Hello Everyone,
I am caring for my elderly mom 86 who was diagnosed with PSP over 8 years ago.
Lately she’s been having recurring UTI’s and we’re in the hospital very often. Just last week, she started going into deep sleep. Not sure how much of it is due to the UTI and how is from progression of PSP. Does anyone have any insight or can share their experience?
Thanks!!
Larry has gone through periods of lots of sleep. He isn’t on any medication. He’s taken to sleeping most of the day. Not sure how much he sleeps at night. I’m usually up between 4 and 5 and he’s awake most of the time.
The UTI may be adding to your mother’s sleep.
I did read in a post on this site that due to PSP there is more sleep as the brain cells that are working are doing overtime to keep up with demand. They get worn out faster and need to recharge.
Hi Sam_S,
My mom (also a PSP patient) used to go into deep sleep quite often. We used to make her walk a couple of steps (at least 2 people to support - one on each side), constantly talk to her, make her drink/eat something (if she opened her mouth a bit) to wake her up from deep sleep. For her, mostly walking a bit worked.
Hallo, Sam,
I'm so sorry to hear about your Mom. I also looked after my Mum for several years. My experience is that PSP profoundly interferes with the patient's sleep.
My mum was unable to sleep properly for many days at a time and was driven to desperation over it. To be sleep deprived is a terrible thing and naturally, it made many PSP problems with speech, movement and concentration even more difficult than usual.
But sometimes she would go into a very deep sleep, sometimes for 12 or 14 hours, from which we would be virtually unable to to wake her. Once she went into such a sleep when she was in hospital for some physio and the medical team thought she had had some kind of brain event. I had to explain that it was "normal" for my mum!
Actually I think sleep disturbance and disruption was perhaps the thing that caused my Mum the most distress, perhaps even more than incontinence. I dont believe sleep disturbance was caused by UTIs in my mum's case.
I'm sorry that I don't have any positive suggestions. But I send you and your Mom all good wishes. Keep in touch.
Amanda.
Thank you Amanda for your warm wishes, your heartfelt message and for sharing your own personal experience.
My mom is in the advanced/late stages of PSP. She was properly diagnosed 8 years ago, after being misdiagnosed couple years before. She’s been wheelchair bound for a few years now. At the same time, she lost her ability to speak. Two years ago, she had a PEG inserted since she could no longer eat or drink. She can’t even swallow her own saliva. Just recently, she’s been bed ridden and sleeping all the time. We’re in hospital now because of a UTI. Sometimes she would wake for a minute or two, but at other times even the doctors can’t wake her.
I hope that in replying with more detail, perhaps others would have an experience to share as well.
Again, Amanda thank you for your message.
Cheers,
Sam S
Sam, I appreciate your sharing with Sarah about both your Moms. What I would appreciate are two things which are how do I join your PSP UK Group and I would love to find a person or caregiver near where I live in the USA called Pawleys Island, SC that are between Charleston and Myrtle Beach, South Carolina. I thank you Sam in advance for your support for all of us that deal with PSP
Tom, you could go to pspassociation.org.uk and sign up. You could also download HealthUnlocked app on your smartphone; all for free.
Thank you for your message,
Sam
Hi Tom, I'm afraid I can't help with finding a PSP caregiver near where you are (I am in Kent, SE England and looked after my husband with PSP until he died in October 2016), but just to say that I know Pawleys Island and it is a very beautiful part of the world. My sister lives in Columbia SC and we have spent several holidays in the Charleston area. I hope you are successful in finding someone nearby. We are lucky in UK in having very good local support groups details of which are on the PSPA website.
Vicki
Hi vlh4444, May I ask how long your hubby had P.S.P for ?? My hubby was diagnosed wrongly 7 years ago.
Cheers Marg H
He was diagnosed in June 2013 but he first consulted the GP about the symptoms in January 2013 (it took six months to see a neurologist!). However I think there were signs that he had had it since about 2007. I think it likely that people can have it for very many years but that it is only when it starts to affect parts of the brain that cause unmistakeable difficulties that anyone investigates.
Hope you and your husband are managing OK. How long has he had the PSP diagnosis?
Vicki
Sam S, Your Mums situation sounds very similar to my hubby, he was originally diagnosed with Parkinsonism, 7 years ago, I actually worked out his actual diagnosis after reading an article in a newspaper, he had a P.E.G. inserted in July last year and now can just pivot transfer. I am exhausted continually as he wakes easily 10 times a night, confused and wanting to urinate but finds it difficult. We just changed his medications hence the only waking 10 times, it was up to 40 times every night before. Unfortunately I have come to the decision that I can no longer care for him, am waiting for placement into care. It helps to read other peoples experiences, and know you are not the only one going through such a horrid time, the not knowing how long they have is the worst, I certainly wouldn't like to continue living like that.
Cheers Marg H
Sam, your question seemed more concerned about the deep sleep, but if you're interested in info on UTIs, the community has recently provided a lot of info in the string I started called Why So Many UTIs? The advice is invaluable
Good luck and hope your Mom's journey eases.
Anne G.
Are sleeping tablets suitable for someone with psp?
PSP noises screaming while sleep
Black outs or falling in deep sleep 
Has anyone with PSP experienced an abrupt change in their sleeping position?
Does anyone know if deep brain stimulation could help for psp?
