On September 18th we hosted our RISE AGAINST ALS Decades Dance Party for ALS ONE at the Middleboro Elks. It was a wonderful night full of music and dancing and so many laughs! Over 120 people came together for an amazing cause and we raised more than $11,000 to support ALS ONE's mission! The best… Continue reading Oh What a Night! RISE AGAINST ALS Decades Dance Party for ALS ONE
Back in the early-ish days of the pandemic, a pretty cool thing happened in the midst of the craziness. Because everything in the world was basically shut down, people got all inventive in terms of connecting with their fellow humans. Zoom calls became the norm. For me, Friday nights became Friends and Family Fridays. It… Continue reading General Hospital Stars Zoom for ALS
I haven't physically been to clinic at Mass General in a year, thanks to COVID. Last April and July I had virtual visits with Dr. Berry via Zoom. In September and December a nurse from the ALS House Call program came out to the house for an in-person visit. She came out for her third… Continue reading ALS House Call Visit
I awoke from a fitful sleep sometime after 6:00 tonight and went outside for the first time in days. The cold was surprising and there was an ache in my lungs as I inhaled the painfully fresh air. I squinted hard against the sun, which was still high in the sky, though descending quickly, preparing… Continue reading At Play in the Fields of the Bored
I don't dwell on abilities I once had that I no longer have thanks to ALS. But there are certainly times I mourn the loss of things I was once able to do with ease that I've now lost. One of the things I miss most in the world is practicing Martial Arts. I walked… Continue reading The One with All the Karate
Today’s clinic was a little different. Since we are in the middle of the COVID-19 pandemic, clinic was held via video conference. Obviously that meant no lung function test, no strength and range of motion tests, etc. Basically we just went over how everything is going and if I felt there had been any significant… Continue reading April Clinic
My ATP delivered my power wheelchair today. It came a lot sooner than I expected. I don’t have a ramp yet, or an accessible car. Those things will come soon enough. For now it will stay in the garage and I will take out as I need it around the neighborhood. I’ll have more to… Continue reading Rollin’ Rollin’ Rollin’
I turned 48 on Friday! Last night Aaron and I went to Twin River with Alana, Diane and Eric, Cheryl and Dave, James and Deb, and Sri, who was home for a short break from Ohio where he is in the second year of his medical residency. It was such a fun night! The band… Continue reading Birthday Shenanigans
We lost our friend and fellow ALS warrior Al this week. I am profoundly sad. I didn’t know Al well, but I was really looking forward to getting to know him and his wife better this summer.
Last night was ALS ONE’s annual Snow Ball Gala. It was held this year at Lombardo’s in Randolph. I was sad that my parents couldn’t join us this year. My father is in the middle of chemotherapy for pancreatic cancer and we couldn’t take the chance of having him around a lot of people with… Continue reading ALS One Snow Ball Gala
Rise Against ALS! 