Question and other experiences with PSP, CBD & Lewy Body Dementia.

[TBoyles]

Hello, I have not commented on here for quite some time, primarily for lack of time caregiving for my husband with the above diagnoses as well as my 90-year-old mother with dementia. My question concerns my husband and the decline of his diseases. He, Terry, is 64 years old and was diagnosed with Sleep Apnea by one Neurologist 5 years ago, then 4 years ago was also diagnosed with Parkinson's. We found out 2 years ago that Parkinson's was not an accurate diagnosis either, so we went to another neurologist who had a neuropsychological Dr. do a massive work up on my husband. That is when he was diagnosed with PSP and CBD. Also, 8 months ago he had a PET scan which showed that Lewy Body Dementia was the primary issue in loss of brain function. So now my question is, with the three diagnoses together and it being 5 years since original symptoms began, what should i expect next? I can't seem to get answers as to what to prepare myself for and I am reaching out to see if there is someone who has had a similar experience. His symptoms now are: he cannot drive, read, see, or hear well, cannot dress himself, or prepare anything for himself and he only walks very slowly with handrails to help his balance. He can talk at times logically, but other times cannot finish sentences. He does not remember longer than 10 minutes time. He sleeps close to 14 hours a night and still naps daily. He is a definite sundowner and is close to 3 years in age in his behavior most of the time. I just would like to know what stage he may be at or how to prepare for the next stage. Any information would be appreciated. My heart is broken, I cried the first 3 years, but I know the worst is yet to come. Thanks in advance.

[OllieFisher1]

Hi there.....hope you are doing OK. My father was diagnosed originally with parkinsons in 2019 and then PSP in 2022 after a fall landed him in hospital. The symptoms you describe Terry has having were some of my fathers symptoms, and he went into a resthome. My mother tried to care for him at home, but his physical size complared to hers made it impossible. He was getting up 10x a night sometimes which did not help. Honestly his symptoms stayed like that till a couple of weeks ago, and he developed a chest infection or maybe he is aspirating and the doctors here in NZ do not realise, and he doesnt seem to be recoving now. He is wheezing heavily through each day and not eating much. Two weeks ago, I though he would be around this Christsmas, and now I think the end is imminent. I think each case is very indiviudal. Hope this helps. Best whishes.

[Old_Hall]

Morning TBoyles.......I am new to all of this with my husband with PSP and posted on here for the first time a few weeks ago. This group is a huge support and full of vital information, and although I am unable to offer advice at the moment, I just want to send you love and hope you get the support and help you clearly need. My heart goes out to you.

[messier]

Firstly sending you hugs for coping with caring for two family members. Progression is so individual but it’s likely that he will lose what mobility he has. You don’t say how’s he’s doing with eating, but his swallow will likely decline too and you will need to feed him if you aren’t already. The combination of the three diseases is really about how the disease is spreading in the brain which is very individual. Someone described CBD and PSP to me as physical dementia, the LBD adds behavioural and memory dementia. Eventually, unless something like pneumonia arrives first, the brain simply fails to be able to coordinate all its functions.

[Sparky137]

You have a heavy load to carry . my husband has psp 89yr old first dx with parkinsons 11 yrs ago , dementia in wheel chair etc Got very sick in 2020 needing 2 person to lift could not bear weight surprisingly doing better I make a tea out of mj flower (take most of the mj out when i remove the harden butter) and he started Galantamine this year. REALLY has improved I can look after him without a second person and his brain responded so well to Galantamine it is like a miracle worth a try Good luck