Stimulation for people with PSP? - PSP Association

PSP Association
6,883 members9,396 posts

Stimulation for people with PSP?

asseto
asseto

Hello. My dad had PSP; his mobility is almost nil - he spends all the time in a wheelchair unless he's in bed. He can't feed himself, his whole body is very stiff. He can't read anymore and TV seems to be the only thing he can actively do. He is very well looked after by his wife but I'm aware she can only do so much. My question is what other kinds of stimulation would be good for him? What have others found to be beneficial?

Thank you.

30 Replies
oldestnewest

Mental or physical?

asseto
asseto
in reply to rriddle

Both really

Have you tried books on tape ? We also do quizzes, and crossword puzzle clues.

Singing along to songs he likes is also good.

asseto
asseto
in reply to Caro2132

No not tried books on tape. He can’t use any controls so I wonder if he’d get lost with it. I also wonder if he’d remember what he’d previously heard (assuming he wouldn’t listen to it all in one go). That’s why I’ve not tried it. I think listening to things is something that he could do more of though with the right equipment. Thank you

AJK2001
AJK2001
in reply to asseto

Mum found she couldn't concentrate on books but I signed her up for the local talking newspaper and she quite enjoys that. She can't use it by herself but once set up she will listen happily for an hour. I think the short items about the local area make it easier for her to follow & if concentration wanders, well she misses that item but can get the next.

Kevin_1
Kevin_1
in reply to asseto

My Liz sounds like she is at the same stage. She listens to audiobooks. She has no control over them of course. She enjoys them a lot. I suspect they go a little fast for her, but she enjoys them anyway.

The other thing I did was to scan all of her photos onto a thumb drive and then play them as an auto slide show.

I hope you find what works for you.

asseto
asseto
in reply to Kevin_1

Thanks Kevin - I really like the idea of the auto slide show. Good to hear Liz enjoys the audiobooks anyway, even if they go a bit fast.

I got my partner an Amazon Echo Dot for Christmas and because it’s hands free and voice activated he can ask it to play the radio, and his favourite songs on Amazon music. He also does quizzes on it, and if he needs help in the night, (he sleeps on a hospital bed downstairs,) he can phone me on my mobile. You can also subscribe to Audible which reads books as well but it is quite expensive as you have to buy the books as well.

He also watches a lot of TV - Netflix, documentaries and quiz shows to keep him stimulated.

Inarticulate
Inarticulate
in reply to CLP71

If you have a prime account some of the books are free.

CLP71
CLP71
in reply to Inarticulate

Tx for this.

Thank you that’s interesting and sounds very useful. Could I ask, does your partner speak quite clearly? My dad doesn’t mostly; I’m wondering about voice activation.

CLP71
CLP71
in reply to asseto

His speech is slurred sometimes so it is then difficult for him to use. The speech and Language therapist has given him some tips though to help.

My husband used to listen to audio books - he needed help setting up and turning on and off but he enjoyed being read to when he could no longer read himself. I read the newspaper paper to him and we did the crossword together. We also played board games like backgammon, etc

Hope you find something that works

Love Tippy

I'm sorry to read of your Dad's plight. My wife reached the stage that he's at very quickly and has remained there for 18 months. The only things that stimulate her are the TV, visitors, rides in her wheelchair and wheelchair accessible vehicle. Trying to maintain normality and routine has also helped. But and it's a big but it will only get worse and is unbelievably hard on the carer. Kind regards Rob

asseto
asseto
in reply to Willow_rob

Thank you Rob - I'm sorry your wife is also at that stage - it's very hard to be so inactive and unable to do anything. Dad also goes out, we are lucky to have a wheelchair accessible vehicle for him and he loves going for a 'walk' especially in this summer weather. He never was a person to watch daytime TV but now that is mostly what he does, life is so limited.

My experience is similar to Willow_rob

Hugs.

mum mum's situation similar too

My husband, who seems to be at the same state..... loves his Amazon Echo. It’s amazing as I wondered if his speech would be a problem but gradually it understands and now it’s so useful. It answers his questions.... what’s the date? What’s the weather? And plays the music he wants to hear. Go for it!!

Hi yes Stimulation can be a problem to us. Especially, as you say, it is either wheelchair or bed, the body getting stiffer and the almost inaudible voice. Our week is roughly as follows. CH has a carer come in on Mon and Fri now 3hr & 4hr. In addition to household tasks their job is interaction (conversation, dominoes, 4-in-a-row, cards, solitaire on tablet, wheel the wheelchair round the block etc). Tue and Thur is at-home day(for us both). We do something together. I read to him & we sit outside under the trees (now that he is not able to manipulate the controls on the tablet), have a friend around for a cuppa or what ever I think up on the spot (I used to get him to cut up veges or sort his pills or seeds or other), Wed & Sat we go out in a wheelchair taxi (he can no longer get into my car) to a shopping centre, a coffee bar and a walk in a park or visit someone. Sun is family if possible or whatever we think is needed. He does not like to watch TV for long. I think the best (and hardest) thing is getting people to call in. Have been to movies twice only the choice of movie can be difficult (he cries and laughs easily). I try to involve him in any decision making (what paint, what glue to fix this etc) even if he cannot always make himself clear. It is the short term memory going first but long term and problem solving are worth utilising. We plan to go through old photos to make a booklet for the family. He also has a physio weekly and speechy monthly and we try to do follow up exercises daily. I hope that this has been some help to you.... val

asseto
asseto
in reply to crab2093

Thank you Val. Dad does have visitors calling by but it is almost impossible for him to have a conversation with them now and some people feel awkward I think, but it's good they still come. You sound very active; I like the games idea (we were never a game family really) and making a booklet of old photos is great - dad does seem to have better long term memory than short term. By the way, my dad laughs very easily (not seen him cry) in a kind of inappropriate way sometimes - do you know why that is?

Zibo
Zibo
in reply to asseto

I have heard that the capacity to have tears, due to eye problems, is inhibited in people with PSP. My mum sometimes wanted to cry but no tears came up. She had, in the past, laughed inappropriately: that is when the first signs of something not been right emerged. I hope this helps. Sending comfort and empathy in these difficult times

asseto
asseto
in reply to Zibo

Thanks Zibo. It’s weird, I feel happy he is laughing and therefore maybe happy himself, at least at that moment, but feeling it’s not quite real. I return the comfort and empathy to you.

Hi Asseto, stimulation from without - how about stimulation from within. Already posted on this forum is our experience with Cannabidiol (CBD) or Cannabis, a food suppliment I get from a local health food shop here in Scotland UK for my wife with PSP. It improved her swallowing, vision, ballance, movement, speech and awareness such that we were able to dispense with day & night pads.

We started at beginning of March with a week's gap mid March, when in Respite the home would not administer it as not prescribed. Real improvements came to the fore in early April.

The progression of the condition has continued however and this last weekend we had to start using pant liners due to minor accidents - due to coughing. Swallowing is still good but there are signs that this will become a problem in the near future. I just need to watch what I put in the slow cooker stews ie. no more kidney or cannalini beans as the skins have started sticking in her throat.

Speech has deteriorated recently - by evening I have great difficulty understanding what she is saying, this will be so earlier in the day as time goes on.

Awareness - knowing when to go to the toilet is still good, the downside of this is I am awakened between 1 & 3 times a night. Better that than having to clean dirty pads.

Ballance is not good now even standing still with a Zimmer when transferring between wheelchairs.

The real downside in the UK, unlike Canada, is that while cannabis is not on Prescription I cannot put my wife into respite as the cannabis would be stopped and she would doubtless deteriorate leaving me with a great deal more to deal with on my return.

The quality of life we have had has been a lot better with the cannabis than without it.

Perhaps, just perhaps the period of real difficulty before the end will be shortened as response to cannabis disappears. The jury is out.

Nothing stands still with this condition one is continually making adjustments.

We cannot get cannabiss, ,but can purchase CBD oil. I have tried it with no results. My husband is definitely in the later stages of PSP. Are you suggesting that there may be a cumulative effect. You mentioned you began giving it to her in March and saw benefits in April.

Thanks, Just wondering if I should give it a try again. It is not very well regulated here and dosage and purity are a challenge.

Thanks .

Hi Karynleitner, the further towards the latter stage you are the less is likely to be the response. We are getting less response now than we were but still some. Vision - she cannot look up or down or left to right now and everything is out if focus or takes an age to focus. There is more coughing with thickened cold drinks so considering moving from level 3 to 4 and for hot drinks level 1 to 2. I need to instruct her more when transferring to toilet, as balance not so good. Thankfully swallowing is still good as she is still managing her slow cooked stew midday.

I think you should administer the Cannabidiol (CBD) as you have it. We are on 9 drops a day under the tongue 3, 3, & 3(max advised 10 - the 5% one). My wife is having a harder job opening her mouth now which makes it difficult to administer - I use, a, torch to be able to see what I am doing. Use torch also to, administer the Atropine (4 drops a day) for control of saliva which is successful.

From the experiences of many on this forum it is obvious that every PSP patient is different in their progression in the different faculties. My wife appears to be retaining the ability to swallow longer than others.

Thanks David, I’ve wondered about CBD. I’m in the UK, what is it you get from the health food shop? It’s interesting to hear your experiences. My dad’s condition is already quite advanced I’d say although like most people, this is the first time I’d even heard of PSP and only have this group to measure him against. As you say it is constantly changing (and not for the better) - makes me feel very helpless. He can still swallow but I have noticed that is getting more tricky at times.

Hi Asseto, I administer 5% Cannabidiol. Maximum advised is 10 drops per day, I am now at 9. 3 morning 3 lunch time and 3 dinner time. I am keeping to this as administering it is getting more difficult as she cannot open her mouth very far. Very easy to give 4 by mistake. I use a torch to be able to see what I am doing. Hope this helps. Health food shop is a national one in UK.

asseto
asseto
in reply to David750

Thanks David. Wishing you and your wife well x

We put tapes on for my brother, he listens to music or his bible tapes, he is just about bed bound, put the tv on for him to listen some of his favorite shows but his eyes are so bad he really can’t see very good,

asseto
asseto
in reply to Tttp

Thank you. Sorry to hear your brother is bed-bound and eyes are now bad

You may also like...