LAKE STEVENS, Wash. - No one knows exactly why, but serving in the military can actually cause the progressive, fatal disease of ALS. Those who’ve served in any branch of the military are twice as likely to contract ALS as those with no military service.
Last year the KING 5 Investigators exposed how the Veteran's Administration (VA) was failing some vets with ALS by being slow to get them benefits such as pieces of medical equipment and grant money to adapt their homes for wheelchairs. Since those stories aired the VA has made a major rule change. Beginning January 19th, benefits should arrive much sooner.
Rich Knapton of Lake Stevens is a decorated Viet Nam veteran diagnosed with the disease who waited for months for items to help him get through his days, such as a hospital bed. And with ALS there's no time to waste. Rich's disease is progressing quickly. When KING reporters first met Knapton in November he was able to slowly walk with the aid of a walker. Now he’s lost his ability to walk at all. He’s lost mobility in his arm that still functions, which means he often needs help to eat. It’s getting harder to press the keys on his computer. And his throat muscles are weaker which causes him to choke on food.
“My legs don't work anymore. I’m a bit more depressed. I’ve grown weaker, and that’s frustrating,” said Knapton. “So you sit around and you wait, and you get weaker.”
That is the reality of ALS. It progressively destroys the cells that control muscle function. Eventually patients can't walk, talk or breathe. Just a year-and-a-half ago Knapton was jogging six miles, four times a week.
“It’s devastating to watch someone deteriorate. It's hard, very hard," said Knapton’s wife, Rietje Knapton.
KING 5 first interviewed the Knaptons as part of series on veterans with ALS who were having problems getting badly needed benefits from the Veteran's Administration (VA).
They’d been waiting for months for a motorized wheelchair and a hospital bed the VA promised were on the way.
"I may be dead in three months, so why is it taking so long?" said Rich Knapton in November.
Since that story aired the VA has stepped up. They delivered the wheelchair and the hospital bed. KING 5 viewers responded as well.
"Your viewers were wonderful. They just opened up their hearts and sent us cards or money or offers of beds and things like that. There are a lot of nice people out there." said Rich Knapton.
One hold-up for many veterans with ALS is the VA’s use of what's called a Schedule for Rating Disabilities; a disability rating system. Benefits are approved based on how disabled VA doctors consider the patient to be. A rating of 100% disabled is needed for expensive items like a wheelchair accessible van and grant money for home adaptations, such as the installation of a shower to accommodate a wheelchair.
In November the KING 5 Investigators aired a story about another veteran with ALS, Barry Mangan of Tacoma. Mangan died waiting for his benefits. For months he wasn't considered disabled enough to qualify for the money to adapt his home. Without the adaptations he couldn’t live at home with his family. He died alone in a VA nursing home.
"I was so upset that we couldn't get him home. That he could not die with his loved ones at his bedside," said his widow Debby Mangan.
That shouldn't happen again. The VA will now rate veterans with ALS 100 percent disabled upon the diagnosis. The change means veterans won’t have to be constantly re-evaluated to determine a rating and benefits should arrive much faster.
"We’re thrilled as an association,” said Kathy Holt, Board President of the ALS Association, Evergreen Chapter.
“Every vet will now not have to fight to get that additional compensation, will not have to go back and be re-evaluated and will not be constantly trying to catch up with the system," said Holt.
The automatic 100% disability rating doesn't necessarily mean all the wait times are over. Currently the Knaptons are waiting for a wheelchair accessible van and grant money to adapt their bathroom to make a shower that will accomodate Rich's wheelchair. It could be several months before those things arrive.
"It's such a devastating blow to be told you have ALS, and then to have them (the VA) drag their feet, so this is great. This will help," said Rich Knapton.
Since the KING reporters visited the Knaptons on January 5th, Rich's health has declined. He's been admitted to the hospital with breathing problems; a common ailment for those with ALS because of the deterioration of the diaphragm and other respiratory muscles.