Rediscovering my love of reading now that my daughter is doing well
For many years on my daughter's LEMS journey, reading was impossible
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Note: This column describes the author’s own experiences with Firdapse (amifampridine), rituximab, and Mestinon (pyridostigmine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
From my earliest memories, I have always loved reading. As a child, I would spend my summers carrying stacks of books home from the library, climbing to the top of my bunk bed, and hiding away with a good one.
I can still remember the smell as I cracked open a newly borrowed book. If it was a captivating story, I could read it over and over again. One summer, I read “Wendy and the Bullies” four times. Later in life, it was not uncommon for me to have multiple books started, resting on my bedside table.
But when our then 15-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), reading became impossible for me. I would pick up a book and the words would appear jumbled on the page. My brain couldn’t hold plot lines or process character development. Reading became a frustrating experience, no longer bringing joy or welcome distraction.
Finding a treatment plan that works
Depression has a way of stealing joy out of life. What had once brought me immense satisfaction was now an exercise in futility. I grieved this personal loss as I watched my daughter struggle to do basic things. I lost the ability to read, but Grace lost her ability to walk up and down stairs, get out of bed in the morning, or even walk to the mailbox. It was a time of deep sadness on many levels.
Yet, time passed, and with it, a treatment plan was offered that has helped Grace tremendously. Of course, she takes daily medication. Firdapse (amifampridine) is her first medication of the day. She takes 20 milligrams, three times a day. Grace also benefits greatly from rituximab infusions twice a year. This has been a game changer for Grace. Her strength is back to near normal and her energy is incredible.
Grace took Mestinon (pyridostigmine) for years with minimal benefits. After speaking with her doctor, Grace decided to stop taking it due to the severe intestinal side effects. She has done well after removing that from her treatment plan.
Gradually, as she has improved, we began to see hope amid the diagnosis. It took a long time to get to where she is today, but now she is doing really well.
Eventually, my depression lifted. I am back to reading, when time permits. I can once again fully immerse myself in the pages of a book. Most recently, I’ve enjoyed books like “The Correspondent” by Virginia Evans and “Theo of Golden” by Allen Levi. These days, I squeeze my love of stories into every crack and crevice of my day. Car rides are no longer silent as I listen to a lovely series called “The Unselected Journals of Emma M. Lion” while driving to work or running errands.
LEMS can take a lot out of you. It can steal hobbies and passions, experiences and relationships. But we have found ways to take back what we thought was lost forever. I hope, in time, you can reclaim some of what LEMS has taken from you, too!
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, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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