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

@thelasthaunting - hi, Joel, and welcome to Mayo Clinic Connect.

Have you or someone you care about been diagnosed with Parkinson's? If so, what are the major symptoms you or they experience?

@bern7475 - what medication are you taking right now? What concerns do you have with it?

@neenee2024 Not at all. You started the first step and reached out. I can tell you if it was not for this site I would have felt more alone. Please continue asking questions and fears. We will lift you up. Remember no question is off the grid. If it bothers you then it bothers others. Best support as a Caregiver I have had. Hugs to you!

@knightkris You poor love to have PD and fibromyalgia. The pain and fatique as well as PD symptons will be hard to handle. My advise is to eat well ( look up Mind diet) sleep well, challenge yourself with exercise and socialise as much as can.

Hello, my name is Bernadette and I have had Parkinson’s for 10 years. My biggest concern is whether I am on the right medication.

Hi,
my name is Joel

@lisalucier

I'd like to try. No. 1 My husband has been Type 1 Diabetic since 13. He's 82. He's been extremely well regulated with exercise and a strict policy eating well. (His lifestyle was hard to believe when we married 50 years ago) He's had no side effects from Diabetes.None,
Zero
2. About 5,6,7, 8 ? years ago he was told he had Parkinsons. But, very little tremor or gait change. He's played tennis since 13 , two or three times a week. Up until March 2024.
We ate at a restaurant. Both felt funny. My reaction left quickly.His did not. He had Diarrhea for 2 weeks then lost the sight of the left eye. He played tennis once during that 2 week period. 3. a Retinologist told him he had an eye infarction. Go home take an aspirin. 4. An Ophthalmologist said go to the emergency room. He was in the hospital for 4-5 days for tests. No symptoms detected for any disease. But he had a high SED rate (Inflammatory marker)
5. The Rheumatologist prescribed 1 gram solumedrol for
3 days, then 60 mg Prednisone which would taper to nothing at some point. (Then, Actemra prescribed.)Afib was detected during this time in the hospital,
Hallucinations occurred, and High blood sugar. All believed related to the high dosage of cortisones given.
His legs had serious edema for 6 - 9 mos. He could not exercise. Otherwise , he was good , but frustrated . Prednisone and Actemra were believed to have caused the edema. He is no longer prescribed Prednisone or Actemra. His legs are healing from Edema. But, then "Venous Insufficiency" occurred. Walking was a good exercise. Diabetes were Parkinsons are OK. Eliquis still given. In November 2025 he began to look very , very pale. His skin color changed.
He had trouble walking because he became exhausted in a
very short time. He had trouble getting out of a chair to walk. He made odd factual errors, occasionally. He was unusually tired.
From November 2025 to March, 2026 he has had these symptoms.....5 months . His PCP said that tests did not indicate a problem. He said that there is no literature to indicate Eliquis as the reason for this.
I think it is quite possible Eliquis is modifying his body.
No one can say for sure, of course. But, I think it is quite likely.

@neenee2024 - welcome to Mayo Clinic Connect. Many here are new to Parkinson's and to online support groups. However, there are also members here who have been part of this online community a long time and have had Parkinson's for many years.

Hoping you can meet those who have Parkinson's or who are caring for a loved one with PD in this discussion, such as @cmspringer @hopeful33250 @louismines and others.

That sounds hard that Parkinson's seems to attack all your physical and psychological weakness. Will you share more about that - perhaps give an example?

I'm relatively new to Parkinson's as well as to support groups. Parkinson's seems to attack all my weaknesses: physical as well as psychological. It's hard to get a break from worrying about the future. I'm sorry if this is too much for a first post!

@hopeful33250
Hugh is in Roanoke VA and sees a neurologist who is with Carilion medical. That is the best we can do at this point. I told Hugh a few years ago that the one mistake we have made is that we didn’t move to FL. My RA doctor is at Mayo Jacksonville, and Hugh’s initial doctor was Dr. VanGerpen at Mayo Jacksonville (or used to be). Sorry to sound negative. I am just beaten down at the moment