Catching up with a friend about LEMS and her concussion recovery
Former columnist Dawn DeBois shares an update on her health
Before I started writing my column, “Stretcher-Bearers,” for this website, Dawn DeBois wrote the column “LEMme Tell Ya” about her journey with Lambert-Eaton myasthenic syndrome (LEMS). In September 2020, a traumatic brain injury (TBI) forced her to give up writing so she could focus on healing.
Dawn has made it her life’s goal to advocate for the LEMS community. She was and continues to be a wealth of information, encouragement, and friendship for our LEMS family.
Today, I’d like to share an update on Dawn’s health journey. Excerpts of our recent email conversation follow, with light editing for clarity.
LD: How long did it take you to get diagnosed with LEMS?
DD: I was diagnosed with LEMS in 2016, after more than 12 years of symptoms. However, the leg weakness, numbness, and muscle spasms plagued me for a decade before the search for a diagnosis began.
As a former Division I recruited athlete, I was ashamed of my weakness. I couldn’t exercise without having extreme pain and exhaustion. When I found I couldn’t get up from sitting on the floor without crawling to something to pull [myself] up with, I berated myself for being so out of shape. Nike’s “Just Do It” campaign made my frustration even worse. I had no idea there was a rare disease behind my symptoms.
Prior to my LEMS diagnosis, I was diagnosed with multiple other autoimmune diseases. When I was diagnosed with psoriatic arthritis, I was treated with hydroxychloroquine. It was that initial treatment that caused my LEMS symptoms to flare. A neurologist finally took my symptoms seriously. After my sixth round of testing for multiple sclerosis came back as “inconclusive,” my new neurologist said, “Dawn, I think you have an autoimmune disease attacking your nerves.” She was right.
Can you tell us about your TBI and the changes you had to make as a result?
During COVID-19 lockdown, I was internalizing the stress we all were feeling. I made the huge mistake of trying to get to my bed when I felt faint, but instead landed face first on my bathroom’s tile floor. I came to 45 minutes later with my eyes crusted shut from dried blood.
Vasovagal syncope [the fainting] is something I’ve battled my entire life, [but I] never had a medical provider tell me what I should do when symptoms happen. I should have been told to get down onto the floor when feeling faint so that I [wouldn’t] fall and injure myself!
More recently, when diagnosed with a concussion, I was told to expect a two-to-three-week time frame to recover. However, my symptoms continued and grew worse in the following months.
I was diagnosed with postconcussive syndrome. I attempted to continue my column during this time but eventually had to step down and rest my brain. For the first time in my life, I was unable to write. It was quite shocking how much that one fall changed my entire life.
What has helped you throughout your healing process?
Besides physical therapy, I found content from the University Health Network Foundation and the Concussion Legacy Foundation to be extremely helpful. Many organizations share educational posts on Instagram about how to best deal with concussions and postconcussive syndrome. Years ago, I came across some pivotal advice: A bad moment doesn’t mean it has to be a bad day. If your brain becomes overwhelmed, take a break for about 20 minutes in a dark, quiet room, and then return to your daily life. You may find your symptoms have abated.
I found improvement in my symptoms month to month by using that simple tactic.
What has been the hardest part of your recovery?
The hardest part of my recovery was the fact that, since concussions are so prevalent, with about 29% of U.S. adults reporting that they’ve experienced one, I assumed everyone would understand what I was going through. I was used to educating people about LEMS, but having to explain and educate about long-term ramifications of concussions was extremely shocking and frustrating. Many people became upset with how I was acting when my brain wouldn’t allow me to be the person I was before my concussion.
What do you look forward to?
Having LEMS does not put us in a bubble of protection from everything else. It doesn’t mean our only challenge in life will be managing our rare disease. Other difficulties will happen. When those curveballs hit, remember, stress exacerbates LEMS symptoms! Remind yourself that you have conquered the ultrarare disease diagnostic journey and are managing symptoms, so you can handle pretty much anything else in life!
I have learned the future is full of unexpected twists and turns. One such miscalculation is a 10-month-old puggle puppy who recently found his way into my home and heart. I had said “no more” after my dog Rocky passed away last fall. Well, God had different plans. I look forward to more wonderful surprises in the future!
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.
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