August 2021 • 4 min read
23 Extraordinary People
In our society, it is all about the powerful, rich and famous, but to a large extent, it is the so-called ordinary people that keep the world going and make life worth living. Everyday people do much of our most important work with dedication and care. They focus on the things that really matter, connect with others and often show great kindness. In my experience, ordinary people are frequently our true heroes and make extraordinary contributions and sacrifices.
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I have met many extraordinary people on my ALS Journey. I am only able to name a few in this story. I have previously mentioned some of my wonderful doctors and therapists. Now I will mention a few other special people.
It started with Jo several months after my ALS diagnosis. She was the western regional outreach director for a prominent ALS research laboratory that I had contacted. I was in a panic and didn’t know which way to turn when Jo came for a home visit.
Jo recommended that I get established with a certified ALS clinic as soon as possible. She described in detail the staff and reputation of each of the nearest clinics. When I told her my choice, she told me which neurologist to request. I was very grateful for her knowledge and willingness to share such important information. This was rare in my experience, for someone that I barely knew. Jo kept in contact with me until her job was eliminated.
Marion, my first neuromuscular RN at the Mayo Clinic, utilized her caring traits. She regularly called me to see how I was doing until she retired. Jani and Krista followed. Betty and I met with them at each clinic visit, and we were able to contact them directly by telephone or email. They knew our situation well and were always available.
BETTY
Betty’s life and long-awaited retirement plans were turned upside down when I was diagnosed with ALS. I realized that I needed to build a support team to assist her in caring for me, to help keep up our home and to carry out everyday tasks.
Daily care tasks put a huge strain on partners and families. Betty and I decided that it was important for me to remain at home and for her to keep doing, as much as possible, the things that are important to her, such as traveling, hiking, attending exercise classes and gardening.
REBECCA
Rebecca, our long-time personal assistant, maintains our computers and other electronic devices. teaches us how to use them, handles most of our office work, finds the right people for home repairs, is our head gardener and helps with countless other tasks. Rebecca got to get her AA degree in photography during her time with us and has been a huge help in laying out our photography and computer projects. She also helps us remain calm in our sometimes-stressful household.
My home healthcare workers shower me, help me dress, continually put on and take off my neck brace, prepare food for my complicated diet, remind me to take my 20 daily supplements, make sure I drink enough water to avoid another kidney stone attack, clean my BiPAP and cough assist machines, maintain my touchy hearing aids, do my passive shoulder exercises, and assist as necessary with toileting. These are just some of my daily needs.
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Betty and I learn much from my caregivers, and we greatly appreciate their assistance. Some of the people assisting me come from other countries, live on nearby Indian pueblos (reservations), or come from Hispanic families that have lived in Northern New Mexico for generations. Their life experiences fascinate us.
Ethel is my primary caregiver. She has much experience and many talents; therefore, we are fortunate that she has chosen to be one of my caregivers.
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Along with the above tasks, she schedules and gets me to appointments and helps me solve daily problems. Ethel developed a COVID-19 pandemic protocol, which was essential given my susceptibility to respiratory problems and the multiple people coming to our house. This kept everyone safe.
REYNALDO
ETHEL
For years, Reynaldo has helped maintain our extensive gardens, skillfully taken care of our home repairs and shoveled snow when necessary. Reynaldo has many talents, including being a skilled stone mason. One of his more challenging projects was placing a 600-pound rock in our Japanese garden.
​Susan has been a lead volunteer at Loving Thunder Therapeutic Horseback Riding for many years. Without the dedication to the horses and riders by volunteers like Susan, there would be no Loving Thunder.
SUSAN
For four years, Susan has been my lead volunteer. Susan is always there for the horses and riders, no matter how busy she is.
I also want to acknowledge the help I receive from the ALS New Mexico staff and the emotional support and the knowledge that Betty and I have gained from our Santa Fe support group members.
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Finally, I wish to acknowledge our family and friends who have supported our annual ALS New Mexico Walk fundraiser. Their very generous contributions each year make a big difference in the lives of New Mexico families affected by ALS.
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My ALS story would not be as positive without the skills, dedication and kindness of the many extraordinary people who have assisted me in so many ways on my journey. I will forever be grateful to them.
