I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our son was 9 months old. I grieved the loss of our dreams of adventures that we would have — family vacations to national parks…
Columns
Columns
Like It or Not, My Steak Is Rare
“There’s an old joke, um … two elderly women are at a Catskill mountain resort, and one of ’em says, ‘Boy, the food at this place is really terrible.’ The other one says, ‘Yeah, I know — and such small portions.’ Well, that’s essentially how I feel about…
Columns
Lessons I Learned From My AFOs
I’m happy to announce I’ve finally resolved a love-hate relationship — with my AFOs. It took persistence, but I can now step into my white, molded plastic ankle-foot orthoses and walk pain-free. That’s important to me because I want to keep walking for as long as possible, and my…
It’s been an intense couple weeks of winter weather on Michigan’s Keweenaw Peninsula. After a mild January with many sunny days, the first two weeks of February made up for it with over 40 inches of snowfall, along with below-zero to single-digit temperatures. I had been getting out…
“Ride a painted pony, Let the spinnin’ wheel spin.” Recently, I had a flashback to those lyrics by David Clayton-Thomas and recorded by the band Blood, Sweat & Tears. They speak to me on many levels. The…
Ten years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was during my first year with ALS, a time when I felt the weight of worry and having a life…
Some people take a long time to get an ALS diagnosis, which is a drawn-out, stressful journey. Our story was stressful in a different way, in that my husband’s diagnosis came almost too quickly. In the fall of 2009, Todd first noticed that his left arm was becoming weak.
The 1987 song “Elvis Is Everywhere” by Mojo Nixon and Skid Roper asserts the omnipresence of Elvis Presley. Despite the first-glance outlandishness of the song’s premise — fittingly, the single is found on the album titled “Bo-Day-Shus!!!” — I am…
I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…
When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do much vehicle maintenance beyond having the oil changed. I put gas in the tank, and I figured as long as…
Recent Posts
- Trial, error, and toe covers: Learning to adapt in life with ALS
- 5-year survival seen for over 40% of ALS patients on masitinib in trial
- Long-term air pollution exposure shows no clear link to ALS in UK study
- Masitinib trial insurance offers a safety net for ALS research
- Spontaneous mutations may underlie some sporadic ALS cases