Excessive Sleeping

[binnyrox]

My husband was diagnosed in early 2020 with MSA. The decline was rapid - he is now on PEG for feeds, intermittent urine catheter, flatus tube for bowel movement, and a tracheotomy with ventilator on at night

He has speech therapy, physiotherapy, occupational therapy that fills up his days

However in the past week, he has had very few waking hours. He was awake for just 50 minutes today.

Could anyone please help with any feedback? I know his disease is at an advanced stage; however his parameters and bloodwork are all stable.

Would anyone be familiar with end stage MSA - is excessive sleeping a common symptom

Would really appreciate your input

[TK-67]

yes - it can be part of the end-of-life process, it is normal. I posted this link a while ago as my mum entered the final weeks. It helps to normalise what is happening. It's common for obs/bloodwork to appear normal. My heart goes out to you, reach out for any help you can get, it can take time and you may want to discuss the support you and your husband now need. Mum had made the decision long before she was ill that she didn't want any interventions so it was just about keeping her comfortable as things progressed. We found surrounding mum with conversation helped so she knew we were there. I hope this helps a bit, it's hard often to share the process. youtube.com/watch?v=ayMhA1p...(Not working as expected?)

[binnyrox in reply to TK-67]

Thank you very much for writing. It truly helps and I’m deeply appreciative that you’re here sharing

[Morganthreewheeler]

I am sorry to hear of his decline, my wife passed away in December and the Physiotherapy helped keep her mobile to the end. We had a Neuro physio twice a week doing a number of specialised exercises which enabled her to walk a short distance as well as eat unaided, sit up in bed etc

[binnyrox in reply to Morganthreewheeler]

Thanks much for your note. I’m immensely grateful for the information.

[Purplestar2 in reply to Morganthreewheeler]

Hello, I’m just searching through old posts with my Mums symptoms so hope you don’t mind. Did you get the neuro physio twice a week on the nhs? The physios won’t come to my Mum anymore (no capacity) but she really needs these sessions to encourage her walking and eating/drinking. I am so mad and sad at the same time! The worst bit is the person who leads that team used to work with my mum for a decade! I feel like everyone’s given up on her. She spent 30 years working for the NHS too.

[Derkie54 in reply to Purplestar2]

Hello,

I share your frustration, as well as the MSA my wife has had 2 strokes.

I asked if she would be given physio and they said no because she's comorbid.

I'm the only source of encouragement now and take her out as much as possible and chat to her even though there's not much response.

It must be very upsetting for you seeing as your mum was part of the team for many years.

Take care and smile when you can.

Regards

Derek

[FredaE]

yes..it is one of the few meriful things about this merciless disease