I am sitting next to my father researching this terrible disease as he shakes uncontrollably and drifts in and out of conscious… He was diagnosed over the weekend however he has been ill for years they just couldnt explain why. Cosidering the rapid decline and severity of his symptoms now i feel now he is in the later stages of MSA.
Although he has been very unstable on his feet recently and suffered some falls due to blood pressure, the past week has reduced him to a wheelchair and completely unable to stand. It has shocked us how quickly this has occured. Not only that but he is now often showing signs of dementia (especially when he wakes). This wasnt mentioned by the Dr and also has taken us by suprise.
I know we are lucky to have had a wonderful kind man for so long and there is nothing that can be done, but as we try and take this in any advice or support would help especially my mother. We now have him home in Adelaide with constant family support trying to make him comfortable and less anxious as possible. However we have been told it will take upto 3 weeks for an under resourced disability SA to come out and look to help set up the house let alone get the things we need fitted etc.
From reading peoples stories on here i am saddened deeply yet inspired to try and give my father similar support and love that you guys have shown to your loved ones. I am aware there is little if anything any of you can do but thank you for letting me get this out of my system and be inspired by your courage, that alone is enough…
Heath – I have passed your email on to a couple of ladies in the US who administer several MSA support sites and groups including the Facebook MSA page which you can find at http://www.facebook.com/groups/MSAOZNZ/ .