Understanding the impact of stress on my daughter’s LEMS symptoms

Recently, my daughter Grace had an amazing opportunity to speak at Grace Under the Oaks‘ annual fundraising event. The Florida-based nonprofit offers horse therapy to adults and children with health challenges.

Grace was able to share what the past two years of equine-assisted therapy have meant to her. Not only does she benefit physically as someone with Lambert-Eaton myasthenic syndrome (LEMS), but she’s also developed leadership skills and self-confidence. She’s surrounded by a community that loves her and cheers her on.

I was very excited to accompany Grace to the event. While she was looking forward to sharing, there were a lot of unknowns. We had no idea who would be there or how big the crowd would be. Grace desperately wanted to make her horse therapists proud. Unfortunately, this came at a cost.

It was the first time I saw Grace’s LEMS symptoms flare due to stress.

After arriving, we quickly realized it was a big venue with a large crowd. Grace’s nerves kicked into high gear. Immediately, she needed to use the bathroom and continued to run to the bathroom throughout the night. I knew she was really nervous when she wouldn’t eat, even when offered some of her favorite foods.

But Grace persisted, despite her nerves, and gave a wonderful speech.

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Dealing with anxiety ahead of such an event is common; however, Grace’s nerves significantly exacerbated her LEMS symptoms, causing additional issues.

Immediately after giving her speech, a feeling of exhaustion came over Grace. She said her legs and arms felt heavy when she attempted to participate in line dancing later in the evening. She even said her breathing felt a bit labored.

Long after the event was over, her LEMS symptoms continued to flare. The next morning, it took her much longer than usual to get up. Most days, Grace is out of bed about 20 minutes after taking her morning meds. But when I checked on her more than 45 minutes after she’d taken her meds, she said it felt like they’d never kicked in. She stayed in bed for over an hour, which is very unusual for Grace. It took a good 24 hours for this flare to subside.

We learned some valuable lessons from this bout with stress.

Be ready

Next time, we’ll be able to anticipate Grace’s physical response to stress. If she’s facing a stressful situation, she can adjust her medication so it will have maximum impact during the event. Being aware of this trigger allows us to prepare.

Time to recover

We now know Grace will need significant time to recover from a stressful event. We knew this was the case with physical exertion, but now we recognize that it applies to mental stress as well. Thankfully, she didn’t have to work or go to school the following day. We’ll make sure she always has that downtime to recover.

Weighing the cost

Now that we understand how her body responds to emotional stress, Grace can weigh the pros and cons of each stressor and determine if it’s worth the cost. In this case, Grace wouldn’t have changed anything. She loved being with all the volunteers and staff who pour into her week after week. The cost was worth it.

Overall, the fundraising event was a great experience. We learned important lessons about dealing with stress and how it affects Grace’s LEMS symptoms. Going forward, we can make educated decisions for the benefit of her overall health.

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.