Category: Parkinson’s


In my last blog post, I discussed losing communication. I find there’s always a way to rejuvenate and recharge. The resulting mental peace, inner satisfaction, and clarity are what makes me stronger. Lastly, I found the level of pain and pain medication has hampered this ability. The result often leaves me asleep after a few minutes.

If one is over-stressed or has been dealing with sleep-deprivation, it shouldn’t come as a surprise if you fall asleep. My original meditation teacher stated outright that sleep cannot be dismissed, that the body will take what it needs. After several weeks of dealing with a parent in palliative care, flying across the country, and living in a single guest room, returning home, and working remotely was physically exhausting. 

This repeated sleep condition has deprived me of a critical link in this world. Communication with a friend has been a godsend to the hustle and bustle of our overly crisis-prone times. Last week, I told my healthcare case manager, “I know she’s still there,” I told my case manager. “… I can’t communicate as clearly as I could before. I want her to know that I miss her and our conversations. However, it seems I’ve misplaced the phone number.

The person I’ve been meditating upon has been a source of inspiration. Many who’ve lost a relative or friend have stated the most common way they know a family member or friend is nearby is through a sense of presence. Likewise, I can sense Ms. K. at various times throughout the week, even being touched. I have not experienced the same with other long passed family members or friends.

In-depth communication in meditation has been significantly impacted (maybe ‘restricted’ is a more appropriate word) these past several weeks. And finding the solution has been equally challenging. In the course of searching for a resolution, I may have found a path that might be helpful for all of us during such times.

First, all relationships require work. Each partner must be committed to listening, letting go of control, practicing vulnerability, overcoming resistance to change, being honest, even in the face of fear, and focusing on your work rather than trying to change your partner. 

I may have taken my meditation partner for granted. I have to realize that this is not a ‘one side benefits more than the other.’ Like most, my relationship was meant to be win-win, not win-lose, or mostly-win mostly-lose. It has to be interdependent, a relationship where each side is willing to come together to make something more significant. 

Second. I need to ask better questions. What steps can I do to positively inject a sense of value, even if it means becoming a better listener? Can I reflect upon my errors and understand the positive differences I make now?

Third. What can I do to maximize that which I currently have? I’ve already mentioned that I can sense my partner at various times throughout the week. I also believe she touches me, as well. Therefore, since everything has not been completely severed, how can I maximize what I already have? How can I enrich that which I already have? 

Life is an adversity response business. We have to create possibilities that do not currently exist. We must learn to course correct. We have to presume relationships in both heaven and earth require a continual course correction. If we do, we’ll find we’ll have created a significant relationship.

For most, dying is slow. It’s about the minutia, the ever so quiet, stealthy diminishing ability to perform the ordinary.

Sherri Woodbridge phrased it as a silent thief, slowly robbing one of who they were and been. Through it all, those of us experiencing such dilemmas try to maintain a sense of normalcy. For instance, my left-hand refuses to stop shaking. The shaking doesn’t prevent me from doing anything, just makes everything harder. I can still button my shirt, but not as quickly as a week ago. I can still make a salad some days. I can still sew a button, only if another threads the needle.

It’s all part of change. Everything is impermanent. Of course, we all change. True to form, people change–healthy or otherwise. We fall in love; fall out of love; become addicted, become free. Some choose wisely. Others choose unwisely.

In the song ‘Turn! Turn! Turn!‘ The Byrds highlighted the never-ending cycle.

To everything (turn, turn, turn)

There is a season (turn, turn, turn)

And a time to every purpose, under heaven.

Pete Seeger wrote Turn! Turn! Turn! from Ecclesiastes. Released at the height of the Vietnam war, the song’s plea is for peace and tolerance. The Vietnam war had its season and we are reminded that time, pain, and suffering has a season. Every one of us experiences this never-ending cycle.

The Buddhist compass within me points to impermanence. We arise, change, and disappear. My hand worked fairly great a year ago. Today, not so much. The impermanence of a non-functioning hand is nothing new. Instead of loss, I want to profoundly remember the beauty of what it means to exist. Impermanence is the path, the vehicle, to that appreciation. Over time, in my own soul, nature presents itself and I was able to unlock a deeper meaning of our current challenges.

The loss of hand function would not change who I am in the eyes of another. The frustration rests within in my soul, for my fear is that in my life, my career, may be dependent upon how valuable I am to others. I presume God will let me off the hook of this endless chore of self-improvement, of being that one person recognized by world aa an authority on whatever. I was never an authority. Never will.

Impermanence will allow me to unlock God’s message of humanity. However, that doesn’t mean I won’t miss the ability to zip my pants. Ha. It means I will accept life’s ever-changing cycle, even my own.

No one has an incurable disease until someone tells you they have it. You may have symptoms for weeks, months, or years, but until a doctor sits down with you, looks squarely in the eyes, and says it, you just don’t know about it. Of course all your symptoms could be something else. They could be nothing. Symptoms could be major, could be minor, laughable, painful; all of the above or none of the above.

As mentioned before, I went to the neurologist earlier this year expecting to be expected to be laughed out of the office, similar to years before. However, in a twist of fate, the doctor looked me squarely in the eyes and said, “You have Parkinson’s.”

I never fully processed my initial meeting, never got the chance. No sooner had I received my prognosis, COVID arrived and all hell broke loose – twelve hour a day shifts, bad food, and political leaders refusing to provide any semblance of what they were hired to do, like leadership for one.

There’s always hope that the last neurologist made a mistake and my current neurologist would say. “our bad. Sorry. you are just fine. Go forth and propagate.”  In reality, how many of us really have such luck, as we all die from something. Yet somewhere inside me, there was a little speck of hope that somehow, all this, the Parkinson’s, the tumor, and poor prognosis would be explained away by a bad burrito eaten several years prior. 

No such luck. Within minutes of my telehealth appointment, my neurologist confirmed my plight. 

We had your scans and physical assessment reviewed by another neurologist. And that neurologist confirmed your diagnosis. You have Parkinson’s.”

There was no mention of being years late. There was no, “Sorry dude for being tardy.” None of that. After usual conversation of current symptoms, medicine schedule, and symptom management, we ended on prognosis.

“Basically, we think you will get anywhere from 1 to 3 good years. This will be our ‘golden period.’” 

“Golden Period?’” I thought. Since this has been raging undiagnosed for years, how much of my ‘golden period’ was swallowed by bad burritos? Ah. Maybe I should be grateful. I have more  time remaining than others. Many people experienced diseases which have taken them quickly and way too soon.

I used to have no identifiable issues. And, all the symptoms I do have, l used to be able to successfully mask. That’s no longer the case. Tremors, stiff muscles, and dropping things are common. Nightly hours of insomnia are taxing and l am unsure just how long I can physically work. Lastly, Lord only knows if my tumor has grown or not, for a surgical, post-op follow-up was washed away during COVID’s tsunami.

The ‘golden year(s)?’ What the hell is that? Last March, I was told I would have a couple of good years left. My neurologist is saying if the tumor, or remnants thereof, doesn’t wipe me out by two years, maybe I will get an additional year or two … or … maybe not.

Sigh. Experiences from just a year ago seem so far away. No matter. I remain exhausted and wish for nothing more than one pain-free day.

In the Elizabeth Kubler-Ross five stages of death, Depression is fourth. In this stage, one is likely to feel like withdrawing from life, feel numb, live in a fog, and not want to get out of bed. That wasn’t me. As subtle as it was, my stage was able to poke hole my otherwise stable façade.

To the normal reader, one may look at the event and say, “Why the fuss?” However, to all-knowing inner soul, it was “Reality bites.” At 4:38 PM, standing over a cutting board with knife in hand, ready to chop a white onion, my hand shook so bad I nearly couldn’t perform the task.  I looked like a construction worker using a jack hammer to cut vegetables.

Stage four started a few days ago with internal tremors in the legs and bradykinesia, a slowness of movement or impaired ability to move as commanded (like chopping vegetables. Frustrating, because I’ve spent a lot time making everything appear “normal.” Yet, I placed my knife on the kitchen counter, sat and in a chair and realized that I don’t know what normal is.

I had only a few weeks post-diagnosis before the Coronavirus struck hard and either forced everyone to place life on hold or work like crazy. Being in the later, I’ve kind of buried the deepest feelings. It was the first time I experienced any anxiety. In the several hours thereafter, I am beginning to understand something larger, bigger, and more determined is about to happen to me.

What if the façade fails and I must out myself? There are other things that take precedence over me. Certainly, my father’s stroke and potential death is significant. My mother’s care is critical, not to mention the subsequent estate settlement. Personally, I’ve had a tumor, multiple sclerosis, osteoarthritis, and now Parkinson’s.

As I sat looking out the window, I realized how tired I am. Tired of being sick. Tired of being in pain. Just plain tired. I suppose the fact that one’s body is trying to either make you miserable or kill you will, in fact, make one really depressed. I haven’t thought about mortality in any sense. I mean I have thought about it, maybe I haven’t processed it. Then again, we’ve all gone through some tough things–many a lot worse than I.

Outside of this moment in my life, I’ve been lucky. I’ve traveled well, seen places most will never see, had many a great love, and experienced God first hand. From a Buddhist perspective, what more could I ask? Sure, my hands and legs are beginning to fail, but I can write. And write I will.

As death approaches, Buddhists are taught to think about their holy writings. Focusing upon the Buddha’s teachings is supposed to bring good luck to a new existence. I will not focus upon superficial images of happiness, material and sensual pleasures, or technological innovation. At this point of my life, I am focusing upon whatever love available. I believe only true love will transcend death.

Thus, for a person who has awareness of death, every moment becomes a lesson in death and a lesson of love. Every moment should be viewed as being infinitely precious, and we should make the utmost effort to use our time to the best advantage.

Upon waking, I marvel at how my back feels, how natural the rhythm of the first few hours are, and how naively I think I could do it forever. Such feelings last an hour, maybe two. After that, I quickly relearn the cumulative effects from an early February tumor removal and Parkinson’s diagnosis. 

In the cool of the pre-sunrise morning, when I’ve had a good night’s sleep, all seems well. As the day wears on, weariness smolders the day, and that beautiful early morning feeling evaporates. Life becomes weightier, and every step begins to take its toll. My neck and back hurt, I fiddle with chairs aiming for a stable fit, and comfortable position. Yet no matter how much I tinker, I remain uncomfortable for the day.

Most cancer follow-up appointments remain canceled. As the W.H.O. noted, many patients with cancer are struggling to receive treatment due to hospitals canceling or delaying surgeries and other procedures. This includes those patients who are otherwise healthy and have curable diseases that require the timely implementation of surgery, chemotherapy, or radiation. Contracting COVID while undergoing treatment is too high a risk as opposed to cancer slowly eating away your life, one day at a time.

I have the utmost respect for my medical team. When I’ve texted (usually about medication), they’ve responded and provided care. However, it seems strange to be standing in the cancer wing of the hospital, updating their applications, with full knowledge that I cannot gain access to very services that can verify my prognosis. No matter how much I understand Coronavirus’s impact, I feel caught in a Rod Sterling “Twilight Zone” episode.

Walking the hallways, working from home, or looking out to the lakefront, I notice how the world has stopped. Driving through the subdivisions, I note, “… even in this place where time stands still; it seems like everything is moving. Including me (Heinrich Harrer).”

The ‘new normal’ is strange: things once marking the days—commuting to work, meetings, projects, and having a drink with coworkers, vanished. Time appears flat, seamless, without structure.

Before COVID, I needed to believe each day would get better. I needed to feel my doctors knew my tumor would abate, and that if I gave everything to treatment, I would be delivered more life opportunities, something I fully don’t deserve. Such needs are gone. I am too comfortable with the sharp edges of my reality. I accept my tumor, my back, and Parkinson’s will have its inevitable conclusion. 

On these days, when it all stands still, I no longer feel the need for bravado. I give up my self-delusion. I hesitantly embrace the knowledge that no matter how many stairs I climb or ellipses I travel, no matter how hard I push my heart or how much weight I lift, neither heart nor head will be healthy enough to pump meaning into COVID.

And in these ‘still’ moments, I reclaimed missed opportunities. I love strangers with an intensity I never knew. On this day in mid-May, as the night begins, I walk and find silent streets: no restaurant lines, no children riding bicycles, no couples strolling in the park. It had taken the combined will of thousands to love one another so much that time stopped. Millions ultimately accepted the immense challenge and silenced life, their life. 

I feel so grateful for the sacrifice. And for this moment, I am so profoundly proud of everyone that nothing more critical exists for me … neither cancer nor a lousy back.

In his book The Heart Aroused, David Whyte wrote of a time he found himself working with a roomful of thoughtful managers. The group was looking at the way humans find it necessary to sacrifice their sacred desires and personal visions on the altar of work and success. Whyte instructed the class to summarize their life in one sentence.

In the back of the classroom, a woman read slowly, unaware that the silence struck the room. 

“Ten years ago . . .

I turned my face for a moment, and it became my life.”

Whyte was demonstrating how we have the patience for almost everything, but that which is most important. We look at the life of our own most central imaginings and see it beckon. For the most part, we neither dare to follow it nor leave it. We turn our face for a moment and tell ourselves we will be sure to get back to it.

I read Whyte’s book in 2002. Every once in a while, the urge to write my one-line life summary resurfaces. In a darkened stairwell my left hand shook uncontrollably from Parkinson’s. “Just one of those days,” I muttered. In utter exhaustion, I quickly penned, “Days became decades.

“Days became decades.”

Almost everyone I know understands this sentence. Work hard for your goals, sacrifice, commit to the ideas of others and forget your own, receive promotions, and get rewarded for success. Through the years, your hard drive gets full, life fills, investments pay off. Yet you stop to look around, and nothing seems familiar. 

Weariness is the fulcrum for introspection. At 59, doctors claimed I had approximately two good years. At 60, eleven months remain. I descend into a cadence of thought of just how I got here. I have a ton of shit, but little else. My inner soul longed for a truer sanctuary, a hunger for something money can’t buy. 

St. Gregory once said, “Grace is given not to them that speak their faith, but to those who live it.” I’ll have to admit, I haven’t lived in faith until about eight years ago. I mean, I had faith, but I hadn’t lived in faith. Right now, amid a pandemic, amid all my suffering, I am just plain weary. Exhausted. Exhausted of words, ideas, thought-provoking mission statements such as “First things first” or “Turn the ship around.” When people die every few minutes, such things seem rather small.

Moving to the bathroom, I splashed water unto my face. Looking upward to the mirror, I asked the man on the other side, “Where does this end?” I didn’t know.

The Response

Lovers of words and computers are prone to endless study. Yesterday, my boss asked if I had performed any research. With accouterment of medical support alarms, laughter was my only reply. 

We’ve become so involved in all things that we forget to live. We are propelled to make the best use of time, study the world, and absorb everything. Interactions become “deep,” “philosophical” or “analytical.” And when we’re done, there’s no joy.

The real proving ground of living a faith-based life does not reside in our ability to study it. It’s about how we treat one another, and whether we’re fully present in each moment of service. Can we find pure gratitude, a joy in the heart, a desire to serve? 

Faithful living is not an intellectual assent. Service to those in need is a path, it’s faithful living. The real proving ground of our faith isn’t how articulate, or how deep it may sound, it’s how we live. Thus, when I looked in the mirror, the man looking back responded: 

“… if there is no room for humanity, pain, sweat, doubt, and discouragement if your life, then you need to change who you are.”

Buddhism claims wealth is temporary, is no path to happiness, and may not be the best source for money wisdom. This view obviously struck the devil as odd. He looked upon the Buddha and said, “To test this theory, I create something unusual, something wonderful, something so special everyone will rush to claim one. He created a Goldman Sachs Apple Credit Card.

If you have an Apple Card, its best rewards are achieved when making Apple purchases via the Apple Wallet app on your iPhone. In theory, it’s less a physical card than it is an incentive program for using Apple’s technology. Need et Coke, open your app, press your Apple Credit Card, double the funky power button, and ‘boink’ with a magic checkmark.  Congratulations oh Apple ‘Oneder.’ (Or is One Dur? Maybe Wonder?). 

My titanium slab came FedEx. I’ve never had a credit card delivered FedEx, except that time in 1996 when a Louisiana ATM Machine gnawed my Business Mastercard like a kid high on Happy Meals. Most Apple ‘Oneders’ claim a certain love with the concept. Few mention inherent problems. A few mention the high-interest rate. Others mention the failure to allow the user to download their purchases to Quicken or other software (an issue they’ve reportedly fixed). These two issues were enough for me to rarely use the titanium slab. Most months, I carry no balance. 

I found another issue: dealing with Apple/Goldman Sachs Credit specialists via text. 

Prior to leaving work, I used my iPhone’s Best Buy App to order $100 in office supplies. Everything was in stock and would be ready in an hour. Best Buy asked if I wanted to pay via my titanium slab. “What the h••• I said,” as I pressed the funky power button twice. Immediately thereafter, “Boink” and a magic checkmark. Moments later, I received a text.

Best Buy Order Status: Order BB###-############ is confirmed. Visit http://blah blah, blah blah for order details.

God damn it. This Apple ‘Oneder’ was a happy ‘Oneder.’ Nothing makes a Coronavirus fighter happier than a “Boink” and magic checkmark – Until getting to Best Buy.  No one was in the store. I and ten other ‘Oneder’s’ waited. And waited. And waited. No one came out. None. Nada. Zip. 

I decided to cancel the order. Laughing from his crypt, the Devil said, “Not so fast schmuck-face.” I could not cancel the entire order at once. I actually had to cancel each item in my order one at a time. I found this annoying, but, since Best Buy’s exceptional service was missing in action, I had no choice.  Since Best Buy already charged my Apple ‘Oneder’ account, I contacted Apple, via the Wallet app, to request any Best Buy charge be denied. Turns out, I couldn’t. Since the transaction was pending, “Tough Toenails Toots.

My conversation started with Apple Support, who transferred me to Goldman Sachs, who transferred me back to Apple Support, who then fed me a Little Orphan Annie decoder telephone number that I had to call to confirm my conversation. 

Amie (not her real name) sounded like the same representative I conversed with when my Mastercard was devoured. I literally called the Little Orphan Annie decoder telephone number texted to me. Amie (not her real name) answered.

“Can’t do (s•••) anything Apple ‘Oneder.’ You have to wait until the charge clears, then dispute it. Thanks for calling Apple ‘Oneder.’ Make sure you save your texts to prove your claim. My name is Amie and I’m glad to have assisted you (i.e., in confirming I was F’d).”

Final Thought

The ‘End Literacy Council’ erected a sign, “Learn to read FREE! 222-6325.”

That’s what the Buddha warned. Nothing is free. 

During the drive home, this Apple ‘Oneder’ called his Cell Phone Carrier and ordered a different phone. I used an American Express card.

Watching Chris Cuomo last night work through his Coronavirus diagnosis and displaying his chest x-ray was amazing. In some ways, Cuomo became a folk hero of sorts, battling adversity to keep the public informed and outlining his self-quarantine modeling. However well-intentioned he was, Cuomo’s bravado perpetuates an ongoing problem: to stay employed, you must work through illness.

My company issued an internal employee policy that provides an additional amount of time off for COVID-19 recovery. All that’s required is the willingness to ‘self-disclose.’ They created a self-disclosure button in the HR portal. It’s easy. Click that ‘self-reporting’ button, enter the information, and submit. 

In my world, any 60-year-old would likely not choose to self-report. For those in my age bracket, self-reporting It’s just another opportunity to eviscerate yourself to the sidelines, an exit to unemployment.

My Parkinson’s was diagnosed 45 days ago. Feels like a 1,000. I spent the first two weeks in a fog-just reading anything possible about Parkinson’s. Not usually a movie star biography reader, I read every word of Michael J. Fox’s autobiography in two days. However, outside of my doctor and case manager, I haven’t told a soul.

I experienced two weeks of reflection, then Coronavirus exploded. It feels 9,000 miles an hour since. Good or bad, there’s been no time to think about Parkinson’s. Neither have I thought of my normal daily position, the pain of dealing with loss, nor coping with demanding people who filter in and out of everyday life. What living with Parkinson’s has allowed me to d is notice something important. Just like pre-COVID, some days are good, some days are bad. Some days, the tremors were noticeable. Other days, it wasn’t. For four days, no Parkinson’s symptoms. Today? Bam. Back with a vengeance. No matter what I did, tremors rumbled. 

Like Tom Hanks’ character in Cast Away talking to Wilson (a volleyball), I sometimes find myself talking to Parkinson’s as if it were real.

God damn it. Not today. I have too much shit going on to deal with you.”

I am unfamiliar with this new world. I am lost. So, I read of a blogger who suggested I find celebrities living with Parkinson’s. My first search found Michael J. Fox, Muhammad Ali, Janet Reno, Charles Schulz, Linda Ronstadt, Johnny Isakson, and Billy Graham. Not that their stories aren’t compelling, it’s just that only three remain alive.

Another interesting thought about post-Parkinson’s diagnosis is cadence. The rhythm of 5 AM, 1 PM, and 9 PM Carbidopa/Levodopa ensures interrupted sleep. And even then, I sometimes wake at 2:00 AM, stiff. Afterwhich, I stumble to the recliner with the best intention of meditating, only to promptly fall asleep. I often wake exhausted.

Unlike Chris Cuomo, I will not publicly announce either Parkinson’s or COVID. I will never click that ‘self-report’ button. Sure, it’s probably the right thing to do, for both coworkers and me. But if I were working from home (being a member of the 55+ club), I’d likely mark my door with blood, keep working remote, and hope for a passover by the God of COVID.

The impulse to work through an illness is crushing, especially now, when workers with truly essential jobs face pressure to do likewise. In my career, I’ve never received a message saying, ‘You’re so important, we have to make sure you take care of yourself and your loved ones.’ Not once. Rather, my career was filled the mantra that devotion to retaining a job, meant personal sacrifice, for the workplace was the ultimate value.

As Joanna Wiess noted, “The impulse to prove an uncommon work ethic isn’t limited to pandemics. It’s on display when Elon Musk brags about working 120 hours a week, or when a high-powered female executive goes back to work within days or weeks of delivering a baby.

I don’t like it. But’s that’s where America is. 

It’s not some mythical inner spirit that helps me overcome an encroaching disease. It’s neither a Buddhist nor Christian philosophy. There’s not even a personal mission to the greater glory. For me, it’s the ‘stupid philosophy’ that allows me to retain employment. With over 10 million unemployment claims over the past several weeks, that’s important.

I don’t like it. I don’t want to have to work through the pain, but that’s where many of us are.

Because It’s Wednesday

Understanding ‘down days’ has been easy. I ignored them. For the past five or six years, I never understood why I felt great one day while stuck in second the next. Since doctors readily dismissed my symptoms, the only avenue left was ‘out of sight, out of mind.’

Yeah. I get it. The approach wasn’t the best plausible approach, but it was the most effective.

How do you feel today?”
I am feeling slower,” I’d respond.
Any idea why?
Hell, I don’t know. It’s Wednesday.

I’ve written about this before: For close to a decade, pain has been a companion. Legs were stiff as far back as 2010; neck stiffness graced my presence in 2014; neck and shoulder pain announced itself in 2016; and arm spasticity followed in 2019, with on and off twinges of the foot, hand and finger issues. During such times, mental fortitude and daily, a multi-daily dose of pain medications were downed like M&M peanuts in a snack bowl.

As the years drifted by, and while doctors could detect the problem, fortitude and drugs allowed to forget. With them, I was equal. No one knew.

A year ago, I was informed that only two good years remained. “Prognosis is poor,” the report stated. Post-surgery, I thought the surgeon might have bought additional time. Last Friday’s Parkinson’s diagnosis was a shot across the bow, a reminder to accept the frailty, the beauty, and the levity of life.

The tumor was my blessing. Maybe via that and Parkinson’s, I can relearn the opportunities of profound growth and how to access gifts untapped. Maybe in the next year, I get more family photographs, visit Zion and Bryce Canyon, and walk along the Snake River Canyon.

I know there will be some dark days, some scary twists and turns. And I will find comfort in the kindness of others. They will be my angels along the highway – never forgotten. God and Ms. K. will provide strength and support from which I always drew.
Lastly, there’s my internal staff: Fortitude. Always had it, always will.

In whatever you do, I wish everyone health and an appreciation for all that life offers.

If that doesn’t work, blame it on Wednesday.

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