How I’m trying to manage stress while living with LEMS
Every now and then, I have one of those days when nothing goes right. The unexpected happens and throws off the whole day’s routine. I had one such day last week. That particular morning,…
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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Managing the medical anxiety triggered by a single phone call
It started with a phone call. Our daughter Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, was due for her annual neurology appointment. Things had been pretty quiet…
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On LEMS Awareness Day, let’s continue to grow our community
I remember the moment I realized our daughter Grace had Lambert-Eaton myasthenic syndrome (LEMS) like it was yesterday. It was a hot, summer day in Florida. I had sequestered myself on our outdoor…
Annual MDA conference prompts solidarity, gratitude, and hope
I have trained myself to look for the good in situations throughout my adult life. It’s not always easy. When my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), I never…
The uncharted territory of pregnancy and Lambert-Eaton
I vividly remember trips to the library as a young girl when a research paper was due. Once there, I’d trudge to the reference section and spend hours hunting for answers and information from…
We’ve never had more opportunities for raising awareness
The World Health Organization considers a disease rare when it strikes fewer than 65 people per 100,000. Here in the United States, a disease is considered rare when fewer than 200,000 people are…
With hindsight, some things I’d change during our LEMS journey
Parenting comes with the danger of holding on to a lot of regret. As our kids grow up and move into adulthood, we can fall into the trap of blaming ourselves for all kinds…
My daughter’s LEMS diagnosis led her to find new passions
Change is inevitable. Life won’t look the same tomorrow as it did yesterday, that’s for certain. Those of us in the Lambert-Eaton myasthenic syndrome (LEMS) community know that all too well. We…
How we protect our daughter with LEMS during cold and flu season
It’s that time of year again: the dreaded cold and flu season. I’ve never been more aware of it than I am today. Yes, I’m older than I once was, and sickness seems to…
In life with LEMS, celebrating the little wins is a big deal
There are things in this life that amaze me. The generosity of a stranger and random acts of kindness rejuvenate my view of mankind. The family that chooses to march forward in hope after…
After a LEMS diagnosis, good medication management is key
Once a month, Anovo pharmacy calls to refill my daughter Grace’s prescription of Firdapse (amifampridine). The conversation doesn’t vary from month to month. First, they’ll inform me the call is being recorded.
Choosing a word to live by in the new year as a LEMS parent
At the start of each new year, I do the same dance as many of you. I examine the year we’ve just left behind and intentionally pursue change in certain areas of my life.
Seeing my daughter laugh again gives me hope for the future
Some memories are so special that you know they’ll be held close to your heart for all time. For me, one of those memories was when we heard our daughter Grace laugh for the…