Daily life with an ALS diagnosis in the family is nothing short of challenging, but “a little bit of sunshine can go a long way,” says Bobbie Wesley, whose husband, Glen, was diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, in 2010.
A long career in the military leads to an active retirement.
Glen’s military career dates back to 1967, when he entered officer training school after graduating college. Glen retired from the Air Force in 1980, after 22 years of service running officers clubs and supervising quality-of-life programs for service members and their families.
After retirement, Glen went into private club management and became the general manager of a country club in Louisiana for six years, after which he officially retired “so he could play in the back yard,” Bobbie says.
ALS diagnosis leaves everything up-in-the-air
Glen retreated to the backyard to build furniture and eventually learned blacksmith and ornamental iron work. But over time, he started to notice weakness in his hand when he used his hammer. The doctors initially diagnosed him with carpal tunnel syndrome, but when treatment for that was unresponsive, the doctors ordered additional testing, Bobbie says.
My biggest job now is to fight the disease and do all I can to make it easy on Bobbie and also the family. In other words, don’t be cranky.
After being evaluated by several neurologists, Glen was diagnosed with ALS in February 2010. At the time, he still maintained his independence, but he gradually lost the ability to walk and use his hands, Bobbie says.
Paralyzed Veterans of America helps nevigate benefits
It was not long after the diagnosis that Glen and Bobbie learned that ALS is a service-connected disease and were immediately put in touch with Paralyzed Veterans of America in Houston, Texas, to help them navigate the process for obtaining benefits.
“At first, we drug our feet because we didn’t think we needed anything,” Bobbie says. “But Paralyzed Veterans has been wonderful, and we’re grateful that they were so tenacious with us because the reality is, without the assistance from Paralyzed Veterans or the VA, this disease can wipe your life savings out in a heart beat.”
Paralyzed Veterans has been wonderful. - Bobbie Wesley
The VA has provided the family with a van that has been retrofitted for Glen’s needs, and the neighbors have helped the family install ramps into the house. Glen also is working with his daughter to record more than 1,600 phrases on a VA-provided computer, so that, should he lose his voice, he is still able to communicate with a synthetic voice that is close to his speaking pattern, Bobbie says.
A positive outlook, strong faith and a can-do attitude
But despite those tools, Bobbie touts a positive attitude, a vibrant social life and a strong Christian faith as the best medicine for both of them in approaching Glen’s disease. Glen goes outside every day to enjoy the sunshine and admire the birds in their birdhouses on the property, Bobbie says.
“Glen has not experienced anxiety and depression or refused to get out of the house,” Bobbie says. “We’ve always been social people, and we’re in church every Sunday. That’s part of what I admire about him; he’s not going to sit in the house and whine, and I think that’s one of the reasons he’s doing so well with this disease because he has such a positive, can-do attitude.”
Glen and Bobbie also remain active in support groups, including a monthly "ALS Cares" meeting. Bobbie also attends a monthly caregivers meeting where she says caregivers “learn a lot from each other.”
The family also relies on their three daughters and five grandchildren, as well as neighbors whom they address as “saints,” for smiles and support, Bobbie says.
Getting the most out of the present is the key
“I want to keep our lives as normal as possible for as long as I can,” Bobbie says. “I want to do everything I can to make sure we’re getting the most out of the present time as we can.”
And despite having more difficulty breathing and speaking, Glen maintains a positive attitude and a sense of humor. “My biggest job now is to fight the disease and do all I can to make it easy on Bobbie and also the family,” Glen says. “In other words, don’t be cranky.”