Sally Groesbeck
We Walk for Mindy
Event: | Kansas City Walk |
Date: | Saturday, September 28, 2024 |
Team: | Mindy's Darlings |
Our mom had always strived to be healthy. She ate the right foods, exercised almost daily, never missed a check-up or screening. She led a stressful life as the primary caregiver of her chronically ill husband of 37 years , her aging parents who both had Alzheimers, and supported us and our families on a regular basis as we juggled life with infants and toddlers that were high needs. In June 2014, she began slurring her speech and have difficulty swallowing. She was evaluated for physical therapy for her neck and her therapist noticed a strange reflex she had that wasn't normal. He referred her back to her doctor who noticed on evaluation that her tongue had overactive nerves that looked like worms moving on the surface. Her internist immediately sent her to a Saint Luke's neurologist who sent her to KU Med to confirm she had ALS. She later told us the day she walked out of the internist's office and googled what was going on with her tongue, she knew she had ALS. But in her true form, she kept this to herself and continued to the neurology appointments by herself to give us a few more weeks of blissful ignorance.
The type of ALS she was diagnosed with, was Bulbar Onset. It is the most aggressive form of the disease. Typical ALS begins in the extremities and works its way toward the heart and lungs. The longer you can prolong the spread of the disease to the lungs, the longer you survive. With Bulbar Onset, the disease begins with the nerves dying in the lungs and throat area so it attacks the ability to eat and breathe first. When she was diagnosed, doctors said that based on her symptoms and how quickly they were escalating, she had 6 months.
She was admitted to Good Shepherd Hospice in October 2015 as her lung function began to plummet. She faced many challeges in her final months--losing the love of her life, our father, who gave up his own fight once he realized her death was imminent; losing the ability to get restful sleep as a result of apnea, losing the ability to exercise (which she loved); losing the ability to eat the food she loved, losing the ability to drive, losing the ability to speak, losing the ability to write. Throughout it all, she did her best to keep a smile on her face and love in her heart and action. She stood strong in her faith and optimism until she fell into a coma. On April 25, 2016, she lost her fight with ALS.
Although she remained optimistic from the onset of her diagnosis, it was heartbreaking for our family, particularly her young grandchildren who were her biggest fans. Our mom was always our rock, mentor, cheerleader and friend. She never hesitated to drop anything and help those in need. She fought hard against a disease that has no winners because she didn't want to be a burden to her loved ones and she wanted to spare as much pain as she could. As I mentioned, at her diagnosis, she was given 6 months to live based on how rapidly her symptoms progressed and her limited lung function. She eeked out an extra 8 months past that date by sheer stubborness, optimism and faith.
We formed our team, Mindy's Darlings, as a way to honor her and the amazing mom, grandmother and friend she was. Some of our favorite memories were having picnics in the family room and watching her favorite movie, Peter Pan. She even continued this tradition with her grandchildren. Her favorite quote from the movie happens when Peter Pan is teaching the Darlings how to fly and says, "Just think of the happiest things, it's the same as having wings." This saying carried us through her ALS journey. Please consider walking (virtually or in-person) or donating in honor of Mindy. Our hope is that the funds we raise will go toward research and eventually a cure that will spare others and their families the heartbreak we have endured since our mom's onset of ALS.
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