Falling was one of my daughter’s earliest LEMS symptoms
Watching your teenage daughter stumble and fall repeatedly is terrifying
Last week, much of the northeastern United States was hunkered down for yet another nor’easter. As snow fell on our northern neighbors, here in the South, we were enjoying spring-like weather. Many of the local schools are out for spring break. My back porch is full of flowers blooming red and pink.
The warmer weather brought with it memories of the not-so-distant past, reminding me of how far our family has come on our journey with Lambert-Eaton myasthenic syndrome (LEMS).
One of the first signs of trouble for our daughter Grace was random falling. It was March 2019, and we were living in New England. It was a blustery day, and as Grace, her sister, and I crossed the street bundled in boots and winter coats, Grace fell hard. At first, I thought her boots didn’t fit right. Maybe she just tripped or hit a random piece of ice. I didn’t give it much thought beyond tending to her wounded hands and ego.
However, as the days turned into weeks, we began seeing more signs of muscle weakness. Random trips and falls continued. Oftentimes, Grace’s legs would just give out while she was standing still. We noticed a limp when she walked. She had trouble going up and down the stairs to her bedroom. Falling had become an almost daily occurrence.
Although all of Grace’s symptoms were difficult to watch, seeing her fall was the most jarring for me as her mom.
I began to hover over her anytime she was required to walk more than a very short distance. Every curb and crack in the sidewalk was a potential hazard. I was vigilant about keeping debris off the floor. Each morning I would make sure everything was picked up in her bedroom so there was nothing she could trip on.
My goal was to literally catch her before she fell. Of course, this was impossible. After all, she was a 15-year-old girl who did not want her mother shadowing her every move.
Once Grace was diagnosed, the falls didn’t stop completely, but the frequency definitely diminished. With the right treatments, Grace has continued to gain strength and balance. Falls have happened less and less.
It has been a year since Grace’s last fall. It was that tumble, and my response to it, that convinced me I needed to make a change. I realized I could no longer hover over her and prevent every fall from happening. My smothering attitude and overreaction compounded her fears.
I have worked hard to no longer hover. This week, Grace and I went on a walk with our dog. She took control of the dog, and I stopped myself from reminding Grace to let go of the dog if she pulled too hard. I must give her the opportunity to succeed independently. If she does fall, we want to teach her to brush it off, get up, and try again.
No one needs someone constantly looking for their next fall. What they do need is people who believe in them and cheer them on when they succeed.
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.