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@adv

Its bee a long time since I posted. Seeing new neurologist. Diagnosis dementia after testing. Seems his dementia a big problem with his body motions. Has neuropathy in legs. Very hard for him to move his legs & legs are very weakness. Extreme stiffness in his legs. Body in general very week.
When he received first diagnosis he was put on .5 haldoperidol 2 times day which successfully got rid of hallucinations for a long time. About 10 months.
It Has returned & haldoperidol .5 one in morning & .5 two at night. The Dr's nurse said it could take up 10 14 days to improve.
He got terribly worse the next 3 or so days & now a very little improved. He's not as tortured byhallucinations. He confused & basically weak. Dosing alot. Before the recent hallucinations appeared again he was totally into sports on TV but now when it's on he doesn't really watch.
As I said the torturous hallucinations have stopped & he's calmer now. I don't know if I have to be patient regarding the 14 days.
I hope I am making myself clear.
Any info would be greatly appreciated.
Angela

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Replies to "Its bee a long time since I posted. Seeing new neurologist. Diagnosis dementia after testing. Seems..."

Hello @adv,

I have been reading with interest your narrative about your husband's dementia symptoms. I'm wondering if you or your doctor is familiar with Lewy Body Dementia (LBD)? It is somewhat different in the way it presents and it is often misdiagnosed for Alzheimer's or other forms of dementia. Here is a link from Mayo Clinic about the symptoms, diagnosis, and treatments for LBD, https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025. After you read about LBD, you might see how many of your husband's symptoms and behavior are similar. You might make a list of these similarities.

As you can see, the meds used to treat this type of dementia are different.

Have you considered a second opinion for your husband? Can you go to a Mayo Clinic facility? There are 3 Mayo Clinics (in Jacksonville, Florida, Rochester, Minnesota, and also in Arizona). If you would like to call for an appointment for any of the campuses, here is a link for information about appointments, http://mayocl.in/1mtmR63

If you would like to learn a bit more about LBD here are some more links,

Signs and symptoms of Lewy body dementia – September 3, 2020:
https://newsnetwork.mayoclinic.org/discussion/signs-and-symptoms-of-lewy-body-dementia/

Mayo Clinic Q and A: Lewy body dementia and Alzheimer’s disease — what’s the difference? – March 4, 2017:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-lewy-body-dementia-and-alzheimers-disease-whats-the-difference/

Leading NIH's Lewy body dementia initiative – Dec. 31, 2020:
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/leading-nihs-lewy-body-dementia-initiative/mqc-20505822

"The Lewy Body Dementia Association (LBDA) has designated Mayo Clinic as a Research Center of Excellence (RCOE). The LBDA has identified leading clinicians for advanced diagnosis and treatment and who are committed to providing advanced care, community outreach and support."
Lewy Body Dementia – Mayo Clinic Research: https://www.mayo.edu/research/labs/memory-disorders/research/lewy-body-dementia

I look forward to hearing from you again. Will you post an update?

@adv. I’m so sorry to hear of the difficult time you and your husband are having with his dementia and the drugs he’s been given. You mentioned the really bad hallucinations. What does the neurologist say about these?
Do you have a family member or friend who could sit with your husband while he’s dozing? I know at this difficult time you may be reluctant to have someone in the house, but you need to give yourself some time off to rebuild your energy. Do you think that’s doable?

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