Saying hello on behalf of my mum who has PSP and her daughter - primary carer

[Lookingoutformum]

They live in South Manchester and are struggling. My 93 yr old mum was officially diagnosed with PSP in hospital around August 2022 midway through 12 week stay after a heart attack (she also had Covid whilst there). Thinking back, she was showing PSP symptoms at least a year previously.

In recent weeks she has also had a diagnosis of vascular dementia confirmed.

Mum is not a model patient. She is urinary incontinent now and has a catheter in place which she loves to pull at and remove frequently. So far without serious injury.

My sister is not getting any sleep due to Mum calling out LOUDLY random words (often the last word of a sentence she has just heard someone say) or worse screeching cries all times of day and night. She says she does know why she does it. It is involuntary although she can suppress the urge for a little while, she will start again.

Mum does not seem to need to sleep for very long and enjoys 'power napping' during the day to keep my sister awake all night.

Has anyone else experienced similar calling out please?

Thank you for reading.

GR

[AliBee1]

Hi, I am so sorry to hear of the problems with your Mum. My husband failed completely to understand that night time was supposed to be for long time sleeping. He did not call out random words but he grunted a lot or mumbled non understandable sentences. I found that playing his favourite type of music often eased his agitation. I hope that this will help: anything is worth trying. Good luck and big hug AliBee.

[Lookingoutformum in reply to AliBee1]

Thank you AliBee, G

[LuisRodicioRodicio]

Hi Lookingoutformum!

These are the experiences that I have been able to collect. It is important that you discuss them with your doctor.

Symptom control: Most people only take medication for symptom control.

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

[Lookingoutformum in reply to LuisRodicioRodicio]

We will look into what you have said, thank you for taking the time. GR

[OllieFisher1]

Yes. My father mostly does not sleep well at night. He is unusually alert and paranoid often hallucinating. My mum and I were looking after him, but after 3 weeks of no sleep, we were burnt out and had to face that he needed to be in a resthome. Its a tough journey with no sleep.

[Lookingoutformum in reply to OllieFisher1]

Thank you. We feel that it will come to that sooner than we expected. GR

[GAS-25]

Hi, I am so my sorry to hear of your Mum’s diagnosis. I am unsure if you are aware, but there is a PSP support group based in South Manchester. I believe they may now meet in Bramhall and may be able to give you help and advice. The PSP Association will be able to provide details.

[Lookingoutformum in reply to GAS-25]

Thank you for that . Yes indeed there is, we look forward to joining the next meeting. GR

[schnauzerlover]

my mum had Alzheimers officially diagnosed whilst in hospital a month before she died aged nearly 89. She cried out all the time and was very agitated with her dementia. I feel for you. It's heartbreaking

[Lookingoutformum in reply to schnauzerlover]

Sorry to hear that. Thank you for your thoughts. GR

[daddyt]

GR - we know the crying for no apparent reason is the pseudo-bulbar effect and can be a symptom of the disease. It can also manifest as laughter, which I think most would prefer over crying. Try not to fret over it.

Tim

[Lookingoutformum in reply to daddyt]

Thank you daddyt. GR