An interview with Jon Palfreman

Jon Palfreman
Jon Palfreman, author of Brain Storms and a person living with Parkinson’s.

Jon Palfreman, author of Brain Storms, My Fight Against Parkinson’s and the Race to Unlock the Secrets of One of the Brain’s Most Mysterious Diseases

The following is an edited and condensed version of our telephone interview with Jon Palfreman on November 11, 2015.

ePP: First, thank you for writing such an informative and readable book about Parkinson’s disease. Brain Storms portrays the long journey full of the disappointments and the excitement of scientific discovery in the search for a cure and better treatments. The book interweaves this research story with the very human experiences of individuals, including you, who are living with Parkinson’s.

ePP: In January 2011 you were diagnosed with Parkinson’s disease. You kept the diagnosis largely to yourself for close to a year. Tell me about how you were feeling during that time.
JP: Like most other people I was in shock. For as long as possible you want to blend in with the world of the well. It takes time to process the information. You’d think I’d have a more sophisticated response, but my previous knowledge of Parkinson’s disease and research, didn’t make any difference to my reaction to the diagnosis. It just takes time to adjust. You need to grieve your former life and self and come to terms with a new reality. After about a year, I realized it was not going to go away and I realized it was my destiny to do something about it, using my skills as a journalist and my insights as a patient.

ePP: When did you decide to write Brain Storms? How did you determine your approach – blending research and personal stories – even personal stories about the researchers?
JP: It was about finding the right voice. It had to be based in journalism, not a memoir. But I am there staging the story, in the same way as a correspondent in a documentary – not dominating the conversation, but guiding the reader. I wanted to tell an actual story, including patient stories, with hope for the future. I wanted to balance truth and hope.

ePP: How has your Parkinson’s diagnosis affected your career? Are you working full-time? Retired? Teaching? Writing?
JP: I did retire earlier from teaching than I would have liked. I retired at the end of June this year (2015.) I’ve stopped directing documentaries, which often involve international travel. Now I concentrate on my journalism work, my writing.

ePP: What advice do you have for others about disclosing your diagnosis to professional colleagues?
JP: You do it when you are ready. Michael J. Fox kept it secret for seven years, which I find incredible. Eventually you will be found out. When I was working on Brain Storms, when I interviewed researchers on the phone, or if they were lab researchers, I did not mention that I was also a patient. But when I met clinicians in the flesh, I told them up front that I had Parkinson’s, because I knew they would recognize it immediately.

ePP: You are married and have three grown children aged 22, 27 and 31. How has your family reacted to your diagnosis?
JP: Just like the person with Parkinson’s (PD), family members go through their own processes of denial and come to acceptance in stages too. My kids did not really confront my PD, or even want to know about it, until they read the book. People only confront what they have to confront. My kids are still coming to terms with it and adapting.

My wife power walks with me most days, challenging me to keep up with her. There is a story in my book about how vigorous, challenging, exercise can be beneficial to people with Parkinson’s.

ePP: It can be a delicate balance for family members between helping out and helping the person with Parkinson’s maintain their independence. What advice would you give to family members and caregivers about how to help their loved one with Parkinson’s disease?
JP: Family should be sympathetic, but still hold you accountable. Also, you need to keep in mind that Parkinson’s is incredibly variable – some tasks will be easier for some, than for others. Don’t compare what one person can do with another. Most importantly, family and friends need to help keep you engaged in life.

The biggest risk is to withdraw from your life and activities and social interaction – you lose your confidence. You can be embarrassed by things like the difficulty of getting a credit card out of your wallet, or of eating in a restaurant. You need to do your best to do as much you did before. Some tasks, using fine motor skills, like doing up buttons, are more difficult. You may need help. But, give things a try and you’ll be surprised by what you can do. In recognizing your limitations, you also need to learn to ask for, and accept, help.

ePP: Even before your PD diagnosis and this book, you’d interviewed some of the world’s leading PD researchers. Are there characteristics you think they have in common? What do you think drives them in what is often a very long and frustrating endeavour?
JP: Biomedical research is very slow and often involves basic science. The brain is such a mystery. Unravelling a disease like Parkinson’s is so complex, with only a remote chance that your research will result in a cure. The idea of helping people with the disease is the motivating factor for most researchers.

Parkinson’s patients are also in relativity good shape compared to many others that researchers are working to help, like those with Huntington’s, certain cancers, or ALS. There is plenty of interaction between Parkinson’s patients, clinicians and researchers. This helps with their motivation; they see the people behind the condition.

ePP: What messages do you deliver to Parkinson’s disease researchers?
JP: There are still a lot of mysteries; so many unknowns about Parkinson’s. Levodopa is still largely delivered the same way it was decades ago. Progress seems slow, especially when we look at how far we’ve come in other realms of biomedical research, for instance, science has mapped the human genome. And a huge world is involved in biomedicine, including governments, pharmaceutical companies, research institutes and universities. The clinical trials are long, labourious and expensive. Decades go by without much progress. For instance, alpha-synuclein was implicated in Parkinson’s disease in 1997 – almost two decades ago now – yet there has been little progress. It all takes so much time.

ePP: What do you see as the most exciting research developments for the future?
JP: Right now, the biggest development would be to be able to dissolve the toxic species of alpha-synuclein, which could be the cause of dozens of symptoms in many brain regions. Understanding the root cause of Parkinson’s would be a major development. And finding an agent that reduces the amount of alpha-synuclein; that would be the biggest thing at the moment.

Some advances in current therapies would also be welcome. There are some new methods of delivering Levodopa, using a pump or a once-a-day patch, to deliver a more continuous dose. There have also been developments is DBS (deep brain stimulation) surgery, with the aim of a closed feedback loop delivery of DBS, delivering stimulation only when needed.

ePP: You write about the dancer Pamela Quinn in your book and some of her advice to those with PD about re-training your body, like learning to walk with your legs first like a model, or unfreezing by stepping sideways first, like a penguin. Have you had to practice any of these things?
JP: (chuckles) I do try to walk like a model – feet first. It actually helps to combat the stooped posture of Parkinson’s.

ePP: You also write about a man who could barely walk, yet had no trouble riding a bicycle. Have you experienced any such paradoxes in your own abilities?
JP: It’s extraordinary that the Parkinson’s brain takes up some abilities intact. That’s why it’s good to try things you used to do. You may still be capable of quite a lot. Capabilities are so unpredictable, like this fellow, you may be able to ride a bike, but not walk. It’s evidence of the complex and unpredictable circuitry of the brain.

ePP: How are you doing today – physically? What treatments do you undertake?
JP: I’m still quite mobile and walk about 90 minutes every day and at a good pace. Exercise – strenuous and consistent – does seem to help everything. Fine motor skills are different for me – handwriting is difficult. Like everyone, I have good days and bad days, for no apparent reason. One day I may feel fine and then the next day, you can feel anxious or jittery. Medication, and the timing of it, can have an impact too. It’s not just the inputs, it’s also the outputs. Your nervous system just seems more fragile. I’m much less resilient to jet lag.

I know that compared to others, with much more fatal diseases, like Huntington’s, ALS, or terminal cancer, I’m not doing too badly. I am actually grateful. We ‘Parkies’ are lucky that we have a drug available, even with its side-effects that can treat our symptoms. Thanks to Levodopa we can live many productive years.

ePP: How has your Parkinson’s diagnosis affected your view of the future? What do you do to stay hopeful?
JP: I know my Parkinson’s will reduce my lifespan. But it has changed my perspective. When your time is limited, you want to spend that time as well as possible and “seize the day.” When you have Parkinson’s, your future has changed. You are involved in a struggle you are not going to win. It has a profound impact on the rest of your life.

ePP: Has PD added anything positive to your life?
JP: Yes, mainly because I’ve become a member of a Parkinson’s “tribe.” I’ve met people I never would have met, many brave, inspiring, individuals. It has been the greatest pleasure, to experience this camaraderie with others who have so much in common.

ePP: What advice would you give to others with Parkinson’s, especially those who are newly diagnosed? How do you suggest others learn about Parkinson’s, gain confidence and participate in their own care?
JP: Be as well informed as possible. It may be useful to read my book.  Know what to expect in the future. Psychologically, try to get to a place where you can be as engaged and confident as you can.  You’ve got to struggle against the tendency to isolate yourself. Learn how to ask for help when you need it.  There are so many willing to help you, if you reach out.

ePP: What do you fear about your future with PD?
JP: I think most people with Parkinson’s fear how they will die. I do not find this thought process fruitful. People die with Parkinson’s, not from Parkinson’s. It’s too grim to contemplate death all the time.

ePP: Who inspires you?
JP: I am inspired when I see people who are worse off, further along with Parkinson’s, who are still participating in the world. People with young-onset Parkinson’s are often the most inspiring. For me, Parkinson’s is not as tragic. I’ve had a good life already. By getting Parkinson’s at age 60, I don’t feel as cheated. I think it’s a much rougher deal getting it early. Many of these people with young-onset Parkinson’s are most impressive.

About the author: Jon Palfreman, PhD, is Professor Emeritus of Journalism at University of Oregon and a prize-winning science journalist and producer of more than 40 documentaries for the BBC and PBS. Now 65, he currently lives in Lexington, Massachusetts.