Personal Space

The muscle weakness caused by your SMA may mean that you use a wheelchair all or most of the time and that your home and, if you have one, your garden, have had to be adapted so that you can get around comfortably and safely; but now you’re older it’s not all working quite as well as it did. Maybe you need a better set-up in your bedroom to do homework or would like more privacy? Or maybe yes, you would like this, you can still walk a bit and the number one problem for you is that it’s getting harder to manage with the way your bathroom is set-up, the stairs to your bedroom are getting just too hard for you and you’re quite a bit too big and heavy for your parent(s) to carry any more. There are as many possible scenarios in between as there are young people with SMA who live in all sorts of different flats and houses around the country and who find they just don’t quite work for them and their family

Maybe your parents are already thinking about how your needs have changed, are looking for solutions and are already starting to talk to you and any siblings you have about what you think. We have a website section for parents of children which discusses ‘Thinking about accessibility – adapt or move?’ which may be helpful to them. You might find it useful to have a browse through the section ‘How well does your current home work?’.

The information in these sections could help get you thinking about anything that you find is a bit of a pain now, what might become a problem, and what might work better for you. You can then let your parent(s) (and anyone else who then works with your family) to make any changes you need know.  First off, it’s most likely to be an Occupational Therapist (OT), but other people get involved as well and it can all take a long time and need a lot of careful discussion. 

These are in the Children age 0 – 12 years section of our website so apologies that it’s directed at parents / guardians, but the system and questions you’ll probably want to think about are the same for your age group and both you and your parents will be part of any decision making about what changes your family make, when and how.

Find them here