At the age of 17, what Karl Robb thought was just a twitch in his left foot, was a
harbinger of Parkinson’s disease. A final diagnosis took him six years, and
just as many doctors. It was not until his balance deteriorated, posture became poor, gait shuffled, and speech slurred, that he received a diagnosis. Karl was just 23 years old, and was certain that he had an undiagnosed brain tumor. He was prepared for the worst, so when he received a diagnosis of Parkinson’s disease (PD), Karl vowed to educate himself and learn to live with the illness.
Karl is now 45 years old – over 25 years since his first symptom. He reports that fortunately, Sinemet still works well for him. Karl just celebrated his 15th wedding anniversary with his best friend and wife, Angela.
Karl and Angela serve as Virginia Co-State Directors for the Parkinson’s Action Network (PAN). In this role, Karl hopes to educate, inform, and motivate Virginians to see that they can have an impact on how important government money is being used for Parkinson’s disease and neurological research.
Karl joined PAN and attended the first PAN Forum in 1994. He initially became involved to educate other Parkinson’s patients, and help them to feel empowered by joining PAN’s efforts to help educate the public about PD.
By becoming involved, Karl has not only made a contribution to PD causes, but has also made many close friends. He believes that if you want change, you have to be an advocate to make that change. “You have to stand up and be heard to make changes, or at least try,” he says.
Karl offers these tips for those who may be interested in advocacy but are not sure how to get started:
- Learn what the mission of the advocacy group is, and if it meets your passion, run with it
- If you want to become involved with PAN, start by becoming an e-advocate
o As an e-advocate, you will receive, “Action Alerts”, emails that will keep you informed about the issues related to PD.
- Be willing to share your story – this is the most valuable tool in being heard by your community, your Local and Sate representatives, and your representatives on Capitol Hill. Sharing the impact that llness has on your life can be very powerful. I think the more you can get your government official to identify with you, the more impact you have,” he says.
When asked about the hopes he has for the future in PD research, treatments and
care, Karl says “I personally think that researchers in PD need to try looking
at PD from a more holistic viewpoint. Having met so many people after so many
years with PD, I have seen a pattern in people with PD. I am convinced that
reducing stress, improving diet/nutrition, and making changes in your thinking
and lifestyle can play a huge role in slowing the progression of, or even reversing
the effects of PD. I think that research for neurological disorders, like PD,
is so important. To improve patient care and those dealing with neurological
diseases, breakthrough discoveries are our greatest hope.”
Karl and Angela run a nine year old PD support group in Fairfax, VA. In 2008, they were awarded the Murray Charters Award for outstanding service to the PD community. In 2009, Karl joined the Board of Directors of the Parkinson’s Action Network (PAN). Karl has been active in PAN since the organization’s inception.
The Robbs have their own business, TrueTip, LLC. Karl invents stylus products for
touch screens and handheld computers, smartphones, and touch screens. He holds seven US patents and one Japanese patent.
Karl is a Reiki Master and has practiced Reiki for 13 years. After starting Reiki, both he and his neurologist have seen a reduction in his symptoms. He credits Reiki for a large part of his increase in health.
Karl is finishing a book of his writings, continues to invent, and writes a blog on PD issues at www.asoftvoice.com. Karl is a frequent, lecturer on PD issues, an avid photographer, writer and enjoys staying active in the PD community.
Karl received his B.A.in English from the University of North Carolina at Chapel Hill. He lives with his wife, Angela, his Chocolate Lab, Lily, and fat cat, Shadow, near Washington, DC.
Karl can be reached by email at Karl@KarlRobb.com.
Learn more about Parkinson’s Action Network.
Profiles is a new, monthly story featuring an individual with a movement disorder who is making an impact in the community to improve the quality of life, advance research, or raise awareness about movement disorders. Please contact us with any nominations.