MSA story to share

Hi all. My father was initially diagnosed with vertigo! He pushed for more tests as wanted answers to why he needed to walk with a stick. He was then diagnosed with Cerebellar Ataxia but a short time passed and he was diagnosed with MSA. The last 18mths have been the most difficult and his deterioration was very rapid & noticeable. After a long struggle we finally got him noticed by his GP & the NHS!

On New Year's day we went around to Mum and Dads for a light buffet, photos & make memories. Dad seemed happy to see us but struggled to communicate and was tired.

1 week later on 8th Jan he died peacefully at home. We are relieved for him as he no longer has to struggle but I miss him very much 😢

I too am on here to try and understand but also to try and spread the word about MSA and to support people going through similar. Love to all

3 Replies

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  • Hello Shoddie. I am so sorry that you had a struggle to get the notice of your GP and NHS. Jax, my wife, was initially diagnosed as suffering with a stroke but things failed to improve and the confirmation that it was probably MSA came about six months later. We have been very lucky in that the support here in Worcestershire and particularly our local hospice, which runs a Parkinson's clinic, has been exceptional. We could not have asked for more support from the NHS...so far.

    I am sure the MSA Trust would welcome any support that you may be able to give in spreading the word or fundraising to continue their work and research. Their local specialist nurse has been a constant source of support and reassurance to us since Jackie was diagnosed. Take care, Ian

  • Thank you Yanno. I did contact the MSA and they were extremely helpful. My sister sent the same letter daily to my dad's GP & Consultant until they took notice. We then managed to get what they call a gold standard service and also managed to get the NHS support for continuous care at home. We feel he was noticed too late and by the time physio sessions were sorted his muscles were to weak to react.

    We as a family will support & continue to spread the word for MSA. My only advice for anyone going through or supporting someone that is, is to push for any type of physio to keep it at bay for as long as you can.

    xxx

  • Yes, a thousand times yes! Never take no for an answer

    Freda

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