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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]

I’m interested too in seeing what kind of effect the higher dosing will have on people in this study. Likewise, I felt a big boost of energy during my Spinraza loading doses. With the maintenance doses, I do feel a slight decrease in stamina when another dose approaches.

Risdiplam is definitely promising. I just got back from a Cure SMA…[Read more]

It will be interesting to see if the higher dose will be safe and effective. I have to say I felt more effect from Spinraza during the loading doses and through the first maintenance dose. It stands to reason this would be the case because there would’ve been more of the drug in my system at one time. I’m guessing higher dose would be more…[Read more]

Curious Ryan, when you say you assume that you’d be a better person without SMA how so? Sure you’d physically be able to do more, I’m just not seeing how that equates to being a better person.

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]

DeAnn, I totally agree. When I thought about the “would you change anything” question, I said I somewhat agree. It’s like, I wouldn’t change anything about my life up until this point, because my disability has informed so much of my perspective on life, and it’s brought me into contact with so many great people. Heck, it’s why I have my job! I…[Read more]

This article makes me think how far we’ve come over the recent decades. My younger brother passed away December 18th, 34 years ago when he was 4. Funny how those dates stick. Back then the respiratory support was very minimal. He too passed from respiratory failure. Looking back things could have been done differently, but we didn’t know.…[Read more]

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

Finally got a chance to watch the video. Very interesting, but not that surprising to me. Even though there is a lot to agree with, everyone has their own perspectives and experiences. What I noticed is that the strongest response to the question about changing their disability was from those who suddenly became disabled or had chronic pain.…[Read more]

Maybe it’s just me, but I feel like when you have SMA it kind of prepares you for other challenges. Although one diagnosis is plenty, it maybe allows a person to take another diagnosis in stride or at least lessens the impact. I’m sure each diagnosis has its own implications, but like Kala implies having SMA has taught me how to adapt and…[Read more]