When the Going Gets Tough…

It started with a little stumbling and foot drop in 2022. Then, the diagnosis of ALS in 2023. ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder that affects nerve cells in the brain and spinal cord, leading to a gradual loss of voluntary muscle movement.

Charlotte (Holly) Mertz, Verandah resident, artist, art teacher, published author, and former Swing Singer, along with her husband, Glenn, have learned to work around obstacles rather than be overcome by them.

When visiting Charlotte, I am greeted by her disembodied voice saying hello to me from what looks like a computer screen. The keyboard is on the screen itself. Beyond that, I see her smiling face and upbeat attitude. We talk about what’s happening at Verandah, little things that would make her life easier, and try to problem solve ways to overcome obstacles.

When I approached Charlotte about this article, she asked that it inform about ALS and the abilities it steals (voice, mobility, dexterity and even the ability to use common modes of technology and communication).

Then, she proceeded to write her story using her eye gaze to spell out words on her keyboard screen set up to record and read her words! It is a slow, tiring process, but enables her to communicate.

Here is Charlotte’s story in her own words. “I was first diagnosed in April 2023. I used a cane at that time for stability and transitioned to a walker. Following a fall in November, I ordered a power wheelchair, meanwhile using equipment on loan through both the Fort Myers ALS Clinic and Verandah’s own medical equipment lending program, Grandma’s Closet.

“In July of 2024, we agreed that I needed more care than Glenn and home health care workers could provide, so I moved into The Preserve, an excellent long-term care option. Glenn comes daily to feed me and keep me apprised on events elsewhere.”

“Faith and prayer support have helped me deal with the many challenges I face. Not faith in faith or the power of positive thinking, but faith in a loving God and that has a higher purpose for allowing me to go through this. By focusing on purpose, my mind turns to ministering to others rather than bemoaning my own circumstances.”

“My priority shifted when I realized how little time I might have left. Knowing I would lose dexterity, prompted me to finish writing a long-neglected manuscript while I could still type. It also reminded me to organize and distribute paintings, equipment, and other belongings I could no longer use, but that others could.”

“Certainly, there have been tears of frustration when my muscles failed to respond to the commands from my brain, or when my speech became too incomprehensible to express my thoughts. It seems ironic that I learned (rudimentary) sign language in case of hearing loss, but by the time I needed it for speech, my hands had contracted too much to use it.”

“Fortunately, at the first sign that my voice was losing quality, I contacted voicekeeper.com and began making an AI recording of my voice that could eventually be uploaded to an AAC (assistive augmented communication) device. Almost a year later, I acquired such a device through an organization called Team Gleason. Their loaner, TobiiDynavox, has reopened my lines of communication with both immediate caregivers and the outside world. The device, which resembles a computer monitor, “reads” the shifting directions of my eye gaze to spell out words on the screen, since I can no longer use a manual keyboard. It is much slower, of course, even slower than phone texting, and clumsy for extended conversations. But it has made a world of difference for me. Not only can I write my thoughts, but I can use it to operate the TV, read Kindle books, listen to Spotify, send and receive text messages, and eventually, email and view pictures.”

Charlotte is immersed in a legacy project creating photo books for family members using her own favorite artwork. Her book, Spiritual Gifts; Lessons from the Source is available online.