LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
Those who have been affected by LEMS know that life doesn’t always turn out the way they thought it would. Being diagnosed with a rare disease can alter future goals, hobbies, and relationships. But even though LEMS can
make life look different, it doesn’t have to be bad. We asked three of our LEMS ambassadors to give tips on adapting or modifying their environment to help them achieve what they want to do.
Greg, LEMS Patient Ambassador
The thing that changed most for me after developing LEMS was my level of activity, stamina, and endurance. After my diagnosis was confirmed, I was started on a treatment regimen. I began seeing improvement and the ability
to return to my enjoyed activities, but in a modified way. I was not able to return to work, so I retired and concentrated on caring for myself. I learned to schedule rest periods into my activities and get more sleep at night to
help me maintain a decent level of energy and stamina. The key is to know my limits, accept them, and respect them. On this journey with LEMS, you will have good days and bad days, but remember to always be gentle with
yourself and never give up.
Tescha, LEMS Patient Ambassador
At the time of my diagnosis, I was very ill and could no longer do the things I was used to doing. I was always a very athletic person, but now I couldn’t play sports, keep up on bike rides, or even balance on my motorcycle. I was in my 40s and having to rediscover who I was. But I realized I had to come to terms with the changes brought on by this disease. I couldn’t dwell on them. With some modifications, I could do most things I wanted to do. I got an electric bike so I could continue bike riding. I even picked up new hobbies that allowed me to set my own pace, like woodworking! My routine is completely different now, but I’ve found what gives me purpose and makes me happy.
Mark, LEMS Caregiver Ambassador
My wife, Jamie, was always very independent and confident. So one of the biggest challenges after she was diagnosed with LEMS was helping her adjust to those changes. It’s still a struggle sometimes because she feels
guilty if she’s not doing anything. Because of her disease, she had to stop driving and rely on friends and family to drive her. She has a nice quantum-powered chair, but it’s not the same as getting in a car and driving herself.
Even though she has lost some of her independence, I do my best to not overtake her life or make decisions for her. As her caregiver, it’s important to support her, rather than trying to just fix things. It’s a true honor to care
for her.
It can be challenging to accept the life changes that come with a LEMS diagnosis. Everyone’s situation is unique, but as Mark, Tescha, and Greg have shown, LEMS does not have to stop you from living your life if you
change your expectations and embrace your new story.
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