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Lupa, that’s another extremely frustrating aspect of the whole thing. I can’t decide whether to cry or scream when I clearly know how to do something, and would be happy to tell someone how, but I can’t do it myself b/c of strength and mobility issues!

Hi DeAnn.  When I encounter a situation as this, I LOVE saying “Hold one moment please, I’ll call the other party right now while I have you on the phone…”.  I put my cell phone on speaker and place it by my computer to make a Skype call.  I grab some popcorn and wait for the final shot (sorry, couldn’t reset the metaphor)!

Good to know. Thank you!

Hi,Alyssa
I take 2 200mg i-Theanine at bedtime it works great. And I feel fine in the morning.

Honestly, it barely affects me! It does the job, because my hallucinations are more or less a thing of the past, but I don’t really feel that it makes me drowsy or anything like that.

As far as I know, no, they’re not related! Hypnagogic hallucinations affect a lot of people, similar to sleep apnea.

Exciting news, Brianna! Thanks for sharing.

In response to your question, I have been on Evrysdi since January.  Had some minor GI issues that I navigated mostly with shifting my diet a bit but overall it wasn’t too bad. I always take it after having eaten and haven’t had any nausea.  I haven’t noticed any huge shifts in function, but I keep r…[Read more]

I run into the issue with family where I get told: “Call me if you need anything!” I ask them for help with something. “I’m working, can I come some other day?” I say okay and never hear from them again. The thing I wanted help with breaks and I need it fixed immediately so I ask again. “Why didn’t you ask for help earlier?” Sighhhhhhhhhhh.

I…[Read more]

So so happy for you!

I struggle with this too. It’s such a delicate balance and one that is hard to achieve. Can you talk to your sister about it? I’ve been waiting on my brother for weeks to build me a shelf, and I get it. Between work and a family with two toddlers, he’s extremely busy. But he and I have a good relationship, so I simply confronted him (nicely of co…[Read more]

You’ve fought a hard battle, and you deserve a few screams for a positive outcome. Congrats!!! Insurance company 0, warriors with SMA 3,000,000,561, and counting.

I totally get what you’re saying DeAnn about not knowing where to draw that line between getting what I need and asking for too much. Family doesn’t like taking money unless it’s a huge job, so how do I show my appreciation for those smaller jobs that seem to pile up? I’ve found that when I want to give thanks for several things somebody has done,…[Read more]

Kelly, I could tell there was an element of fear for this gentleman as well. His spinal cord injury was from a water accident, so I’m sure that added to his apprehension. It can be scary, especially when you’re relying on others. I had an incident with a wave pool that still haunts me.

Glad to hear it. Never underestimate the power of someone with SMA. It sure seems like insurance companies do. Thanks for sharing your journey. Keep us posted!