Friedreich’s Ataxia Research. Please Help!

I am a master of design student at Raffles College of Design and Commerce in Australia. Our group currently researching for a practical project designing for the society. We are focusing to design to improve physical limitations for people with Friedreich’s Ataxia.

Could you please help me to share your experiences in daily life activities, any physical or mental challegenges you are facing everyday and any treatment or support tools or device you are using.

Hearing about your experiences, journey and any suggestions would be greatly appreciated and welcomed.

Thank you very much!

My life story is boring so I'll spare you. I'm 24 and have a manual wheelchair and a powered wheelchair. I use the powered wheelchair when I go out alone. Honestly I intentionally don't use anything that's adapted unless I have to because I will pretty quickly come to rely on it. To stand I need something sturdy to hold on to, and even when I walked around unaided I preferred having furniture/a wall around so I could touch it to regain my balance when necessary, so open spaces (like an empty room) unnerve me a bit. But open spaces are easier for a wheelchair so... I have to plan rooms out myself. And I do things like attaching desks or lightish cupboards to walls - so they don't move when I lean on them.

I recently bought a grabber/reacher for places where I can't stand. Turns out you need a lot of hand eye coordination to use them. Oh, and people always think that making an object lightweight will mean it's easier for me to use. Most of the time it's not - it's more difficult.

Anything more specific you need to know about?

Everything Willow says - no area rugs or sharp edges.