We welcomed three guest speakers to our first 2019 meeting on January 2, a dynamic trio of Parkinson’s activists working to make a difference in our community.
His keen sense of humor as evident as his initial dyskinesia, Karl Robb introduced himself by saying he was still in denial about his Parkinson’s diagnosis at age 23. He’s now 52. He started his blog in 2008, which he joked had about five readers (www.asoftvoice.com), and led to his book in 2012, A Soft Voice in a Noisy World. Based on feedback from readers, he and Angela, his wife of 22 years, published a workbook of exercises in 2016, Dealing and Healing with Parkinson’s Disease and Other Health Conditions.
Displaying the same quick wit as her husband, Angela Robb introduced herself as Karl’s driver. They met online in 1995 and were married in 1996. About a year ago, they both noticed and became concerned about his decline. They met Alec at one of Sonia’s Parkinson Social Cafes. Alec offers Rock Steady Boxing and Karl started participating in December 2017, initially two days per week, then three days when Alec expanded the program.
Boxing is not just about punching things repeatedly; it’s about reaction time and conditioning, engaging mind and body, and staying focused. Angela said it took a while to get Karl’s meds right so he’d be ‘on’ for the whole boxing session, but they both noted a miraculous change in Karl from the boxing. He moves better, his balance has improved, he’s physically and mentally stronger than a year ago, his stamina has increased, and his ‘on’ times have gotten longer. They agreed that the classes are costly and there are a few free boxing programs around, but Karl said, “You do get what you pay for.” In addition to exercising together, the participants offer each other support and encouragement, inside and outside of the boxing sessions. (See https://rocksteadynova.com for more information; Karl goes to Tyson’s; there is also a program in Ashburn)
Parkinson’s is a full-time job and requires you to work on all aspects of Mind, Body and Spirit, according to Karl, adding that 60% of Parkinson’s is stress—if you can manage stress, Parkinson’s gets better. That’s why Reiki, yoga, meditation, tai chi, prayer, quiet time, listening to music, reading—whatever lowers your stress level—improves your Parkinson’s. Angela concurs about taking time to care for yourself, and that includes caregivers.
In response to questions about relationships and how they can change when one partner is diagnosed with Parkinson’s, Angela said their situation is different because Parkinson’s was in the relationship from the beginning. “We’re a partnership, Parkinson’s and all,” she said. “Even though I may do more than some wives. That’s the nature of Parkinson’s.”
Along these communication lines, they’ve created Tools in the Toolbox:
- Cuing, a set of non-verbal cues (such as foot movements) Karl can send her when he needs assistance in public (for activities like walking through doorways and moving through crowds).
- Patience, incredibly important with Parkinson’s.
- Timing of meds, food, and activities. Know where you are with each and stay aware of each throughout your day.
- Flexibility:Everyone’s Parkinson’s is different and unique, and it changes every five minutes. Be a flexible stick in the wind.
Karl says one of the best pieces of advice he was ever given was from Dr. Sigmund (a movement disorder specialist who is now retired): “You’ve got Parkinson’s. Don’t go on an escalator.” Angela noted that oftentimes, especially at airports, you are 40 steps to the escalator and 400 steps to the elevator. Members of our group agreed, some opting for wheelchair service when they fly, others for early boarding. Karl said he sometimes takes a walking stick with him, but doesn’t reserve a wheelchair as he’s only willing to give up so much independence. Angela has been known to confiscate (steal) an empty wheelchair or even push Karl atop a baggage cart in emergency ‘off’ situations at airports.
Sonia Gow does not have Parkinson’s and doesn’t have any family members with the disease. But she crossed paths with two people with Parkinson’s who took a chance on her, which shaped the direction of her life. There was her first boss, the man who offered her a job in a bookstore coming out of high school in 1978 (although her final grades were not yet released). Then Ruth, her first client after Sonia became a personal trainer. Ruth lived in an assisted living facility on a golf course in Florida, where Sonia had underestimated the physical abilities of its residents when she came prepared to pitch the benefits of her services to improve their golf games. An aide brought Ruth into the room in a wheelchair. Although she knew Sonia had no experience working with people with Parkinson’s, Ruth hired her anyway.
When Sonia moved to Virginia, she started ‘dry land’ and pool exercise classes for people with Parkinson’s and their caregivers. She was inspired by the resilience, positivity, and sense of humor of the people she met. She also saw compassion, caring, and camaraderie among the participants in her classes and the support they provided each other.
Recognizing that some people are intimidated by formal support groups, she started offering Cafes in 2016, a social alternative for people with Parkinson’s to come together with their families, friends, and caregivers to just chat and maybe share a snack. Building on that concept, in 2017 she founded the non-profit, Parkinson Social Network (PSN), to help people live well with Parkinson’s until a cure is found.
She encourages people with Parkinson’s to become active and stay active so they don’t slip into depression, apathy, and anxiety. In addition to providing social events, PSN provides resources, education and advocacy. Along this line, she has put together a Parkinson’s Awareness Resource Kit (PARKit), which contains national and local resources. She brought one for everyone and left extras for those who couldn’t make the meeting. Her website offers a goldmine of information and resources (https://parkinsonsocialnetwork.org)
Addressing questions about working with Parkinson’s, all three agreed:
- Be flexible. See if you can take your skills and use them elsewhere.
- Work around your schedules (meds, eating, exercising).
- Take the plunge and disclose your diagnosis. Stress of hiding is a lot of work.
- Can you get accommodations (such as voice recognition software if you cannot type)?
Hardest thing for people with Parkinson’s is change. Keeping to a schedule is a benefit.
- Timing of meds is imperative.
- Make yourself a priority.
- Maintain Mind-Body-Spirit connection. Let one fall, it’s like a chain. The other two fall.
- A high percentage of people with Parkinson’s get depressed. Depression or moods in general make meds not work.
- Antibiotics make meds not work.
- Maintaining spirit and meds is a juggling act.
- Things like walking are no longer second nature. You have to think about them.
- Forget multitasking. Focus on one thing at a time.
- Be in the moment. Do one thing at a time.
- If you have to be hospitalized, have someone advocate on your behalf. Hospital personnel don’t understand Parkinson’s.
If you can’t find the resources and information you need or have any questions, Sonia said to let her know. She can be reached at 571-286-5000 or Sonia (at) ParkinsonSocialNetwork.org. You can also subscribe to her weekly e-newsletter, Out and About with Parkinson’s at https://parkinsonsocialnetwork.org