Ryan Berhar

Other than Trump’s wall, this is probably America’s most divisive issue. Lol. Seriously though, I’m a big iPhone fan, and I have very weak hands. Features like assistive touch and predictive keyboard are enormously big helps to me. I currently have an iPhone 8, and it’s definitely workable from a weight standpoint, albeit less than ideal. The iPho…[Read more]

That’s definitely exciting. To echo the others, you should be able to receive SSI if you’re at least 18. DeAnn gave a good explanation, so I won’t repeat that, but I’ll add one thing. In the state of Oregon, you can’t save more than $2,000 in your bank account if you’re on SSI, even if it’s partially, or, for that matter, all money you’ve earned…[Read more]

It’s definitely hard to find that balance. I’m still trying to figure it out for myself. I’ve mentioned this before, but living with SMA is sort of like having a full-time job. Thinking about it from that perspective helps me when I feel like I’m not doing enough. It helps combat the frustration of not “keeping up” with my able-bodied friends. If…[Read more]

Why do you think it’s premature? Zolgensma not only replaces the missing gene (Spinraza doesn’t), it’s also a one-time delivery. It’s objectively superior at least as I understand it.

Well obviously if you don’t need it, don’t get it. But Krystal said her daughter is really thin, so that’s why I suggested it. Being thin isn’t bad for us, but it could also be a sign that she’s not getting enough nutrition, and this will only become more problematic as time goes on. I just can’t stress how important this is, as I almost lost…[Read more]

Hey Krystal, I can only speak for myself, but I’ll tell you what my experience was like. Aides were hired by the school district to assist me from preschool through third grade. It was a great system. I fit right in with everyone else. I enjoyed school K-3. Fourth grade was when things changed for the worse. Due to complications from my spinal f…[Read more]

That’s the thing. Even the experts often don’t know a thing about SMA, so it’s usually best to just figure it out for yourself.

If you haven’t already, look into a feeding tube. There’s absolutely no way I’d still be alive without it. I can’t physically eat or drink enough, so it provides me with the bulk of my nutrition and hydration. Many people seem resistant to get one, but I can assure you they’re not remotely a big deal. It’s a minor procedure, and after a short tim…[Read more]

That’s more so the case for me now, but I was way more paranoid about that stuff when I was younger. Sleepovers were never really something I desired to do anyway, as it is just sleeping after all.

Very cool. Glad you got to have that experience.

Also wanted to say that it might be different if you’re on Spinraza. Again, I’m not an expert, just sharing what I’ve learned by living with SMA all my life. Consider consulting a medical professional before doing anything drastic. Even then, listen to your body above all else, as doctors are wrong sometimes too. Diet is not something to take lightly.

First off, I want to be clear that I am by no means a dietitian. That being said, I know that the diet experts say that people with SMA shouldn’t have much protein, (none at all actually) as it’s hard for our bodies to break it down. Many SMAers stick to the AA diet, which is extremely strict and basically only permits grain. I was on it for fou…[Read more]

Very interesting. For me, it’s really only an issue on trips. I sometimes have to hold it in these cases. I’ve considered looking into an external catheter, but the thing is I need to get out of my chair a few times a day anyway to prevent pain. On trips I just do the best I can, usually laying down in the backseat of the van. I know that’s not r…[Read more]

Hey Rachel, welcome! I’m Ryan, one of the forum moderators. Let me know if you have any questions. Good luck with your fourth loading dose!

Glad to hear it was a great experience for you. I went to the 2016 conference, and I had similar takeaways. It was so cool to not stick out like a sore thumb for once. I was also encouraged by those who have “made it”. Seeing people who were married with kids made it seem possible for me as well

I’m motivated very heavily by my faith. There are other things too though. I’m motivated to move into my own home, and have my own family. I’m also motivated to become a pro chess player.

Hey Crystal, glad to hear you’re doing well. Let us know how it goes.

My experience was very similar. The difference was that I knew ahead of time that my spine was inaccessible. I was prepared to do the hole drilling surgery Halsey described, but that’s where things went awry for me. I was unable to go through with it due to an insufficient nutrition plan.