Father with PSP

[Kiwibirdnz]

Hi All,

I’m a first time poster from New Zealand, my dad 81 was diagnosed with Parkinson’s in 2018 and then diagnosed with PSP in 2020. He had been living alone with psp since then with increasing amounts of help needed. He moved into a care home last week, and the last few days he has been very confused. Prior to the move he understood what was happening and why and although confused from time to time it was not as often (although over the last year it had become more frequent). He is now confused as to where he is and why, with some of the hallucinations or odd thoughts. He does now know what the day is and thought he was going to work today. Is this part of the progression of his psp- or is it the stress of the move and tbe unfamiliar surroundings. I guess I am looking for hope that he will become used to environment and the confusion will settle down. It is so hard seeing him like this, because he has always been such a fit man, and now his mobility is rapidly diminishing and he spends most of his time sitting down.

Just wonder if anyone had experienced confusion like this with PSP?

Many thanks to the generous people post, it is helpful for people like myself who’s until now been shy to post. It has been helpful for me to get more understanding about what has been going on, as it seems doctors etc often have absolutely no idea what to do.

H x

[honjen43]

Hi Kwibirdnz, where in nz are you? I am in Hamilton! You have found the best site in the World for help and advice. There will be answers to your PSP questions from those at the coalface who will often know and understand dealing with the disease better than a specialist!

Myself, I know little of PSP other than what I have learned here. My husband had Corticobasal dementia, another Parkinsons Plus disease and equally less known. I began posting in 2016 and am still here! I can remember 2 others posting from nz, 1 whose spouse has passed on, and another I connected with briefly from Auckland. He may no longer be posting either.

Learn how to use the website for private messaging (Chat), posting, updating and alerts. The answers for your questions will come to you. There are old posts too with other solutions that have proven useful to themselves.

Am happy to send you my cell number if you send me private message.

Take care. You have taken a great step!

Hugs

Jen xxx

[Joluu]

Hi all mum's episodes of confusion and hallucinations have been triggered by infections so my first thoughts are to get him checked by a doctor to make sure there's no infectionSending hugs

[OllieFisher1]

Hi there, from NZ also. Read my posts. Your Dad sounds similar to mine and is also in resthome care. His confustion has settled down but he hallucinates a lot. (prior to the resthome he was in hospital and he was really bad) We just tell him its an hallucination and that is part of his disease, and then state the disease and get hime to repeat the name of the disease. 9/10 this does reassure him. We visit heaps - in fact he would get a visitor every day. Maybe we could whatsapp or something.

[KatieHeyes]

Hi there, I’m sorry to hear about your fathers condition I hope he settles into his new home. My step-dad has PSP and does have the odd period of confusion thinking that he needs to go to work or play rugby (with some determination sometimes!). This can be part of the condition and passes in time, it can also for my step dad be more likely to happen when he’s tired and overdone things or unwell with a virus/infection so again always good to try and check whether this is happening in the back ground. The confusion usually passes within a few days in our case. General advice would be to go along with the confusion where possible we would call a friend sometimes and they would reassure my step dad that rugby was cancelled today so he didn’t need to get ready. This reduced his agitation a lot as telling him he doesn’t play anymore just increased his distress unnecessarily. Also having lots of familiar prompts around might help him in the home photos objects etc. Take care ☺️

[45purple]

Welcome from Bonnie Scotland. Sorry to hear about your dad. Hopefully when settled he will not be as confused just have to remember at his age it’s a big change for him being moved and he won’t recognise the surroundings. My husband has CBD 💜

[timbowPSP]

Hi there, thanks for posting. I am in much- the same bag as ur Dad .... 81, male, diagnosed 5 yrs ago. I'm still active, social, driving, etc but balance and walking going downhill. Think I'm starting to lose it mentally, and yesterday unable to do simple things on computer. I've listed my experiences, made comments, suggestions, advice, etc (used to be hands-on therapist - Bowen/NST), all written up as 3-A4 pages. Happy to share these with you, but NOT splattered all over here. Best if you dare send me your email please. I dunno how to do private chat etc, here! Best wishes.... TimbowPSP. PS. 12 years ago I spent 6 months based Wakanae and travelled all over with camper, doing wonderful things, like being in fab relationship, revelling in the great kiwi hardwoods, and finding the huge depth and history of the Waitaha people. Wow!

[LuisRodicioRodicio]

I am sending information by internal chat.

Hug and luck.

Luis

[gbiow]

Hi there. I too have PSP having been diagnosed with iti n 2020. luckily I do not suffer from any confusion, but a mobility/communication problem as well as a problem with saliva. hope fully the saliva problem will get solved, but the other 2 will not, only get worse apparantly. Anyway, best wishes to you all inNZ.

[davidcraven3999]

My wife was diagnosed of Parkinson’s Disease at age 61. She had severe calf pain, muscle pain, tremors, slurred speech, frequent falls, loss of balance, difficulty in getting up from sitting position. She was put on Senemet for 6 months and then Siferol was introduced and replaced the Senemet. During this time span she was also diagnosed with dementia. She started having hallucinations and lost touch with reality. Last year, our family doctor started her on Uine Health Centre PD-5 formula, 2 months into treatment she improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors. My wife is strong again and has gone on with her daily activities as I share this experience. I’m surprised a lot of PWP haven’t heard of PD-5 formula. we got the treatment from uinehealthcentre. com on google

David Craven

[Millidog in reply to davidcraven3999]

Hi, I am so very pleased your wife's condition has improved with this intervention. I think I'm correct though, in thinking your wife has Parkinsons; whereas most of us on here are caring for people with PSP or CBD. Whilst these are often classed as Atypical parkinsonisms and have some similar symptoms at some stages i know for PSP its caused by tau damage and very different to the cause of Parkinsons so treatments would be different. I have looked at the Uine website and whilst they mention PSP and CBD amongst other conditions briefly I can only see see their reference to use of PD-5 for Parkinsons and not these conditions. If you are aware of more links to PSP or CBD please do share. Thank you