msa end of life pallative care

[notagoodthing]

I was diagnosed with parkinsonism some years ago more recently with MSA my MSA symptoms are worseing and wondering if anyone can tell me about end stage / end of life symptoms.

[Ruffner]

I would be interested in knowing more about this also. At our last neuro appt. my husband's doctor suggested hospice. He is still mobile though it is very difficult for him. He still feeds himself and has a decent appetite though losing weight. He is 79 years old and very weak. We don't know if hospice is appropriate now. Hope others with more experience chime in.

[Derkie54 in reply to Ruffner]

Hello,

A good post which will be of interest to many.

My wife barely feeds herself now and is also quite weak. She has no mobility at all and has to be lifted and transported by wheelchair inside and out. Her lack of interest in most things is very sad but understandable, so all I can do is support her as best as I can.

Coping gets harder for us as time goes by, luckily I'm bigger than my wife, I do sympathise with wives who have to lift and handle their larger husbands.

Also the people who live alone must find it incredibly tough.

What stage are we at, I don't know, we're still afloat as it were although the list of things we can do gets shorter all the time. When the time comes and we're sinking then I suppose we'll have to do something about it.

Take care everyone.

Derek

[MF31 in reply to Derkie54]

We are at a similar stage he is peg fed but does eat a little of what he likes, hoisted with everything now and we have carers which are a big help with showering an moving him although I obviously still have to move him when there not here bigs hugs to everyone on this journey

[Cat-gal]

Ok, not an easy thing for me to type but I saw my husband in hospital yesterday who is being fed and medicated by tube and he will have to go into a nursing home. He is seeing a neurologist today so I hope to learn more. His mobility is just about zero as well. It must vary with different people though, but wherever he will be the most comfortable is the main thing.

[DeeMilo25]

hi

I would be very interested in some answer to this too, as we had a call from our Parkinson’s Nurse yesterday and she said Dat-scan confirmed that Les has MSA and she was referring him to Hospice for Palliative care , he is not mobile anymore and this has been since August when he was walking with a walker, now can’t stand unaided can’t walk at all, being transferred with Sara steady , Physio called this morning and said they would no longer be coming as they feel he is at his base line and they can’t improve that for him 😩 , still eating but only with one hand as other hand doesn’t work very well, he has a supra pubic catheter In, and at the moment has a chest and water infection, he groans all the time when breathing makes noises all the time , he still has some speech , no one helps or advises us on how far advanced he is, no one has spoken to us about whether les wants Peg tube in future or help with breathing , I really don’t know where we’re heading .

[GreenJo]

Hi - TC now been totally bedbound since October 22 and Peg fed since March 23. He has no speech at all. I am managing at home with carers 4x day, Bipap machine to help with breathing - overseen by hospital long ventilation team. He's now nil by mouth because of aspiration. He has computer from speech therapy - operated by switch. This lets him change tv channel and he can type short message to let me know if something wrong. Hospice nurse visits us regularly- been invaluable re sorting pain medication. Respiratory and Ventilation team have helped re managing secretions I also email MSA Nurse for help/info. It has at times been a difficult process getting necessary services on board. Biggest issue now is recurring infections - managed to fight off so far, but each one leaves reduction in function. TC is cognitively A1 so can still enjoy tv and visitors. Hope this of some help

[Diane831]

in my experience, the sooner you can be in touch with your hospice team the better!! They are there to make living easier and unlike the other teams, who are all about rehabilitating people back to previous health and mobility, they know which way this is going and still want the best. So daycare/outpatient support and therapy teams and hospice at home are all useful, and their support for careers is also really positive. The issue just now for most hospices is the funding! Their running costs increase, but the donating public, who make up much of their income, are being reduced by the general cost of living increases that we all suffer from and so services are under threat.

If someone offers a hospice/palliative care referral then I would suggest you accept it with no worries and get as much support as you need.

Everyone’s journey ends differently, sometimes sooner than you expect, so it’s hard to talk about stages, but there is often that period of very limited life and it’s sad.