When I was diagnosed with ALS, one of the many things that changed was my relationship with clothes. I used to buy and wear clothes that caught my fancy. Now, living with ALS means I’m choosing comfort and the ease of getting myself dressed over the latest trend. Has this…
Columns
My husband Todd’s lung strength is weak from ALS. He’s gotten sick a few times in the last several years, and each time we wondered if he would pull through. It was scary, and it has caused us to calculate the risk of going out in public or receiving…
“In-A-Gadda-Da-Vida” Last week, my pastor humorously suggested I should challenge folks to put forth songs or lyrics they believed I wouldn’t be able to kick-start a column with. He further suggested the above mentioned track by Iron Butterfly would be such a stumper. I respectfully submit that he…
My ALS symptoms showed up in my feet and legs in 2010. Normally strong and coordinated from years of gymnastics and fitness classes, my lower limbs became weak and unreliable. That’s when my neurologist recommended I begin using a walker. To be precise, she meant I use a…
About four years ago, I began to be overwhelmed with sadness about my husband’s continuing decline from amyotrophic lateral sclerosis (ALS). Todd and I have often said that if the disease progression would just stop, we could adjust. But managing ALS only becomes more stressful as time goes on,…
“I been one poor correspondent, and I been too, too hard to find But it doesn’t mean you ain’t been on my mind.” In retrospect, I fear that much of my life has resembled that stanza from the band America’s second Billboard No. 1…
I spent most of my life following daily habits and routines that shaped my perspective about how life ought to be. When ALS appeared, it brought change and created imaginary roadblocks in my mind. I didn’t want things to change, to learn new habits, or to adapt to my…
“You hold the key to love and fear All in your trembling hand Just one key unlocks them both It’s there at your command Come on people now Smile on your brother Everybody get together…
Recently, a journalist and author from New York contacted me about a book he’s working on. His theme is the role that humor plays in helping people cope with a wide variety of diseases, disabilities, and physical conditions. He wanted to include my ALS-related experiences, and I gladly agreed to…
I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard to the front porch, where he will still be able to get into it after the snow accumulates. I called…
Recent Posts
- My principles for finding and giving support in the ALS community
- MDA Wings Over Wall Street gala returns to fund critical ALS research
- My husband doesn’t get out much, but he enjoys following Comet’s secret life
- Keeping weight steady after tube feeding may help ALS survival
- Trial, error, and toe covers: Learning to adapt in life with ALS