Mum's progression of PSP

[Spiderwebb21]

Hi everyone, my Mum was diagnosed with PSP in 2018 and the time has now come where she needs full time care, so she is moving to a care home in 2 weeks time. Since her diagnoses she, and our family have remained in good spirits and kept a positive mental attitude, and still do, which helps massively.

Due to the PSP Mum suffers with very little mobility, increasing difficulty swallowing, weakening speech and increasingly is complaining about her eyes. She tells me everyday she 'can't see' which, when I probe she explains her vision is blurry and her eyes are sore. She has regular eye drops and is on a (long) waiting list for a consultation for Botox in her eyelids. She wears dark sunglasses whenever she is outside, and often closes her eyes as it's difficult for her to keep them open.

If anyone has any stories or tips they are happy to share, I'd love to connect. (I am in Surrey UK)

Thanks for reading.

[Planthead]

Hi, my dad has cbd, and is lives in East sussex, I live in South Croydon, we have been in touch with the psp support group which meets on line or at East Grinstead, which has been very useful for families and carers. I have been taking my dad to Hurstwood Park, for botox to his hand, from consultant Angus Nisbett, he seems to treat a few cbd patients, other than that , it's been like pulling teeth to find the right NHS care, currently we have an parkinsons nurse, and a frailty nurse, who are ok. He is not far off from full time care, but my mum (84) is just about coping, with a carers coming in, which is an on going nightmare between the council, over the costs.

[Dance1955 in reply to Planthead]

My heart goes out to you so sorry you must be so worried about both your mum and dad Hopefully you can find a nursing home close to home so mum can visit without too much effort

I have recently put my husband into a nursing home it’s hard but I can go when I like bring him home for the day if I want to I am only 66 but after nearly 6 years of caring it just got too much

Good luck with it all and just remember be picky and if necessary write things down for the nursing home my husband can’t speak so I have notes stuck all over the wall because of the different staff that go into him

I don’t care if they don’t like me just as long as he is ok

Take care 🥰

[Spiderwebb21 in reply to Planthead]

Hi Planthead, thanks for replying and I wish you luck in finding the right support for your Dad.

[Jackiedog]

My mum is in a care home, similar stage to yours by the sound of it. I’ve just ordered her two pairs of prism glasses free from the PSP Association (one for reading and the other for tv). She has tried them and said they helped, but I haven’t been able to see her to find out how helpful they are due to a COVID outbreak at her home. Unfortunately the blurred vision is yet another of this diseases cruel symptoms. I’ve ordered her an audio book for her birthday as her hearing is still excellent, hoping that might be an alternative to TV and reading if the Prism glasses don’t help enough.

[Spiderwebb21 in reply to Jackiedog]

Thanks Jackiedog for sharing. Mum has tried prism glasses previously but they didn't work for her. I might however try them again - we'll try anything! Good shout about audio books. After reading your post I discovered that my local library service offers free rental of audio books so I have signed Mum up and she has spent loads of time already listening to a book by an author that she previously read. Little things like this make such a big difference. Thank You.

[lfc_elmo]

My dad was transferred to the Care home beginning of the year after a terrible fall. It was the best place for him as he requires 24/7 supervision which we couldn’t provide.

He too also complained about not seeing. We had countless visits to a eye hospital which they kept concluding was nothing wrong. In the end it seems like a symptom of PSP. His eyes are always shut as the light affects him to much.

Wish you and your mum well on this journey. This is a horrible disease.

[Spiderwebb21 in reply to lfc_elmo]

Thanks for replying, wishing you all the best for your Dad in his care home.

[mav46]

So sorry to hear of your mum my heart truly goes out to you. My mother sadly passed away in November after battling this dreadful disease for many years but she sadly had lost her sight completely which is unusual I understand. Although she did say she could sometimes see with a blurred vision like through fog so we were never sure but her mind remained fantastic and that was a huge comfort as she still remembered things we had all forgotten from years ago and she always knew who we all were which was incredibly positive. I am so grateful that my dad sorted out all the family photos and she had looked at so many before she lost her eye sight. However please dont think that is normal and dont spend time worrying as I say this was hugely unusual and my mum was incredibly brave. I do believe that eye drops helped. Also she was prescribed something to help her saliva. We managed to keep mum at home in Sussex because my father did a fantastic job however I did feel at times a qualified carer may have been better especially for showering and washing etc so rest assured as hard as it may be your mother and your family to be in qualified hands is a positive in my opinion. Have you contacted your local hospice ? They were amazing for my mum but with Covid 19 it complicated matters on various elements but they are a superb support network so may be worth looking into as they cover neurological disorders not just cancer. Another thing was mum used to enjoy listening to her 'talking books' which you can get from your local library free of charge if your mum is registered disabled but they were fantastic at ordering and this was a huge comfort as my mum could no longer read. My heart truly goes out to you all and if I can offer any more advice please contact me anytime. Big hugs to you all xxx

[Spiderwebb21 in reply to mav46]

Hi mav46 I'm sorry to hear about the passing of your Mum, it sounds like she fought hard for a long time.I haven't contacted a hospice, thank you for bringing this to my attention, something to consider for the future. After reading yours and another person reply I've discovered audio books available to download via an app linked to my local library. A great idea and Mum is already enjoying listening to stories.

Thank you for offering advice, it means a lot. Big hugs back x

[Rubikcuber]

Hi. Im so sorry that it has reached gnis stage fir you too. My Mum was diagnosed in Dec 2019 with PSP. She has just had her fourth hospital admission within the last year after falling and has also now been confirmed as needing 24 hour care. Is it residential or nursing you will be looking for Mum? Hospital originally said residential but have now changed to nursing so looking for a step-down place at the moment so she vacancies come out of hospital but will have to look for somewhere permanent within the next few weeks. Mum frequently has the same issues as yours with her eyes. She has hyloforte eyedrops for the day and hycosan eye cream for night time. It does seem to help a bit. She is due at the eye hospital in a couple of weeks so I can update you after that. Mum also has mild alzheimers and advice from them is that Mum will pick up on my mood so I always try and be cheery for her when I call or see her, and that definitely helps with her. It's horrible seeing them deteriorate, but definitely agree that being positive helps although not always easy at times. Hope your Mum settles in quickly in her new home. Sorry I've not been able to offer much help but just wanted to say what has helped mum.

[Spiderwebb21 in reply to Rubikcuber]

Hello Rubikcuber, thanks for sharing your experience with your Mum and it really does help so please don't apologise! My Mum is moving to a home which is both residential and nursing. We realised quite quickly into our search that to make the move future proof she needs to be somewhere with nursing, although at the moment she doesn't need it. However with the future looking like she'll need PEG feeding, and goodness else what else might come our way, it reassuring to know she will be living somewhere that can care for all her needs. Being cheery makes such a difference - I admire your spirit.

All the best with your Mum, my Mum had several falls also in the couple of years after diagnoses. We just did our best to make her living space as risk free as possible and made sure she always had someone with her when out and about. Now she uses a wheelchair when out because she is not mobile enough to walk anymore but at least it means no risk of falling. At home she uses a frame on wheels but only gets up and walks about when people are with her.

Thanks also for the mention of the eye care. Yes let me know how the eye hospital goes.

All the best.