help please - is this end stage MSA - Parkinson+

[Dankhl]

Hello

I posted this on the Multiple System Atrophy community but hoping someone here might just have experiences with my concerns now

I’m new here and would really appreciate your sharing as my husband is showing new symptoms not present previously.

Just a little background.

He was diagnosed in 2020 with MSA and probably had it since 2014 but was undiagnosed as such. He was still walking, good speech 2 years ago but over the months, has declined very rapidly.

He has been hospitalised almost every other month with either aspiration pneumonia or sepsis due a very resistant hospital bug. Every episode deteriorates him and even with diligent rehab - he never returns to the pre-hospitalisation form.

He is now bed bound but we still get him on the geriatric chair, do some cycling on the Motomed, catch some sun outdoors 

But recently - he’s just sleeps the entire day and night. He’s probably awake only because we clean him etc . Brain scan show no stroke etc apart from the MSA anomalies.

He is unable to talk and has very limited movement. He’s on a suprapubic catheter, PEG feed tube and recently needed a trach with a ventilator only at night. His lung capacity is diminishing

 His main fear is this “locked-in” feeling. Would anyone know if the cognitive ability diminishes as well ? And your experiences with the excessive sleep

Would really appreciate your experiences what could help or perhaps how to alleviate the inevitable. Where I live - the healthcare is good but it’s a very rare disease 

Appreciation for your help in advance 

Thank you

[LAJ12345]

Have you tested him for covid or has he had it recently? It can cause excessive sleepiness. Or low thyroid function. Or it might be the disease but it doesn’t hurt to consider other possibilities too.

[Dankhl in reply to LAJ12345]

good point and yes the doctors did very comprehensive tests

Aside from a few markers slightly off - no suspects

But thanks for the thought

[LeharLover62]

This sounds incredibly difficult and I’m sorry!

We have been through a milder version of this. Hubby has had rigidity PD for 16 years and the last 2 has had 3 hospitalizations for infections. (2 for sepsis) Fortunately there was enough time in between, and he’s only 60 , so he rehabbed pretty well.

His diagnosis at this point is likely some kind of Lewy Body or Parkinson’s Dementia, but they said MSA could not be ruled out. He has had pretty severe fatigue for years, but he can sleep for 5 days straight when he’s going through something…it happened after each dose of COVID vacc…it happened last week when we both had a really mild 24 hour flu and sometimes it happens and I can’t figure out why. But these usually align with more severe constipation or his meds being off…dopamine too low.

So I don’t know if he takes levodopa, but if he doesn’t have any infection or illness, it might be that his levodopa is too low. Hubby also suddenly perked up with certain supplements like mannitol or Vit B1 high dose. So I systematically test and try each thing and monitor closely for other symptoms like fever or UTI.

Just some thoughts, it’s so hard when they are this sick because you can’t tell if there’s an infection or some problem with the meds. Hubby always “tells me” if he needs to go to the hospital because when he spikes a fever, he becomes delirious and then I know he needs help.

Hang in there!

[Dankhl in reply to LeharLover62]

really appreciate your thoughts. So sorry to hear what you’re going throughWhat you’ve described sounds familiar - the constipation, delirium and even the side effects from the vaccinationMust be tough for you as well - take care and thanks. Really