gratitude

Since February is known as the month of love, I’d like to shower some love on all the ALS caregivers around the world. Add a special shoutout to family caregivers — the spouses, partners, family members, friends, and even neighbors who care for someone with ALS. It’s a challenging responsibility…

ALS is a life-changing diagnosis, and like many newly diagnosed patients, I was disappointed and frustrated at what felt like a standstill in medical progress against the disease. “If they can send humans into space, why can’t they cure ALS?” I’d lament, Now, 11 years later and with still…

When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…

“Don’t the best of them bleed it out While the rest of them peter out? Truth or consequence, say it aloud Use that evidence, race it around There goes my hero Watch him as he goes There goes my hero He’s ordinary.” The lyrics of the Foo Fighters’ song…

“I am a rock, I am an island, And a rock feels no pain.” In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I…

“Your lifelong membership is free, Keep a-giving each brother all you can. Oh, aren’t you proud to be in that fraternity, The great big brotherhood of man?” Those lines, written by Frank Loesser for the musical…

Although it’s hard to find much to celebrate in 2020, this year happens to mark an important milestone for my husband and me. I’m celebrating achieving 10 years of living with ALS, and for my husband, 2020 marks a decade of his role as a caregiver — to me. I…

“I get by with a little help from my friends.” Or, in my case, A LOT. Two weeks ago, I discussed the ALS village. Last week, I wrote that I’ve survived 12 years since ALS darkened my doorstep. The latter is not possible without the former.

It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the…

Living with ALS presents many challenges, and staying mentally motivated is right at the top of the list. Being proactive to prevent our emotions from spiraling downward is easier than picking ourselves up after we’ve hit rock bottom. So, I want to share the five things I…