Like so much to do with MSA, this is a difficult subject to write about. My wife, just turned 60, had symptoms start (motor & autonomic) in 2016. Although at the time, did not realise they were connected or for a second thought that it neurological in nature. In January 2020 she was diagnosed with Parkinson's but by end of 2021 this was changed to MSA. She had / has nearly all the red flags for MSA.
My wife has been wheelchair bound for more than a year, permanent catheter for past 6 months & her speech is very nearly completely gone. Very cold hands & feet most of the time, and is losing ability to suck liquid from a straw. And although eating / swallowing is becoming more problematic she is not losing weight. She cannot move / turn in bed at all, and she also needs to take sleeps / naps 2 or 3 times per day.
We have had a few episodes of aspiration, and a few weeks ago this resulted in aspiration pneumonia but she made a fast & good recovery. But when she was so ill with this, both GP & hospice recommended that we keep "end of life" medicines here in house for just in case scenario.
We have been married for 32 years. My wife is not afraid of dying, but does not want to die, and each day is eager for all the news from friends & family.
Anybody else at similar stage of MSA, and for those of who may have been at this stage, how long did your loved one last? I realise that there are no hard & fast answers, but I would like to hear of others experiences.
Carpe Diem
Written by
leroybrown
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My Sue was diagnosed with MSA in 2017 after symptoms stopping her working in 2010.
She has had pneumonia twice, plueracy, along with respiratory failure, and SVT (heart irregularities). She is unable to stand or do most things, but she can still ask me to take her to M&S!!!!!
We have always excepted that her condition will shorten her life and have planned for the worst and hoped for the best. We have emergency antibiotics in the cupboard which allows me to start using them when required as this is quicker than awaiting a doctor's visit etc.
This condition changes so many things and lives but you can't beat it all you can do is make it harder for it to progress by planning and making a safe environment as I believe trauma be it medical, medicinal, physical or psychological cause a worsening of the condition.
I would also chat with your local hospice about helping both of you.
Thanks for that Paul & Sue. Our local hospice are now managing my wife's continuing care. They are great. My wife spent 9 days in Hospice during the summer for respite and also to better help hospice understand my wife's care needs. Hospice nurse checks in with us weekly and they are also on the end of the phone at any time. They are great.
As you say there are no rules as to how this plays out, everyone is different!! Geoff had first symptoms in early 2012, was diagnosed early 2013 and passed away end of 2019. He had been catheterised for 2 years, had his PEG for 18 months and needed hoisting for all transfers, but he was up in his wheelchair or recliner all day. He had no speech towards the end and couldn’t use his hands for any communication aids, but he still loved visits from family and we went out in our WAV twice in his last week, we bought new slippers 3 days before he died!
We did have a cough assist machine and suction to help keep his chest clear as well. He was very patient!!
We had a DNAR in place with both of our agreement, and so when to my surprise he quietly stopped breathing in his chair one morning there was no panic about what to do. Fortunately I had just walked into the room and was there when it happened.
Everyone is different. Live the life you have now to the best of your abilities.
I'm so sorry you're in this place. My experience with my mum is that it is different for everyone, MSA doesn't give a pathway. Mum's final stage lasted some months but she did show a lot of the things you are describing. I think having a plan really helped, being very clear about what your wife wants, if she wants to be taken to hospital, and how much intervention would be acceptable. Your local hospice will be able to help with this and manage symptoms - it sounds like they already are. They will also be able to help alongside your GP with the equipment and support you'll need. You will need support too, it's not easy physically or emotionally - please reach out for that. I did write a post about mum's final stages, it's very honest but I think having all the information you need is important so you can plan.
Hi my husband was a practicing GP until 2020, diagnosed with Parkinson’s in 2019, MSA in 2021. He can manage a few steps with support, but is in armchair/wheelchair all the time. Can’t move in bed, has had permanent catheter for the last year, is almost completely tube fed for almost a year, speech is pretty much gone. We go out in the WAV but I have fibromyalgia and chronic back pain, so it is exhausting for me. He has just qualified for some CHC funding, so I guess they don’t expect him to live more than a year.
Hi Leroy, it's great that the hospice are involved and supportive, but please also feel free to get in touch with me (MSA Health Care Specialist for Ireland) if you would like a chat for general support. This is such a difficult time for you all.
So sorry to hear how your wife has been treated by this terrible disease, though glad to hear that she still finds pleasure in news from family and friends. Though everyone's experiences are different, my husband's decline sounds similar to your wife's, and I hope it is not too upsetting to learn that he died 18 months after his diagnosis.
I recently acquired his medical records from the surgery, and found that visiting nurses regularly noted his Karnofsky performance status. I'd hadn't heard of this before, but on googling, found it is a % score which assesses overall health and decline. It also correlates with life expectancy and looking back over my husband's Karnofsky % score, I can see it was fairly accurate. You may wish to discuss this with your wife's medical team, to see if they use it and if so, what is her current percentage.
I don't want to describe the score in any more detail. I have no medical training, and you are best speaking to your wife's nurses or doctors. But perhaps it may help you.
Meanwhile of course, make the most of your precious time together and find something to treasure in every day.
This crummy disease has ruined so many lives. My story is very much like yours. I sleep a lot and my swallowing is problematic like yours. I have been through all of Parkinson's paces and none have slowed this vicious disease. I feel for you because I know exactly what you are going through.
I have no answers for your questions. I wish you God speed and a peaceful homecoming.
A month ago my husband had to go back into hospital via ambulance because he couldn't swallow the clear phlegm he was producing which was a result of him getting Covid in his previous hospital admittance. He's still in a month later with a permanent catheter and peg tube but is deteriorating so needs to go into a nursing home for palliative care. During this time he has done a voice recording with his speech therapist on iwillalwaysbeme.com.
Thinking of you both Kaye31. As my wife is somewhat smaller / lighter than me, I am the hoist. We have been offered additional home care but problem is, is that due to health & safety etc, 2 carers would be needed, to move her - so for time being it just easier for me to keep doing this.
My wife with support of hospice has decided against peg and tracheostomy. I am amazed daily that she still wants to keep going. I guess, when you can see that the end is coming, each day becomes that bit more precious.
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