Parkinsonism

Just diagnosed with a Parkinsonism. Cortical basal ganglion degeneration. It’s a good one that affects motor and balance and weakness in limbs. Check for that one. Brain Scan

My husband has all symptoms of PD except the tremors. He also was diagnosed with Lewey Body dementia. He has had a problem with dopamine replacement meds and doesn’t want to take them. We can’t determine if it’s the disease or the med. Anyone else with this issue?

My wife had both PPA (Primary Progressive Aphasia) and PSP ( Progressive Supraneuclia Palsy) and developed a movement disorder similar to some experienced by those PD. Thus, it was diagnosed as parkinsonism, with a small p to distinguish it from PD itself.
My memory of her struggles reminds me of those with in this forum with similar symptoms. I wish you all the best as you deal with them.

Hello @geneloff

It has been a while since you last posted. How are you doing?

Hello @michigan84

Welcome to the PD support group on Mayo Connect. I appreciate you sharing about your wife's experience with such difficult diagnoses. Were there certain therapies which were helpful to her?

Teresa,
Thank you for your communication. I'm sorry to tell you that there were no therapies that were helpful to her. She suffered from PPA and PSP, both progressive brain diseases that eventually lead to death, in her case about two years after diagnosis. I was retired and able to be with her for much of the day. We were able to find assisted living facilities where we able to live together in the same apartment. As her caretaker, I was able to get away for afternoon walks, knowing that she was safe while I was gone.
This has been a rather long detour from your question, but I thought that our experience might be helpful to others. If so, I would be happy to expand on the topic.
Her diagnosis of parkinsonism was of little importance since her other problem dominated her life.

Hello @michigan84,

Yes, your experience will be helpful to others. When we have other members post about this devastating disorder, I would like to invite you to share your experience with them.

You are to be applauded for making the necessary adjustments to accommodate your wife's needs as well as your own. It looks as if you realized the importance of caring for yourself and yet keeping your wife safe. That is very important for full time caregivers. We all need time to ourselves in order to re-group.

I get the impression that your wife passed away recently. Is that the case? As you are new to Mayo Connect, perhaps you might be interested in posting in another discussion group,
--Loss and Grief in Caregiving
https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/?commentsorder=newest#chv4-comment-stream-header

The first post by @IndianaScott is very helpful as he tries to explain his many emotions after the death of his wife after being her primary caregiver for many years.

Just wondering if you are feeling similar to Scott's about loss after caregiving.

Hello Everyone,

I was diagnosed with PD in Nov 2023. I am trying to do as much research as I can about PD and Parkinsonism and I found myself here. I just joined and I wanted to say hello.

LouieM

My wife Diane died in the morning of January 2016 from the combined effects of PPA and PSP with myself and my daughter from California present. By then. Diane was no longer responsive and it was a relief to know that she was no longer suffering. That was 8 years ago, but it is still fresh in my mind. She led a life of helping others so it was not only a loss to me and my family.
I have recently updated my profile on Mayo and made much more available to the public, You might find some surprises there
All the best, Roland

Thank you for more details on your wife's illness and passing. You have my condolences. I can see that your grief still feels new and fresh, almost like it just happened. Grief does not usually have a beginning or an end. The loved one we lost tends to stay in our heart.

I looked for your profile but did not see anything posted there. If you are having problems posting your profile, please let the administrator know. Here is a link (at the very bottom of the screen) where you can report a problem using Connect. Here is the link, https://connect.mayoclinic.org/help-center/#how-to-use-mayo-clinic-connect

I appreciate your continued posts.