A Nebraska man was diagnosed with ALS in January. His family shares how they've had to cope with the terminal disease at home.
- Nebraska professor Chad McBride was diagnosed with ALS in January.
- His condition has forced his husband, Allen, to be a caregiver to both McBride and their 4-year-old son, Jackson.
- Because of the pandemic, the couple has had to administer McBride's IV treatments themselves, and a promising clinical trial has been put on hold.
- Friends have launched a GoFundMe so McBride can get a motorized wheelchair and the family can move into a handicap-accessible home.
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A year ago, Chad McBride was the chair of the communications studies department at Creighton University in Omaha, Nebraska. He and his husband, Allen Saunders, were raising their 3-year-old son, Jackson, in a close-knit community of friends, neighbors, and colleagues.
"[Life] was beyond magical," McBride, 44, told Insider. "Jackson was everything we had hoped and dreamed about but never thought would be a reality. We were settled in careers and appreciative of every moment."
'I remember crying when Jackson came to visit me at the hospital'
On a work trip to Iowa in April 2019, McBride fell down a flight of stairs and broke his leg.
"I thought I would have surgery and be home that day," he said. But the procedure was delayed and when it was over, he realized his recovery would take longer than expected. It might be a year before he could walk and move like he used to.
"I remember crying when Jackson came to visit me at the hospital," McBride said. "I was sad thinking that it would be months before I could play with him on the floor and even longer until we could kick a soccer ball together."
But even if some things were not quite right — odd muscle twitches, a leg which would bounce involuntarily, numbness in his right toe — McBride's doctors assured him it was all part of the recovery process.
That optimism really lasted until December 2019, when he and Saunders went to lunch.
McBride had just given his last exam for the semester and the chicken enchiladas he ordered were "a bit of a celebration."
Receiving the diagnosis
"Allen was carrying my leftovers because I was a little unsure on my feet, but I was feeling confident in walking otherwise," McBride said. "I had made it off the curb and was walking through the flat parking lot when I just pitched forward."
"Because I had lost some upper body strength, I couldn't stop myself from hitting the ground," he added.
A month later, after a battery of tests, McBride's doctors diagnosed him with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, killing neurons that control voluntary muscles.
There is no cure: the disease progresses on its own unpredictable timeline, taking away the ability to walk, write, speak, swallow, and, eventually, breathe.
The life expectancy of someone with ALS is typically just two to five years. "The best-case scenario is I could live 10 to 20 years with this. I could watch my son grow up," he said.
McBride and Saunders have been together for 12 years and married for five. But ALS has forced them to reevaluate nearly every aspect of their life together. They're looking to sell their house, as McBride's disability has made it less accessible.
"This is the home where Allen and I created a family," McBride wrote in a recent Facebook post. "The home where we had so many firsts with Jackson: first night at home, first teeth, first steps, first birthday, first holidays."
His mobility and muscle control have worsened since December, and he's started to experience slurred speech. "I am using a walker now but I will be in a wheelchair soon," he said.
Friends have launched a GoFundMe to help raise $200,000 so he can get a motorized wheelchair and the family can move into a single-level, handicap-accessible home.
Putting the future on hold
McBride's on a new infusion IV therapy but because the hospital is on lockdown, he had to have a chest port installed so he and Saunders could administer the IV themselves.
"The only time I am scheduled to be seen by doctors or support staff is once every three months at an ALS clinic," McBride said. Those appointments are now by teleconference, instead of in person.
"I was able to talk with the nutritionist and speech pathologist, but not do any strength tests on my swallowing or the full range speech tests," McBride said. Strength and pulmonary tests are also unavailable and a promising clinical trial McBride was hoping to join has been put on hold.
"To qualify for the trial, my symptoms had to have started in the past two years," he said. "I am thankfully still in this window, for now."
The role of caregiving has fallen to McBride's husband, a human resources manager.
"Allen now has to bathe three of us — himself, me, and Jackson — and feed three of us," McBride said. "It's a heavy burden for him. He's not complaining but I feel really bad for him."
Saunders says he's always been a caregiver. "It's in my nature to nurture and help out when I can." Taking care of the family's needs is a challenge, he added, "but at the end of the day it has to be done."
'Every move has to be strategically planned'
McBride says his condition has given him a unique perspective on the pandemic.
"While I am concerned about getting COVID, I already have a terminal diagnosis," he wrote on Facebook.
McBride is more concerned about his husband getting the virus. "If he has to quarantine, Jackson and I would not be able to get through the day."
Saunders told Insider that "every move has to be strategically planned so I have the least exposure possible." Social distancing, he added, "makes it very difficult to get a break from caregiving."
McBride calls the lockdown "a double-edged blessing." Work meetings, soccer games, and playdates have all fallen away, replaced by more family time.
Father and son have found new ways to interact. "The walker that I use has wheels and a seat," McBride said. "He likes to climb up on it and let me push him around the house."
The couple makes sure Jackson understands the importance of being careful with his father's port.
"We are honest with him about all of that, but I don't think he is old enough to understand the prognosis," McBride said. "He likes to be helpful and he has gotten used to going to [Allen] rather than me for things that he needs help with."
"I am the person that he goes to for things like reading books or snuggles," he added.