Life with SMA is simply very difficult, full stop. We are all trying our best. In regards to your post, I assume Drew is unable to get care givers due to his income? It’s a terrible system. I would suggest maybe having Drew or yourself look into a financial service that specifically deals with these types of issues (i.e. how does one continue…

Read more

I can’t imagine this topic is far from mind for many – if not all – of us in this forum. I live in a major city which I know helps simply in terms of potential available bodies and at this moment I’m currently juggling about ~15-20 people a week to cover all my shifts (ranging from people in my high rise, people that live close by and PT…

Read more

Kevin – it’s funny you mention this.  I got my last dose about a week and a half ago and I feel great. Prior to that however – especially the few weeks leading up to it – I was feeling quite fatigued by things that otherwise hadn’t previously made me tired. I knew I had the shot coming up so I wasn’t sure if it was a sort of placebo. And I… Read more

I am going! But I registered for the research portion, but there is definitely overlap.

I would not personally do it, but I am fortunate enough to incur the costs. However, this is largely in part because I find the conference of such value that I actively budget to accommodate for what is essentially a vacation. Any medical reason or necessity to attend this conference is mitigated by simply speaking with a neurologist. While… Read more

I’m late to the party on this posting!

The way I’ve come to manage this is a bit ridiculous, but works for me. Since I do love to eat, but I know that putting on weight is an issue, I basically allow myself one meal a day – usually around lunch. So if I want a double bacon cheeseburger with large fries, I can justify eating 1200 calories in… Read more

Hey Lydia – I just wanted to add that I started receiving Spinraza about 3 months ago and I had it done in Philly at Penn. The doctor who administered it was Bryan Pukenas and supposedly he’s one of the best in the world. He’s a really nice guy. I too have a complete fusion (ie luki rods from my neck to butt) and under the guidance of the… Read more

I only half wish (maybe more like 60-40) that Elon Musk would have a child with a disability just so we can get Tesla Wheelchairs up and running

I’ve given up having them take samples from my upper forearm area because of the aforementioned reasons. I now only have them take it from the top part of my fist/hand. They tie that rubber strap real tight around my wrist and smack my hand a few times and a vein almost always pops up. Maybe give that a try?

I took full advantage of every and all opportunity that became available through my schools disability resource office. Through there summer internships I was able to land a government job almost immediately post-graduation. Although I no longer work for the government (long story), the opportunity was invaluable as the government is one of… Read more

First time posting, long time reader. These forums are great! For sure keep em’ coming (I’ll try and be more active).

The improvement in the time it takes to fatigue is the largest improvement I’ve noticed since receiving injections. I’ve only had the loading doses, but my energy levels seem what they were when I was younger, which is a… Read more