Resources for Living with Parkinson's Disease
In 2014 at age 56 I was diagnosed with Parkinson’s Disease. It’s taken me nine years to compile the resources that have helped me to live with this illness and I’d like to share them here in case they’re helpful. There is a great deal of research that shows that exercise, diet, meditation, and other lifestyle changes can significantly slow or even reverse the course of the illness, and this has been my experience. Parkinson’s is described as a progressive disease, but my own experience has been that it progresses through the body, constantly changing and moving around, but that many of my symptoms have become much better over time. I have found it very helpful to keep a careful journal of my exercise routine and other behaviors and the ways my symptoms seem to change and be impacted by my behavior. It’s easy to fall into moments of despair when the symptoms are particularly afflictive, and reviewing the list of what has gotten better can be incredibly comforting. One of the most essential ways to care for oneself and minimize Parkinson’s symptoms is to maintain a hopeful, resilient attitude.
I feel grateful to have connected with several communities, including Rogue In Motion and the Online Parkinson's School, in which PwPs (people with Parkinson’s) are working hard to reverse their symptoms and maintain a hopeful attitude and I wish I could've found these communities earlier on.
Living with Parkinson’s has been an essential part of my spiritual journey. While I hate the illness and its symptoms, I love the person I’ve become. Many years ago I trained as a hospital chaplain and I was taught that there is a difference between healing and curing. While I may never be cured, my illness leads me into ever deeper levels of healing as I become the person I want to be.
Living with Parkinson’s has been a vital part of my work as a meditation teacher. The work of healing myself is so closely related to the meditative process: listening to my body, sometimes pushing myself, sometimes being very gentle, opening myself to ever deepening layers of vulnerability, learning how to be with others as a whole human being, undefended and open.
These are some of the resources that I have found most helpful:
Online Parkinson’s School
Learn more about Parkinson’s in a supportive community of people who are using lifestyle choices to treat their illness.
The Online Parkinson's School is a really great place to start if you’re looking to learn more about Parkinson’s in a supportive community of people who are using lifestyle choices to treat their illness. It’s full of helpful ideas and links to other resources.
I wish I discovered this resource right after I was diagnosed. It provides a huge amount of information in a digestible format while remaining very positive. Laurie Mischley is a naturopathic doctor based in Washington State who is conducting a study of the life style choices of three thousand people with Parkinson’s. She then makes the data available to demonstrate the choices of those whom the illness is progressing the slowest. Over the past 20 years, Dr. Mischley has treated over 4000 patients with Parkinsonism and these courses offer answers to the questions she is most frequently asked. There are over 24 pre-recorded classes and corresponding discussions and new lectures are constantly being added. You may watch the classes at your own pace and in any order. Courses include subjects such as, Dopamine Repletion, How To Eat, What To Eat, What Labs To Order, Supplements, and Exercise. The course also includes regular Zoom discussion groups with question and answer time and people with Parkinson’s sharing their stories and suggestions.
Rogue Online Fitness
Exercise with an online Parkinson’s community to increase mobility, balance, stability, flexibility, and strength.
Created by physical therapists who specialize in Parkinson's disease, Rogue is a wellness program for people with Parkinson's disease located in Orange County, California that offers extensive online resources both live on zoom and by video. Based on the latest research, they offer a wide range of exercise programs tailored to the needs of people with Parkinson’s. Their online programs have helped me enormously to increase my mobility, balance, stability, flexibility, and strength. They offer a library of more than one thousand videos of exercise and educational programs, plus many live classes and support groups. The instructors are fantastic and they work hard to keep the exercises physically and mentally stimulating, varied, and fun. I have had great results from following their programs and am constantly noticing improvements in my ability to move around in bed, on the floor, and getting up from chairs, just to give a few examples. Rogue provides a community of PwPs who are committed to helping themselves be the best they can be. Membership is roughly $75.00 a month.
The website for Rogue can be found here.
Their YouTube channel, where videos can be viewed for free, can be found here:
Try a seven day free trial here.
PD Connect
Free online exercise classes with a Parkinson’s community to increase mobility, balance, stability, flexibility, and strength.
PD connect is another wellness program that offers exercise and educational programs for people with Parkinson’s based on the latest research, but it is a nonprofit that accepts donations rather than a monthly fee. I have less experience with the exercise aspect of this program than with Rogue, but their instructors Lisa and SteF are fantastic and I highly recommend their monthly educational programs which are available free on YouTube and which often incorporate the latest research.
In particular I highly recommend this talk by Dr. Kimball Magoni, a therapist who is also a person living with Parkinson’s. He talks about the need for self acceptance and the need to share one’s diagnosis with others. It's common for people with Parkinson's to isolate themselves and not reach out for help and Dr. Magoni talks from his own experiences about the problems this can create. My own experience is that it's much easier to find the help I need when I'm willing to reach out to other people and be honest and vulnerable about my illness.
Watch a video about PD Connect.
Speech therapy
Improve speech volume, clarity, breathing, and swallowing with online classes
Most individuals with Parkinson's will experience a change in their voice at some point in time. Speech therapy and continued practice can improve speech volume, clarity, breathing, and swallowing. Rogue’s online physical therapy program, described above, includes online speech therapy classes twice a week as part of their subscription service. The Parkinson's Voice Project offers free speech therapy classes online five times a week. Spending even just a few minutes a day on the vocal exercises offered by these programs can make a big difference.
The Rogue speech therapy program regularly uses a little gizmo called The Breather, which strengthens respiratory muscles by offering slight resistance, kind of like weightlifting for your lungs. I recommend just a few minutes in a day on this relatively inexpensive device. Being able to breathe, swallow, and speak clearly are such important parts of leading a normal life.
The books of Dr. Norman Doidge
Read encouraging stories about the way the brain can regenerate and rewire itself.
Dr. Norman Doidge is the author of two best selling books about neuroplasticity, the way in which the brain can regenerate and rewire itself. The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity contains a chapter on a man named John Pepper who is well documented to have reversed his Parkinson’s symptoms using exercise. The book also contains two chapters on the Feldenkrais Method, a way of rewiring the brain using gentle movements that can have dramatic results. The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science is another hopeful account of the many ways of which the brain can be rejuvenated and healed.
I will continue to update this section with more resources and reflections.