Hello everyone. It's not often I post here, however I read lots of the posts and take comfort in this community. My Mum was diagnosed with PSP in 2018. She now lives in full time nursing care with very poor speech, severe lack of mobility, poor eyesight and a PEG feed. This weekend was a new 'first'. I brought Mum home to my house to enjoy Easter Sunday with the family. She sat in the armchair and fell asleep, deeply. A couple of hours later she was still sleeping and when I tried to wake her up, she didn't stir. I did everything I could without hurting her to try and get her awake. After 10 minutes or so she started to come round, squeezing my hand when I asked her if she could hear me. It took another 5 minutes for her to open her eyes. Eventually she woke up although she was very vacant and sleepy still. When I got her back to her care home, the nurse took her blood pressure and measured oxygen in her blood. All normal, even though she was still very quiet (she normally 'talks' a lot although nothing much makes sense anymore). She went to bed and slept all night. The next day, she was back to herself, 'talking' and alert with her wicked sense of humour back and laughing (which sounds like howling crying these days!) . Has anyone else experienced what I've described? It really made me panic and was so unusual for Mum, although we are rapidly getting more concerned about her mental capacity. Is this just another 'next stage' of this horrible disease?
Thank you for reading, please share your own experiences in the comments.
Nicola, Surrey UK
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Spiderwebb21
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Hi, sorry to hear you are on this journey with your mum.
In short yes, we experienced this with mum. The first time it happened she seemed to lose all her mobility and speech. We flew my brother home from abroad thinking it was the end and the next day she was back to normal and asking for a latte!
It did happen again a few times in her last year although if I was there she would usually respond to my voice with either a grunt or a hand squeeze. She tended to blank everyone else. She used to take ages to come round and would then usually have another deep sleep.
After discussions with GP, Parkinson nurse etc we put these ‘vacant episodes’ down to part of PSP. Of course, always worth checking for a UTI or signs of other infection. If you don’t already have CHC, it can count as an altered state of consciousness.
Sending you and your mum courage and strength to keep going. Enjoy her on the good days and tell her you love her on the bad days.
Hello Willowden thank you for your reply, it is reassuring to know that other people have experienced this. Your advice about CHC is useful, I've recently been considering applying for it but know it is really hard to get accepted. As Mum's condition worsens though, there may be more 'qualifying' reasons to be accepted.
We do try and enjoy the good days, Mum still has a sense of humour and we find laughter is a massive help. I tell her I love her everyday ❤️
Sorry to hear you miss your Mum, thank you for sharing your story 😇
Absolutely apply for it!! We were awarded it immediately - within days of applying - so I think if you fill in the forms correctly and give tonnes of information, and use the help available from district nurses etc then you should get it.
Thanks for the advice REOC . Is/was your loved one cared for at home? I think it’s harder to get if living in nursing care home (privately funded which Mum is at the moment) . But we’re still going to give it a go….
We have some mornings when my husband is difficult to wake and even more when the eyes won't open and he appears to dislike any light or sound. This seems to be when his medication has worn off completely and it can be a real struggle to get tablets and/or liquid into him. He will usually recover within 20-30 minutes of having medicine.We also sometimes have days when he is unresponsive in a way that is distinctly different to "just" day time sleeping. It is luckily not often, nor does it last too long, he'll sleep a lot and then be back to normal. It seems to me to be a reaction to a busy morning, a visit or an outing leaving him overstimulated. I try not to use it as a reason for staying home, but I've realised we need to pace ourselves and allow for rest before and after anything that could be stressful. The brain needs rest more than the body.
I hope your mum still enjoys time away from the nursing home, even if it might be more stressful for her than you think. Obviously take medical advice, I think it is "normal for PSP" and something to take into account rather than something to be alarmed about.
Thank you Bergenser for replying. I hope the journey with your husband is not too stressful for you. Pacing yourself is key. Mum definitely needs lots of rest between activities and time 'out and about' these days, but we enjoy doing things when we can. It is reassuring that I'm not alone, and I won't be so alarmed if/when it happens again.
I have been diagnosed with PSP last year and find this blog ever so helpful, I’m learning about what is in store for me. You mentioned that your husband takes medication, I’m wondering what he is on, since my neurologist said there is no medication for PSP. I live in the US, so maybe there is something in the UK that helps with the symptoms? I have severe balance problems and my speech is getting worse, my handwriting is illegible. But I’m still me, I just wonder how much longer?
The way you describe your symptoms sounds like my husband about 2 and a half years ago, with clear issues with speech, balance and handwriting but otherwise able to be very independent and retaining his personality and sense of humour. He was prescribed Co-careldopa (Sinemet) immediately on diagnosis. According to James Rowe et.al. this should normally be tried though only around one third of PSP patients feel any benefits, and the response becomes weaker over time - we've reached the point where we are reducing this drug.
We were also (a bit later) given Amantedine - this is meant to improve movements and can also make you feel more energised, but side effects can be high for some people (swollen ankles, hallucinations, agitation) - it can only be given in the morning and before lunch as it can ruin night time sleep.
My husband took part in a drug trial, after that finished we were allowed to continue "off label" with an ADHD drug, which appeared to give my husband bit more focus and motivation. I have to say the trial is not concluded and I understand most of the participants at our clinic did not record any improvement.
Of course your specialist must consider what is appropriate for you, I've recommended two articles in a recent reply, that you might share with your doctor
My Husband has PSP and the same happened to him six months ago I wasn’t able to wake him one morning. I called 999 and the paramedics also attempted to wake him for over 30 minutes. His observations throughout this time were within normal limits. He was about to be transferred to the ambulance when he just opened his eyes, and was absolutely fine chatting and asking for a cup of tea. A later conversation with his neurologist advised it could have been an episode of hypo delirium as during this time he had had a move of bedroom and this small change in routine was felt to be too much for him to process. Even though he hasn’t had any similar episodes, he does have times when he becomes zoned out, loses his mobility, coordination and communication. We have come to the conclusion that it is all linked to times when his routine changes or has an appointment and it becomes too much for his brain to process. After a day of rest he is back to his old self, although I do look to rule out any signs of infection. This maybe is what happened to your mum after her visit to you. I also posted a similar question in the chat and at the online carers forum a while ago and have had similar responses of this / similar happening to loved ones with this awful disease.
Thank you Bertieandpiper for sharing your story, it sounds very similar to my Mum’s episode and behaviours. It definitely takes her more time to rest and ‘recover’ after any outing or change in routine as you put it, as much as she enjoys it.
All the best to you and your husband. PSP is such a horrible unforgiving disease, it’s comforting to connect with others out there sharing the same unfortunate experience.
Hello. Yes I experienced this with my PSP person, it wasn't scary though once I understood what it was, it was actually a lovely peaceful time for them I thought, totally relaxed in the moment and absent from the disease. I dont know where they go in their brains but it seemed to me to be somewhere peaceful. My PSP person could get over stimulated very easily especially with a friend visitor or health visitor and the howling crying as you describe was a feature. That was more distressing I thought.
Hi DaffodilPrimerose thank you for sharing. I like the way you’ve described the deep slumber. My Mum looked very at peace and comfortable whilst I was frantically trying to wake her up!
my hubby goes into very deep sleeps and no way can we wake him. He can sleep through a bed bath and having his bed changed. He often misses meals. We just let him sleep. He’s certainly nearing the end of his 10 year journey
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