Here I am going to talk about some of the things I have learned through the almost 10 years Parkinson’s Disease has been in my life.
First off, happy Parkinson’s Disease Awareness Month! Time to get a little festive.
In Wednesday’s post, I spoke about how, through writing, I feel comfortable sharing with my father, family, and friends all that I have learned through my dad’s nearly decade-long Parkinson’s Disease (PD) diagnosis.
For that post, I wrote the following,
I talk very openly about my experience with my father’s 10-year diagnosis with Parkinson’s Disease on my blog (read here). I think part of the reason I opt to write about Parkinson’s Disease says more about my father’s relationship with PD than it does mine. My father is a very factual person, and in some ways, PD is less of a disease and more of a diagnosis. During the time Parkinson’s has been in my life, I have spent more moments discussing the impact of his disease on my life with my friends rather than with my father. The reason for this isn’t because my dad and I aren’t close, but because PD is already such a factor in our everyday life, maybe it isn’t best to spend more time talking about it?
But I have realized that Parkinson’s has shaped my life more than any other event, education, or person ever has. So why not share that, especially with my father? If he, and the rest of my family, has to live with this horrible disease, then he might as well know how much it has positively influenced my perception of life. Writing has become a way to share that with him.
So, today I thought I would share a little more.
Here Are Nine Lessons I Have Learned in Nine Years With Parkinson’s Disease:
- That Curve Ball Will Come. Although I didn’t know what PD was when my dad was first diagnosed when I was 14-years-old, the word ‘disease’ stuck fear. At that point, my only experience with disease was through my Aunt Melanie, who’s death came only five weeks after her diagnosis with ovarian cancer, just two years earlier in my life. Right away, however, I knew that this was a different kind of diagnosis, not the kind that would change the course of my family’s life in a moment, but the kind that slowly crept in, becoming an unwanted intruder in our home. Following my father’s lead, I realized the intruder was here to stay, so it was time to face the facts. Watching my dad day after day, year after year, step up to the plate and take a swing at the PD curve ball has been the best example of resiliency, determination, and bravery throughout my entire life.
- Do What You Love, and Do It Now.
One of the things I am most grateful for is that my dad has lived a very full life. After discovering a passion for photography in his early 20s, my dad began a 28-year-long career with the Los Angeles Times as a photojournalist, where he has seen and done more than I ever knew existed. Climb George Washington’s head on Mount Rushmore? Check. Photograph five U.S. Presidents? Check. Stand on the field as the L.A. Dodgers warm up? Get stampeded on by Kareem Abdul Jabbar court side? Take one of the first flights of the Concorde from Washington D.C. to Paris? Check, check, and check. Oh, and did I mention he has a couple Pulitzer Prizes under his belt for his work? Like they say: do what you love and you will never work a day in your life, and your passion will probably bring success. My dad never put his life on hold – passing up on opportunities or proclaiming to do all of the things he desired once he retired – and for that I am eternally grateful because many of those experiences wouldn’t be an option for him now. I have learned that, as the future isn’t guaranteed, I must live for now, taking advantage of my health, freedom of position, and drive to make a happy life for myself today.
- Show Up.
At about seven years into diagnosis, my dad started the process of Deep Brain Stimulation (DBS) surgery to combat his symptoms. Once the surgeries were approved (my dad had each hemisphere operated on separately), I took off 10 days from work for each surgery. Although I was using double the vacation time I was earning in a year, nothing could have kept me away. Supporting my father, and my mother, throughout this time is one of the things I am most proud of in my life. My dad has been there every moment I needed him during my life, and still was there even in the moments I pushed him away or rejected his advice. These brain surgeries gave me a chance to repay that in small. Family is always first for me, and there are some moments you cannot afford to miss. Show up for the people you love.
- You Don’t Have to Smile To Be Happy.With the difficulties of muscle control that comes with PD, my dad rarely smiles. But, a lack of a smile doesn’t mean a lack of happiness. Parkinson’s has really taught me not to judge a book by its cover: I do not know the struggles or circumstances of the people around me, so it is not my place to make assumptions. My dad isn’t the grumpy person he might physically appear to be in photos, it just takes an exhausting amount of effort to force out a smile. I will say though, when a genuine smile breaks out, it is the best thing ever.
- Be Ready to Connect. PD will become an instant bonder throughout relationships in your life. Suddenly, a stranger becomes a source of supporter, fellow patients become pals, and care givers become companions. Whether we meet other PD patients in support groups or on cruise ships, the bond is unbreakable and the ability to talk through struggles with other patients and caregivers is invaluable. I recently had someone walk into my life who I later discovered has his own personal connection to PD. Never in my life has a friend so completely understood my perspective. The attachment to this person was instant.
- Patience and Acceptance will come. PD will teach you patience in the gentlest way by letting you and the patient slowly adjust together. Whether is it walking at a slower pace or stopping completely for 20-minutes to wait out a foot cramp, Parkinson’s forces more than just the patient to slow down. In the moments when another step was too much, Parkinson’s taught me acceptance. Acceptance that, right now, we were going to take a pause and let life continue around us. I have learned that, whether at the LA Zoo or in the comfort of our own home, I would have the patience to rub my father’s foot for 20-minutes and the acceptance to understand that, despite my best efforts, my massage will not relieve the cramp.
- Nothing Can Hold You Back, But Know Your Limits. My dad is the hardest working person I know. Even now, retired and hampered by PD, he is still non-stop. His can-do attitude has taught me that nothing can hold you back from at least trying, and has given me the encouragement and determination to reach for my full potential. But sometimes, you need to know your limits, such as not climbing on a ladder for my balance-deficit father or not over-promising my time for a determinedly helpful person like myself. One quote that relates to what I have learned from my dad’s PD, but better applies to my still-healthy self is “you can do anything, but not everything” by David Allen.
- Ask While You Can. The hardest part about Parkinson’s for me is watching my dad lose his ability to speak. With so many amazing stories and a quick wit, my dad has much to say that I want to hear. What I have been really going after over the six months I have been living back a home is insight into my dad’s pre-parenthood life. Since he retired from the L.A. Times when I was just 9-years-old, I missed all of the good stories. So as speech gets harder now, I am realizing just how important it is that I take the time to ask away, getting the stories straight from the source and watching his face light up as he recalls those wild days.
- Time Is Ticking. More than anything, Parkinson’s has taught me that life is a ticking clock, so don’t waste it. Make the changes you need to live your happiest life now. So, try new things, find your passion, and say “I love you” every chance you get.
At the end of the day, we all have to work with what we got, and play the game to the best of our abilities with the cards we are dealt. So thank you, Parkinson’s Disease, for teaching me so much of life. It has been a long journey already, but I look forward to learning and growing with you more in the years to come.
Have you been touched by Parkinson’s Disease? Let us know below.