An interview with Rich London, Author & Public Speaker on October 9, 2023 by George Ackerman, Ph.D, J.D.
Can you tell me more about your background?
I am retired now, but as an author and public speaker I traveled the U.S and Canada helping others live well with Parkinson’s disease and find ways to enjoy every day. I spend my time now as a volunteer coach for the wonderful PD fitness program RockSteady Boxing.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Parkinson’s was just one of the major health challenges I faced in my life. I was in a life changing motorcycle accident at age 19 that put me in and out of hospitals for almost a year. In 2003 I was diagnosed with prostate cancer, and then in 2005 I was diagnosed with Parkinson’s disease. Despite my health challenges I have always had a positive attitude about life. As I started meeting more people with Parkinson’s (PWPs) I was struck by how many people were overwhelmed by fear and a feeling of helplessness. I wanted to help them see themselves as a victor, not a victim, and develop the attitude that they could find ways to live a long life and enjoy every day.
What type of goals do individuals with Parkinson’s have when seeing your advocacy?
When a person with Parkinson’s is newly diagnosed, they are justifiably scared and confused. They have concerns such as wondering how long they will continue to have a good quality of life, how long they can continue working, and if PD will bring about an early death. My goal is to help PWPs and their caregivers understand that Parkinson’s is not a death sentence, and that there are ways to win over Parkinson’s disease and get the most out of every day.
What effect can your advocacy have on an individual with Parkinson’s?
As soon as people realize that they can control their attitude and their actions their fear and uncertainty is replaced by resolve and purpose. Staying active physically, socially, and mentally changes everything.
What would you like to see as a future goal for your advocacy?
In my experience, Parkinson’s is a degenerative disease whose progression can be slowed by pushing against it on a daily basis. Parkinson’s will progress whether we push back on it or not. I would love to see more PWPs and their caregivers understand that their attitude and actions can profoundly slow the progression of the disease, and more importantly allow them to get more out of every day while researchers are pursuing a cure.
What events do you participate in?
Currently, my main activity is coaching RockSteady Boxing (www.RockSteadyBoxing.org) at my local community center. RockSteady Boxing keeps me physically active and socially plugged in to the Parkinson’s community. When I was first diagnosed with PD my neurologist said that when it comes to physical and mental abilities the phrase to remember is, “Use it or lose it.” At the time of this interview, 18 years post diagnosis, I can say that that is absolutely true. I truly feel that staying as physically and mentally active as possible has allowed me to still be able to do most of the things that I used to do.
How does your advocacy also assist the caregivers?
There is power in building a plan and taking action to fight for your loved one. I have three key points that I share with caregivers. First, on behalf of your PWP thank you for all that you do. Please know that many people with Parkinson’s lose the ability to express emotion in their face, think of Muhammad Ali. That facial masking is common with PWPs. Remember that behind that mask is still the vibrant and caring person that you love and who loves you. Second, don’t be afraid to accept help when it is offered. You can’t help your loved one if you get burnt out yourself. Third, exercising and socializing is just as important for you as it is for your PWP. Stay healthy and find a way to get time to rejuvenate yourself on a regular basis.
How can someone get in touch? What is your website?
I no longer sell my books or CDs on a website. My email address is firstname.lastname@example.org. I have posted two of my audio CDs, 10 Things Every PWP Must Know and 10 Things Every Caregiver Must Know, on the web as free downloads. They can be found at:
How can others also become advocates for awareness?
Everyone needs to advocate for themselves and their loved ones. Remember that the doctors work for you, not the other way around. Don’t be afraid to speak up and change doctors if you feel you are not getting the results or attention that you need.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Remember that there is always someone better off than you and someone worse off than you. Concentrate on what you can do, not what you can’t do. Embrace your new normal, whatever that is.