My dad has MSA and I’m so incredibly sad! It’s robbed him of his speech, mobility and independence....how are we expected to just accept this??? I see other couples around his age enjoying life and think how unfair it is...why him...it’s soo bloody hard to deal with.
I find myself thinking about him all the time and bottle so much up which I know isn’t good but there just aren’t any answers and I find people don’t want to talk about it. There is so much out there for dementia and cancer patients but no one knows anything about MSA and there is no support. It’s just so very sad.
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Battack75
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I hate it too. My Mum nursed her husband through kidney failure and dialysis and was diagnosed with MSA within 6 weeks of him dying. She had planned to do some living after being a carer for so long. Now, only 18 months later, she needs carers. It’s not fair!!!
There isn’t much out there but I think you are in the right place with this forum and the MSA trust do what they can to help. Ultimately, you have to live day by day and get on with it.
It’s the guilt I feel that’s the worst. I can’t be a full time carer and wouldn’t want to and my Mum has said she doesn’t want me to. And I can’t help wishing it would end sooner and peacefully rather than later and with all the loss of dignity my Mum is going to suffer. She is proud and independent and dignified and has been all her life. I don’t want her to have to give that up at the end.
I feel like you are reading my mind!! It’s so hard to see them loose they’re independence and slowly deteriorate infront of you. I think about my dad constantly and he is needing more and more care. This is not how he’s life should be 😔
Hi, understand exactly how you are feeling. It is a horrible condition and it breaks my heart to watch my mum struggle with it every day. It is unfair! We also feel we don't have enough support from any of the professionals involved in mum's care, mainly due to the lack of knowledge of the condition. We have found the MSA nurses really good though and have now started getting mum's community nurse and GP to liaise with them too. They have really been helpful and are very understanding. Please don't feel you are alone with this, we are all here to support each other and understand how hard it is.
Hi, there are specialist nurses covering various areas of the UK. We have always spoken to Samantha Pavey she has always been really helpful. I have copied her contact details from the msa trust website but on there you will find details of all their specialist nurses.
Samantha Pavey is the MSA Nurse Specialist for the East of England and trained at Addenbrookes Hospital in Cambridge.
She has over 25 years of experience and has worked in neurology most of her career, including Atkinson Morleys Hospital in Wimbledon and later as a Ward Sister in Hertfordshire. She has worked in the hospice setting and within the charity sector at management level. Most recently she worked as a Parkinson’s Disease Nurse Specialist and undertook further studies at London South Bank University.
we know what it is like to be able to do nothing to help and we feel for you. This is another of those times when you have to remind yourself that nobody ever said life was fair and if they did they were either lying or stupid. You may not be able to do much to make things better but you can certainly do a lot to make things worse.
Its awful to see everything you wanted to do being thrown out of the window but the only person to suffer if you fight is you.
Try to put your energy into making good things happen. Fight the effects of The Beast and dont let it ruin your life which is what it wants to do. . Your poor dad may not be able to speak but there are things to help him communicate. If you have not already done so, please contact the MSA Trust in London. They have specialist nurses who really do know all there is to know and will liase with your medical advisers. There are support groups and plenty of information and you can phone or email for advice
He may not be able to walk but he can sit and listen to the birds or music or what ever he enjoys. He may not be able to go to a big football match but he can be taken to watch the local youngsters playing. - things like that.
My husband and I used to go to a regular supper club in an upstairs room. The last time he went he could not get down the stairs and the others had to carry him It could have been horribly embarassing but we all helped to carry him and we laughed about it.. Next day I got a note from one of the other people in the restaurant talking about the indomitable human spirit and what an inspiration we had all been. We changed the venue after that and he was able to come with me for another six months.
They say you judge the ability of a General by his ability to organise a retreat - think of D-Day and this is what MSA patients and their friends have to do .In doing so they find joy in unexpected places.
Hi, I too hate this condition and my heart goes out to you. My dad was diagnosed just as he eventually retired after working into his 70s as he lost half of his private pension in the financial crash. Both he and my mum planned to travel and enjoy their much anticipated retirement. It is so unfair for everyone who gets it.
All I can say is that without the support of the palliative care team at their local hospice, things would be a while lot worse. They helped secure CHC funding so at least they don't have to pay for dad's care. They also provide much needed advice and support. I don't know whether there is a similar service you could be referred to? Many professionals do not have the knowledge of this condition to help in any meaningful way. There is a desperate need for health and social care professionals to understand this condition more.
After a period of intense frustration on my parents part, they have come to treasure each moment and take comfort from the support from family and friends. We try to make it as good as we can and we have now purchased a converted vehicle to take dad out as he has little mobility and needs a wheel chair . He seems to have entered a different plane and is more accepting of his condition and takes pleasure from the simple things in life.
I wish you well and hope you find some more support. If anything, it has taught us all to value life more and treasure each moment as much as we can.
I understand exactly what you are saying. MSA has robbed me and my partner of so much - we had only been living to getter less than a year when he was diagnosed. Everything we had planned is not going to happen. I still sometimes get upset seeing other people our age seemingly enjoying their lives but we still do - just a bit differently. We went to see a band on Sat night - the first time we had been out on a Sat night for about a year. M loved it. Being fully immersed in a room with music deafening our ears - he was totally in the zone and not thinking about MSA. We take pleasure in daft stupid things - the cat, something on the telly. It’s tough but there is so much to enjoy still. You will feel angry. A lot. But try to let it pass as it doesn’t help getting chewed up about stuff you can’t change. Talk to people - it helps to off load that anger and despair- it’s normal to feel this way - you’d be a monster if it didn’t !
Take care and make a list of everything you can do to help your dad enjoy life as music as he can - it’s the little things - holding his hand , trying a bit of massage.
Hi I know exactly what you mean. My husband is mostly bedridden now , hoisted on a better day into a recliner. It's true people do not know about MSA , it's such a cruel disease and so difficult to come to terms with. The nurses at MSA trust are a good support and understand how heart breaking it is. I agree watching life carrying on for your friends is hard, all your plans gone out of the window. But what I find the hardest is the unknown. What will happen next? How long will my husband have to bear the loss of dignity, he so hates. I don't want to lose him but I also can't bear seeing him suffer this.
Yes we try to make the best of what we have but its not an easy ride. Just keep going day by day, I hope you get good support and am thinking of you
It’s difficult to add to the excellent advice already been given above. I know how alone you feel but there are 480 people on this forum who care about MSA and are there to support each other.
It’s not clear if you have been in touch with the MSA Trust as yet. Their nurses are a fantastic source of help and their web site, albeit it needs and is getting a makeover; is a great source of information. Some of the downloadable information sheets are acknowledged as being the best in class.
Finally, one plea from the heart; don’t let this beast win by tearing you apart. Do what you can, hope for more, demand what you need BUT don’t worry about what you can’t do or change.
Good morning, it is desperately unfair: the very opposite of winning the lottery. I nursed my husband, who was just due to retire, through his 2 years with diagnosed MSA. Even though there was no cure to be had, I never felt unsupported. We had excellent care from the NHS Community team and from our local hospice. I agree with what others have said about acceptance making it easier. Fighting the inevitable is bound to breed bitterness. Finding pleasure in small things becomes important.
Since his death, I have become carer for my 95yo mother with advanced dementia - there is really NOTHING “out there” for dementia patients, either, although some promising research. We do the best we can.
I remember seeing someone post, possibly on another MSA group:
“I can’t do anything about the disease, but I can do something about my response to it”.
i agree it’s such a rare disease no one knows what it is , people just think it’s because my dad is old , he is 83 but a few years ago he was walking into town enjoying his life , but now just sits in his chair , really hard to understand what he says , can’t use his hands to write, it’s so unfair
i know they are researching cures , but as you say it’s all cancer research etc xx
Hi Battack75 i know just how you feel and i to bottle things up my husband was diagnosed in 2016 he cant move much any more and his speech is going i feel as if i live onn my own and when i at the supermarket i look at all the happy couples and so wish it could be us it feels like my life has come to an emd as well i hopw you feel better soon take care
Hi it’s so tough isn’t it? Even when people ask you how he is it’s hard to know what to say
My dad is so stoic about it all but acknowledges that it has robbed him of his life and he now depends on other people to do everything for him.
We managed to get him out into the garden and had tea and cake with him on Sunday butbin the back of my mind I wonder if that will be the last time he will get into his garden xx
I have just read your post after my usual morning of getting my husband showered, dressed, shaved, breakfasted, picked him up when he fell over, struggling down the stairs and into the chair etc. and ended up feeling frustrated and angry because it seems to take all morning just to get started. Then I feel guilty because he can't help it and I know anger does no good at all. So what I really mean to say is reading your post reminds me that I'm not alone, there are other people out there who are struggling along and feeling the same feelings as I am and fear the future and I am not alone. We have sunshine here so lets enjoy that. Take care. Jan
Thank you all for your replies, your words have really lifted me today! I’m normally quite positive but just recently it’s all got a bit much. I try and do what I can to support them but find it so frustrating not being able to resolve it all for them. Sometimes I just need to rant and get it all out ....... ❤️❤️ x
It is helpful to hear that we are not alone and our thoughts and feelings are experienced by others. Sometimes I think it would be good to have some sort of video conference call or way of all being able to chat together about how we all feel to share experiences - not sure how this is possible. I know this forum isn’t really to do this but some sort of support mechanism rather than just messaging would be so good - for those that are having a really bad day/ good day even . There must some sort of tech ?
Apologies for all the typos in my response - I was on a bumpy train journey!
It is so hard my dad understands that he’s condition is getting worse we take it day by day and still try to laugh and make the most of what we have got as a new thing slips away we find other ways around it speech is really hard for us at the moment making our own picture book helps I put pics on there that my dad would use (Evan a swear word lol) some days it brakes me and I come home and cry but I’ll always smile when I see him try and keep ya chin up
My Dad has it too. I am also struggling at seeing him decline into a person that's not really him anymore . I'm being strong around him and doing so many things. When I find time for myself, which is rare, I have a cry and then get on with things. Nothing will change it for us, but they will know we are doing all we can xxx
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