My ALS Story: Clarence Jenkins

Paralyzed Veterans of America member Clarence JenkinsAs director of direct marketing at Paralyzed Veterans of America, Cathy Jenkins has a strong dedication to serve our nation’s disabled veterans. But that role really hit home eight years ago, when Cathy’s father was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

“We didn’t really know what to expect,” Cathy says of the ALS diagnosis of her father, Clarence Jenkins. “It was definitely one of the scariest diagnoses you could ever expect. As we read more about it, we wondered how we were going to get through it.”

Clarence, who enlisted in the Air Force during the Korean War and served four years, began having problems with his speech in his early 70s, Cathy says. After receiving a couple of incorrect diagnoses from doctors, Cathy saw an article about a voice clinic at George Washington Hospital Center in Washington, DC. In 2005, the center’s chief of neurology diagnosed Clarence with ALS.

Cathy says her family and her father have been fortunate thus far as his disease has progressed relatively slowly when compared with other ALS patients, who often have a lifespan of just three to five years following their diagnosis. Clarence was using a walker up until two years ago, when other health issues forced him to use a wheelchair; he’s also able to feed himself, Cathy says.

“We’re very fortunate that he’s not on a ventilator or a feeding tube,” she says. “That’s a big triumph.”

The Veterans Administration did not consider ALS a service-connected disease until 2008, so Cathy says her family struggled with the potential financial obligations during the early years of her dad’s diagnosis. But by 2008, Paralyzed Veterans immediately helped the family file the paperwork and receive the compensation and benefits they were entitled to, including an adaptive housing grant to modify her father’s home.

But despite being grateful for the benefits, and what Cathy perceives as strong effort on the part of the VA, the process takes a long time. “It’s a very long process, and most people don’t have a lot of time with ALS,” she says. “The most important part is caring for their daily needs, and every day, that can be different.”

Cathy says the biggest struggle for their family is simply communicating with Clarence and ensuring that he’s getting what he wants and needs. Amazingly, Cathy’s two children, ages five and two, are able to communicate with their grandfather in ways the adults can’t.

“The kids are much better at communicating than we are,” she says. “He tries hard to communicate with them, and they seem to pick up on what he’s trying to tell them even better than we do.”

As a daughter of a veteran with ALS, Cathy says her greatest role is simply helping her mother, Irene, serve as the main caregiver for her dad. That equates to doing things like cleaning the house, grocery shopping or responding to late-night calls for help, Cathy says. “My mom is doing 99.9 percent of the work, so my role is to help support my mom and make sure that she has all she needs in helping dad,” she says.

But in spite of the daily challenges that ALS has brought to Cathy’s family, she remains grateful that her father’s ALS has progressed slowly, and that the family has received the benefits needed from the VA to manage the disease.

“I feel for the families who do not have those benefits, as the only thing you can do at that time is provide financial help,” she says. “There’s no cure, and it’s especially hard for people whose health care won’t pay for it.”

Read about more Paralyzed Veterans of America members with ALS 

Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com. 

 

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