LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
For LEMS Caregiver Ambassador Mark, one of the hardest parts of his wife Jamie’s Lambert-Eaton myasthenic syndrome (LEMS) diagnosis is seeing how it drained her energy and independence. Jamie is a former athlete, but with LEMS, she sometimes struggles to stay active. While watching this transformation has been hard for Mark, his deep love for Jamie motivates him to fight for her. In this blog, Mark shares some of the steps he’s taken to find new ways to keep Jamie moving while maintaining her independence.
How We’ve Adapted to Life with LEMS
Jamie always loved swimming, volleyball, and basketball. She could whip my butt in any sport! LEMS changed all that. When she’s tired, her motivation disappears. Her balance is bad, and she needs assistive devices. Being out in the sun is painful, which is tough because we live in Florida, and we love going to the beach. These drastic changes can be hard to watch, but it’s important to find ways to adapt.
When it’s not too sunny we try to get out to our community pool. It takes a lot of energy to get there, but once Jamie’s in the water she loves it. She does chair yoga with resistance bands, takes care of her dog, and still does her own laundry and cooking. I always celebrate her accomplishments because I know how much energy it takes her to keep moving.
Embracing the Simple Life
Once Jamie was diagnosed with this rare disease, we knew we had to make some modifications to keep her safe and make it easier for her to keep moving despite her LEMS symptoms. We knew we couldn’t live in a large home with stairs—she’d fallen backwards down a flight of stairs before her diagnosis—so we moved to an apartment in a small island community in the Tampa Bay area.
It’s a beautiful community, even a little romantic. It’s so peaceful and serene, and that makes it easier to focus on her overall health. We feel completely safe and secure there, too. That’s the biggest thing for me, because I want Jamie to feel safe when she goes out.
Offering Support and Encouraging Independence to LEMS Patients
One way I support Jamie is by helping her hold on to her independence. She’s one of the most independent, motivated people I’ve ever met. That’s why I love her, and it’s one of the reasons I married her. She makes her own choices—I’m not forcing stuff like diet and exercise on her. That’s how it’s always been, even before LEMS. Our relationship isn’t patriarchal. I don’t tell her what to do: I encourage her, make suggestions, affirm her decisions, and celebrate her wins.
I try to find things we can do together when she’s up for it, like swimming and walking. When I ride my bike, she might get in her power chair and ride with me. I will help her cook sometimes, but that’s an activity she likes doing on her own.
Striking a Balance as a LEMS Caregiver
For me, caring for a LEMS patient is an act of love and honor. It’s also a constant balancing act between providing support and independence. The keys to striking that balance are observation, focus, and communication. As a pastor and mentor, empathy is my skill set. When I walk into the room, I gauge how Jamie’s doing. I read her body movement, eyes, and how she greets me. And I accept that it’s going to be different every day.
I also accept that my focus is Jamie. I work in hospice, so I try not to “dump” my experiences on her. Instead, I ask myself how I can help her the most. Luckily, we have good communication. That helps avoid friction. It also helps us understand we each have activities we like to do that keep us anchored—like blogging for me—and we need to give each other time to do those activities.
Advice for Supporting Your Loved One Living with Lambert-Eaton Myasthenic Disorder
Each person living with LEMS has their own limitations and abilities, and we caregivers play an important role in keeping them moving despite their muscle weakness and other symptoms. You just have to do it with grace, a gentle voice, and a gentle hand. Your loved one with LEMS needs to find the strength and will to stay active, but it can never be forced; that won’t work. I find making gentle suggestions will motivate Jamie more than making ultimatums. But you can also go in the other direction and “smother them with mothering.”
It’s a delicate dance, but it’s worth it. For us, we celebrate what Jamie can do and find the beauty in it, and that helps us value the time we have together.
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