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

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?

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.

@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

@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.

@hopeful33250
Doing ok. My niece has really helped me. I don't think it's really sunk in that he's truly gone. I used to visit him almost daily at the St. Elizabeth Gundersen Care Center and joined in activities there. When I no longer go there it's really going to hit me hard. Thank you for asking.

@sally2026

I am so sorry to hear of your loss. How are you doing? Do you have family and friends to support you?

@hopeful33250

My husband died from complications of Parkinsons and Covid 2/26/2026.

I also go to yoga class once a week and practice yoga at least twice a week. I have weekly massages and try to walk as much as I can. I need a wheelchair for longer distances.

I was diagnosed last November following a Spect and PET scan.
I don't seem to have many usual symptoms but have been prescribed LDopa.
I have a very weak and sometimes painful left leg. Walking is okay for a short while but then my legs seem to give up on me.
The most troubling symptom for me is not being able to sleep because my brain won't rest. I take Ambien. I have tried other medications that the doctors prefer but they don't work for me and make me feel hungover and confused the following day. I take 5mg of Ambien and it works really well.
Most people don't believe I have Parkinson's because I don't have tremors but I don't think everyone does.

@avery17
Hello Mark and welcome to the PD support group on Mayo Connect, I appreciate the way that you introduced yourself to the group. Like many of us who have PD, you are also dealing with other health problems. I'm glad to hear that you have adjusted to the dialysis regime.

You mention many of the issues that PD patients experience, such as sleep problems, constipation, balance and gait. Have exercise and medication helped? Which of these issues is the most bothersome currently?