My husbands PSP also came to light after suffering a stroke. He only got worse, instead of better. Yes, we went on holiday, got all the equipment in place, did the exercises, took each symptom on the chin. Made loads of memories, enjoyed life as much as we could. PSP did win, in the end, but I would like to think, it suffered a few black eyes and bruises, along the way. Neither of us let it have its own way. We fought and fought hard. It doesn't stop the evil day, but I am sure it prolonged it. Gives me comfort now, that in this house, it faced a severe challange.
Thankyou, Needed that. We are from Townsville, Australia and wish we knew where everyone else comes from. There is no one else here with PSP ( that we can find) so we've joined a Parkinsons group. I hope that you are going along okay after the dreadful difficult times you have had (and we know are to come).
I'm in the UK. There are others in Australia. Steve joined a Parkingson group for exercise. Certainly helped him. At least they understand some of the problems.
Yes there are a couple groups in the Southern parts of Oz ( Melbourne for sure and probably in Sydney and Brisbane) we are well in the North but once we get more settled we shall tackle a trip or two south. Thanks ... Val
We are in Sydney Australia and have also joined a Parkinson group as there is nothing for PSP. The consultant who gave us the diagnosis in January this year has said there is no need to visit again as no treatment and to expect a steep decline in the next year. As they can only treat symptoms this is now in the hands of our GP. Bill is doing exercises every day to keep strength but it is getting hard for him.We have prepared our house and try to make every day count while we can still get around.
It is comforting to know that there are others in Australia with this terrible condition. Sorry to hear that your consultant is not seeing you again. In the Qld system we are with the public hospital and our consultant sees us every 3 months. We have certainly found that the exercises seem to make a big difference. Diagnosis was March. Charlie comes from Kyle Bay, Sydney. We thought that there would be PSP groups in such a big city.
Thanks, We find ourselves wondering how the time span will go. We understand it is different for everyone. It is hard to know what to plan for isn't it. Ch is nervous about bookng too far ahead but once we get settled into the house in town we may do a few spontaneous trips.
The time span is indeed unpredictable so its not easy to plan far ahead.
For us, we had a holiday even though he used a wheelchair and was incontinent by him going into a nursing home and me taking him out every day. Disadvantage was that I didn't have a complete break. However, in our case, a month later he was hospitalised with an infection - home a week later completely bed bound and he died after 10 weeks. So we don't know how it will be.
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