Ryan Berhar

I would probably just tell her that you really appreciate her service and want to keep her, but that going forward you require a bit more consistency. I don’t see anything wrong with that.

Dennis mentioned down vests which are great because they don’t restrict movement as much. I also have a Patagonia coat which I believe is down. I always struggled with coats , because they restricted me too much, but this one works.

It really all depends on what you plan to do with it. I like Macs in general, but they’re not good for gaming. As far as touchscreen, if you’re not gonna use it, I don’t see much point. But if it’s the same price, it doesn’t hurt to have an additional feature.

I believe this was the case with my left arm/hand. Since I was a little kid, I used it to drive, so it sort of sat there not doing much. Now it’s basically useless. On the other hand (pun intended), my right arm still moves decently, I guess because I’ve used it more.

This is certainly very true. Even though I’m not on spinraza, there’s just more of a general sense of hope now about SMA than there was before.

I totally understand where you’re coming from. Even though they likely have positive intentions, it’s still frustrating.

That’s honestly a really difficult question. I suppose we need to define what a “better person” means. Would i be as mentally strong without SMA? Perhaps not, because it has forced me to deal with many challenges. But even so, living with this disease does bring me down mentally. So I don’t know. Maybe a better way of putting it is that I’d liv…[Read more]

Did your brother have SMA?

A couple things stood out. One was that everyone agreed that they felt like a burden. I’m sure everyone with a disability has felt that way at some point. Still, I was a little surprised it was unanimous. The other was the question on whether you’d change your disability. I get that it is a huge part of who I am, but I’d like to assume that I’d b…[Read more]

Yeah I agree. Our lives with SMA are already challenging, so we’re probably more equipped to handle additional diagnoses.

I ordered some equipment last night. Hoping it works

I struggle to eat physically, and I also have a small appetite, so it’s not really an issue for me. I don’t eat much by mouth. Most of my nutrition is from a feeding tube. I guess I don’t eat the healthiest food in the world, but I don’t eat enough for it to make much difference. I don’t like that eating is a struggle, but I guess in a way it’s…[Read more]

I’m getting mine soon. Probably in the next week or two.

I completely agree! My faith is what sustains me. Life is extremely difficult, but I believe God left me here to finish running this race. When I sort of just want it to end, that is what lifts me up.

That looks interesting. Thanks

Oh absolutely. I hate being anywhere except my chair