Dupuytren's later on discovering that they were related (which my husband probably told me).
I remember playing badminton with him and being aware that he shouldn't do it so much and training to get him to sit down. But as I said, I can't pin point the exact time it changed but at some point
since February 2011 and February 2012.
4) What sort of things do you have to do / put up with?
I no longer play badminton, as he can't and it's not fair to rub that in his face. Even going running I feel guilty because I know he can't do it. I feel that I have to be strong and support him because otherwise it'll just make it worse for him. I try and make him feel positive and look to the good things in life. We have got a tall stool for him to sit on when doing a few tasks, a stick for him and a portable seat. I have to be stern with him and stop him doing things he enjoys so that he'll sit down as I know that it's better in the long run for him.
Recently I tried to turn my efforts to things positively and help raise money for his treatment and for the British Dupuytren's society. By doing this I feel like I'm achieving something positive and focusing my efforts somewhere where they are needed. Whilst he can't join in too we have to remind him that it's because of him that we're all there and he's running with us in Spirit. Next run I'll have a picture of him so he is running too!!
At the moment life revolves around his foot, it starts and ends every day and for him controls a lot in the middle. Whilst I've got spare time I'm at home updating the facebook group, looking up runs, training and trying to think of ways to raise money. Even when thinking of the future and long term where we want to settle, I'm conscious that we need to be somewhere accessible for him, somewhere that's not too far to walk or at least has a bus.
I don't feel that I do enough because ultimately I can never take the pain away or make him better. The best I can do is support him, encourage him to write to others and find out information, be positive and do everything I can do to make it better. That's not enough and never will be but I hope that it at least helps.