LAKE STEVENS, Wash. -- Last year at this time Rich Knapton of Lake Stevens was jogging six miles, four times a week. But his running days are over. Now he struggles to make it a few feet down his hallway with the aid of a walker.
"All the things that I love to do I can no longer do. It was just taken from me. All the plans I had were taken from me. (It’s a) tremendous loss; just tremendous loss," said Rich.
In September Rich was diagnosed with Lou Gehrig’s disease, which is also known as amyotrophic lateral sclerosis (ALS). It’s a progressive, untreatable, and fatal disease that destroys the nerve cells that control muscle function. Eventually a patient can't walk, talk or breathe, while the mind stays sharp.
The news was devastating.
"I cried. I cried a lot. Eventually you can't cry. You run out (of tears) and I realized this is how I'm going to die," said Rich. “And it won't affect my mind. I'll be trapped in a body that won't work, but a mind that is still working."
Rich doesn’t have the use of his right hand or leg anymore. His voice is raspy due to atrophy setting into the muscles of his mouth and throat. Moving takes great effort, which leaves Knapton easily exhausted. Most patients die between two and five years after diagnosis.
"I think about the suffering that he's going through and the time that I'm going to have to clean out his closet and put his clothes away. It's really hard," said Rich’s wife Rietje.
Rich is an Army veteran. He served in Vietnam in the late 60's and earned medals for heroism in combat. But that service has come with an enormous price. He was diagnosed with post traumatic stress disorder (PTSD) in the ‘90’s and now with ALS. Both diseases are due to his military service.
No one knows exactly why, but study after study supports the conclusion that people who have served in any branch of the military are twice as likely to develop ALS as those with no history of military service. The statistics are the same whether or not the person saw combat or not.
"A lot of my adult life was impacted by PTSD in the military. And now I'm going to die because of my military service. I think that sucks. That's no fair," said Rich.
In 2008 the government officially recognized there is definitely a connection between military service and ALS. Because of that determination, the Veteran’s Administration (VA) offers many benefits to these veterans. Medical equipment to assist with mobility is one important benefit. The Knaptons have received a manual wheelchair and a ramp to get in the front door, but so far, not much else.
“(It’s important to get) the right equipment at the right time so that I can have some kind of quality of life while I’m waiting to die,” said Rich.
Several items they need to keep Rich safe and able to maneuver around the house haven’t arrived. The KING reporters spent several hours with the Knaptons to see how they were coping.
To get to a standing position from a chair is an exhausting process because Rich doesn’t have a motorized wheelchair.
He sleeps in soaked diapers at night because catheter bags arrived, but so far, no catheter.
Maneuvering up or down the ten stairs in their home takes about 15 difficult minutes. Rich’s wife moves his legs for him and holds onto him to prevent a fall. There’s no motorized lift for the stairs.
They need a chair that slides Rich into the shower so he can bath safely. They’ve been waiting for that for two months.
And getting out of bed is a long, painful ordeal. Rietje uses a belt strapped around Rich’s waist to hoist him into a sitting position. Then they use a cane, a walker and system of counting to three together to try to get Rich to a standing position. He needs a hospital bed which should have arrived weeks ago.
"I may be dead in three months, so why is it taking so long?” said Rich.
Public Affairs officials at the VA wouldn’t consent to an interview with KING 5 but they did answer written questions. They said most items should take no more than six weeks.
“Stock items are provided immediately, special order items that require customization could be anywhere from 3 days to several weeks,” wrote Jeri Rowe, VA Puget Sound Health Care System Public Affairs Director .
When the reporters asked if the VA was experiencing difficulties expediting the delivery of needed supplies for ALS patients, they replied there were no hold ups.
“There are no delays in getting supplies or medical equipment to any home bound patient or nursing home based patients with any neurological disease. They should work with VBA (Veterans Benefits Administration) on any claims, grants, etc.,” wrote Rowe.
That doesn't make sense to the Knaptons. Neither does the miss-communication on their case. A VA caseworker asked the Knapton's how they liked the extra caregiver help to attend to Rich's basic needs. But no extra help had been authorized.
"There's no extra help. He said he ordered it. I sure could use the extra help," said Rietje. The same caseworker thought Rich's hospital bed was delivered weeks ago. "He (the caseworker) looked it up on the computer and it wasn't even ordered yet," said Rietje.
One roadblock for all veterans with ALS is the VA’s use of what's called a disability rating system. Sick veterans get benefits based on just how disabled they are determined to be. Big ticket items like a wheelchair accessible van are put on hold until the veteran's rating is 100% disabled.
"I said when we can start getting a van, because I’m stuck here. I can’t go anywhere. My life has shrunk to this room,” said Rich. “And he (VA employee) said it will take several months to have you classified as 100% with ALS. What other rating can you give someone with ALS except 100%? It's not like we have a little bit of ALS. We have ALS," said Rich.
On Monday Rich was notified that despite his difficulty mobilizing and his total dependence on a caregiver, the VA has his current ALS disability rating at 30%.
The disability rating process is cumbersome. It involves several trips to doctors and the filing of loads of paperwork. The ALS Association says there's no time for all that with this disease.
"In two months you can be completely disabled. By the time the paperwork processes through; two, three, even six months for paperwork, you can be looking at an entirely different level of disability," said Becky Moore, Executive Director of the Evergreen Chapter of the ALS Association.
The KING 5 Investigators have found that a year-and-a-half ago the VA proposed overhauling the rating process for ALS patients because some vets weren't getting services quickly enough. The proposal appeared on the Federal Register in June, 2010. It says ALS patients need a 100% disability rating as soon as they are diagnosed with the disease.
“The 100-percent rating would ensure that veterans with ALS are evaluated adequately and would eliminate any delay in reaching an appropriate level of compensation as their disease rapidly progresses,” wrote William F. Russo, Director of Regulations Management; Office of the General Counsel of the Department of Veterans Affairs.
A year-and-a-half later the old rating system is still in place.
The day after the KING reporters watched the Knaptons work so hard to get Rich down his staircase, help came to the door: a motorized lift. Now Rietje straps him into a chair and pushes one button. In a minute Rich is motored up or down the stairs. But this wasn't from the VA. The ALS Association donated the chair and the Knaptons paid $628 to have it installed.
"That's what the VA should be doing. But I can't wait on the VA," said Rich.
Two days before this story was scheduled to be published the Knaptons had an emergency. Rietje called 9-11 after she and Rich both fell to the floor. They were attempting to get to the bedroom after Rich’s shower, but he was too weak to remain upright. Without the sliding bathtub chair they’ve been waiting on for two months, the short shower exhausted Rich’s muscles. The firefighters who arrived in the aid car were able to lift Rich and get him to his bed. Rich and Rietje suffered scrapes and bruises, but no broken bones.
Earlier this month the KING 5 Investigators exposed how the VA failed a veteran from Tacoma, Barry Mangan, who also had ALS. Last June Mangan died alone in a VA nursing home while waiting on grant money from the Denver regional VA office. The money was to adapt his home which would have enabled him to live at home. Mangan passed away the very day the check arrived.
Since that story aired many disabled veterans have contacted KING 5. Some say they’re receiving supplies and equipment from the VA in a timely and efficient manner.