditions which make it a hard journey even harder. That being said..we talk to one another on this site. It depends where you live as far as in person support groups. Check with your local YMCA. That is where we began. I find this site and the Parkinsons Association has lots of information. I have researched every place I can find. My main reason for that is my Dad, brother and of course my spouse have Parkinsons. My Dad died in 2018. My spouse was diagnosed 12 days later. Hugs!

Thank you for your compassionate and welcoming remarks. Yes, I was taken aback as Stan(my husband) has always been a physically strong, sharp brained guy. The change is overwhelming and very sad to me. I feel a great loss has occurred which I'm having difficulty coping with. I’m disappointed that, so far, I haven’t found a support group in person or second best-Zoom. I want to see others but for now, I’m grateful for this platform and your kind words. You, yourself have quite a handful to bear. I feel for you too.

Thank you as well. I think it helps reduce the stress that comes with this overwhelming situation and know other's care. Hugs!

Have you checked your area Rec Centers, Y’s or Parkinson's Associations? My husband attends Parkinson's Boxing at our Rec Center and in addition to the exercise regularly gets to meet others and their care partners. It’s a big help to him. I’m sorry you’re going through this.

Hello @janetgeller9

I also welcome you to the PD support group on Mayo Connect. A Parkinson's diagnosis is hard to accept. This is true for the patient as well as the caregiver. I see you are looking for a support group or a Zoom group.

Here is a link from the National Parkinson's Foundation with information about support in your area, https://www.parkinson.org/resources-support. Just click on "In Your Area" and you can find groups nearby.

On Connect, we have a Caregivers Support Group which might be helpful to you. Here is a link to those discussions, https://connect.mayoclinic.org/group/caregivers/

What is the most difficult adjustment for you right now?

Hello Teresa, the most difficult adjustment is the loss. Everyday, I feel I’m losing more of him. This was a smart, vital, Type A guy who has become withdrawn and socially isolated. He goes to PT 2X a week, takes his meds and eats well. I think he may have had Parkinson’s for awhile that has gone undiagnosed because he has had/has trouble walking, looses balance, has falling issues, can’t open a jar that I can open,etc. I lost my big strong guy. More upsetting to me is his cognitive changes, poor judgement, non-verbal. I feel very alone. Friends, family don’t live near us anymore. It’s just he and I-no kids. And now it’s not even him. I could go on forever, perhaps. I need community and connection that is absent right now. Also, based on his poor judgement, practically every day he creates some problem that shocks me and then I have to fix it. That partially answers your question but there’s so much more.