“I tell the newly diagnosed to reach out to PVA to have them help them process [their paperwork] through the VA. If you don’t, it just takes so long and some Veterans don’t have that long.”
————————–
Roger joined the U.S. Marine Corps straight out of high school. It was always his dream to serve his country and see the world. Between active duty and reserve, he served for 28 years, starting out as a field radio operator and finishing at the Marine Forces Cyberspace Command.
His time in the military ended when he was medically retired after being diagnosed with ALS. His bicep was tensing up in the night as he tried to sleep, prompting a physician to send him to a neurologist at Walter Reed. That is where he ultimately received his diagnosis – though doctors took their time giving it to him, trying to rule out everything else first. Roger was persistent.
“I think it helped that I was a master gunnery sergeant and I didn’t take no for an answer. [I told the doctor], ‘I’ve been dealing with death since I was 19 years old. I’ve taken Marines to combat four times. I don’t like to be dragged along. I’d rather know what I’m dealing with than not know.’”
While attending a National ALS convention in D.C. just after his discharge, Roger met other Veterans who told him about PVA, and he connected with PVA staff who got his VA paperwork processed within three days. He also became a member of the Mid-Atlantic chapter and is an active ALS advocate with various organizations.
“There’s so much help that a Veteran gets from PVA – whether it’s getting them services at the VA; getting their cases looked at; helping them when they are in need of a wheelchair; learning how to adapt being in that wheelchair; or getting them in contact with other people that have gone what they’re going through now.”
Now eight years into his diagnosis, Roger acknowledges that he is beating the usual odds. “I was supposed to die. 80% [of those diagnosed] die within 2-5 years.” He understands the emotional toll on his wife and two children, but is committed to removing stress from his life, while maintaining a positive mental attitude and possessing a strong belief in God.
And, he is engaged with every aspect of his disease and is on a mission to gain knowledge and make things easier for himself, his family, his fellow Veterans, and the ALS community as a whole.
“I went numerous times to talk with my representatives about increasing the amount of money for the Congressionally Directed Medical Research Programs (CDRMP) funding. It’s up to $40,000,000 now and we want it to keep on going up to more. No drug cures [ALS], but more money has been put into research, and eventually we’re going to find a cure and we’re going to find out what causes it; but it’s going to take time.”
Roger’s outreach has helped him connect with other Veterans with ALS, giving them an opportunity to share experiences and advice, even if their physical journeys are not exactly the same.
“I just like to help because I’m retired. When I was diagnosed with ALS, there was so much out there on the internet, but most of it was false. I got in contact with other Veterans that already went through what I was going through. It helped out. They can’t say exactly what’s going to happen to me, but they can say what they went through and how they dealt with it.”
Roger is still able to walk and talk and “do most of the things I want to do,” but he knows his disease will eventually progress further, prompting him to prepare for the future. He’s already had his home adapted so that when he is in a wheelchair full time, he will be able to live there comfortably.
But financially, ALS takes a huge toll. New medications alone can cost upwards of $150,000 a year, and a patient won’t know if the treatments work until they try them. And that is just part of it. “We call it the broke disease because most people go broke taking care of it. If you’re married, you progress and can’t take care of yourself, so your spouse has to give up their job to take care of you. Then there is no money coming in, but you still have all these bills. Once you go on a ventilator and trach, and you have to do a feeding tube, so much expenses, but no income coming in. It’s devastating.”
Roger wants everyone with an ALS diagnosis to take an individualized approach and do what is right for them. “Everybody is progressing differently. Try everything for yourself. Don’t listen to anybody saying, ‘This doesn’t work or this doesn’t work.’ If it didn’t work for them doesn’t mean it’s not going to work for you.”
He has found that, “There are so many brave people fighting ALS.”
And it’s clear that Roger is one of them.