Lewy Body Dementia with Parkinson

My wife has Parkinson's and Lewy Body. Diagnosed with Parkinson's at Vanderbilt University in 2017 and Lewy Body at Mayo in 2019. My biggest concern right now is the frequent hallucinations. I have to be very careful how I react when she tells me she sees all of the people in the lake behind our house and walking in our yard. I do not want to tell her that there is no one there but I do want to be able to put her at ease and to relax.

Any suggestions or literature on this subject??

Hello @shirlpat I'm Scott and my wife's brain cancer caused her to have all types of hallucinations -- olfactory, visual, and auditory, I know each patient, their disease, and journey are unique, but here is what I did for my wife. I had to learn how to accept that this was her disease speaking and not her -- so to her what she was experiencing was her truth/reality so I never contradicted or challenged her. I just went with her flow, let her tell me what she was smelling, hearing, or seeing, and then we'd talk about it with me agreeing with her. I found agreeing with some suspension of my own reality, helped her the most.

The hardest was when she would insist that I was not in bed with her at night, but instead standing beside the bed talking to her. Only once did I have to disagree and work her through one of these, which was when she believed our house was on fire and our nonexistent dogs were in danger.

It's a complicated issue for sure and I'm happy to talk about our experiences more if you have other questions.

Strength, Courage, & Peace

My wife has Parkinson's and Lewy Body. Diagnosed with Parkinson's at Vanderbilt University in 2017 and Lewy Body at Mayo in 2019. My biggest concern right now is the frequent hallucinations. I have to be very careful how I react when she tells me she sees all of the people in the lake behind our house and walking in our yard. I do not want to tell her that there is no one there but I do want to be able to put her at ease and to relax.

Any suggestions or literature on this subject??

Look up the Lewy Body Dementia Association lbda.org and check out their Care Briefs: LBDA Care Briefs on Behavioral Changes in LBD
https://www.lbda.org/caregiving-publications/
Scroll down the page to find the links to the 7 care briefs dealing with behavioral changes.

Also there is a great 30 min webinar produced by the Mayo Clinic: Mayo Clinic on Fluctuations and Hallucinations from Tanis Ferman, MD –
https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lbd-video-series-fluctuations-hallucinations/

A major complaint my wife has with Parkinson's is anxiety. Two meds were prescribed: Sertraline 100 mg and Trazadone 50 mg. Neither seem effective. Do others have a similar complaint and how do they deal with it?

My husband with Parkinson's also has anxiety associated with off periods and dystonia. He is on sertraline and trazadone also. But when he has a full-fledged panic attack, if an extra dose of Sinemet doesn't work and I can't talk him through it, the only thing we've found that works is Ativan. It's not a drug to be given lightly, but it does work for him on an emergency basis. But it's not a good solution for day to day anxiety.

I'm intrigued by your comment about "if I can't talk him through it". Is this sort of a coaching approach? What I do is have my wife lie on the floor with a heating pad on her abdomen and after and hour or so, the anxiety abates and she's able to resume some normalcy.
Phil

Can Mayo Clinic give us more assistance than the doctors here, in the Palm Springs area? The information about this disease of Lewy Body has to better & more experienced than what he receives at Desert Oasis Medical. He was diagnosed March 2018.
My husband, "Semaja" has been spiraling downward with his movements and walking. He's in pain as soon as he stands-up and tries to move his legs/feet.
No one has mentioned or discussed his fall in 1991.... might have led to this disease.
It's only recently that one hears about this disease. People didn't discuss @Robin Williams death was a combination of Lewy Bodies and Parkinson. Now, @ted Turner announced that he has them, also.

My husband with Parkinson's also has anxiety associated with off periods and dystonia. He is on sertraline and trazadone also. But when he has a full-fledged panic attack, if an extra dose of Sinemet doesn't work and I can't talk him through it, the only thing we've found that works is Ativan. It's not a drug to be given lightly, but it does work for him on an emergency basis. But it's not a good solution for day to day anxiety.