Activity

Happy December! My latest column is about disease progression. I often feel like my SMA is getting worse, only to realize it’s just menstrual fatigue. Still freaks me out every time, though!

How do you cope with SMA progression?

Yay! Home at last.  Since November 17th I’ve been in quarantine due to coming down with virus symptoms and subsequently testing positive.  Fortunately my case was mild and no one else I’ve had contact with, including Mom, has come down with it.  Although the caregiver I believe exposed me did test positive.  Everyone should be in the clear now…[Read more]

Hey everyone! Hope you’re all having a great week.

Check out Michael’s latest video here. He talks about the steps he took for his Evrysdi approval and shares tips for others in the SMA community.

Are you pursuing Evrysdi? Do you have any questions about the process? 

I think assistive equipment is the term I want to use here, but I’m also having a brain fog day so please forgive me if it isn’t!

I’m curious to know what your favorite products are that help make your life easier around the house. Voice-activated lightbulbs, extensions for Alexa, you name it. In terms of accessibility and adaptiveness, what…[Read more]

Believe it or not, we’re almost at the end of 2020, finally. It’s been a wild and tumultuous year, but we’ve made it this far.

Since this is such an unusual year, and many of us won’t be able to see family and friends in person, we have to get creative for holiday plans. There will definitely be a lot of virtual hangouts with families, but I’m…[Read more]

I posted this yesterday on Facebook for my family and friends and I thought it was worth repeating here.

Let’s make 2021 a fantastic year with extra holidays and family get-togethers.  2020 needs to close without any more of us getting sick with the Covid!  We’ll just move this year’s holidays to next summer:  May is Memorial Day; June is Thank…[Read more]

As Thanksgiving approaches I am thankful for the treatments that are now available. After much consideration I’ve decided to pursue Evrysdi. Today in fact I had a telemedicine appointment with my neurologist and he prescribed the new medication. Now it’s a matter of submitting it to my insurance. Since overall it’s less expensive than Spinraza I’m…[Read more]