My search to find the ‘normal’ of life with Lambert-Eaton syndrome

One of the common symptoms of Lambert-Eaton myasthenic syndrome (LEMS) is muscle weakness, which, for many, causes problems with balance and gait. When our daughter Grace was diagnosed at age 15, we could first see her symptoms in the way she walked.

First, we noticed a slight limp. Then, as the disease progressed untreated, Grace began to walk with a pronounced swing in her hips, and the number of falls and balance difficulties increased. Ultimately, she needed a wheelchair before the doctors could figure out what was causing her weak muscles.

After her diagnosis, I made valuable connections with others in the LEMS community. I heard encouraging stories of people with LEMS walking miles a day, others hiking and playing sports, and still others working full-time jobs. I was desperate to know what Grace’s life would look like in the future, and these were welcome stories.

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But for every encouraging story, I knew others that didn’t play out with the same positive results. I learned that many people with LEMS are severely hindered in their physical abilities; some need mobility aids, such as walkers and wheelchairs, while others have had to change careers or quit jobs altogether.

I couldn’t figure out which group Grace would fall into, and I wanted a clear picture of her future life. In a world where nothing was normal, I was desperate to know what the LEMS “normal” looked like.

I’d pepper people within the LEMS community with questions. How are you able to walk 2 miles a day? As a Realtor, are you able to walk clients through houses, up and down stairs? How are you able to run track or play football? I just couldn’t fathom any of those scenarios because they weren’t things Grace could do.

It took more than three years after Grace’s diagnosis for me to finally meet someone else living with LEMS in person, to draw firsthand impressions. Yes, Grace’s difficulty walking does seem on the more severe end of the scale. Maybe she has it harder than others. But meeting others with LEMS taught me a much more important lesson.

Meeting these people helped me understand that no two are the same. Some, like Grace, may struggle with walking. Others may struggle more with autonomic symptoms. No matter the details, we’re all on this journey together. We can encourage and pass on knowledge.

Knowing you’re not alone is priceless.

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.