I would like to start by saying happy holidays and almost Merry Christmas! I love the festive atmosphere even with covid times, having the tree up and lights around really brightens our days already.
This is my first post and for a bit of a background on us my mother in law was diagnosed with MSA type C about 3 to 4 years ago now roughly. A few years before her diagnosis she suffered from dizzy spells and they could not diagnose her for quite some time. Since her diagnosis she has deteriorated significantly especially in this last year.
Her speech is now barely understandable. She cries and laughs uncontrollably more often and pees/poos herself quite often as well (incontinence went a long time ago). She has also started screaming when she doesnt like something, for example she hates having her teeth brushed at night now. She doesnt want any feeding pegs or catheters so we change her often and have a hospital bed in the living room. She drinks her milk food supplements(ensure) and soft foods from time to time. Her entire left side of her body is locked and cant move (knee is locked, hand is locked shut). She shakes every minute of the day, and shakes badly when she tries to do anything or feels stressed. She has hair loss and lack of control in her neck and swallowing is very difficult as well as saliva build up she spits out.
We move her from couch to bed and during changes to avoid bed sores however she is basically bed bound if we didn't do this. I just don't know anything about the deterioration of MSA and I keep thinking how can it get worse...and then it does. I think what I'm asking is how do I know when we are nearing the end? I am a social worker so I have a very hard time accepting things getting worse and not being able to help. I am grateful she doesnt have memory loss and can still interact with us to some extent but I dont know how to prepare our family for what comes next or even prepare myself. Her grandchildren are still very small, 3 and 1 yrs old that love and adore her dearly. Living with her daily the changes occur subtly for us however when others see her they are shocked with the contunied deteriorations. Does anyone have any advice or personal experiences that could help me further understand what lies ahead?
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Shanie7
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Welcome to the forum, although it's a shame you have to be here.
It's a good question but as others have said we all seem to have different journeys and how things will progress is a bit uncertain.
I would speak to the MSA trust they will be able to give you a better idea, we on the forum are only expressing opinions and our personal experiences.
In my wifes case she is stable at the moment with no recent changes but has also had continence and balance issues for some time. L also laughs for no reason and needs help to wash, dress and use the commode. Like your Mother in law she stays in one position until she is moved.
Your mother in law seems to be more advanced so I cannot give you much advice but keep going, I'm sure you're doing your best and a doing a great job caring for her,,,,,,,,,,,you can't do anymore than that Shanie.
Thank you for sharing that does honestly help and I know its difficult to share the updates. I had a hard time even writing it down realising how bad its got but I do want to be open and learn as much as I can about what its like for others and for her. Its so difficult as I've seen so many similarities but also a few things that she hasn't experienced that others are experiencing. There really isn't a guide to MSA but I do really appreciate this forum and how open and supportive everyone is. Thank you so much!
hi shanie merry xmas to you all my dad was. diagnosed at 79 , this time last year he was getting a lot of chest infections
which made him very tired , anyway he ended up in hospital in feb as they thought he had had a heart attack , but it wasn’t , just falling into very deep sleeps
to cut a long story short, his swallowing had suddenly got really bad , so he was waiting for a peg feed , unfortunately with covid happening, it wasn’t going to happen any time soon ,
i think when the swallowing problems start , it can be last stages
my dad decided he had had enough and took the opportunity to go (he did confide in me a few years before ) , refusing feed in the hospital, and passed just before lockdown at age 84
everyone’s journey is different, he wasn’t happy being how he was .
not sure if this is much help and you just can’t really prepare yourself as the disease is so unpredictable
the MSA trust maybe able to give you more advice ,
Thank you so much for sharing and being so open we greatly appreciate it. Honestly everything you've shared has been so helpful and gives me an idea for what to look for. My MIL has definitely continued to deteriorate during the lockdown and her swallowing is getting a lot worse. However it does give me hope that she is still trying to eat soft foods and we aren't quite yet at the point where she needs a food peg.
She hasn't had any chest infections but it does really help to know as I've found she does have a lot of symptoms most have had at some point, just a matter of when it happens.
I am so sorry for the loss of your father. My MIL has alsp told me on a few occasions she is ready to go and I dont blame her as it is so difficult to be fully at a loss of control in every aspect. I just hope she doesnt continue to suffer and can be at peace when her time comes. Its so sad and such a difficult illness to accept, I cant thank you enough for sharing. X
it is hard seeing them struggling, my dad was such a proud man and very fit and healthy, so hard for him , i really hope you can have a lovely xmas with her and the grandkids , my dad loved seeing his family , it made it all worthwhile for him , we had a lovely family xmas last year , so pleased we did sending love and hugs xx
My MIL is definitely the same, very difficult for her to fully rely on us and not being able to help or cuddle the kids. But we are making the most of every birthday and Christmas we have together! She loved seeing the tree up and lights so we take it day by day and try to make it as comfortable and lovely as we can for her. Hope you have a lovely Christmas this year and remember the beautiful moments and memories with your father x sending out love back!
Hello, and Happy Christmas when it comes! I feel that for family members, living daily with unknowns/unpredictability of the condition, and continually facing factors outside our control is quite psychologically tough going. Even health professionals seem to like the reassurance of being able to say oh well my dad has a year left. They said that for the last three years running now and he just keeps going! 😉 I guess if there's an upside, observing how the condition affects our loved one individually can really build resilience and confidence as a carer..if anyone who doesn't know the condition tries to give you certainties, you can take it with a pinch of salt!I guess I feel a bit in limbo in general life, because Dad has been deteriorating so gradually that it can seem like there's no momentum for him,so there isn't always something that can immediately be done to respond. (Which tends to make me feel better if I'm doing something to help). I aend up just trying to be creative,eg about making him nice things to eat or whatever.
Just from reading this forum, it seems like some people just pop off one day,and others go through an extended phase of looking like it's end-of-life and then they pick up a bit, and back and forth. But here I am slipping into trying to give you an answer when I guess there really isn't one.🙂 Dad has effectively been bed or chair bound for several years, with limited speech and bodily control.Somewhere on the MSA trust website is a fact sheet for GPs that gives suggestions of different stages of MSA in relation to treatment. It sounds like your mother-in-law would fit into the advanced one, but I guess that still doesn't give us any sense of time scale. In relation to preparing children,I guess there are generic resources out there from other charities like Marie Curie or something, that might give you some inspiration.
I do hope you manage to to enjoy Christmas, and make the most of the fun times.
Thank you for your response and sharing. Omg I can not agree with you more there! Professionals told us a year and shes 3 years going now too! 💪
Your entire post has been so helpful and I definitely will be checking in with the MSA Trust to further explore and find supports to prepare us as much as possible. But like you said I don't think there is really a way to prepare or help her until things continue to change. I do find there to be ups and downs, deteriorations and periods of stability. Its such a challenging illness but its so refreshing to hear from others going through similar experiences, it feels more personal than speaking with professionals at times! Thank you so much for sharing your experiences and the support X
I was just wondering what support you have? You may find the local hospice would be able to help you all, in preparing the children, to providing you with respite and someone to talk to. Ours have been amazing, not just for mum but in offering somewhere to go to (virtually in these mad times) to have someone to talk to who understands. When mum got very sick quickly they ended up being the key organisation who were able to find a way through the emotional turmoil. Mum's looked after in a nursing home but even then they were there to ensure that everything was in a place if she deteriorated quickly, despite not being able to go into the home they still keep in touch and I has telephone support throughout the pandemic. Helps me to keep the strength to keep going.
Thank you for your response and at the moment we aren't receiving any supports as we are told we need to do so privately. Her husband does not wish for her to be outside of their home and while he can still care for her this is their wish. We have a morning carer in place and would need to explore full time home carers as and when needed as they both do not want her in respite care externally. I think its an amazing support system as we were in contact with this as an option. Exploring this further and having someone to talk to would be beneficial though as I do feel we are quite in the dark with what comes next and emotionally it is a lot for everyone involved. I'm so glad to hear you've had a positive experience with supports in place, all the best x
Hi - many hospices offer their services in peoples homes, it really is worth speaking to them, they will also be able to help you with putting other support in place, I think that's my biggest bit of advice at the moment.
Reading your post I think that we are at a similar stage with MSA although circumstances slightly different.
At the end of October Alan was admitted to hospital with aspirational Pneumonia. We had been having a great deal of trouble with feeding as his swallow was so bad and he was due to have an assessment for a PEG a couple of days later. Due to the aspiration he was nil by mouth and on antibiotics for over a week and by the end he was begging for food. The first few attempts to fit a Nasal Gastric tube failed and I’m ashamed to say that I completely lost my temper because he was so hungry! Once the NG tube was fitted he improved and was sent to have a PEG fitted but he ‘aspired’ (is that the word) and we were called in as they obviously thought he was about to die. Luckily he recovered but now there is to be no PEG just ‘risk feeding’ and he is coming home soon I hope to continue with palliative and community nursing. Having said that there are times when I look at him and feel that he is not ‘end of life’ yet, he still shows an interest in things going on around him and after I gave him a shave and, with the help of my daughter, a hair wash while in the hospital bed he looked ‘good’ (difficult to choose the right word there).
We are just going to try and make it as nice a Christmas as possible.
Best wishes to you and I wish you a Merry Christmas too.
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