Hi John,
Reading your blog has bought tears to my eyes, the care and compassion you have showed throughout is amazing…
My mum (now 62) was diagnosed approximately 18mths ago with MSA, after 2 years of specialists etc for some “unknown” symptoms.
This past year has shown rapid deterioration so we believe this disease has gone un-diagnosed for possibly many years. In the past 8 months she has gone from still being fairly independent, her only aid has been a cpap machine for breathing assistance at night, driving, shopping etc.. normal things we all take for granted…. to now this past two months being in a wheelchair, unable to stand un-aided at all, speech is very mumbling, not being able to dress, eat, bathe without some assistance which is heartbreaking. Their home has been turned into a wheelchair friendly care facility where she now has an almost full time carer, physiotherapist, speech therapist, emergency button necklace, and then buttons in almost every room to call ambulances in case she is alone and falls…. which have seen some use already…
The saddest thing about this disease I have found is the loneliness my mum has from losing her independence, I am in Australia, whilst the rest of my family is nearby to her in NZ they have work, families etc, so as much as they spend their spare time with mum, she has many lonely hours. She has a great support network but I can now really hear it in her voice that she is over it, I try and call daily but we don’t have a lot to talk about as her life is now on the couch watching TV so she runs out of things to say. I am fortunate I get to travel home at least 5 or 6 times per year, but the changes in between visits are now very obvious.
Anyway I just wanted to say thank you for sharing your story and I hope with all the research that is being done overseas they find something to help this disease, its certainly not been a pretty ride so far, and I think we still have some way to go…
Thank you
Tina
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