Sometimes living with my ALS isn’t a matter of finding the right balance of effort and ease. At times, I have zero mental motivation to make the effort in the first place! And from the comments I read on many social media sites, other ALS patients have…
Green Lake, in northern Michigan, is verdant and peaceful. Evergreen and aspen trees grow right to the water’s edge, and the shores are dotted with summer cottages and a smattering of small docks and boat houses. If I could conceive of the perfect lake, this would be it. My…
My 13-year-old son and I started mountain biking a few summers ago during the pandemic. He quickly became a much more aggressive biker than me, tackling jumps and getting air while I try to keep my tires on the ground. He easily outpaces me, often waiting at trail…
As I consider the progress we’ve made on ALS, I can’t help wondering if our overall awareness will continue to grow and lead us to even more sensitivity and advocacy. What real action will take place? Will initiatives be developed and sustained? Will we patients be closer to…
Ever since my husband Todd’s ALS led to his paralysis, it has been hard for him to get comfortable. This is especially true now that he wears a mask nearly 24/7 for noninvasive ventilation support. For years, I’ve jumped into action when he calls me to swat a…
The other day, right in the middle of doing my daily chair exercises, I had to stop and turn down the volume of my mind’s inner critic. Because I was feeling a little sluggish and off balance, the voice in my head was absolutely convinced that my ALS symptoms…
The first text message my late husband, Jeff, ever sent me was just one word. We’d had our first date the previous evening, and our dinner at a sidewalk restaurant on a mild autumn evening in Alexandria, Virginia, was full of laughter. I was happy to see his text the…
About 19 years ago, my newlywed husband, Todd, bought me golf clubs. He loved the sport and thought it’d be a fun way to spend time together. I was open to the idea, even though I used to be one of those kids who dreaded gym class. I’ve never been…
Last month, a series of health issues bombarded me. They flew in on top of my usual ALS symptoms, causing me to become frustrated and ask, “Has this become my new normal?” But the advice I once received from a TV game show host rescued me — advice that…
Yes, I know, this headline is an obvious conclusion. Yet, based on my dialogue with other ALS patients, as well as my own experience, it’s not always so obvious. In late 2009, I noticed a drop in my left foot. As it progressed, I asked our family doctor what…
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