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"Life has given me a few lemons and I will not stop until the lemonade is made."
Bob Wolz definitely knows lemons.
After more than 20 years of service in the U.S. Army, Bob thought he had experienced the full range of physical discomfort, from the most serious to the most mundane. He was not prepared, though, for a diagnosis of multiple sclerosis (MS). "I had no idea what MS was about and had never heard of it," Bob said. "After the doctor told me that I had MS he left the room for a moment and I expected to find something on the wall with information. All I saw were posters that talked about how important it was to get prostate exams, the importance of a healthy diet, but nothing about MS."
Joining the U.S. Army in 1983 as a Chemical, Biological, Radiological, and Nuclear Specialist, Bob served two tours in Korea and Germany, as well as Operation Desert Shield/Desert Storm, Operation Iraqi Freedom and several stateside units. As a decontamination specialist with a chemical unit, he was in Kuwait when the Iraqi oil wells burned, turning the sky so black he couldn't tell whether it was night or day.
Initially experiencing muscle weakness and fatigue in the mid-1990s Bob adjusted his diet and physical training. "My diet was adjusted to help with digestion issues, and I was told that my unusual fatigue was due to insufficient physical training and lack of sleep," Bob said; he was told to exercise more! "Some time later, I started walking with a limp, and was told that I probably had a small stroke."
Bob continued his military service, including an Operation Iraqi Freedom deployment with the 4th Infantry Division where he started experiencing black-outs, extreme fatigue, and cognitive issues. He retired from the U.S. Army in February 2004.
His diagnosis was defined as service-connected by the Veterans Administration; his exposure to sarin and cyclosarin, two powerful chemical warfare agents, is considered to be a contributing factor towards his developing MS.
Once diagnosed with Relapsing-Remitting MS in the spring of 2006, Bob plunged into the world of consumer advocacy about a year later. It was being profiled in a local newspaper that spurred him to push for additional MS research funding, to help others with MS, and to continue educating himself about this disease. "I have learned that being an advocate is more than just a term, it is a lifestyle," Bob said. "Speaking for those who can't or won't speak, and walking for those who can't or won't walk, is a privilege and an honor." He addresses participants of local, regional and national organization events and has met with Congressional representatives and staffers.
Bob's advocacy efforts and his understanding of the significance of scientific research led the National MS Society to nominate him initially to participate as a consumer peer reviewer for MS research proposals submitted to the Peer Reviewed Medical Research Program (PRMRP). He has twice served with scientist and clinician reviewers on peer review panels evaluating the technical merit of MS projects; once each for the PRMRP and the Multiple Sclerosis Research Program.
"Words cannot describe the feeling of being a consumer reviewer," Bob said. "Initially, I was intimidated as I have no idea what a double blind mouse does nor have I ever discussed T-cells or antigens. Those intimidations were short-lived as the doctors and professors listened, asked clarifying questions, and were more than happy to work with and understand an actual person with MS and not a Petri dish or mouse."
Aware that MS contributes to memory problems, Bob writes notes to himself and has enrolled in Master's-level graduate courses to keep his mind focused and working, and is exploring the idea of pursuing a Ph.D.in education or training. "Just like other MS symptoms, cognitive problems are more pronounced in some while others never have an issue. I went back to college a year after my diagnosis of MS in an effort to exercise my brain so that I could fight off any further cognitive deterioration," Bob said. "It works for muscles, why not the brain?"
Through it all, he maintains a strong sense of humor, continues to educate people on all aspects of living with MS and saves time for family, especially time to play with his grandkids.
"I have been blessed with MS and love being a forward face of MS in the consumer role of the peer review process and as an advocate. There are so many things I enjoy and want to do. I want to see my kids and grandkids grow up, I want to fish and hunt more, I want to start a business, and I would like to win the lottery," Bob said. "I also want to be at the press conference when researchers announce that a cause or a cure for MS has been found."
Last updated Wednesday January 27 2016