Putting Out the Fires That Flare Up Because of LEMS

Ebbs and flows seem to come with a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). I’ve equated that diagnosis stage to putting out a fire. Everything else in life seems to halt so that the fire can be put out. Finally, the fire is smothered as a diagnosis is made. The smoke may linger and there may be hot spots, but the full heat of the fire cools.

It was only at this point that our family found it possible to construct what our new normal would look like through the lens of LEMS.

Life settled into a comfortable rhythm. For our family, that meant Grace, our daughter who was diagnosed with LEMS at age 14, began to gain back the 15 pounds she’d lost. It meant renewed strength as she tried procedures such as IVIG infusions. Medications including Firdapse (amifampridine) and Mestinon (pyridostigmine) restored some of her mobility. Finally, it meant resuming activity and learning new skills as she progressed through high school.

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However, every now and then something happens, and we are thrown for another loop on the roller coaster of life with LEMS. Recently, we had a situation in which Grace’s abilities were challenged and she was left to fend for herself.

Grace attends a small school picked specifically for its intimate nature, in which the teachers all know the kids very well. We also chose this school because it has an elevator for her to use. Grace is very unsteady going up and down stairs, so an elevator is a must.

I’d thought I’d done my due diligence and made everyone at her school aware that Grace is unable to go up and down stairs unassisted, especially with a bag full of books. But midway through a school day recently, a staff member notified her that the elevator was broken and she’d have to find her way down the steps.

Alone and anxious, she carefully made her way to the stairwell and proceeded to descend the stairs slowly. Thankfully, she made it safely down the 25 or more steps. But when I heard what happened, I was perplexed and a bit angry. I couldn’t understand why numerous things hadn’t happened to help Grace.

Advocate for yourself

First, I talked with her about advocating for herself. There were people willing to help. She has friends who could’ve assisted her, as well as teachers and staff willing to step in. But without her voicing those needs, they went unnoticed.

Use technology to your advantage

Second, she didn’t think to use technology for her benefit.

She carries a cellphone, but she didn’t call me to help her. I happened to be in the parent pickup line outside the school because it was the end of the school day. It would’ve been easy for me to come in and help her. In addition, she wears an Apple watch. Again, she could’ve easily used it to text me or a friend to come help her.

Nowadays, we have so much technology that can help us get assistance when needed.

Educate others

Finally, we reassessed what we needed to reiterate to her teachers and school staff about Grace’s needs. A simple conversation reminded the staff about those issues, and we put in place a plan of action in the event the elevator breaks again.

Educating others like this is not new for us and happens quite frequently for Grace. Not too long ago, she did a great job advocating for herself at work. A new manager wanted to move her from the cashier position to assisting customers with carrying groceries out to their cars. Without hesitation, she told him she was unable to do that. She also shared that her managers had agreed she wouldn’t have that as collateral duty.

For a brief moment, the fire was stoked, and we needed to give our full attention to that hot spot. Hopefully, we continue to have fewer and fewer flareups as we continue on this LEMS journey.

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 myasthenia syndrome.