Patient Advice

Andrew: It’s always difficult when you can’t stand and you can’t walk independently, or have access to toilets. Even with a disabled toilet, is it going to be right for this chair? Am I going to be able to get in and out of it? I overcame that by carrying around a portable commode, it’s attached to the back of my chair, it’s never come out of the bag, but it gives me confidence that, if I was in a dire situation, I wouldn’t be caught short hours from home.

Andrew: I was very frightened to start with about losing the ability to walk. It was the be-all and end-all for me. I am now in a wheelchair fulltime. You can get over the anxiety. If I’d known that if I’d used a wheelchair or scooter earlier and had that ability to go out without being scared, I would definitely have done that. I waited till the point when I really couldn’t get out of a chair, before I gave in and used a wheelchair. There is a certain element of fun in being able to zoom around town and go to places independently.

Andrew: It’s not easy but you can find ways to make it easier. Things that have made it less complicated for me is having a positive mental attitude, talking to others with the condition, finding out best practices, things that they did differently, thinking ‘ooh perhaps I’ll try that’. You can reach out to the online community, get as much support as you can do and go out there and live life.