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Photo by Madoline Markham.
ALS
Bryan Bonds and Glenn Love hold buckets that fellow members of Brookwood Baptist Church have used to complete the ALS Ice Bucket Challenge. Both men were diagnosed with the disease in late 2013.
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Photo courtesy of the Bonds family.
ALS
Miller Bonds pours ice water on his dad, Bryan, as a part of the ALS Ice Bucket Challenge. Miller, who plays college baseball, moved back to Birmingham from Charleston after Bryan was diagnosed with ALS in November.
For Bryan Bonds, it started with muscle jumps in his arms, chest and back. He and his family laughed about it at first, but when his left arm became weak, they grew concerned.
In the summer of 2013, his friend Glenn Love noticed his left hand had locked up while gripping the steering wheel on a drive home from Mobile. Lifting weights had brought on twitches in his arms for the past five years, but his hand made him start to think he might have the disease that ended his dad’s life at age 61 — ALS, also know as Lou Gehrig’s disease.
After months of rigorous testing, Love, 55, was diagnosed in December, just a month after Bonds, 49, received similar word from his doctor. The men had both watched their sons grow up in Brookwood Baptist Church and Mountain Brook sports teams and go on to play in college, and Love had passed on the reins of broadcasting MBHS football games on MBTV to Bonds after his youngest son graduated. Now they travel to Hoover together once a month to a room full of people older than them and in wheelchairs as a part of ALS support group meetings.
Statistically, two people in every 100,000 people have ALS, according to the ALS Association, but at Brookwood Baptist each week, there are two in 400. The neurodegenerative disease affects nerve cells in the brain and the spinal cord, progressively affecting arms, legs and breathing. For everyone diagnosed, it looks different. Some people live for five or more years after diagnosis, but the average life expectancy is two to five years.
Love’s dad, Tom, passed away a year after his diagnosis because it affected his breathing first. For both Bonds and Love, symptoms started in their arms, and they hope it affects their legs next, not their breathing.
Doctors told Love’s dad the disease was linked to heavy metals in the lab where he worked, but now Love knows that, like about 30 percent of patients, it’s hereditary for him.
“Now I am concerned about my sons, but by that time I think they will have a medicine,” Love said. He and his wife, Karen, have three sons, Wilson, Harris and Tyler.
Causes for the rest of those affected by ALS are unknown, as is what will stop the disease.
There is only one FDA-approved drug on the market, which Bonds takes. It claims to slow the progression of the disease and keep it from affecting breathing.
“Everything else is theory,” Bonds said. “One doctor will tell you to go off a cholesterol medicine, and another to get on it.”
Both men are following the Deanna Protocol, an experimental nutrition regiment that could slow or stop ALS. Love drinks nine tablespoons of coconut oil a day and credits it as the reason that a few weeks ago his left hand was able to grip a coffee mug handle again. He also works out five days a week at Life Time Fitness, as he has read that greater fitness results in a longer life expectancy for those with ALS.
Bonds and Love both said that their faith, family and their church have sustained them since their diagnoses. Bonds speaks highly of his wife, Emily, who works full time and takes charge of all cooking and cleaning as he can’t use his hands for any of those things. They know that they and their son Miller and daughter Anne Marie don’t face the future alone.
“We have had so many people [at our church] offer food and grass cutting, but we know there is a time when we will need it more,” Bonds said. “We feel an outpouring of love. I have had so many people who walk up to me and tell me they are praying for me, and I tell them, ‘I know you are and I feel it.’”
For him, there is something greater than use of his hands that he wants to teach his children.
“I am trying to have a testament to my children that there’s a better way to handle bad things that happen to you,” Bonds said. “I want them to see courage and faith in the face of adversity.”
Bonds’ son, Miller, helped his dad face a bucket of ice-cold water recently as a part of the ALS Ice Bucket Challenge.
“I am overwhelmed by the number of people who have done it worldwide,” Bonds said, noting how encouraging it was to see out-of-town friends tag him in their posts. “It means a lot that they are doing it for me.”
Love’s wife, Karen, poured water on their son Tyler, and the three people he challenged all completed it. Love also watched videos of the University of Alabama football team, where his son Wilson is a graduate assistant under Nick Saban and son Tyler played as well, and a group of 200 of his coworkers at Hargrove Engineers, where he worked through April 25, complete the challenge.
Bonds recalls how former Alabama quarterback Kevin Turner, who has ALS, frequently talks about how they have not found a cure for ALS because of a lack of funding, and now both are hopeful that the $111 million raised as of Sept. 8 from the challenge changes that.
“Several researchers have told me that they are close to finding a cure in medicine, and this might send them over the edge,” Love said.
A group from Brookwood Baptist has organized a team called Bonds of Love for the Birmingham Walk to Defeat ALS on the morning of Oct. 11 at the Hoover Met. As of early September, more than 40 people had joined the team and raised $3,400, and they are hoping participation and fundraising will grow. For more information or to register or donate, visit alsa.org.
