Icaryn

Daily routine is fairly easy actually, as I spend 95% of it on my PC. Generally it starts by me waking up and having my live-in caregiver get me dressed/groomed. He takes me to the bathroom and gives me my morning meds. Afterwards he gets me in my wheelchair and on my computer and gives me a few sips of water to clear my throat. After that I only really need help whenever I need a drink, bathroom, or we leave. The bed routine is fairly similar to getting up, albeit backwards.

The hardest part actually tends to vary on my mood and environmental factors. Sometimes it's frustration over not being able to swallow fluids well. Otyher times it's me having to watch people as I can't always join in. Some days it's sexual frustration as I can't self-pleasure.

As for women, recently it's been rare as I don't go out much. Usually it's if I have a female caregiver, otherwise hardly ever.

Thanks for asking!

I'll help answer a few of the questions too as I also have Type 2 SMA;

1. My Father is actually part of the Michigan board of Families of SMA, but I've never heard of The Jennifer Trust. As for FoSMA, they haven't really had any personal impact on my life, but I know they have with others.

2. I personally prefer to wait until there is something that will help.

3. I'd personally love to participate in a clinical trial, even if it didn't benefit me. I've already deteriorated a fair amount and know it's irreversible, but if there were meds to stall it, even by a little I'd love to help.

I'd like to thank you for all your help and research too!

Thankfully my depression never reached the point of wanting to self har,m or suicidal thoughts. It basically stemmed from a lot of physical self hate and fear of the future. I hated how my worthless and weak my body was, and I was scared at how fast my condition would progress. Growing up, I was never the type of person that went "I may be bedridden by 30, lets work and get a career in case it doesn't happen!" I always was afraid of if it did happen. To the point I never wanted to do anything but play, to enjoy what life I had. I kept my depression to myself till I was 19, afraid people wouldn't understand. Once it got to the point that I began flat out ignoring homework I knew I needed to get help. So I did. I do my best to live life, it just gets hard when you don't know how fast it'll progress.

I hope to become a good enough 3D Animator to work on a big movie or game.

Nope, since the tube is in my stomach, no taste.