Jill was diagnosed with CMT 1A at the age of 2. She is a fourth-grade teacher and mom to a teenage son, who also has CMT. Jill loves photography, travel, and spending time with family and friends. She researches and writes tips that make life with disability a little easier.Recently, I joined a photography group for moms, and with them, I’ve been learning new techniques to feed my passion. However, there are times that I find these techniques difficult due to Charcot-Marie-Tooth (CMT). My hands sometimes shake which makes the photo blurry, or I hit the shutter too soon…
A few months ago, I was at a photography club meeting and the leader reminded us to be gentle with ourselves. The comment really hit home. I know the benefits of self-care and what I should do to take care of myself. But do I always follow through? No,…
In Virginia, we are entering our second month of social distancing. We have a long way to go, but we are learning to adjust. My state has been given the directive to “stay at home” until June 10. That sounds like such a long time to be home. My…
Are you feeling anxious about COVID-19 and its effects around the world? You are not alone. In these times of uncertainty, it’s natural to feel anxious. I, too, am a bit overwhelmed by the situation. We are in a unique time, and no one knows the best way to deal…
“Would you have had children if you knew they would have Charcot-Marie-Tooth?” I have heard this question before from friends and acquaintances when I told them about Charcot-Marie-Tooth disease (CMT). When I am asked, my answer is always the same and without hesitation: yes. I would have had my son…
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.
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…
“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…
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…
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