Why pool exercise is beneficial for my daughter with LEMS

Swimming offers this teen a safe way to get some much-needed fitness work

Lori Dunham avatar

by Lori Dunham |

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One of my first goals as a parent of toddlers was to teach them to swim, especially as our family lived in mostly warm-weather climates while moving every few years with the U.S. Navy.

Much of our family time was spent at the neighborhood pool. Children’s birthday parties all took place poolside. Many of our friends had pools in their backyards, and we visited the local beaches often. That made it imperative for our children to swim well.

We spent countless hours and resources on swim lessons. Over the years, our kids have loved the water, and some of our greatest memories happened at the pool.

But when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, she wasn’t physically able to continue doing many of the activities she loved. She could no longer play basketball or volleyball, and she didn’t have enough balance to ride a bike. Even playing the piano became too difficult for her.

Swimming was definitely not on the list of things she felt comfortable doing.

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Those first months after diagnosis, we tried taking her to the neighborhood pool, but getting her there in the Florida heat was difficult because of her LEMS-induced heat sensitivity. Even though the pool was directly across the street from our home, the heat would immediately zap her energy and leave her depleted.

In addition, crowded pools made her nervous because she worried kids would knock her over. She lost all confidence in her ability to swim or keep herself afloat.

Although she’s lost the carefree attitude she once had around swimming, we’ve been able to incorporate the pool back into her life. She still doesn’t feel strong enough to swim in the deep end, but with the right therapy and medications, she’s gained enough strength to enjoy the pool again.

She now sees swimming as a way to get some much-needed exercise and considers the pool a benefit in living with LEMS. The following reasons help explain why.

Strength training

Pool time is a great way to train for strength. Water supports the body while offering resistance.

Lower fall risk

Frequent falls were among the most jarring aspects of LEMS that Grace experienced. Swimming offers her the opportunity to exercise while significantly decreasing her risk of falling.

Less stress on joints and bones

The buoyancy you get in the pool decreases weight-bearing and lessens the impact on joints. These benefits allows Grace to perform exercises that are difficult for her on the ground.

No sweat

Because LEMS can cause patients to sweat less than normal, it’s important to find ways to exercise without overheating. The water helps keep Grace’s body cool, even when she’s working hard.

It’s fun

Swimming has brought fun back into Grace’s teenage years. She’s missed out on so much the past few years because of LEMS that it’s important for us to intentionally search for achievable and lighthearted fun that doesn’t overtax her body.

We’ve yet to find an official aqua therapy facility in our area, but I know Grace would be interested in taking her pool time to the next level to continue strengthening her body.

Have you found pool exercise beneficial to your overall health? Please share in the comments.


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.

Jerry Hirsch avatar

Jerry Hirsch

Wow, you described your "journey" with LEMS exactly how I am going through it... My greatest fear is falling due to the balance issues that LEMS patients have. When I walk, I have to be very aware of my surroundings so that I don't trip (AGAIN!) and possibly break a bone. I found that walking in a pool lowers my risk of falling 100 %. The hard part is getting from the parking lot (I live in a gated community that has a large heated pool for the community's use) to the pool. I also live in FL, so except for thunder & lightening in the area, I'm able to go to the pool all year round! The other "saving grace" is a medication that I was a volunteer for during its' pre FDA approval, which was approved after the clinical trial. This medication I'm referring to is FIRDAPSE. Since taking it, it has made a big difference in allowing me to function, with minimal side effects (which are worth dealing with) compared to the benefits I receive!

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