Background Information
Hi! I’m Larry Gifford. I am 48 years old and living in Vancouver, British Columbia in Canada. I was born and raised in Westerville, OH. I’m the youngest of four siblings. I was always the less coordinated one. My Mom or Dad would be there for every baseball, basketball, or football game, swim meet, and soccer match as I rode the bench, threw a wild pitch, or stood alone on the soccer pitch picking daisies. I love singing and have a decent voice, but never could keep the beat. I have zero rhythm. So I found my calling in theater and “announcing.” I liked being behind a microphone. In college, it took three days to switch from a theatre major to radio broadcasting. I have been working in radio now for 30 years.
My career as a news and sports anchor, program director and radio consultant has taken my wife, Rebecca, our son Henry and me across the United States and into Canada with stops in Dayton, OH, Philadelphia, Los Angeles (twice), Columbus, OH (twice), Bristol, CT, Seattle, WA, and now Vancouver, BC. Currently, I’m the National Director of Talk Radio for Corus Entertainment and host of the podcast “When Life Gives You Parkinson’s.”
My wife and I have now been married more than 20 years. Our son, Henry, is 11.
In addition to hosting the “When Life Gives Your Parkinson’s” podcast, I am on the Michael J. Fox Patient Council and work for the Foundation to help host live events, webinars, and podcasts. I am on the board of Directors for the Pacific Parkinson’s Research Institute, which funds cutting-edge research at the University of British Columbia’s Pacific Parkinson’s Research Centre.
I have also helped found a new group you hopefully be hearing more about in the coming months called “PD Avengers.” Our vision is “ending Parkinson’s.” In cooperation with the authors of the new book Ending Parkinson’s, a small international working group is plotting how our Parkinson’s community can raise enough awareness to build urgency around PD that pushes all stakeholders to the conclusion that we must end Parkinson’s. It’s a big mission and we’re going to need everyone to help drive this campaign – persons with Parkinson’s, spouses and family members living with someone who has Parkinson’s, the medical professionals, health professionals, scientists, lawmakers, and more. For now, I recommend you read the book Ending Parkinson’s and email me if you want to be included. (ParkinsonsPod@curiouscast.ca)
Five Questions
How did your PD diagnosis come about?
I started having issues with my walk in 2009. My right foot was clompy and draggy. I figured I was out of shape, overweight, and getting older. Over the course of the next eight years, I unknowingly collected symptoms. My brain automatically began to compensate for the inactivity on the right side of my body. My left hand did 90% of the typing, eating, Frisbee throwing, shaving, and tooth brushing. Pretty much any task that I had done with my right hand for the last 40 years was now automatically and unconsciously reassigned to my left hand. When the tremor arrived, I sought medical help. In August 2017, I was told it was likely Parkinson’s disease. When I asked for a more definitive diagnosis, my neurologist smiled and said it would be possible…with an autopsy. We opted to take the neurologist’s word. I was 45 years old.
What are the more significant challenges you face, and how do you meet these challenges?
In the few years since my diagnosis, many of my symptoms have improved with Levodopa and other drugs including my typing, writing, left/right coordination, and more. Some big or weird symptoms that are problematic or annoying for me include:
Focus
Multi-tasking
Exhaustion
Nerve pain
My gait
Anxiety
Incontinence
Sleeplessness
Short-term memory
Excessive earwax production
Working full-time at a high-level executive position in a large, entertainment company challenges my abilities to remain focused every day. My ability to complete projects and simple tasks feels more and more like it is happening in slow motion and somedays effortful as if I were swimming through Jell-O.
I used to be able to multi-task like a champion. I still can do it, but details get lost, the accuracy of my work suffers, and the thus the quality reflects poorly on me.
Every day at 2p, I try to take a nap. I hit a wall. I can barely keep my eyes open. If I try to plow through, I become zombie like. I’ll stare at a sentence, re-reading it for 10 minutes before I snap out of it. I’ve accepted this as part of my new reality. I even have a pillow and a comfy chair at my office. At nap time, I lock my door and turn out the lights for 20 minutes.
For the past year, I have had neuropathy in my feet. It seems to increase in frequency and intensity each day. I take 1800 mg of Gabapentin every day. For me, both feet feel a bit tingly-numb all day and night, with moderate flame kissing the tops and bottom of my feet while the toes seize and cramp. It’s (insert your favorite explicit word beginning “f”) delightful!
Since the onset of symptoms, my gait has been an issue. It has improved through physiotherapy, walking poles, and circuit training. It is still the first symptom to give-way when medication cycles off. Today, when my shuffling gait appears, it always prompts the same question from my wife and son, “Do you need to take your pills?” It also rears its ugly head when I am anxious, for instance in large crowds or going through security at an airport. I always bring walking poles when I’m taking mass transit, flying, or expecting to be in a crowd of people.
Because my brain speaks to the left side of my body faster than it does to the right side, it can impact many different body systems. For me, that includes my bladder. Incontinence, unpredictable stream, inability to control flow, often, despite the urge, and somedays I can’t seem to get started doing my business.
Sleep is precious. For many months last year, I was only getting two to three hours a night. It messes everything up. I have undergone sleep tests and I do have sleep apnea and minor REM Sleep Behavior Disorder or active dreaming. I have a C-PAP for sleep apnea and take Clonazepam to treat the active dreaming. On a given night, my wife may hear every word I utter in my dreams clearly. I might punch my nightstand or violently kick the bedspread. In addition to Clonazepam and a lot of levodopa, I am also on several medicines, which also aid in sleep and help reduce anxiety. Once the medication was at the right dosage, my sleep habits improved.
I had a lot to say about short-term memory, but I can’t seem to remember what. Though I do know at least once a week my wife looks at me and says with compassion and frustration, “We’ve talked about this two or three times before. You don’t remember, do you?” And I don’t.
Throughout the day, earwax is flaking out of my ear and onto my shirts or desk. My wife is often plucking it off my ear lobe before it falls or dusting off my shirt. This and dandruff are both issues I try to control while doing my morning routine, but by midday I could probably compete with Ally Sheedy’s character in the movie The Breakfast Club by shaking my head and making it look like it snowed on a picture.
How do you cope with having PD?
“Coping” is not a product you can have delivered to your doorstep from Amazon. It’s a physical, mental, and spiritual commitment to be better in the next moment than you were the previous moment. Some days it’s about surviving, some days it is about thriving. I’ve recently heard it described as “choosing wellness” or believing you deserve good health and happiness.
I take a lot of medication. Without that, I’m not sure I could begin to physically cope with it. I take medication to sleep better, walk better, shake less, decrease anxiety, improve my urination function, and keep from acting out my dreams. I read books, talk to other PwP and through the podcast I meet extraordinary people with amazing techniques, strategies, mechanisms, attitudes, and perspectives.
Exercise and I have had an adversarial relationship for decades. I do what I can when I can and on occasion push myself farther than I would have done otherwise. Tim Hague likes to ask me, “Did you take your medicine today?? Did you take levodopa?” Of course, I did. He knows that. “Then why aren’t you exercising.” He makes a great point. Some days he motivates me and other days he pisses me off. But, I love Tim and his holistic approach to PD.
My wife and I recently had a conversation, which was clarifying for me. For my whole life I’ve used my losing battle with weight gain and lack of exercise as a punchline. The reality is, with Parkinson’s, if I choose to be the same guy I’ve always been, I’m going to suffer more and place more of a burden on my family. I never want to be a burden on my family. My wife reminded me that Parkinson’s happens to the whole family. So she should get a say in how I approach wellness and what I decided to do to cope with it, because she’s the one left at the end trying to care for me. I’m now trying to let go of old habits and develop healthier new ones to cope with the disease. Like the disease, I’m sure this will be a journey, but I want more good days, I want more adventure and I want to keep PD at bay as long as I can.
Funny enough, I talk the talk. Each episode of the podcast ends with “Keep Positive. Keep Exercising. Keep Listening.” Yet, I haven’t been exercising. And frankly, I’ve been kind of a curmudgeon around the house. I’ve been slowly giving way to PD. No more. My family deserves more of an effort from me and so do I.
Parkinson’s can be a mind-twist, a real brain-discombobulator. One moment you feel like yourself, and the next moment you are trapped in mud, trembling, fumbling and stumbling through life. I want to walk straight, but I bump into the doorframe. I want to unload the dishwasher and *crash* there goes another glass. The reality is you can cry or you can laugh, and if you cannot laugh you will cry. Sometimes I “craugh” – cry and laugh simultaneously. I also get angry, confused, scared, horrified, and pissed-off. I do my best to recognize these moments, try to understand what triggered it, and forgive myself. Most days I can also find moments of gratitude, bemusement, and amazement at the extremes this disease is willing to go to announce its presence.
For me, it helps that I see Parkinson’s as a riddle. I have never stuck with something very long that did not challenge me – from TV shows to partners to jobs, and now Parkinson’s. I realize I have much less of a say in whether or not I stick with PD, but I am engaged with it, no longer ignoring the falling tower that was my body and brain for those years leading up to diagnosis. We are frenemies for life. The riddle is how do I live my best life with this disease instead of fighting this thing that is now clearly controlling part of my brain. I want to help solve my Parkinson’s, and help end Parkinson’s. I do believe we can crack the code. That hope helps me cope.
My wife and son are great reminders of the joy I have in my life. Their love, support and laughter help me cope, as does their continued expectations of me as an engaged husband and father. My career brings me distraction, challenge, reward, and a much-needed sense of usefulness. Friends, online and in-person, with and without PD, help me cope in various forms. I have found taking classes for improv comedy training a great coping mechanism. Also, the podcast allows me to explore all of these things and even though it is focused on my experience, it allows me to cope with issues that arise through my own curiosity of what’s happened to me and why.
I am not a religious person, but I do have a spiritual practice, which includes mindfulness and meditation. I have taken workshops and read books on how to live in the present moment, break away from negative or inhibiting cyclical thought patterns, and truly believe happiness starts with my intention. It is not destination or place for me to “get to.”
And sometimes to cope, I pour a few fingers of whiskey or open a great bottle of red wine.
What has surprised you most about living with PD?
PD is a lazy slob. We live together, but it never cleans up, never makes the bed, and never cooks a meal. I even have to give it special pills each day or it acts up. (Ba-dum-dum.)
Two things standout about living with PD. First off, no one who does not have it or is not a care partner knows what Parkinson’s disease is. We have a hell of a lot of work to do to educate the public. I was as ill-informed as anybody was when I was diagnosed. As long as no one outside the PD community knows what it is, how are we going to get enough awareness, raise enough money, or do enough research to end it?
Secondly, I never expected to meet such good friends along this journey. After the age of 40, new friends don’t come very often or easily, but Parkinson’s has opened up friendships that will last a life time.
What wisdom would you offer someone who is newly diagnosed? Or, what would you want your newly diagnosed self to know about the journey ahead?
You are still valuable, still have great skills and abilities, and you have a lot to contribute to society.
You are loved. The sooner you begin to share the diagnosis, the more people will be able to support you. There is a fear of being vulnerable and fear of negative reaction keeps many people from telling others they have Parkinson’s, but If you broke your leg, had a heart attack, or were diabetic you likely wouldn’t hide that. What’s the difference? PD is a degenerative brain disease. I know I felt people would look at my funny, treat me different or not see me as worth investing time into as a friend, employer or partner. The fear is real. But so is the support many of us have found in sharing our personal stories about our symptoms and diagnosis.
Symptoms can be treated and can improve. Therapists are miracle workers. Seek out help from psychological counseling to physical, occupational, and speech therapy. Seeking “help” is not a weakness. It’s not giving up. It’s not cheating. Rather, it’s about building a team of support systems around you so you can live happily with PD doing the things you love to do.
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Larry Gifford is the National Director of Talk Radio for Corus Entertainment and host of the podcast “When Life Gives You Parkinson’s.” He and his wife Rebecca have been married more than 20 years and are parents to Henry, who is 11. Larry, aged 48, was diagnosed with young onset Parkinson’s disease at the age of 45, but experienced symptoms for eight years before being diagnosed. Follow him on Twitter @ParkinsonsPod.