A New Medication Has Given My Daughter Her Mornings Back
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,…
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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The need to make connections in the LEMS community
I’m a product of the 1970 and ’80s. We grew up with big hair, neon fashion, and the rise of music videos on MTV. I can remember sleeping on the floor of our family…
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Engaging in Open Dialogue With Doctors Helps Us Make Informed Decisions
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.
How We Decided to Change Our Daughter’s Medication Schedules
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…
These Tips Help Me Prepare for Our Next Doctor’s Appointment
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…
We Have Found Accommodations That Make Life Easier for Our Daughter
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…
We Have Learned to Celebrate the Little Victories
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…
We Recognized the Great Value in Community During the Pandemic
We are living in unprecedented times involving a pandemic and political and social unrest that has been debated in many homes and communities. Even amid all the disagreement and…
How Books Inspire Us to Embrace Our Circumstances
The paths of those affected by Lambert-Eaton myasthenic syndrome (LEMS) hold many twists and turns. Our family has experienced many ups and downs since our daughter Grace was…
I Acknowledge the Sadness and Then Count My Blessings
Eeyore from “Winnie the Pooh” has never been my favorite character. For most of my life, I could not relate to his ever sad disposition. He always seemed so melancholy and intent…
The Fog of Uncertainty Lifted When My Daughter Was Finally Diagnosed
Many people with Lambert-Eaton myasthenic syndrome (LEMS) wait an extremely long time for a diagnosis. Our family waited nine months, a relatively short time compared with others in the LEMS community. …
Motion Analysis Helped Grace Get the Most Out of Physical Therapy
I have often said that we would try any treatment if it meant more mobility, strength, and health for our daughter Grace, who is living with Lambert-Eaton myasthenic syndrome (LEMS). …
Acknowledging the Loss From Chronic Illness Helped Us Emotionally Heal
I consider myself a pretty resilient person. My husband is in the U.S. Navy, and I can accommodate most situations. For example, we have moved 10 times, three of them…