Accepting personal support
A brief personal background follows to help convey my lack of readiness to be a recipient of support. Following that is my daily schedule.
I was poor at grade school, a bit of an athletic and academic star in high school, weak but learning to stand on my own two feet during University and a pretty solid software programmer in my first job. I suffered from depression, anxiety and self doubt in my youth, learned coping mechanisms in my mid-to-late 20s and have been fairly happy and positive ever since. My career progressed and I had opportunities and successes in building significant financial technology systems first as a programmer, finishing as an executive. On the athletic side, I stayed in shape working out several times a week and played industrial league soccer, played volleyball, curling, beer league hockey, softball, and entered road races as a competitive runner on a competitive team. I coached men’s soccer and kid’s hockey. Many teams won championships. One thing I was not: Humble.
TDCAA Championships 1977
Modesty comes naturally to some people but not to me. I loved projects and competitions and always proceeded with a 100% belief in success. Through hard work, teamwork, determination and intelligence almost all projects, athletic and sales endeavors were successful. There were some failures. Fortunes and championships were won and lost. I traveled the world.
World travels: David, Charlie and me: Tian Shen Mountain Ürümqi, Xinjiang, China
My life changed when I could no longer walk fast enough to get to the elevator before the doors closed. I had to ask for help. Eventually, when traveling I needed to have someone push me in a wheelchair from the airport entrance way to the gate (oftentimes Charlie), carry my bags and help me to my seat. As the disease progressed I have come close to being a quadriplegic and my need for support has increased. Every step of the way I pushed my body and mind hard striving to live independently. Some people would call this stubbornness. Regardless of my desire to remain independent, accepting help was necessary and inevitable. As your health diminishes you need to understand what you can and cannot control and learn to accept the things you cannot change. Strive for serenity.
Hockey Awards night with Coach Trevor and Coach Drew
My current daily schedule involves regular visits from personal support workers (PSW) and nurses. What follows is a typical daily schedule.
7:00 AM: Two PSWs arrive at and using a Hoyer lift transport me from bed to the commode chair where they help me with performing the normal morning functions: shit, shower and shave. They dress me, make the bed, attach my computer to my electric wheelchair and help with a few other start of the day tasks.
8:30 AM: My caregiver helps me drink my coffee, pours a juice and provides other support if needed. I take time to read, write and correspond with friends and family.
10:00 AM: The nurse arrives to help feed me the through the gastrointestinal tube that was inserted into my stomach over a year ago. She also helps with the cough assist machine, clearing my lungs and the phlegm from my throat. Most people with ALS die from choking. After this visit it is back to reading and writing.
Gastrointestinal (PEG) Tube
11:45 AM: A PSW arrives to help me with the portable urinal (a plastic jug), refresh my drink and provide other assistance as needed. After the PSW leaves I have free time until 4:00 PM. If the weather is good I will head outside and travel around the neighborhood otherwise I will continue reading and perhaps do some research into ALS and a variety of items of interest to me. Sometimes I have visitors. My caregiver assists with me drinking juice and provides other support as needed.
4:00 PM: The nurse arrives to help feed me and again assists with the cough assist machine. I usually watch a television news feed when the nurse is here.
4:30 PM: A PSW arrives to help me with the portable urinal, make my tea, wash the mask I wear overnight to breathe and provide other assistance as needed. My caregiver assists with me drinking the tea, helping me with my medicinal marijuana vaporizer and provides other support as needed. On a good day I keep reading and writing. On a gloomy day I usually fire up Netflix and watch a show.
6:30 PM: A PSW arrives to help me with the portable urinal, make my smoothie and provide other assistance as needed. My caregiver assists with me drinking the smoothie, helps me with my medicinal marijuana vaporizer and provides other support as needed. I usually have Netflix, hockey, basketball or baseball on the TV and occasionally have visitors.
9:30 PM: The PSW arrives to assist me in getting prepared for bed including setting up the bed, pulling down the blinds, dressing, toothbrushing, and other related tasks.
11:00 PM: My caregiver assists me in getting into bed using a Hoyer lift. This can take some time as typically I need a sip of water to clear my throat beforehand and I need to be placed just so in the bed because I will not be able to move of my own accord until morning. Most of my “Princess and the Pea” moments happen at this time. If I’m not set properly in bed I will not be able to sleep. My caregiver keeps the baby monitor in the room in case anything goes wrong. Thankfully 19 times out of 20 there are no issues.
The host of support workers and nurses and the services they provide are essential to my health and well-being. Without them I would be bedridden and quite possibly dead. Transitioning from let’s say assistant captain of industry and athletics to quadriplegic and accepting help can at first be humbling but the reward is that I am as healthy as one can be with ALS and I am alive.
Branham Group Product Launch of the Year 2001