Speed4Flora

Rob and I were making our exit from the ALS TDI White Coat Affair gala in November, when we were flagged down by three women sitting together at a round table. Two of them were ALS advocates, and they were leaning in towards a third, a really lovely woman named Flora Fasolya, who was there from New York. One of the women, Michele Dupree, explained to me that Flora had been diagnosed about a year earlier, and that she needed to talk to someone who understood some of the physical difficulties she had been having.

We talked for a little while, Flora asking questions about how Rob and I manage certain parts of our day in an attempt to learn how she and her boyfriend, Chris, can adjust to their new life with ALS. I know Flora spoke with many of the other people at the party that night, too. She was gathering information, something that everyone with ALS should do. Even if no one knows exactly what to expect from this disease, and when, we can absolutely learn from each other’s experiences.

Let me just say that I have no idea what I’m doing a lot of the time. But while it’s still possible, it’s amazing how your body can adapt and perform everyday functions in new and interesting ways. I wouldn’t exactly call them “tricks” and I certainly wouldn’t call them graceful, but the way I take off my bra or brush my teeth, or even pick up a mug or a pencil is not the way I once did. It’s not the normal way. And yet, bras come off, teeth get brushed, tea is drunk, shaky letters written. You do what you can, and it’s nice to hear from other people that they’ve found ways, as well.

After the TDI gala, when I wrote a blog about having difficulty typing, Ellen Corindia—who’s been living with ALS for 13 years—reached out and asked if she could send me some of the devices that kept her typing once her fingers began to weaken. What kindness. ALS can be very isolating, and I think that for a while I was sitting alone in the dark, until I reached over and found that other people were sitting there, too.

Flora and I have kept in touch, and I’m happy to call her a new friend. She’s also agreed to join the site as the latest Face of ALS. You can read some of her thoughts here, and please feel free to leave her your words of support.

Share this post on your social platform Tweet about this on TwitterShare on Facebook

2 thoughts on “Speed4Flora

  1. ann johnson

    How could I find out more about the devices to help with typing? My son-in-law was diagnosed a little over a year ago. Has lost most use of his fingers on one hand with weakness in both hands. Thank you for sharing this information.

Comments are closed.