“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.” Thomas Merton
Précis: My Physician DID NOT tell me I had 12 months to live because I had unresectable Stage IV (metastatic) pancreatic cancer. However, my Neurologist DID TELL me I would live for many more years but that I had Parkinson’s, a slowly progressing neurodegenerative disorder. What would such a revelation mean to you? How would it change your lifestyle? Would it alter the way you’d live the rest of your life? Here is what it means to me.
The ‘lens of life’ before Parkinson’s: In academic medicine, you are always multitasking: grant writing; paper submitting; teaching; traveling; administrative tasks; helping the lab group to move our science forward; and always thinking/planning/stressing about the future. Separately, two years ago, my BMI (or body mass index) was 26.8; this implied that I was ‘overweight’ for my body size. Balancing a healthy diet and exercise with work had clearly become a problem.
The ‘lens of life’ after Parkinson’s: Today, I am living a much healthier lifestyle. My BMI is 24 (172 lbs/5’11”), which is in the ‘normal’ weight range for my body size. Daily and rigorous exercise with better attention to diet are now both in the forefront. Thank you Parkinson’s? Research and biomedical science education are still hugely important to me, though I try to stress less about research funding. Mindfulness, contentment, and gratitude are now essential elements to my living-well; a better balancing act between mind/body, health/Parkinson’s and career/life. Again, thank you Parkinson’s?
The river of life is constantly changing its path: At 60 years of age, I did not expect a diagnosis of Parkinson’s. No known family history. Some moments it feels like I need an umbrella to shield my body from the dark rain cloud affiliated with this disorder. But having Parkinson’s has taught me much about me. Interestingly, I’ve learned even more about attitude and being in the moment. Breathe, take it in, accept what you feel, move on to the next moment/breath, and it starts over again. Life changes. Keep going.
“Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” Lao Tzu
Version 2.0 of life happens: I am the first to admit that I don’t like change. Life with Parkinson’s is sometimes subtly different, at other times starkly different then life before without it. You need to remind yourself every day that you are still alive (stay focused and active). Living life is now different; just try to deal with the minor mounting inconsistencies offered in life from Parkinson’s. Let go of who you were to become who you are. Accept it.
“Sometimes the hardest part isn’t letting go but rather learning to start over.” Nicole Sobon
Adversity is just part of life: Adversity is an unfortunate event or circumstance; something we’ve all experienced. Yes, having Parkinson’s has clouded my life, its simply harder to do many everyday tasks. It is at times distressingly stressful. By contrast, I’m doing as much as possible to alleviate/manage my symptoms. I can still do most things I used to do. Although my life-path forward is uphill, I will wholeheartedly challenge each change as it occurs. Adversity happens to everyone. Attitude reflects how we adjust to its impact.
“Everyone is handed adversity in life. No one’s journey is easy. It’s how they handle it that makes people unique.” Kevin Conroy
Do something that truly makes you happy: One of the very best ways to counter the symptoms of Parkinson’s is through exercise. I am a lucky man because one thing I’ve truly loved my entire life has been exercise. If the plan to (attempt to) hold my Parkinson’s in check is daily exercise, I’m happy. Doing something that truly makes you happy (whatever it may be) will nurture your heart and lift your mood. Help heal yourself by doing things that make you happy.
Watch this B.B. King video (“Why I Sing the Blues”) to see absolute bliss and happiness:
My life is not being measured by days, my life is being measured and lived by years: As described in the opening quote by Thomas Merton, a resounding ‘life-theme’ is to expect the unexpected; bring courage, faith and hope with you as you navigate life. Living with Parkinson’s has daily and subtle obstacles, kind of like going over speed bumps; they’re manageable at the appropriate speed. I really can’t thank Parkinson’s but I’m currently very healthy, living a positive life-style, staying educated and I’m full of hope for the future. Regardless of the effort required, I truly want my life to be lived and measured for many more years to come. Live life with courage. Stay positive. Remain happy. Be hopeful. Don’t ever give up. Focus on what matters the most: I am still here, and you’re still here.
“To die is poignantly bitter, but the idea of having to die without having lived is unbearable.” Erich Fromm
Journey with Parkinson's 