We’ll be featuring three Team of Advisors introductions on the blog this month, and first up is Charles, a veteran Army Ranger who is also living with MS. Below, Charles shared about his military background, his thoughts on patient centeredness and how he’s found his second family in the Team of Advisors.
About Charles (aka CharlesD):
Charles has a diverse background. He served three years in the US Army 75th Ranger Regiment parachuting from the back of C-130 and C-141 aircraft. He built audio/video/computer systems for Bloomberg Business News. He worked as an application systems engineer in banking, as a computer engineer at the White House Executive Office of the President (EOP), and as a principal systems engineer for the US Navy Submarine Launched Ballistic Missiles (SLBM) program. He is currently a contractor providing document imaging Subject Matter Expertise (SME) to the IRS. Charles was diagnosed with MS in July of 2013. MS runs in his family on his mother’s Irish side – he has one uncle and two male cousins with MS.
Charles on patient centeredness:
With experience in website design, Charles believes patient centeredness is a lot like user centeredness when designing a web site or a portal: “Information is organized according to the patient (or the user’s) view of the world. Questions that the patient most needs answered are listed front and center. The design is based on addressing the needs of the patients (users). Info is organized cleanly and logically with possible visual impairments, color perception problems, and cognitive issues of patients (users) always in mind. Research should focus on areas that will make the most difference to the patients. Ask them. Survey them. Get to know the ‘voice of the patient’ just like we look to capture the ‘voice of the customer’ in user-centric design.”
Charles’ military background:
“I joined the US Army in 1986. I did basic training and AIT at Fort Jackson, SC. After that I was off to 3 weeks of jump school at Fort Benning, GA. Then I went to the Ranger Indoctrination Program (RIP) again at Benning. I was then assigned to HHC 75th Ranger Regiment.
I spent 3 years with the 75th training for a lot of pretty cool missions. We trained a lot for airfield seizures. Basically parachute onto a foreign airport or airfield, wipe out all resistance, take the tower, and make way for our big planes to land shortly after. We had early generation night vision goggles (NVGs). I drove a Hummer full of Rangers off the back tail ramp of a pitch black C-130 that was still rolling after touchdown while wearing NVGs. They were no help at all inside the plane since they only amplify existing light. If you are pitch black you are still blind. It is a wonder that I did not kill anyone or damage the C-130 that night.
So I joined up right after Grenada and I got out right before Panama. I never saw any combat. These days I volunteer my time with, and financially support, a veterans group called gallantfew (www.gallantfew.org), started by retired Ranger Major Karl Monger.”
Charles on being part of the Team of Advisors:
“Being on the PatientsLikeMe Team of Advisors has been a wonderful privilege and an excellent opportunity for me. As a person with a brain disease, it is not always comfortable talking with others about my illness. When the Team of Advisors first met up together in Boston, I knew that I had found my second family. I was together in a room where every single person there was struggling with one or more diseases, many of which can be fatal. In fact, one of our team members, Brian, died after serving for only a few months. It was such a warm and welcoming environment. All of us were able to speak openly with each other and with PatientsLikeMe staff and we were heard. Each story, no matter how painful, resonated with the whole group.
All of us in the first PatientsLikeMe Team of Advisors shared many of the same goals. We are an extremely diverse group, but we all bonded immediately. What we want is to help conquer the diseases that have caused problems in all of our lives. We want to improve the relationship between researchers and the patient community. We want to help health care providers to better understand the patient perspective. And we want to make the world a better place for the next generation and for all generations to come. PatientsLikeMe embraces those goals and we embrace PatientsLikeMe. Together we are taking on all diseases.”
Charles on healthcare for veterans:
“As a veteran, health care issues are very important to me. I have seen so many veterans return home with wounds to body and mind. Many are shattered and have no idea what to do with themselves next. Some turn to drugs and alcohol, others to fast motorcycles or weapons. Suicide is rampant among newly returned veterans. The VA is woefully underfunded to take on the mission of supporting wounded and traumatized veterans. In the halls of Congress, the VA is seen as a liability, an unfunded mandate. Many veterans are denied the coverage they so desperately need. Many active duty service members are forced out with other than honorable discharges for suffering from PTSD or TBI. This limits the liability of the VA to support the veteran after separation. A good friend of mine who died recently put it this way. He said to me, ‘The military operates on the beer can theory of human resources. Picture a couple of good old boys out for a good time. They go down to the local liquor store and grab a nice cold six pack of beer. They go down to the lake, they each pop the top and they each start chugging a wonderful ice-cold beer. When they get through the first beer, they crush the can and throw it away. They grab another and another until the beers are all gone.’
I didn’t understand how this related to the military. He explained, ‘The brand new ice-cold beer is like a new recruit. The military sucks everything they can out of the person until all that is left is the empty shell. Then they toss that out and go grab another one just like the last one.’
We don’t deserve a health care system that treats returning veterans as empty shells. We can do better, but the current system is clear reflection of the value system at play in Congress. Funding for weapons programs are highly protected. Funding for the people who wielded those weapons systems is not. My answer may seem a bit cynical, but that is how I see the current state of affairs.”
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