Terry Nickerson likes to quote American pop singer Frankie Laine’s version of “You Gave Me a Mountain,” from 1969. The song ends:
So this time, Lord, you gave me a mountain
A mountain I may never climb
And it isn’t a hill any longer
You gave me a mountain this time
But Nickerson is determined to climb it.
He started facing hills at a very young age. He was born with cerebral palsy, which causes the loss of function in various parts of the body. In Nickerson’s case, it was the right side of his body that was affected.
As a child, he underwent surgery on his right arm and leg to try and improve his mobility. He also went to therapy once a week and had to wear a brace to sleep.
“My mother always told me, ‘You can sit here feeling sorry for yourself, or you can accept it and move on,’” he says. “So I chose to move on. I chose to climb that hill.”
In fact, Nickerson didn’t let his condition affect him at all. “In school I still played all types of sports and had a bunch of friends.” He even recalls being one of the best players on his high school baseball team. Whatever he lacked physically, “I made up for in personality,” he says. “I was always the class clown!”
While living with cerebral palsy, Nickerson led an otherwise healthy life well into adulthood.
But in 2008, he faced another hill. On a boat trip with some friends in Monticello, IN, Nickerson fell from the boat against the pier and suffered torn ligaments in his left arm and leg.
After surgery to repair the damage, his recovery required nine months of therapy. Because of his lifelong limited mobility on his right side, and now compromised mobility on the left, he had to rely on his wife Joann to help him with basic tasks.
“It was a tough nine months for both of us,” he says, but he made a full recovery.
About that same time, however, he met with what he considers his biggest challenge yet: “I was diagnosed with Alpha-1 Antitrypsin Deficiency. This time, God gave me a mountain.”
At the time, Nickerson was working in construction in his hometown of Rolling Prairie, IN. He started getting short of breath after simply walking down the block or especially, uphill. Nickerson met with his family doctor. He was diagnosed with asthma and emphysema, and prescribed inhalers and other medicines. But he felt no improvement.
“As God would have it,” one day on vacation in Arizona, Nickerson and his wife met Pam Piar, a woman who worked at the Cleveland Clinic, one of the Alpha-1 Foundation’s Clinical Resource Centers. “We got to talking and I told her about my breathing problems, and she was nice enough to get me an appointment at the clinic,” says Nickerson.
A week later, Nickerson met with James Stoller, MD, an Alpha-1 lung specialist and director of the Foundation’s Clinical Resource Center at Cleveland Clinic. Nickerson said he had never smoked, but somehow developed emphysema.
“He did a blood test and within a few days I found out I had a condition I had never heard of,” says Nickerson. Stoller explained he was lucky to have been diagnosed at all. “He told me if I hadn’t found out I had Alpha-1 then, I probably would have only lived another three years. Still, it was devastating.”
Stoller recommended he immediately start augmentation therapy to help slow loss of lung function.
“My insurance at the time did not cover the treatment. We had a family meeting to tell my kids and family about it. I had decided I was just going to ride it out and manage without it. Of course they didn’t let me do that, and as a family we came together and made it happen.”
Since then, Nickerson has gotten medical coverage for his treatment and gets infusions every week.
“The most important thing is to raise awareness,” he says. “When I told my family doctor, he had no idea what Alpha-1 was. Nobody did.”
It has been eight years since his diagnosis. Today, he stays involved in the Alpha-1 community and travels whenever he can to education days, support group meetings and the annual National Alpha-1 Education Conference.
He and Joann have also coordinated many fundraisers at local restaurants for the Alpha-1 Foundation’s research programs.
Last October Nickerson and Tom Corron, another Indiana Alpha who is a member of the Foundation Board, coordinated the River Walk for a Cure in Mishawaka, IN. The walk, part of the Foundation’s Building Friends for a Cure program, had over 150 participants and raised over $14,000. Nickerson hopes the next walk, coming up on Oct. 4, will reach their $15,000 goal. Get information about participating or donate HERE.
“Terry’s passion is infectious — after talking to him, you just want to do everything possible to make his walk the best ever,” says Angela McBride, the Foundation’s director of community engagement and development. “He and his family are true hikers, and we’re all climbing this mountain together.”
The Nickersons have a son, Troy, a daughter, Tonya, and four grandchildren. “We like to keep busy and visit the kids whenever we can,” Nickerson says.
“It has definitely been one trial after another. But this last mountain is not going to stop me,” he says. “I’m going to make sure I climb it.”