Hi all, as some if you know, I am in South Africa at present. We come here twice a year. It's been six months since our last visit, so I was very apprensive about the difference I would see in S. Since our last visit, he has been doing the multi directional exercises - "big" movements. I know some of you do them! Thus he has been doing twice a week with a physio and occassionally I have done them with him.
The difference is quite remarkable. I didn't notice at home, but here! We have steps in this house (none at home). I have had to help him up and down them for a couple of years now, but now, he is coping fine on his own. We have a pool here, he is now able to swim again, six months ago, he was sinking all the time and had no confidence, can get in out if the pool, still struggling with the cold water, but we have got solar heating in now, so that has helped with that problem! Even managed to walk to a restaurant the other evening. Something I wouldn't dream of happening a few months ago!
Of course, this is all having a knock on effect, he is happier, more confident, so is doing more, therefore can etc. etc. etc.!!!!
Anybody that is still capable of doing any physio, if you are not doing these exercises, please, please find out from your doctor how to find somebody to help you! We have got into this through our physiotheraphist (on the NHS!). One day a week, S goes to the local gym on a GP's referral and we have a private visit at home doing the same exercises! It worth every penny and then some!
I know we can't beat PSP, but this is certainly keeping the worst of the smptoms at bay. To me, every day out of a wheelchair is one less he will have to suffer in one!!!
If you have just been diagnosed and thinking life is over. ITS NOT!!! There is something you CAN do. This is NOT the magic wand, but it's something that will help. PSP is evil and getting its own way in every aspect of our lives. These exercises are just a small tool to help keep it at bay. But in our world any small improvement in movement, any small improvement in apathy, any small improvement in enjoyment of life is BIG!!!!!!
Lots of love