I’ve been living with ALS for the past 15 years, and although it’s filled my days with life lessons and moments of gratitude, there have also been many twists of irony. One of the biggest ironies? I sometimes feel out of place in a community that’s so warm and…
Before ALS entered my life, I barely noticed how easily I completed simple, everyday tasks. But living with ALS can be tiring, and it makes everything — including the little things, our run-of-the-mill habits — feel difficult and tedious. I reached the point where I contemplated giving them up…
Who would’ve guessed that wearing a pair of ankle-foot orthoses (AFOs) while on a simple haircut trip would turn into a near disaster? But with two mini-miracles and one big lesson about living with ALS, the day was saved. Although I can tell this story in many ways, I…
Over the past six years, I’ve welcomed over 2,000 people to the ALS News Today Forums. It’s one of my many duties as a forums co-moderator. The other things I do include being alert for spammers, adding interesting topics to spark group discussions, and answering members’ questions. Although a high…
Last week, I fully intended to write a new “Living Well With ALS” column. I sat down, flipped open my laptop, gazed out the window, and got lost in a stare. As the minutes ticked by, my computer screen finally clicked off, my mind blanked out, and I had…
Do you have an ALS “inspiration folder?” I do. And I just added another name to my ever-growing list. Even though most people in my folder don’t have ALS, what inspires me is that despite their dire circumstances, they dare to have goals and find ways to…
A few days ago, a friend asked if I’d made any New Year’s resolutions. “No,” I replied, shrugging. Then I changed my mind and answered “yes.” Seeing her bewildered expression upon my contradictory response, I knew I had to explain. I used to enjoy the tradition of making resolutions every…
I named my column “Living Well with ALS” for many reasons. The most important one was that each word in the title had a deep meaning for me. Six years ago, when Bionews, the parent company of this website, invited me to write a patient column for…
Something was missing from the packet of patient information my doctor gave me on the day she told me I had ALS. But I didn’t discover that missing item until 12 months later. Why? During those months, even though I was adapting as best I could — such as…
Like many ALS patients, I had a difficult time accepting assistive devices into my life. In my case, a pair of ankle-foot orthoses (AFOs), a rollator, and a mobility scooter challenged my adaptability and sense of myself. But over time, with lots of persistence and support from my caregiver…
