Last week I felt sad. I had to unravel a knitting project that had consumed a good part of my summer. “What’s the big deal?” you might ask. Well, the big deal is that living with ALS has me feeling hypersensitive to time. How I spend my time…
There was a time when I could twist off the lid of a new jar of peanut butter with ease; I always enjoyed hearing that distinctive pop when the lids finally gave way. Pickles, spaghetti sauce, whatever: Those jars were no match for my grip strength and determination. Now, although…
Last week was good; nothing bad happened to me. Not that I was expecting bad things to happen, but as someone who lives with ALS, I feel pretty darn successful whenever I can look back and note that things went well. I know, I know: Writing about a calm,…
Living with ALS can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you. Before ALS, my life was filled with moving.
A number of years ago, during my first year of learning to live with ALS, I promised myself that I’d show up every single day. At that time, my notion of showing up meant my goal was simply to get up, get dressed, and go sit in the…
Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.
Decisions, decisions. When did making health decisions become so challenging for me? Well, it began after I was diagnosed with ALS. Scheduling annual health screens and medical treatments became complex decisions. Even purchasing a new pair of sneakers came with specific considerations. ALS has created a whole…
For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the ALS community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS…
I’ll admit I often worry if I’m being productive with my time and spending it wisely. That’s always been important to me, but it intensified the day I was told I had ALS. That’s when I heard the words “average life expectancy of two to five years” and left…
Six years ago, I was a new patient columnist for ALS News Today and wrote a column about how planning ahead helps me dine out with ease. But since that time, my ALS has evolved — and so have my plans. Instead of a rollator, I now…
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