On some days, I find carrying out everyday tasks harder than on others. I don’t always want to rely on my son or someone else to help me do these things. I started thinking about the tasks that are most problematic and what I can do to make them easier.
While scrolling through my Twitter feed recently, I came across a tweet from Charis Hill, an advocate for disability rights. The tweet was a list of things that every disabled person has supposedly heard at least a few…
Do you struggle with a lack of motivation this time of year? I do, and it seems to be affecting my Charcot-Marie-Tooth (CMT) symptoms. I find that my CMT symptoms are worse in colder weather than in warmer weather. In the winter, for example, I tend to feel more fatigued…
A few years ago at a previous job, a co-worker confessed to me that she used to think I was a bit gross because she thought I had frequent nosebleeds and didn’t immediately throw my used tissues away. She had seen tissues stained a blood-red color strewn on…
When I was in college, YOLO — the acronym for “you only live once” — became popular. I think it was supposed to be inspirational, encouraging us to take advantage of our time and do something worthwhile. However noble the intention was, that’s not what it became. I…
“Movement is medicine.” I have heard this saying a few times, and I wondered what it was about. Years ago, doctors typically told Charcot-Marie-Tooth (CMT) patients that exercise is not the best option. The Hereditary Neuropathy Foundation is working to change that. The foundation suggests that people with CMT…
“Why does your dad walk like that?” a friend once asked me. At the time, I hadn’t even noticed. He had always walked that way. I knew we had Charcot-Marie-Tooth disease (CMT), but it never occurred to me that he walked funny — or that I did, too. Daddy has…
There was a time during my childhood when in my mind, I was “Braces Boy” — part boy, part brace. I was in middle school and already wearing ankle-foot orthoses (AFOs) to help with my ankles, which were and continue to…
Do you ever have to rush to the bathroom? Are there times when you feel you cannot control the urge? Or perhaps you urinate frequently — more than eight times in a 24-hour period — or awaken more than two times a night to urinate? This is not uncommon as…
I felt like a child again — and not in a good way. It was a shock and I felt pathetic. But while holding the cheap pair of disposable chopsticks in my trembling hand, unable to pick up my food, I came to a few realizations about my…
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