“Your life is a work of art that you will work on the rest of your life.” Richard Blanco
“Today is the first day of the rest of your life, and if you screw that up, you can start again tomorrow.” Ingrid Weir
A Not So Typical “Anniversary” Blog Post:
Six years ago this week, I received my diagnosis from my Movement Disorder Specialist (Neurologist) when he said these words, “I have good news, and I have bad news. The good news is I can explain everything that has been going on with you these past few years. The bad news is you have Parkinson’s disease.” I thought, great, now what?
Five years ago this week, I wrote and posted the first blog story for “Journey with Parkinson’s” when I pressed the publish button. And again, I thought, great, now what?
The ‘now what’ answer is that I am still here, more focused than ever to face my Parkinson’s head-on. And I am convinced you too are still in control of the rest of your life, today, tomorrow, and for many years to come.
“Wake up each morning with the attitude, desire, and feeling that nothing will stop you today.” Frank C. Church
Stay Positive, Persistent, and Hopeful: Woven throughout these blog posts are threads that contain a constant theme to being positive, persistent, and remaining hopeful. There is no doubt this is a traumatic disorder. It is like being trapped and dragged-down in quicksand. Others are drawn into your quagmire, slowly bringing them down with you. Parkinson’s is no doubt life-altering, and it takes much to stay ahead, focused, and living-well. No, it is not fair; there is nothing fair in the life of Parkinson’s. I have, in the past, considered it a gift, making me prioritize my life and refocus my thoughts on what mattered the most to me. These three words, hope-persistence-positivity, have reinforced my courage; they make a life-jacket that keeps me floating in the open waters of the ocean named Parkinson’s.
“When you encounter a path deemed impossible, your creativity will get you to the top. Likewise, when your disorder is now the obstacle, your resilience will carry you over the finish line.” Frank C. Church
Your Life Still Matters Today With Parkinson’s: In the presence of Parkinson’s, it is easy to get apathetic, and it easy to think you are of no value anymore. Then, you sometimes decide, this chair is very comfortable, and there is no need to go anywhere. OK, wake up and listen- that is your Parkinson’s talking, that is not your inner self expressing what to do today. Yes, having a disorder like Parkinson’s will alter your life, and it can stymie your life-progress if you let it take over and control your thoughts.
A constant theme expressed here for the last five years at the “Journey with Parkinson’s” is that you are still relevant, you are still important to this world, and that you still matter to many people. However, this is going to take effort because your disorder is dominant and wants you to do little to nothing, letting it grow strong while you grow weaker. The energy you give out matters, and it must be ever-present because Parkinson’s knows no hours or days off, ever.
“Each new sunrise is your ticket stub to make someone’s day brighter, happier, and more hopeful.” Frank C. Church
Each Day May Not Be Easy But You Will Get To The Next Good Day Soon Again: Let’s be honest. Living with Parkinson’s is not a walk in the park. Some days will be harder than others, some hours almost unbearable, and some minutes virtually maddening. Yes, I will admit there are minutes, hours, and days that are harder than others. There are a couple of approaches to consider to get from a ‘difficult part’ to a ‘better feeling part’ of the day.
First, check out, take a break from Parkinson’s. How? Send your Parkinson’s to the corner of the room. What? How? Here is a picture-to-imagine with young Frank in third-grade and being summoned to the twelfth-grade English class taught by the head nun (yes, a Catholic School). My punishment was to sit in a corner on a stool facing the wall (another time, a different day, but I always had fun attending 12th-grade as a 3rd-grader). Now replace me on that stool in the corner of the room with your Parkinson’s. Remember that time when you did not have Parkinson’s? Try it, banish your disorder away from you for a while.
Second, practice mindfulness meditation and use this feeling to calm the current minute. In a different setting, we recently wrote: “Much of our lives are led at a pace where we fret for the future, are remorseful of the past, and frequently, we remain oblivious and out of touch to the current moment. Some experts argue that one needs to practice mindfulness meditation for at least 20 min to achieve a positive return. 86,87 Other experts would suggest that even if you can do it for 5 min, there are rewards for such calming thoughts. 88 We reason, if you can focus your mind on the current moment and maintain yourself in that moment for just 60 sec, a transient but a quality and beneficial calmness will be achieved. Centering yourself within the moment and your current environment and surroundings alters your life-perspective temporarily, allowing your mind to maintain focus not only on one event but also on an awareness of self.” (Hall, Mary-Frances and Frank C. Church, manuscript in press, summer 2020).
Third, the progression of Parkinson’s is slowly evolving; thus, with that in mind, keep the mindset that your difficult time is only transient, and a better moment-hour-day is coming soon. When the difficult time is on you, breathe deep, calm your mind, and stay determined. Reach out for the next moment that returns you to something more pleasurable, and that makes you happy.
“With Parkinson’s, we can reflect on today, remember yesterday, and we can plan for tomorrow; however, it matters more just to stay positive and go forward.” Frank C. Church
Get Up Each Morning And Be Active, Stay Involved, And Keep Moving: For the last six years, each morning, as I awake, I do a total body inventory to see how I am feeling, stretching, moving, thinking; and then I get out of bed. Again, it is easier said than done, but it is essential to keep your mind active and to stay engaged with society. How you achieve these two aspects, whatever it takes, keep it going day in and day out.
I am lucky that I am still working, still teaching, again doing scholarly work, and my mind is genuinely exhausted at the end of each day. And I am fortunate that teaching allows me to work and mentor students, and to work with many incredible educators; thus, my engagement is robust. And now I am left to wonder what will fill this aspect of daily life once I fully, finally retire (but that is a new life-chapter further down the road).
Next, keep moving. Whether it is a regular group workout, a walk in your neighborhood, and organized exercise for a Parkinson’s-specific program, keep doing it. Every step, every breath, every ounce of energy you expend sets you up to help slow the progression of your disorder. Stay active, stay healthy.
“It is no fun living with Parkinson’s. However, as long as I have breath in my lungs and blood in my veins, I will start each day with renewed persistence to take on my disorder.” Frank C. Church
Take Your Medication On Time, Get Some Sleep, Eat Well, And Listen To Your Body Each And Every Minute: Take your medicine at the right time each day; it just matters. Only you know the scenario and your ‘current balance’ of dopamine, only you know how fast you might be consuming dopamine, and what is available. Make sure you are (trying to) getting adequate and high-quality sleep. Do your best to sleep well (I know for many of us, this is a constant struggle). What you eat also makes a difference. Listen carefully to your body.
You need to become your own best friend, your own best timekeeper, and the most knowledgeable person to pacing and balancing your daily life. Everything I have said so far implies you should go, go, and go some more. However, there will be times when you are just not up for it or anything else. There will be times when you’ll just tell everyone, “Hey, everyone, I am exhausted tonight, and I am just going to stay at home and get some extra sleep.” And then there will be that particular time when you have more energy than your friends; those magical circumstances, well, just enjoy those times immensely.
“Working hard to maintain control over your disorder gives you renewed strength, positivity, and hope for the future.” Frank C. Church
A Parkinson’s Diagnosis- You Still Control Your Life: The journey forward will have bumps and turns as you traverse life. Your journey is better with others along to share the good times with the difficult moments. Your life is significant; it was before, and it will be with Parkinson’s.
As you approach your anniversary with your disorder, I wish you well with health. I hope you are happy. As you stand your ground against your companion named Parkinson’s, reinforce your inner and outward strength with positivity and persistence. Always remain hopeful. You are in control of the rest of your life.
“Self-determination paves the way for your journey forward. Stay hungry for life, and all will feel your health and happiness.” Frank C. Church
“In the end, people don’t view their life as merely the average of all its moments-which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life maybe empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves.” Atul Gawande