LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
There is no question that a Lambert-Eaton myasthenic syndrome (LEMS) diagnosis will alter how you do some of the things you normally did in your day-to-day life. But that doesn’t necessarily mean you can no longer do them at all. It may require a little extra effort and imagination, but you may be surprised to discover that you can do many of the things you used to do before your diagnosis of LEMS, just a little differently. One of our LEMS Patient Ambassadors learned that for herself and shares her insights below.
Tescha, LEMS Patient Ambassador
There is so much I love about my life, so upon my LEMS diagnosis, I was determined not to dwell on a negative mentality that would weigh me down. It’s bad enough that LEMS affects my body—I won’t let it affect my mind! So instead of seeing it as LEMS placing limitations on the things I can do, I genuinely characterize it as an opportunity to let my creativity find new and practical ways to do the same things I’ve always done.
#1 – Electric Bike
I love to stay active as much as I can, and one of the ways I used to do that was riding my bicycle. The reality of LEMS is that sometimes my legs are too tired to pedal the way I used to. But an electric bike was the perfect compromise for me. It works like a regular bike when I want it to, and when I get fatigued, it can take over the pedaling for me.
So, if there’s an activity you used to do that is difficult to do with LEMS, see if there’s a modified version or an alternative that will make it easier for you.
#2 – Wheeling My Kayak
Kayaking is something else I enjoy doing. While that itself isn’t too strenuous for me, carrying my kayak to the lake is. My kayak was getting too heavy and cumbersome for me to handle until I bought a wheeled trailer for it, which lets me wheel it down to the lake instead of carrying it. It makes a world of difference!
So, if something is becoming too difficult for you, see if there is a way to minimize effort and maximize efficiency.
#3 – Fishing with a Lawn Chair
Another favorite pastime of mine is fishing; there is something so peaceful about standing on the shore and casting a fishing line into the water. Unfortunately, there is something so exhausting about it too. Life with LEMS means that sometimes just standing on my feet is too much for me after a certain period of time. But instead of giving fishing up altogether, I added a portable lawn chair to my list of fishing gear, which lets me get off my feet when I need to—so I can remain on my fishing game.
#4 – Exercise Balls
Most recently, LEMS has made it difficult to hold and rock my infant daughter for a long period of time. That was a hard one to accept. I’m supposed to be her protector, but now I can’t even hold her for a long time? Luckily, I found that using those big exercise balls is a great way to support my arms and legs, letting me hold her for as long as I want. And I really think she loves moving and bouncing with me on it!
Don’t Be Afraid to Adapt
Living with LEMS can sometimes be very difficult, but at other times it can present opportunities to be resilient and resourceful. LEMS or no LEMS, that wheeled kayak trailer and the exercise ball were good additions to my life! So not only am I doing some of the same things I used to do, just differently; I think I am doing some of those things even better.
I hope you’ll find the same can be said for you.