For ALS Awareness Month, we asked members of the Les Turner ALS Foundation’s Support Services Committee to help us explore topics in ALS that people should know more about.
For the first week of May, we’re looking at a day in the life of someone who’s living with ALS.
Robert Akins says that almost from the first moment he and his wife learned of his ALS diagnosis, they realized that they would have to reinvent their lives. “But in those first, early weeks, we had no idea what that really meant; we had no idea to what extent everything would have to be reinvented.”
Robert was diagnosed with ALS in 2006, at the age of 49. His formal training was in science and engineering, and as the author of 13 patents, he’s always brought an inventive nature to finding the right technical solutions for problems. As his ALS progressed from twitching and muscle weakness in his upper arms and shoulders to full-time use of a wheelchair without use of his arms and hands, he’s continued to figure out ways to help him compensate for loss of function.
Below, we’ve shared a few of Robert’s adaptations and innovations over the years. You’ll learn much more in his complete essay, which delves deep into home renovations, smart devices for home control, and other topics that give you a sense of what it’s like to live with the challenges and constant changes of ALS.
Workplace Challenges
“At the time of my diagnosis, or shortly thereafter, my first thought was to keep working as long as possible, primarily to buy time while we figured out our financial situation. We had two kids, a freshman and senior in high school. Getting them through college and launched in life was our top priority. I endeavored to keep my diagnosis secret from my employer, out of concern that if they knew, I might become a target for layoff (my employer at the time was going through some major restructuring/downsizing). It worked. I was able to continue working for three more years before retiring on disability.
“While I continued working I had to incorporate several adaptations to compensate for my weak arms and weakening hands. As I recall, I think the first challenge was starting my car. I could get the key in the ignition, but had a hard time turning it. This problem had a simple solution – an enlarged key fob. I found this device on a website for people with arthritis. With this, I only needed to push or pull the blue handle in order to turn the key.
“The next workplace challenge for me was using a computer mouse. Because a mouse is manipulated off to the side, my weakened shoulders made this difficult. After first trying a trackball, the best solution I found was something called a roller mouse. This permitted all mouse activity to be accomplished with small movements of my fingertips, right in front of me. I used one of these for years both in the office and in my home.”
Clothing and Zippers
“At about the same time I started to have trouble gripping a zipper, making it difficult to go to the bathroom when I was at work.
“I solved this by wearing suspenders and putting a large ring on my zipper. I found some 1 inch diameter metal rings on Amazon. I placed one of these on all of my pants through the small opening at the tip of the zipper. I was able to place one finger through the ring and pull my zipper up or down. Suspenders held my pants up while I was doing this.
“This plus the switch to boxers enabled me to go to the bathroom on my own when needed. No one ever noticed these things, or if they did, they were at least too polite to ask me about them.”
Beach Vacations and Swimming
“We rented a small cottage on the edge of a shallow inlet protected by a large rock formation. It made an ideal place for me to enjoy the water. But one day while my wife and daughter were walking up the beach, I spotted a sandbar projecting out into the large bay next to our protected inlet. I started walking out on this sandbar so I could enjoy the warm water and watch the sea life on the floor. I was in about chest deep water, looking down at the bottom when I was unexpectedly lifted up by a larger wave and deposited about 10 feet from the sandbar. I suddenly found myself in much deeper water. Not anticipating any problem, I started to swim back toward the sandbar.
“To my utter surprise it seems that because of my weak arms and shoulders, I was no longer able to swim! After a brief moment of panic, I rolled over onto my back and tried to kick my way back toward the sandbar. But the incoming waves kept pushing me away from the sandbar, so I turned around and started kicking toward the beach, a couple of hundred feet away. It took me a while, but I eventually made it to the beach, thoroughly exhausted. During that long swim it definitely occurred to me that I might drown.
“Did that frightening experience stop any further thought of beach vacations? No! After that experience we went back to the same spot in Puerto Rico the following year, and for the next half-dozen years continued going to Sanibel/Captiva for spring break to visit my father. But from that time on whenever I went near the water I was always with either my daughter or son (both were on the swimming team in high school and both were lifeguards). I also purchased a cheap paddleboard on each trip which I would keep tethered to my wrist whenever I was in the water. That worked for me like a flotation device and at the end of our vacation I had the enjoyment of finding some young kid at the beach to whom I could give this away (we didn’t want to have to lug it back on the airplane).”
Traveling Abroad and Walking Tours
“After I retired, our Christmas trips became more adventurous. We started traveling to Europe. As we were tourists, these trips generally involved a lot of walking. The last couple of years when I was still walking, I started having problems with my head hanging down as my neck got weaker. At the Lois Insolia ALS Clinic, I was prescribed a neck brace which propped up my head. This made it much easier for me to walk.
“This extended my ability to walk for a year or two. But eventually I had my first fall. I tripped on a cobblestone street in Venice. As I wasn’t able to use my arms to break my fall, I landed headfirst and was knocked out. I was taken to the local hospital in a Venice ambulance, which turns out to be a boat. I spent a night there and another day or two recovering at our hotel. We continued on our trip, but alas this ended our family Christmas trips overseas.
“Somewhere around 2011 I finally had to give up driving. I would still go out frequently with my wife on the weekends. After my second fall/hospitalization (again I tripped and landed headfirst) I began wearing a bike helmet and started using a portable wheelchair whenever we were out of the house.”
Roll-in Showers
“In 2012 we found and purchased a lot in the same town where my wife taught school. The second architect we found, and with whom we completed a design, had a designer on staff who was wheelchair-bound. He definitely understood what we would need, and that helped a lot.
“We finished our plans by the end of 2012 and began construction in late spring of 2013. The house was finished in March 2014 and we moved in right away.
“Because we were building the master bedroom/bathroom, we were able to make the bathroom especially suitable for wheelchair use. I did as much research as possible into what I would likely need. Much of the online research suggested that bathtubs were more important than showers. That turned out to be wrong for me. I do have a deep bathtub, which I have never used. However I planned for a large roll-in shower, and that I use every day.”
Morning Routine
“Sticking to a routine makes things both easier for me and my caregivers. A caregiver arrives every morning at 8:30 a.m. She transfers me to my wheelchair. I drive out to the kitchen for a glass of water, a cup of coffee and sometimes if I am hungry a muffin or a piece of toast. I use a conventional glass and straw for my water (someone has to hold that up for me while I drink). For my coffee I have an insulated cup with a long flexible straw so that I can drink it on my own, at my own leisurely pace.
“I have my morning coffee at the kitchen table in the winter. But as the weather warms up I have my coffee most mornings on the back porch. The double doors to the porch are visible just off to the right in photo 15. In the summer, on good days I will even go outside to the back patio for my morning coffee – after the patio table/umbrella are set up of course. Because the house is at ground level in the back, and the threshold in the door from the back porch to the patio is flush, it is very easy to drive my wheelchair onto the patio.”
“These years with ALS have required one constant adaptation after another. I have come to realize over this time that my battle with ALS is fought on three fronts; agency, dignity and hope. Being able to adapt my environment so that I can do as much as possible for myself is my fight for agency. Dignity for me long ago stopped being about physical dignity. I now think of it as mental dignity. Finding adaptations that work is something like solving a puzzle. This activity is one of the projects that provide me with a sense of dignity. As does working on projects like this one. And finally having the right adaptations provides me with hope. Hope to me does not mean that tomorrow needs to be a better day. It only means that tomorrow should be a good day. And for the way I live, almost every day is a good day.
“I enjoy my life. I look forward to getting up every morning. I have plenty to do and almost never get bored or depressed. It has taken a lot of devices and adaptations so that I can feel this way. I realize how lucky I have been that I’ve been able to make the kinds of accommodations that enable me to continue having a good life. I want everyone who suffers from ALS to be able to have a similar outcome. That unfortunately is not the reality for many of my compatriots.
“There are some wonderful organizations helping people cope with ALS, such as the Les Turner ALS Foundation and Team Gleason, to name a few. I wish more resources were available for all of the organizations like these, serving the ALS community as they help everyone try to maintain their best possible lives.”
Thank you to Robert Akins for sharing this with us! Read his complete essay to enjoy more of his perspectives on living with ALS, and please consider making a donation so we can provide care and support to people affected by ALS.
