Life with MSA – Christina’s Story
My darling husband Tony.
My husband was first diagnosed with Parkinsons, however he did not find any improvement on the medications, we then saw a Specialist who told us It’s not straight forward Parkinsons, It’s a Parkinsonism, and transferred us to a Professor in London. After 3 days of tests the Professor called us back and he was sad to say it was MSA, which we had never heard of, he explained and told us there was no cure, it was terminal.
We were devastated and afraid. He continued to say that some medication may help and we readily agreed to try anything, but the prognosis was possibly 4/5 years.
We decided we must keep going, and with family and friends support we did as much as possible for the first 5 years, until Tony was admitted to The London Neurological Hospital Queens Square. They were wonderful, honest and supportive, but it was hard. He had more tests, scans etc as organs were beginning to fail.
As time went on, Tony became increasingly unwell, with many autonomic problems, he would pass out without warning, and eventually was bedridden, Tony had two more stays in Neurological Hospital London until finally they said they couldn’t do anything for him, and he should go into 24 hour Care.
Tony was afraid and did not want to go into Care, however we both agreed home was best and we both wanted that and I looked after him. He was rushed to Addenbrookes hospital by ambulance but they could do little; I made a file of all Tony’s treatments, what MSA was and took it to every admission; Drs and nurses said how helpful it was to them. A lot of work but worthwhile if it helped; and so I talked with our GP who was a great support to us both and he applied for Tony to have help from the Hospice.
We now needed Carers daily as he became unable to do anything for himself, it was difficult watching my lovely husband suffer. I contacted the MSA Trust and they gave support and understood coping was difficult. So few people seem to know what MSA is!
Our Sue Ryder local Hospice were a blessing; he went In 3 times for pain management and symptom control, it was a world away from Hospital.
I will always be grateful to the Hospice for giving us Support, Care and a 24hr help line I could ring and they would sort a Dr or whatever was needed to come to us.
It truly was a Lifeline. The Palliative team were exceptional with their help, My darling husband was able to have our wish that he would pass away at home with me; I held him in my arms with the Palliative team with us, we all cried together. They had loved Tony, he just accepted his diagnosis with such bravery and never complained.
I was and still am devastated at losing him. I was lucky to have married such a caring loving man. He is missed by all the family and multiple friends. I am very proud of how he dealt with nearly 9 years of this awful disease.
My other wish is that more is known about Multiple System Atrophy, time and again people asked what’s that? Hospital staff didn’t know sometimes.
I hope reading this it may help someone to know you can keep going at first and to make the most of that time. Also reach out for help, support and information. Remember Hospice care is not just where people pass away, It’s also a wonderful place where pain management and a dedicated staff make it so much easier to cope. I know with two friends fundraise for our local hospice and have raised £32,000 in Tony’s memory to date, a way of paying back.
Thinking of anyone facing MSA with love, Christina
Disclaimer: The views and opinions expressed in the member stories published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.
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What beautiful words, obviously through the mouth of a devoted wife. I send you strength x