LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
Tescha, LEMS Ambassador
“No hard feelings if you need to walk away,” I said to my partner. This wasn’t an easy conversation to have, but I was being truly honest.
See, at the time, I had just been diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) and learned that the disease is progressive. It was 2019, and I was already very ill.
My then-partner and I were only a year into our new relationship—and I was eight years older than her. How could I ask anyone to commit to a lifetime of coping with my disease? I would have totally understood if she didn’t want to go down this road with me.
Well, that partner is now my wife. We wanted to tackle this disease together. Conversations about plans for our future had to start happening because my life was changing now.
While receiving my diagnosis was in some ways a relief after spending so much time trying to find an answer for my symptoms, it felt like my independence had come to a screeching halt. I stopped working at my job as a physician’s assistant and went on disability because it was too much of a strain on my body and I could no longer keep up with the workload.
Having discussions with my healthcare team about treatments and disease progression is also important. I’m pleased with my current treatment plan, but I know that I can have those conversations with my doctor when I need to. My doctor also told me that my LEMS is atypical. Where most people with LEMS might see improvement with exercise, my symptoms increase with activity.
This was difficult for me to hear because I’ve always been a very active person. I grew up playing sports, and now I could barely keep up on a bike ride. Being immobile didn’t fit into my reality. I couldn’t not be active. It made me fearful of having children with my partner because, if I can’t run or play with them, how could I be a parent to them?
But after giving it more thought, I came to the realization that children need love and support more than they need to run and play. Changing my mindset really helped me. I decided that I was just going to do the best I could and take every day as it came. I couldn’t dwell on the what-ifs.
I was in my 40s and having to rediscover who I was. I lost the future I had planned, but I realized I could make a new one. I’ve found joy in a lot of new things. Woodworking has become my outlet. It keeps my mind busy and allows me to take breaks when I need to so I can go at my own pace. I’m able to continue doing the things I love, just with some modifications. For example, I couldn’t keep up on bike rides anymore, so I got an electric bike to help with that. My outlook on life has changed since my LEMS diagnosis. I’ve learned to slow down and stay in the present moment.
While I try not to think too much about the future and choose to focus on the present, I know that having these conversations about next steps are important because now I can look forward to knowing that I’m prepared.
© 2024 Catalyst Pharmaceuticals, Inc. All Rights Reserved. LEM-0384-2 September 2024