Alyssa Silva

I’m right there with you Halsey. Lately social media has done more harm than good so it’s important to take a step back when we feel that way. There IS still joy and compassion in this world. I need to remember that.

I think getting outside is going to play a huge factor in making the most of what we’ve been given. I also think it’s important to remind ourselves that all of this is out of our control. We’re all in similar boats in that none of us know what’s going to happen next. And that’s OK. If anything, SMA has prepared us to be really adaptable human bei…[Read more]

So funny you say that because I decided to bring my work outside that day, and it perked me right up. You’re absolutely right!

I really love taking my work outside. The change in scenery helps my mindset. Could you do something like that? As far as hobbies go, maybe bird watching if you live in a rural area? Gardening? I’ve seen gardening tables that come high enough for people in wheelchairs. Fairy gardens are super cute to make, too, and you could put them outside.

Like you, I’m going to wait it out and see how others do before making the switch myself. I, too, have been fortunate to not have any detrimental effects from Spinraza/lumbar punctures. I honestly think I’m more excited for SRK-015 than Risdiplam. Personally, I think it holds more promise for my individual needs but I could be wrong! I guess we’…[Read more]

Chantell and Dennis, this is what I’m thinking too. I’ll have to fashion something and try it out. I will keep you all posted. Thanks for the advice. It is much appreciated.

Hey! Yes, I alternate between coffee and matcha. Typically when I’m having a bad day with my stomach I’ll drink it because it’s easier to handle GI wise. I don’t love the flavor though and don’t have a G-tube. So, I came up with a little concoction that, in my opinion, is DELICIOUS.

I make iced matcha, add about half a cup of sprite, and then…[Read more]

I tried one of those paper-like masks haha I don’t know what they’re called! But they’re the generic ones nurses and doctors wear in the operating room. I also tried a homemade cloth mask that didn’t work either.

Yes, I pretty much have the same sentiments as Halsey and Crystal. To add, I’d feel hurt if my friends planned something special (birthdays, special occasions, etc) that aren’t accessible but that has never been the case for me. They are super accommodating and always get my input as well. While I don’t expect this from them, it’s nice to know th…[Read more]

Ugh, it really stinks that we’re high risk and can’t protect ourselves. I know this isn’t a solution, but if and when I venture out again I’m thinking of wearing glasses. It isn’t much, but at least the mucus membranes in my eyes will be somewhat protected. If anything, it’ll give me an ounce of peace of mind knowing I’m doing SOMETHING to…[Read more]

Thanks for sharing your experience, Kevin. I feel fatigued as well when I’m approaching my next dose— typically around the 12-week mark. I was a month late for my most recent dose due to the pandemic, and it was honestly scary how weak my body was. I know Spinraza helps, but sometimes I forget how much of a difference it actually makes because I’m…[Read more]