The first time one of my personal care assistants (PCAs) brought her daughter, I was kind of in awe. She was only a few months old at the time. She slept most of the day and could be trusted to lie on my bed, staring up…
Can I get a show of hands of all the folks who agree that living with SMA can be incredibly unpredictable? OK, maybe that wasn’t the best way to take a poll. However, I imagine you’re nodding your head in agreement. You probably raised your eyebrows when you thought…
My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza (nusinersen), I have found it impossible to make an ultimate decision.
Ella and I sat at Dunkin’ Donuts, conversing about MDA Camp. (MDA is the Muscular Dystrophy Association.) She thoroughly enjoyed camp for all the wonderful activities she did, and especially for the people she became friends with. The camp wasn’t all peaches and…
We often talk about the qualities of an ideal caregiver and what one should look for, but we rarely talk about what we as patients can do for our caregivers. The patient-caregiver relationship works both ways, and it’s important to keep in mind that our…
My oldest cousin is getting married this weekend, and my youngest cousin is engaged. Two of my best friends are in long-term, committed relationships and talking about marriage. I turned 23 recently. All in all, I don’t feel any older, but I do feel more prone…
There’s a paperweight that sits on my desk that reads, “People are going to stare. Make it worth their while.” Apparently, a man named Harry Winston stated this. I did a quick internet search of the fella, and it appears he was a well-known American jeweler in…
Throughout my life, I have been blessed with some of the best friends a human could ever ask for. A few columns ago, I talked about spending a good portion of the past year with my friend, Sam. I want to dedicate this column to…
Always have a backup. For the first time in her life, Ella is attending Muscular Dystrophy Association (MDA) Summer Camp. We had prepared for this adventure for weeks, reassuring her that she’ll be all right without her parents (for the first time in…
There’s that old saying about how when one door closes, another opens. The original quote by Alexander Graham Bell is, “When one door closes another door opens, but we so often look so long and so regretfully upon the closed door, that we do not see the ones…
