Hi Tooley

Thankyou for answering.

Congratulations on getting back to living independently. When you say 'unassisted' you mean are able to use your arms/hands enough to dress and feed yourself?

I think this will be hardest part for me as I have always been very independant, but some people I know consider themselves as living independently, even though other people do these things for them but they organise their own care and make their own decisions about what they want to do that day etc.

I'm not sure at this stage whether I can accept that definition of 'independent' as the word to me means been able to do everything for yourself without assistance.

I think when you know its coming you are always trying to stay one step ahead and prepare for the next stage before it catches you out so you are winning rather than the condition.

I have thought of learning how to use a headmouse or mouthstick so I can type as fast with that by time I get to stage my hands wont work at all, but some family members think I should keep using my hands for as long as possible for everything and if I switch to headmouse or mouthstick too early I will lose use of hands quicker.

At one time, I was going to get a man to come and demo Eye gaze on a Dynavox (my speech is also affected) cos I felt I needed to know if it would be a future option for me and I felt really low. but then the iPad details were released and I'm a Mac fan, always wanted an ipod touch but screen too small so this gave me new optimism that I'd be able to use this not just as iPod but also as communication aid via Proloquo2go and as jumbo touchscreen TV remote (solve the issue of struggling with small buttons on tv remotes)

I seem to get lot of ups and downs sometimes to point I think if i got something like cancer I wouldn't tell anyone until it was too late then I wouldn't have to end up been totally dependant on someone, but then other times I think if I can just find an alternative way to do everything and find out how other quads manage I might be able to cope that way too.

Kati