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

@sally2026 It does take time for the reality of loss to sink in. I am glad to hear that your niece is there to help you. You will undoubtedly miss the time you spent at the Care Center. It does sound as if that was an important part of your week.

I would encourage you to read and, if you wish, participate in the Connect support group for Loss and Grief. Here is a link to those discussions: https://connect.mayoclinic.org/group/loss-grief/. As you look through the discussions, I think you will find other surviving spouses sharing their experiences. I hope you will find this helpful.

In the meantime, please continue to post here. I am looking forward to hearing from you and keeping in touch.

@sally2026 I am so sorry about your loss but remember he is better off now and not suffering anymore. May God bless and keep you

My husband has had PD since 2010 (diagnosed). He is in stage 5 and is in a nursing home. He still gets some therapy but not constant. Lately they are telling me that his behavior has changed - that he is “rummaging through his wardrobe closet” and at times says he is confused. I seen him 2 or 3 times a week and I don’t see the confusion. In the past I have had problems with his getting his Carbidopa Levodopa on a regular schedule. When the medicine schedule is disrupted, he does get a little confused. At those times I question the timing of his meds. They assure me that he is getting his medication on a proper schedule. I guess my question is can his behavior that they describe be “hidden” at the times I see him. Or are they miss diagnosing because of something they are not doing properly.

Hi @cmspringer - Welcome to Mayo Clinic Connect. That is hard when you and the nursing home staff are seeing different things.

Hoping that some of the members in this discussion who are experienced with Parkinson's will chime in with what they know about whether any changes in your husband's behavior might be hidden from you when you see him or if something might be amiss in his care. Please meet @hopeful33250 @louismines @avery17 @esther589 @redkolar.

How is your husband doing other than this issue the nursing home mentioned, cmspringer?

I guess he is hanging in there. His mind is still pretty good. What I have trouble dealing with is that he was doing extremely well until 5 yrs ago. He is retired minister and was conducting meetings going to therapy, driving. Doing everything he used to. Then a doctor prescribed Lyrica for his back pain. Within 3 weeks he was taken to the ER with delirium and a temperature of 87. His neurologist called to see why he had missed an appointment. I explained the situation and her comment was, “you never give a Parkinson’s patient Lyrica, because it can do such strange things”. So I blame the medical professionals. In those 5 yrs, Hugh has had a feeding tube, rehab assisted living, a collapse, another feeding tube, rehab and now nursing home. He is 85 and his body cannt take much more.

Hello @cmspringer,

I would like to join @lisalucier in welcoming you to the PD support group on Mayo Clinic Connect. I can only imagine how difficult it is for you to determine whether your husband's care is what it should be. Is it possible to get him to a movement disorder specialist to review his condition? If he cannot be moved easily, is it possible to have a movement disorder specialist visit him at the care center?

It is probably important to have an independent evaluation to ensure that he is getting the care he needs. Will you post again with updates?

@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

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!

@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?

@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.