I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one of the most difficult aspects of my life. As I look back on the last two and a half years since Grace began showing symptoms, I realize how I haphazardly stumbled through the five…
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world thanks to the U.S. Navy. She has a degree in human resources but enjoys writing to encourage and inspire others. When her daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome at age 15, Lori sought community and encouragement from those walking a similar path. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family. Currently they live in Jacksonville, Florida.
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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…
A few weeks ago, I wrote about our daughter’s desire to get a summer job. I was overwhelmed with the limitations that Grace faced in her job search, knowing she can’t work a typical job for teenagers like most of her friends. Many of the jobs available to her…
I have spent most of my life in a rush. As someone with a Type A personality, I love to be organized and manage my time efficiently. A great day for me is full of activities and to-do lists. Every task seems to carry a sense of urgency. There…
Our family loves to travel. Thanks to the military, we have spent years raising our kids in places like Singapore, Thailand, and Italy. We have loved our visits to monasteries in Germany; castles in Austria; beaches in Indonesia, Malaysia, and the Maldives; and Big Ben in England. But when our…
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” — Mother Teresa In my experience, if someone claims that you can’t make a difference in someone’s life, I’d guess they’ve never walked the hard road of…
As the days slowly lengthen and stretch before us, I am faced with new challenges caused by Lambert-Eaton myasthenic syndrome (LEMS) and the limitations it places on our 16-year-old daughter, Grace. After a year gone topsy-turvy with COVID-19 protocols and accommodations, we came to a manageable…
Recently, I wrote about our family’s periodic need to assess medication protocol. This helps us figure out what is and isn’t working. I am a caretaker of our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). It is important that I communicate with her to determine…
Most people in the rare disease community can relate to the constant march to various doctors in our quest to manage our health, or that of a loved one. Our doctors are invaluable. If we are really blessed, they walk compassionately beside us on the…
It seems that Lambert-Eaton myasthenic syndrome (LEMS) likes to keep us guessing. Two years after our daughter Grace’s diagnosis, we are still learning how the disease affects her. On many days, we feel that Grace has settled into a manageable routine. We see improvement in her…
For the first year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), our schedule was filled with doctors’ appointments. Referrals to neurologists, rheumatologists, dietitians, and physical therapists abounded. Add in monthly IVIG treatments, and it felt like we lived at the hospital.
As the mom of a 16-year-old daughter with a rare disease, I’ve had to learn how to accommodate Grace’s limitations. Many daily activities became much harder after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). My goal is to make her life with LEMS as easy…
If anyone had told me three years ago how our life would look today, I would not have believed them. I never thought I’d be caring for a child with a rare disease. It is exhausting, rewarding, and I don’t think anyone can prepare for it. …