On a wall in David Hemingway’s house in Martinez is row upon row of commendations from 24 years in the Air Force. On the opposite wall are a dozen performance awards from 13 years at the Central Intelligence Agency.
On the Air Force side sits a model of a Lockheed C-141B Starlifter, the kind he directed to fly cargo around the world; on the CIA side is a silver plaque with a silhouette of the same plane in flight under the words “Don’t Ask” and, above, a more explicit directive its cargo is none of your business.
Hemingway sits in the living room nearby directing a cursor on a computer screen with his eyes to painstakingly spell out words for a flat computer voice to say for him. That he worked the last of those nine years at the CIA while battling amyotrophic lateral sclerosis, a progressive disease that attacks motor neurons, is almost as remarkable as the fact it has been 13 years since he was diagnosed, a decade longer than he was told he would survive.
Patients like Hemingway often incur expenses no one will cover as they adapt to a relentless loss of function from ALS. The ALS Clinic at Augusta University tries to help with those expenses and services that aren’t covered. Those efforts will get a boost this week from a benefit concert from Bruce Hornsby and the Noisemakers on Thursday at Columbia County Amphitheater in Evans. The musician has been involved in raising funds to fight the disease after his assistant, Melissa Smith, contracted ALS and died from it in 2010, according to fan accounts.
“I listen to Bruce Hornsby and I like him. Hopefully, a lot of people like him,” joked Dr. Michael Rivner, director of the AU ALS Clinic. “Certainly, helping our clinic will help patients with ALS.”
The clinic serves as a “one-stop treatment for everything,” he said and patients not only see physicians, but other specialists like physical and occupational therapists who can help with muscle problems and difficulties performing everyday tasks. Studies have shown this multidisciplinary approach can help find problems early on and improve the quality of life for patients, Rivner said.
“Unfortunately, insurance doesn’t always pay for everything,” he said. “We can bring the therapists to our clinic to see the patients even if they don’t get reimbursed by insurance, so that allows us to do that and help get some equipment that patients need.”
Hemingway might be considered one of the more fortunate patients in terms of coverage. The Department of Veterans Affairs has provided him with a power wheelchair he can guide himself using pads strapped to his head, as well as a wheelchair-accessible van, an addition to make his home more accessible, and his computer, he said. Hemingway also had the foresight to take out longterm care insurance, which he think everyone should do.
“No matter how healthy a person is, you never know what the next day will bring,” he wrote in response to a series of questions. Even with those coverages, which provide about 14 hours a day of care for him, he still pays out of pocket for the rest of his 24-hour care at $15 to $20 an hour. But those adaptations provide him a remarkable degree of independence for someone in his condition. When he wants to travel, home health aide Kydashia Jackson said she really only has to help him get into and out of the van.
Hemingway, 62, said he was told at the time of diagnosis “to get my affairs in order, I would be dead in 3-5 years.” But after that shock wore off, he became more determined than ever to continue on.
“I decided I was not going to give up and was going to work as long as possible” at the CIA, he wrote, which lasted nine more years. “My co-workers would tape my hand to the computer mouse so I could work and communicate using the on-screen keyboard.” When he was finally forced to retire in 2013, he received a glowing tribute from Michael Ramsey, chief of logistics support for the CIA.
“He earned and deserved the title ‘go to person’” not only among those served by his service, but “at senior levels of the Agency,” Ramsey wrote.
Even Rivner is at a loss to explain Hemingway’s survival.
“He’s got a lot of spirit and that’s good,” Rivner said. Hemingway also is as sharp as he ever was and it is one of the frustrations he has that people don’t treat him that way.
“Just because I am in my power chair and cannot talk doesn’t mean I don’t understand what is going on,” Hemingway wrote. “I still have my mind. It is just trapped in a body that doesn’t work.” He wishes people would have more patience to allow him to respond in his way, which sometimes can be as simple as a nod or a grin.
A recent piece of good news got a big grin from Hemingway. The Food and Drug Administration last month approved the first new drug in 22 years to treat ALS. Called Radicava (edaravone), it has been in use in Japan and will likely become available in the U.S. sometime in August. Hemingway has an appointment in late July to talk to Rivner about it.
One other important thing the extra funding for the clinic provides is money for research, Rivner said. He and Dr. Lin Mei, chairman of the department of neuroscience and regenerative medicine at AU, have been focusing in on two proteins critically important for communication between neurons and muscles. Agrin, a protein released by the motor neuron, and LRP4, a protein needed to receive it, are important in forming the neuromuscular junction. In 13 percent of the clinic’s patients, there are antibodies that could be interfering with the work of those proteins, Rivner said. The researchers are still trying to figure out the significance of that, but early work like this almost has to be self-funded before seeking a grant, he said.
“You actually have to prove proof of concept,” Rivner said. “The funds we get have allowed us to make considerable progress in this regard. That’s really important.”
It might lead to new treatments and it might also help further explain the differences between ALS patients and potentially point to better ways to treat them, he said.
Hemingway, in his living room with his mother, Etta, listens carefully and nods while this research is being discussed. He smiles when asked if it gives him hope and then carefully types in an answer.
“It may be too late for me,” he said, “but I hope it will help others.”
Reach Tom Corwin at (706) 823-3213 or firstname.lastname@example.org