My daughter finally returned to one of her favorite activities

When my girls were 10 and 12, the Navy moved our family from the warm climate of Florida to the shores of New England. We embraced Connecticut wholeheartedly and couldn’t wait to see snow. I would fling open the curtains to watch the soft snow gently blanket our backyard. The girls would run outside to catch snowflakes on their tongues. They spent countless hours sledding, made numerous snow angels, and had many snowball fights.

I would take them ice skating almost every Friday. A local college opened its rink to the homeschooling community and our little group of friends would meet up, let the kids skate for a couple hours, and then grab hot cocoa on the way home. It was a great way to start the weekend.

Then, our older daughter, Grace, began exhibiting signs of what we now know to be Lambert-Eaton myasthenic syndrome (LEMS). One of the first things she had to give up was ice skating. Grace could barely walk, and her legs would often give out on her without warning. Even though it was one of her favorite activities, there was no way she could ice skate.

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Five years post-diagnosis, Grace, now 20, is doing extremely well. Her neurologist gave her a glowing report at her last appointment. He was encouraged to see her reflexes return and deemed her arm and leg strength “near normal.”

So it shouldn’t have surprised me when Grace came home from college recently and said she wanted to attend an ice skating event that her school here in Florida was hosting. My anxiety soared as the day drew closer, but Grace was determined to go.

My husband and I were nervous, unsure if she could actually ice skate again without hurting herself. However, I knew this was a decision Grace needed to make on her own. Ice skating is one of many favorite activities she misses desperately, and I didn’t want to deter her from trying again.

So we told her that, as an adult, she should be able to make this decision herself. She knows what her body is capable of, and if she wants to try something, who are we to stop her?

I drove her to the event, which was on the other side of town, and told her to let me know when she wanted to be picked up. About 30 minutes before the event was set to end, she texted and said she was ready to leave.

She was visibly buoyant when I picked her up. Grace did, in fact, ice skate, but was wise enough to use the aid that acts somewhat like a walker on ice. Thankfully, many of these Florida kids had not grown up ice skating, so many of them used the aid as well.

According to Grace, it was difficult, but she did it. When I asked why she left early, she said her energy was waning and she didn’t want to overdo it. She showed great maturity in making this decision for herself.

This was a great achievement for Grace as she navigates young adulthood with LEMS. I was so proud of her. She made the best decision for herself and, in the process, recaptured a love that LEMS had interrupted.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.