Anyone up for setting their New Year’s resolutions? Not me. Normally, I’d use these days in January to conjure up resolutions, create new daily routines, and set personal goals for the year ahead. But after the past two years of roller-coaster events that blew holes in my resolutions, I feel…
It feels like a win when we can figure out how to include my husband, Todd, in game nights. He is paralyzed because of amyotrophic lateral sclerosis (ALS), so any game that requires writing or moving is a challenge. That would include most games, but we can make some…
Lately, living with ALS amid the continuing world health crisis has me dialing my resilience-meter up to “high.” Why? Both have limited treatments and no cure in sight, and convert our old “normal” lives into an ever-changing world of new normal. And both require resilience. Resilience is our ability to…
“Catch a Cannonball, now, to take me down the line My bag is sinkin’ low and I do believe it’s time To get back to Miss Fanny, you know she’s the only one Who sent me here with her regards for everyone Take a load off Fanny Take a load…
We decorated for Christmas this past weekend. The kids and I went out into the woods, and my 12-year-old son, Isaac, cut down a balsam fir. My 15-year-old daughter, Sara, carried it back to our house, and we put it in the tree stand in the living room. When we…
Calling it the “biggest challenge” of his life, a U.K. rugby fan and motor neurone disease (MND) advocate, Martyn Clarke, is undertaking a Herculean effort — seven Half Ironman triathlons in seven days — to raise funds for the MND Association. Clarke, 47, was inspired to push himself to…
“And I hope when I get old I don’t sit around thinking about it But I probably will Yeah, just sitting back trying to recapture A little of the glory Well time slips away and leaves you with nothing, mister, but Boring stories of Glory days …” Bruce Springsteen’s…
An oral suspension formulation of edaravone (MT-1186) is safe and well-tolerated in adults with amyotrophic lateral sclerosis (ALS), according to interim, six-month data from a Phase 3 clinical trial. In addition, exploratory efficacy results suggest that edaravone’s experimental oral formulation may slow patients’ functional decline to a similar level…
Before his recent death, motor neuron disease (MND) patient Anthony Walsh had the opportunity to try a prototype Toyota Human Support Robot (HSR), providing a glimpse into the kind of technology that could be used to help people with amyotrophic lateral sclerosis and other MNDs with everyday tasks. Walsh, who was…
My husband Todd’s lung strength is weak from ALS. He’s gotten sick a few times in the last several years, and each time we wondered if he would pull through. It was scary, and it has caused us to calculate the risk of going out in public or receiving…
