An interview with Angela & Karl Robb from RobbWorks: Over 40 years Living Well with Parkinson’s and Still Learning on March 14, 2024 by George Ackerman, Ph.D, J.D.
Biography
Karl Robb has had Young Onset Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-six, he is a Parkinson’s disease advocate, entrepreneur, inventor, Reiki Master, and author of two books (A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit) with his wife and carepartner, Angela Robb. He has written for fifteen years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network.
Angela Robb is Karl’s wife of 26 years, co-editor at ASoftVoice.com, Community Team Member at ParkinsonsDisease.net, and a Reiki Master. Angela has advocated for caregiver issues by sharing her experiences at various regional and national Parkinson’s conferences, writing for the Every Victory Counts manual from the Davis Phinney Foundation, and presenting at the World Parkinson Congress. In 2015, Angela was honored at The White House as a Champion of Change in Parkinson’s Disease.
Please tell me a little about your background.
Karl: At the young age of 17 years old, I noticed a tremor in my left foot. Six years and nine doctors later, at the age of 23, I received the diagnosis of Parkinson’s disease (PD. While I was in high school and playing tennis for my school, did I notice a slight tremor in my left foot. I have been living with PD for over 40 years!
Angela: I met Karl in 1995 – four years after his diagnosis. We met online in an AOL chatroom. He told me about his diagnosis pretty early on in our conversations. I, like most people, thought PD only afflicted older people. We’ve been married for 27 years.
Can you tell me more about your advocacy?
Karl: I have had Parkinson’s disease for over forty years and for almost the entire time, I have been involved in the PD community. I wrote for PD newsletters, Parkinson Disease.net, guess blogged on numerous health sites, written for advocated for PD on Capitol Hill for over 20 years, wrote 2 books with my wife, Angela, and developed a multi-award-winning website of PD information for 16 years that is full of great interviews and resources. I continue to write, blog, photograph, and interview.
Angela: My advocacy began when I met Karl. Initially it was advocating for him when we were out in public. After we got married, we became an advocacy team (trained by the Parkinson’s Action Network (PAN)). We visited our representatives annually to share our stories, advocate for PD, and carepartner issues.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Karl: When I was diagnosed, at age 23, there was no Internet and access to PD was hard to find. Young-Onset Parkinson’s Disease (YOPD) information was even more difficult to locate. I wanted to develop the website that I wished I could have had back then. I love interviewing interesting people and growing our website, KarlRobb.com, with Angela!
Angela: My passion is to help educate people about Parkinson’s, spread hope about living well with the condition; both for the person with Parkinson’s and the carepartner/caregiver, and raise awareness about the needs and resources of our PD community.
What type of goals do individuals with Parkinson’s have when working with you?
Karl: I have met thousands of people with PD over my 40 plus year PD career. We all deal with Parkinson’s disease in our own way and our own time.
Angela: In my conversations with carepartners, I first try to offer them support by listening to their concerns. Secondly, I try to reassure them that there is support and resources available to them to take care of themselves.
What type of training and how long are the programs?
Karl: I have found benefits with Rock Steady Boxing (RSB), Walking, Meditation, Reiki, Physical Therapy, Reflexology, SPEAKOUT!, Stretching, Vegetarianism, and Optimism.
Angela: My selfcare regimen includes working out at a local women’s only gym, RSB workouts as Karl’s focus mitts partner, and walking the dog with Karl. As Karl mentioned in his answer, I’m also a Reiki practitioner, practice meditation, receive massage and reflexology sessions regularly, and have scheduled routine medical exams.
What effect can your advocacy have on an individual with Parkinson’s?
Karl: Advocacy can ignite a passion and a purpose. I have seen people interested in advocacy rise to be leaders and speakers. Advocacy empowers you and others to get involved.
Angela: I agree with Karl’s answers. It is very empowering to share your personal story and be heard by your family, friends, community members, political representatives, medical professionals, and so many more. Advocacy can spark acceptance and change!
What would you like to see as a future goal for your advocacy?
Karl: There is too much to be done for just one goal. I would like to see unification and information sharing amongst the many groups and foundations trying to make a difference in PD.
Angela: I want to continue to empower carepartners to share their story so they can receive the help and support they need.
What events do you participate in?
Karl: I have participated in numerous conferences, group meetings, events, and been to 4 WPC events around the USA and the world.
Angela: Since Karl and I are a team, I attend events with Karl. We participate in local and regional events as much as we can. We are sometimes presenters or panelists at these events.
How does your advocacy also assist the caregivers?
Karl: Angela and I advocate together and separately. Together advocacy even builds our bond to be stronger. I hope that by sharing my journey as well as my observations, I can shed a little light on just what it is to have PD! Educating the world about PD is so urgent and needed!
Angela: Yes, although much of my advocacy is focused on the carepartner, I think many of the things Karl and I say really apply to anyone, in any role, living and coping with daily life.
How can someone get in touch? What is your website?
Our website is www.ASoftVoice.com or www.KarlRobb.com. We also have a YouTube channel @karlrobbcreates where we host our conversation series and other playlists of inspiring and informative videos we like. We are also on Instagram: @Robbworks and @AngelaRobbVA.
How can others also become advocates for awareness?
Karl: Start by joining PDAvengers.com to get involved. Make a difference in your local community and start slowly.
Angela: I agree with Karl, PD Avengers is a great place to start. I also recommend getting involved locally either with a support group, exercise program, or local PD non-profit organization. You will also find advocacy resources and groups with Parkinson Voice Project, Davis Phinney Foundation, Young Onset Parkinson Network, Brian Grant Foundation, Parkinson Foundation, and APDA. There are many regional Parkinson’s organizations who are excellent resources as well.
If you could add any questions to this interview that you may want others to learn about, what would the question(s) be?
Karl: What have you found in your 40 years have you learned that helps your PD the most? Stress reduction, Reiki, Exercise, Rock Steady Boxing, and staying social are just a few pieces of my toolkit. Reducing stress improves symptoms of PD.
Angela: How do you, as a carepartner, cope with the daily challenges of living with Parkinson’s?
I work hard in trying to be in the moment with Karl. Our communication with each other is vitally important to me coping with PD and helping him to live well with PD. I’m also keenly aware of how important it is for both of us to take care of ourselves, and each other!
In your opinion, what is the key to effective advocacy?
Karl: Telling your story in an honest and compelling way to anyone who will listen!
Angela: I agree with Karl’s point and will add that you should not hold back the details. Being detailed in your story helps the listener to understand and provides a basis for a better response.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Karl: Don’t panic! Find the balance in your life and do something for your mind, your body, and your spirit, everyday!
Angela: Communicate with your partner about what you need. Work together to find a life plan that you both can live and thrive!