When I published my first blog post for “The Battle Within,” I was thrilled to receive a comment from a woman in Dallas named Betty Ann Lasley. Not only did Betty Ann become a fan of my blog, she became a very dear friend of mine.
At my first Lambert-Eaton myasthenic syndrome (LEMS) patient meetup in Kansas City, Missouri, I was surprised to learn that the beautiful woman across the table praising my writing was Betty Ann.
We’ve since attended multiple rare disease events together. She is beautiful, kind, and the the life of the party. She also is the one person in my life to say: “Keep writing, Dawn. You have a gift.”
Betty Ann has many gifts as well. No matter the challenge, she radiates positivity. She is the reason I continued with my blog, which led to writing this column. It is fitting that my final patient story for 2019 be about Betty Ann, in her own words.
Betty Ann, you lived a very busy life leading up to your LEMS diagnosis. Can you tell us a bit about that?
I grew up as a modern dancer and taught it for years. I worked as a VP of sales and marketing for a Belgian company traveling the world, when at around 65 I began to experience the symptoms of LEMS. It changed my life. Diagnosis after diagnosis came up with all sorts of interesting things. I forged ahead until I found the “wonder doctor” who knew a thing or two. Life has certainly changed, and although the treatments are scarce and minimal, I have forged ahead. Now it is almost impossible to travel the world, and I must consider where there are steps and appropriate seating.
How do you approach the challenges that LEMS brings to your life?
I smile and keep moving — no one wants to hear you complain. I still teach at a local college and, with my walker in hand, I teach those coeds that a handicap doesn’t get you down. I explain about rare diseases, and hopefully I have inspired one or two to think about such things. I try to work with Global Genes and the LEMS community to keep the interest up as well as hope in finding a cure and better treatments. I’m game to try anything.
What words of wisdom do you have for LEMS patients who may be overwhelmed by the extra work that the holidays require?
There are times when I think I’m a genius, and as I live alone, there’s no one to dispute me. It all began two weeks ago. Someone said Christmas is almost here — oh, no, time to put up the tree and all the “stuff” now in boxes on high shelves in the garage. But wait a minute — as a LEMS patient, to lift and bend and get on ladders is next to impossible. What shall I do? I do love Christmas and wouldn’t want to disappoint my grandchildren by not having all the festivities. I will repeat: I think I’m a genius. It dawned on me that I have five grandchildren, ages 13 to 17. Aha, perfect ages for a festive tree-trimming party and brunch. So one Sunday morning not too long ago, we all ate quiche, set up trees and “stuff,” decorated, and had a wonderful meeting of the cousins while I sat in my favorite chair, directed the entourage, and sipped coffee! Genius!
To all of you suffering from LEMS: “Where there is a will, there is a way,” as my mother used to love to say. Her other idiom was, “Don’t cry over spilled milk!” We are all suffering from this very debilitating rare disease which has come to us from who knows where and keeps us wondering what will happen next. It does seem at times that we have no control. I disagree! We can smile and say “onward” and work toward learning to live with LEMS in good humor and good heart. Ask for help from those who love you. Everyone loves to decorate a Christmas tree.
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 Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.