my best friend of 53 years sadly died yesterday after coming to the end of MSA age 55 years old.
She never let this cruel disease get her down, never complained and remained independent until the end.
She was Titanium and I aim to make MSA known to as many as I physically can. During this whole journey with many hospital appointments and numerous health care professionals who gave her such amazing care I came across an incredible realisation of how few hard heard of this condition.
What a lovely picture of positivity in adversity. You must be so sad and yet uplifted by the brave face your wonderful friend put on.
MSA is rare and subsequently not heard of by so many health professionals. All we can all do is spread the word to as many as we can.
Take care, Ian
thank you for posting this. It’s so inspirational and how terrifically strong to remain independent to the end. It’s my ambition and it’s good to hear of someone achieving it. it’s a painful time for you now though and do stay on the forum if you feel able to. We are all thinking of you and sending support x
First of all so sad to hear of your loss. It breaks my heart because this illness is so sad and shuts the body down bit by bit and seeing your loved ones go through this is just heartbreaking and when they go into hospital the nurses don’t know about MSA or what they dealing with and it’s us the carers that have to let them know. I think things have to change so that when a patient goes into hospital they know more about it so that our loved ones get the right care available. I know they have a lot to deal with in hospital with all the other patients and their illnesses but most of the hospital staff don’t know anything about MSA and this needs to be addressed.
Only wish I could do more.
Your friend reminds me of my wife who passed away in March 2023 aged 63.My wife Susan never complained only on the on the odd occasion about her neck pain. Let’s hope that one day soon they find a cure for this terrible condition.
So sorry to hear of your loss. What a brave lady. The act of "getting things out there" is difficult as we are finding out.
My husband has PAF, which at the last count, only 180 people in the country have which makes it extremely rare. In fact one of the consultants said to him that it would be better if he had parkinsons as they throw money and research into that condition. My husband has given permission to donate his brain and spinal chord to medical research to try and help find some answers.
Take care,
Xxx
so sorry to read this, lots of love xx
Yes you are right! The drs and nurses do not know how to manage it, xx
So sorry for your loss, like your friend my Maggie fought bravely without complaining, she passed away in January. I miss her so much but am happy she no longer has to live with this awful disease. Look after yourself now x
so very sorry for your loss. What an amazing woman! Thank you for sharing x
my thoughts are with her friends and family at this most difficult of times. X
I'm deeply sorry for your loss. Your friend's resilience and courage are truly inspiring.
so sorry to hear of your loss . my wife was diagnosed with M S A in 2022 after initial parkinsons diagnosis . sadly she lost her battle with it on 6 june 2024 . plagued with pressure sores seemed to be on a steady course then suddenly turned within a week lost her ability to swallow then just had to stay by her side and watch her fade away. so heartbroken . such an awful desease and there was nothing i could do to protect or save her
Mum now at peace...
Sad news 
