The story of Jackie
My mum, Pat was diagnosed with MSA in 2007 and passed away five years later in 2012.
She was 76, far too young to be cared for in a nursing home, her MSA robbing her of attending her daughter’s wedding, time with her grandchildren and great grandchildren, time with her loving hisband. Yes, she was lucky that she had those things compared to younger victims of this disease but still…..
The last year of her life my mum became an old woman with autonomic failure leading to immobility, bladder and incontinence issues, orthostatic blood pressure which led to fainting, confusion, (even the inability to count change which as a cashier for a local council upset her greatly), hallucinations at night and many more awful symptoms. My father tried desperately to care for her but eventually it took a toll on his health too and Mum ended up in a care home.
The frustrating part of her disease was the lack of knowledge and understanding of the condition within the medical and support services. Every time my dad sought help he had to fight tooth & nail, an exhausting process, which only added to the stress of the situation. After Mum’s death Dad took it upon himself to try and make a difference for other MSA sufferers and, despite his own poor health, he started a support group in Wiltshire and raised funds for the MSA Trust in various ways.
It has taken me a while to stop thinking of my mum and MSA in the same thought. Now I can remember her for who she was before MSA crept in & stole her… a loving wife and mum, a proud grandma and for a short time great grandma….a cheeky smile, the look of delight when one of her four daughters visited, her chocolate cakes and her devotion to dad. That was my mum.
No one should have to face life with MSA.