LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
Being diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) can be overwhelming, especially as abilities need to be reassessed and new realities have to be absorbed. But a LEMS diagnosis does not define a person. One of our LEMS Patient Ambassadors shared her perspective on how she moved forward to live her life despite her medical condition.
Jamie, LEMS Patient Ambassador
I can’t deny that LEMS has changed my life. How could it not? There are some things I now cannot do and extra precautions I must take, because of my diagnosis. But my perspective has slowly changed, and I have been learning how to live my life in a way that makes this diagnosis only one part of me. It doesn’t define all of me.
I used to love certain outdoor activities, like riding my bike or going to the beach. Of course, upon my LEMS diagnosis, I had to accept that I would no longer be able to do those things as easily and frequently as before. I felt really blue and down about that at first. But over time, I realized it didn’t mean I could never do those things. I learned to adapt by choosing to do certain activities when the sun was down, or after I got enough rest the day before.
Redefining What You Can Do
For example, if going to the beach on a hot day was going to be too much for me, I could pivot and go into the pool with my surfer suit that covered most of my body. In the end, I could still enjoy a warm swim without much risk to my health, which is all that mattered to me. And it makes me appreciate the outdoors more, now that I have to pick and choose the right activities to do at the right times.
Writing with my right hand, which is my dominant hand, was also a struggle. At first, it limited me. It was so frustrating, not being able to do something so simple like handwriting! But soon I realized, Wait a minute, I have another hand! So, I’ve been learning to use my left hand. I wasn’t going to let LEMS take more away from me; if anything, LEMS was going to make me learn how to do more things.
It’s never going to be perfect. I know that certain things are out of the question, like driving. Being unable to drive is particularly difficult to accept because it means I must rely on others to get around. In many ways, I feel like I’ve lost my independence. But I also don’t want to dwell on the negative. Redefining my abilities has given my family an opportunity to be there for me and provide me the help I need. I have a wheelchair now, and while having that isn’t quite the same as driving a car, it does give me back a little bit of the independence I thought was completely lost.
And being home more has given me the opportunity to develop new interests and hobbies, like cooking. I’ve really enjoyed cooking lately, and I’ve learned plenty of yummy vegan recipes. It has brought me joy, and it has had a great impact on not just my health, but my husband Mark’s health. I don’t think I would have invested this much time in my kitchen if it wasn’t for my diagnosis, so it really is about perspective and what you do with the circumstances at hand.
Looking Forward, Not Backward
With any disease, it’s so easy to feel “not normal”—but you have to find ways to find your “new normal.” I focus on the things I can still do, like shopping, or getting a coffee, or even putting on makeup! Make sure to focus on the good things in your life, because it is the good things that define us. Living with LEMS is still a learning process, but I’ve come so far since my diagnosis in 2019.
I will continue to look forward, not backward. I hope you do the same.
©2024 Catalyst Pharmaceuticals, Inc. All Rights Reserved. LEM-0418-1 November 2024