My wonderful father lost his courageous battle with MSA on 10th January 2017. I'm a little late to this group, but may be able to help those still struggling with this awful unforgiving disease.
Things are very raw for us at the moment, and to see such a wonderful man deteriorate before our eyes is heartbreaking. He fought a dignified, brave battle right to the end, and always held hope for a cure!
We will forever feel blessed to have had the opportunity to share the happiest days of his life with him!
Written by
Helenjonker
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Big hugs Hun xxx my dad is in the latter stages of msa and watching it happen is the worst xxx I'm sure your dad is up there without the beast of msa waiting to catch up with you when the time is right xxxx
Having your experience will def help and your dad will be helping others too xxx
Thanks for the lovely message, I know exactly how your feeling and it''ll one of be the hardest things you'll ever experience. Try to stay strong and remember the happy times together, and let him know how you feel, I was lucky enough to be there right to the end and I made sure I let my father know exactly how I felt about him.
I'm obviously limited with how I can support you, but if you need someone neutral to talk to happy to talk.
Hello Helen, what a lovely photo, you & your dad both look so happy together. Welcome to this group, I am sure you will have much to offer. Since Jackie was diagnosed and since following this community and the sister PSP community, I have been saddened and heartened in equal measure by the wonderful people who have gone down this dreadful journey themselves or as carers.
Take heart, time will ease the pain people say. When you have regained your strength I am sure you will do all you can to increase awareness of this condition and to support others who share your dad's hope of a cure. Take care, Ian
Yes MSA is a very unforgiving disease. I lost my partner Billy at Christmas to it. He too was a wonderful, caring funny,loving man. And I was privileged and lucky to have him in my life. I cared for him to the end, and I'd like to think he died knowing he was a much loved man. Not just by me, but by everyone who knew him.
I feel as you do. Maybe I can be of support to others going through the horrendous process that is MSA. And I think seeing others telling their stories, and asking for advice, is helping me. It seems to reinforce the support we need in grief.
It's hard, and I'm with you all the way, from afar. Your dad looks a lovely, happy man. I wish you all the very best. A little laughter, at the ridiculous things that MSA causes, is sometimes a help. Only yesterday, Billy's niece, and her family,(she was like a daughter to him,) and I spent the afternoon talking and laughing at our lovely memories. May you gain strength from yours.
Really appreciate your lovely world. My father was happy, especially happy to be with his family and to work hard for his family. All he wanted was to work to provide for mum, my two sisters and I! He was a strong, respected, proud, brave businessman, and I feel honoured to have been his daughter
We all find a little comfort with sharing stories of our treasured memories of him, but dad was the centre of our family, our rock, our unsung hero, always in the background, but always there for us no matter what. A true gentleman, no one can ever replace xx
Hi & welcome. So sorry for your loss, my dad died on the 8th Jan this year 😔 I miss him so much. I joined this group late too but for the same reason you did.
I just want to be able to help in some way & if it's just by listening to & talking to people on here, it's something.
Big hugs, my thoughts are with you and your family xxx
I was so lucky to have had such a close relationship with my father, the pain of not being able to just go and spend time with him each day is at times unbearable, but I'm determined not to let MSA win and he brought me up to be proud of my roots and to remain dignified. I have a strong close family around and we support each other each day.
If sharing my feelings / experience of MSA helps one person In anyway it'll help bring comfort.
My heart aches I miss him so much, his strength and dignity remained at all times, he was dignified in life, and dignified at the end, one of life's true gents!
Oh Helen, I do feel for you and reading your posts reminds me very much what we are going through.
I am one of three daughters and visited as much as possible because I live locally.
We were brought up to be strong independent daughters who take things as they come. But last couple of months have been the worst of my life but on the other hand we as a family are relieved for him.
I miss washing & cutting his hair, I miss helping him shave and trimming his nails. Miss our banter which we managed up until a few weeks before he passed.
He was a hard working man who was never ill until he was slapped with this awful condition. He was a gent too and never complained once. I miss his chats and fab smile.
Not sure how it is where you live but MSA is an unknown in this area and we very much struggled to get dad noticed or understood. So this site is wonderful for people living in areas like mine & it's important to spread the word xxx
MSA was completely unknown in our area until my father was diagnosed. We live in cumbria. He too was a strong fit man with a lovely personality who wanted nothing more than to work hard for us girls and if em we were happy he was too! Always dependable with his feet firmly on the ground to support us always.
I miss his voice, my father lost his speech quite early, so I haven't heard him speak properly for around 4 years, but his personality shone through. And us closest to him knew what he wanted to say, and we were able to communicate. I miss helping put his support stockings on and massaging his feet (he said I was the best at doing it). My only regret is not giving him grandchildren earlier, I've got two girls 8 and 6 who adored him, but my youngest especially had only memories of him having MSA.
I fully understand were you are coming from. Once I was able to give it a try I watched some recordings of when we were younger. I was apprehensive at the thought of hearing his voice but had to do it. Once I did the flood gates opened, it upset me but I was happy at the same time.
He will have adored his grandchildren, same for my sister her two boys are 8 and 5. My dad loved them visiting, there honesty was fresh. Why do grandads legs not work anymore, why does Grandad shake, why is Grandad in that bed all the time etc. So everything answered as time went on, nothing hidden. Luckily my lad is 18 and has some great memories to refer back to before MSA struck
Oh how your posts remind me of our life too.Billy was a hard working man too. Never Ill until the day he collapsed at work, and then we put 2and 2 together with all the other small things. He never worked from that day.
We came together later in life. In our 40s. And the only grandchildren he had were mine. Nevertheless he loved them and they him. Oh how we laughed at Asha, and Keira walking down the hall saying "let's play nanny and Billy" as Keira hobbled, with Asha supporting her.
Only recently, Billy's niece, who was more of a daughter to him, gave birth to a little boy, after 3 girls. He has been named Billy. In honour of the wonderful man he will never know. And so that we will always have a Billy in our lives, says his mother.
MSA is tough and unforgiving. I'd love to hear his voice again. It's been so long since he was able to speak. And here to, i'm in Ireland, the only person who had heard of MSA was the neurologist who diagnosed him. But in the main, all the health professionals were wonderful. One or two dodgy experiences.
We had a career for 7 hours a week, for his last 3years, who would come in and shower and dress him. She was wonderful. I'd hear them laughing together in the bathroom. Her care was equal to the care I gave him. I can't thank her enough that.
To those of you still living with MSA, I send hugs and wish you strength. To those of you who have lost life partners or parents. I think of you all daily and send you support and again, strength, to carry on. Hugs to everyone on here.
To all three of you big hugs xxx I look at my dad and see the changes and wish I could do something to make it go away xxx we do have carers into help as I have a long term condition xxx I appreciate the good days to have a laugh or to go out on a very good day xxx I hope I don't offend but caring for someone 24/7 takes everything you have, I don't know what it's like to go out window shopping or for a day out , can I ask after your loved passed away how do you cope with all that time ? Don't answer if you don't want too xxx
Lovely photo of you & your dad. My younger brother was diagnosed a couple of years ago, shortly after he turned 50, and it is amazing how much his Faith has helped him and his dear wife cope with this dreadful MSA. My brother's faith is stronger than mine, and he inspires me with his bravery. Your dad sounds like he was an inspiration to many people too. Even though I'm a bit scared about what lies ahead, I'm still praying for a cure & better treatments.
God bless you always with loving, happy memories of your dear Dad.
Hugs to you all. Reading your posts tonight, when I was really feeling down, has helped so much. You inspire me also to see what I can do to help my brother's family more. They & he are so dear to me, and I never say good-bye without letting them know how much I love them. We never know what is next. Now we all realize, even more, how much love & family matter. God bless you all, & surround you with love, and memories of the good times together.
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