What has changed most about your life since your loved one was diagnosed with MSA?
My mummy was diagnosed with MSA and it opened our world to a whole new way of living. It made us look into palliative care and making sure mummy had dignity and was comfortable as well as making sure we had time to make many memories.
Had you heard of MSA beforehand?
No
How do you feel about the changes MSA has made to your life?
MSA turned my life upside down, I learnt so much in a short amount of time. About the symptoms and living life to the full, as well as preparing for the inevitable and making sure mummy was comfortable and looked after. We also shared a lot of laughter!
Was there a particular point when you started to identify as a ‘Carer’.
No, I was always close to my mummy, and it sort of came naturally. When mummy needed help, I lived very close as well as working around the corner so I could help all the time. We had a conversation about dignity and if she was comfortable with me helping. And she agreed she would prefer me than a carer.
Has anything from the MSA Trust been helpful while caring for someone living with MSA.
Voice banking, my mummy sadly died in August 2024 unexpectedly (although we knew she was terminal, we didn’t know it was imminent) we now have mummy’s voice saved with her most used sayings, like ‘I love you more’ this is priceless. And we have the MSA trust to thank for that.
What does the MSA Trust mean to you?
My mummy died at 62 and was diagnosed at 58. MSA trust gave us time to ensure we made memories, understood the diagnosis and for my mummy, she was able to attend local groups via video chat to speak to other people in similar situations. We felt less alone.
What are the challenges you have faced?
A lot of medical professionals have not heard of MSA, in the early days we spent a lot of time arguing with the GP receptionist regarding care. Had the GP known more we could have had a straight link to the surgery to prevent discomfort and waiting times. Once mummy was under EOL care it was a lot easier to get a medical professional out to the home.
Is there anything you are grateful for?
The support from the MSA nurses, the awareness we now have as a family which we hope to keep spreading.
Any other thoughts you wish to share?
It is a truly horrific disease, I never got to say goodbye as it happened without warning. But thank you for the trust, for providing support and awareness as well as key funding for things such as voice banking and speech therapy. A lot of things mummy wouldn’t have in place if it were not down to her MSA nurse.
