Two and a half years ago, a movement-disorder specialist confirmed my family physician’s judgment that my problems with balance and walking could be early signs of Parkinson’s disease. That’s exactly what they were. I joined one million other Americans living with this illness.
My symptoms, although mild and so far manageable, are nonetheless evident. My doctors note my stiffness and reduced facial expression. My daughter worries about my posture and my tendency to shuffle. My wife is alert to my problems sleeping and my loss of a sense of smell. Friends comment that I’ve slowed down.
It’s sometimes difficult to sort out the changes that are due to aging—I was seventy-seven on my last birthday—and those that are due to Parkinson’s. Even my relatively minor problems are troublesome and make the future less appealing than it might otherwise be.
I’ve known others with Parkinson’s and have read accounts of what is likely ahead for me. My brother-in-law suffered from progressive supranuclear palsy, a close cousin of Parkinson’s, and I watched him deteriorate. Advanced Parkinson’s is a severe illness with debilitating effects, including limited mobility, dementia, depression, fatigue and sleep disorders. For those with Parkinson’s, the issue is not whether one will improve but the pace at which one will get worse.
With my symptoms, I can still do many things that I enjoy: gallivanting with my children, eating meals, going to baseball games and on outings with friends, taking an annual fishing trip, reading and writing, visiting the gym. I’m not sure how long these pleasures will continue. Like others with my disease, I’m hoping for an indolent course, but there’s no assurance of that. Since my symptoms predated my diagnosis by at least eighteen months, I may already have enjoyed as much indolence as I’m due.
But my Parkinson’s disease is not without its positive side.
Shortly after my diagnosis, I saw a man walking down the street in my suburban neighborhood. I was jealous of his easy stride and saddened that I had taken for granted my ability to walk when walking was easy. Now I must concentrate in order to move my legs and swing my arms. My situation is a reminder that I didn’t pay sufficient attention to the blessings of the here and now, the simple joys of daily life. I didn’t enjoy walking when walking was easy.
Walking isn’t the only thing I should have paid more attention to. There were plenty of missed opportunities. Having lost my sense of smell, I regret that I did not focus more on enjoying the smells of our holiday kitchen or my freshly bathed infant kids. I shortchanged myself by multitasking when I should have focused on one thing at a time. Answering email while watching baseball on TV lessened both activities.
A friend accuses me of being a “woulda, coulda, shoulda” kind of guy, and she’s correct. Parkinson’s has motivated me to try to enjoy what I have and not spend time regretting what has been lost or is likely to be. As journalist Frank Bruni notes, spending one’s life preparing for future losses “disrespects the blessings of the here and now.” I count this newfound attention to the patterns of daily life one of the joys of Parkinson’s disease.
The title of a new self-help book recently caught my eye: Be Where Your Feet Are. The book is a collection of homilies about the need to stay focused and be mindful, and its title is my new mantra. I’m trying hard to be where my feet are and to enjoy the day to day. When visiting the gym, I no longer rush through my routine, trying mainly to cross it off my to-do list. Now I concentrate on the weight lifting and movement. When having meals with family and friends, I focus on the company, not the cuisine, and enjoy the comradeship and conversation.
As I work to be where my feet are, I’m also trying to prepare for what lies ahead by laying the foundation for continuing to do the things I enjoy. My strategy is based in part on a decades-old encounter among friends.
In 1989, I accepted a position with an international NGO and moved to Bangkok, where I shared an office with two Johns who worked for the same organization: John Gill, a Scottish public-health physician who had worked in Canada and Jamaica before moving to Bangkok; and John Stoeckel, an American population-and-health researcher who had previously worked in Bangladesh and Nepal. Both Johns had lived in Bangkok for years. Their colleagues joked that they had become close friends because they both arrived at the office early and spent the first hour of every workday gossiping and complaining.
Gill developed Parkinson’s disease and, in due time, the characteristic tremor; he found walking so difficult that he required a wheelchair. After several years apart, the three of us met for lunch. I watched, surprised, as Stoeckel secured a napkin under Gill’s chin and cut his food into bite-size pieces. Post-lunch, Stoeckel brushed off Gill’s shirt and trousers, where much of his lunch had landed as he struggled to move the food from his plate to his mouth.
I tell this story to my close friends to encourage them to be ready to help me eat—to cut my food into bite-size pieces and to clean up after me. And I’m delighted that they have promised to help. Having friends willing to play nursemaid and eager to assist is another joy of Parkinson’s.
Even before my diagnosis, one close friend, an orthopedic surgeon, was troubled by how I was walking and urged me to see a neurologist. When another friend heard of my diagnosis, he read Michael J. Fox’s autobiography to learn more about the illness. He is among those who remind me to stand up straight and swing my arms when I walk. When we’re out together, he regularly asks, “You okay, Peter?”
I am neither uninformed nor a Pollyanna. I listen to the online seminars, read the material on Parkinson’s and pay attention to what my movement-disorder specialist tells me. I know where I am heading, and I’m not looking forward to it.
But I am optimistic. I just bought a lifetime Virginia fishing license. It cost more than an annual license, but if I’m still fishing in 2023, it will have been a smart investment. I’ll enjoy the fishing more than I used to, because I’ll be where my feet are and have friends to watch over me.
Such are the joys of Parkinson’s disease.
8 thoughts on “The Joys of Parkinson’s Disease”
“Be where your feet are “ is a beautiful mantra, thank you for sharing this.
Thank You. I was diagnosed 4 years ago, and your story closely matched my own. I agree that sharing and preparing with friends and family is key. My husband, family and friends have and will make this new way of living more joyous. Whether it is reminding me to take meds 5 times daily; swing my arms; watch my posture, use my hiking poles, or just laughing about my crummy balance and messy table manners, engaging others (constructively, not complaining) in the journey of chronic illness aids coping and helps to maintain relationships, ideals and goals.
Thank you for sharing your story. I have ME/CFS and fibromyalgia. The first, a neuroimmune illness makes my muscles limp, causes dizziness and has affected my balance so I use a power chair. I really relate to ‘enjoy what you have now’. I see neighbors rushing out, getting into their cars and driving off. I tell myself that I hope they appreciate their freedom and enjoy it fully. Anything can happen to any of us at any time.
Coping with chronic illness can make us take note of and count our blessings more. I have chronic pain from fibromyalgia and hypermobile joints, not life shortening but difficult to deal with and I care for my husband, and support three of our adult children who have Myotonic Dystrophy Type 1, a neurological wasting disease. The first symptoms only started to show when our youngest was seven and it took years to find the first diagnoses but I appreciate those special moments in life.
Thank you very much for your article. I hope your illness remains mild enough for you to catch lots more fish.
Learning to live in and appreciate the “now” , as you say “where your feet are” , is a behavior I’ve been trying to make part of my life for the last 29 years. Sometimes that goes well and sometimes it doesn’t. My husband was diagnosed with Parkinson’s 6 years ago. Living this moment has been a relatively new concept for him. We help each other with this. When we multitask we steal away from ourselves the joy of a single focus. Thank you for pointing this out. And thank you for writing this article for many people to read. In the midst of difficulty you were gifted with this discovery, a transformative moment, a jewel. We all need each other as a friend recently said to me. Glad to hear your friends will help you to eat if that time comes. Yes, we all need each other.
I belong to a support group for people with chronic and terminal illnesses and will share the link to this article with them. Thank you for writing such an honest and mindful account of your experience.
Thank you for sharing your journey. Discovery of an illness affects our self identity.
But you lift up the gifts too. Awarenesses, perhaps for the first time that the ordinary joys of walking and fishing are jewels.
Thanks for reminding all of us.
I love your way of thinking—there is always joy to be had in small but wonderful things, even amid challenges.