A Blog About Why I Can’t Seem to Blog

Ironic as the title may be, I have been pondering, even wrestling with and obsessing over this very question for months now. If I had spent a fraction of the time writing as I spent in the emotional/mental ‘doldrums’ thinking about writing...well, you know what I mean.

Having completed my contract at the University, I have more discretionary time than ever before. In response to the question, “What’s next?” I had shared with many that I enjoyed writing blog posts and would be rejuvenating my “Positively Parkinsons” soon. But, despite my best intentions, this has not materialized. So, why the seeming immobilized state?

Time to be brutally honest. Here are the causes/sources that I have considered for my apparent writer’s block.

Maybe this battle of the blog is simply a manifestation of the ever-evolving grip of my Parkinson’s. Like the “frozen gait” that stops some of my PD pals in their tracks; the mind says move but the legs don’t get the message. Or it could be like the stiffness I experience when I forget to take my meds on time.

Moving on to some of the non-motor symptoms of PD, perhaps it is fatigue that plagues my sleep-deprived body of energy, leaving me spent at the end of most days with no energy to be creative.

Or, maybe it is the lurking devil of depression, which can lead to dreary and dark thoughts of hopelessness and a “why bother” response to the challenge of creating and refining a worthwhile blog post.

I have been experiencing a crisis of confidence (not sure if it is a cause or an affect). Is my writing worth publishing or posting? Am I any good at it? Is this writing thing a thinly veiled attempt to attract attention, compliments or, heaven forbid, pity? Is it worth the effort/time? Does it really encourage people (whether with PD or not)? Am I just procrastinating, being lazy or undisciplined?  Maybe it’s just time to move on.

All these potential sources, unanswered questions, and more could be at play in my “writer’s block”. So what do I do?  This is the question I leave with you.  What is your advice?

Apathy and Parkinson’s Disease

To the applause of Canadians everywhere, the Toronto Raptors won the 2018/19 NBA championship. Did you really care? Do you have some travel coming up? Are you excited about it? Maybe you have lots of free time in your schedule for the next couple of weeks. Are you looking forward to enjoying those hours and days? You may be anticipating meeting an old friend, high school buddy or long-lost cousin for coffee. Are you enthusiastic about that?

 I am certain that some of you at least ascribe to the dismissive line of Rhett Butler in Gone with the Wind:  ”Frankly my dear, I don’t give a damn”.

I thought I had experienced most of the symptoms of Parkinson’s, or at least knew someone that had. However, I was ill-prepared for one such attribute.  It crept up on me the past few months. It has proven a stealthy and deceptive enemy, masquerading as a temporary circumstance brought on by any number of life events. It was something I expected to simply “go away” as my life patterns changed. I found myself making excuses when it did not, saying things like ”when (fill in the blank) happens this feeling will disappear”. But it hasn’t. So now is the time to name the unpredictable and elusive symptom apparently experienced by up to 70% of people with Parkinson’s. APATHY. Having capitalized each letter of the word I must admit that it was for emphasis rather than because I felt strongly about it. In fact, everything feels a little (or a lot) emotionally flat.

The shameful reality is that I have fallen victim to this debilitating state of body/mind. Although I’m not continuously aware of its presence, it can climb into my skin at will, like some form of alien. It seeks to commandeer my days, pretending to be the result of fatigue, insomnia, sadness or even depression. Apathy can sit on my shoulder, whispering in response to any attempt at motivation, activity or effort, “Why bother? Just rest for now. Perhaps you’ll feel better in an hour or two. Or maybe tomorrow.  It’s not really that important anyway.” Embarrassed now, I admit to having listened to these prompts and complied, or rather succumbed, to their indifference.

To be completely honest and transparent, when I am caught in the grip of apathy almost everything seems veiled in passionless passivity. The things I used to enjoy don’t seem so important or even attractive. Procrastination and indecisiveness prove stronger than self-discipline and logic. Take this blog post for instance. I have been planning on getting this written for weeks now. But it never seemed to make it to the top of the priority list. In fact, there isn’t much of a list of priorities.

10 years ago, August 30, 2009, I began Positively Parkinson’s in order to encourage others facing the day-to-day battles of PD. No candy-coated aphorisms. No false promises. No venting, rage, or ‘woe is me’ narrative. Just living out the adventure and giving hope as best I can. The 10^th anniversary of this blog should have been enough to rediscover the spark and reignite some passion for the cause, given that I had been looking forward to more time to write posts to share. But  apathetic indifference struck a near knockout blow before I saw it coming.

What exactly is apathy? It is not depression (although it may lead to that I suppose). But the two have some similarities, as both are believed to have neurological, psychological and emotional elements. Of course, the Latin root words provide a fairly clear description of the word:  “A”, means without” and “Pathos”, means passion. That’s easy enough: without passion. And this may be a more pervasive state than many of us realize.

As Helen Keller said, “Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings”.

My guess is that we all know what it feels like to be apathetic, especially if we live with Parkinson’s disease. According to some studies, 70% of us are affected by this silent joy-killer. But what are the causes? And, perhaps more important, what is the antidote?

My own view is that apathy is not just a shortage of dopamine, but a quiet, self protective response to the lack of hope. Hope for a cure. Hope for a slower degeneration of normal functioning. Hope that there is significance and purpose in it all.

The remedy? Perhaps the best response is a combined strategy (to deal with the multi-pronged causation).  Make sure your meds are working properly to deal with the neurological effects of PD as best they can. Second, enlist a support team to provide structure and process, as well as encouragement and accountability. This could include a spouse/significant other, family, friends and professionals of all varieties. This can go some distance to rebut one’s own emotional and psychological slide into apathetic darkness. And lastly, depending on the supply of energy and commitment left in your tank, establish very modest goals, typically one at a time. For instance, my goal was to write this 10^th anniversary blog post before the end of August. There is nothing quite like succeeding at modest goals to give us the motivation to push ahead.  That sense of accomplishment will help build hope in future achievements.

Parkinson's in Paradise - Caught a Cold in the Caribbean

It is relatively easy to feel sorry for yourself when you catch a cold on the first day of a Caribbean cruise.

It all started several weeks before we were to leave on our short but much-anticipated vacation aboard the Emerald Princess out of Fort Lauderdale. As is often the case, it took a week or more of working 14 to 16 hour days to get ready to take one week off, therefore I arrived at the hotel in Florida the night before our ship’s embarkation, feeling rundown and exhausted. More importantly, or so I thought, I was minus my suitcase, which held all of my clothes and, stupidly, my Parkinson's medication. The bag and its needed contents had apparently gone AWOL at the Dallas-Fort Worth airport, aided and abetted by some practical-joking baggage handler. Apparently he or she thought it would be hilarious as he imagined me, dressed in my latest Lululemon clothes with my right side shaking with the necessary velocity to gain flight, trying to convince the maître d' that I should be permitted entry with my wife and friends into the Botticelli dining room on formal night. The American Airlines missing baggage department assured me they would launch a full-scale search and recovery mission in order to track down my truant luggage, ensuring that it would be captured, taken into custody and transported under guard on the next flight to Fort Lauderdale, arriving at the hotel late that evening. Long after midnight I gave up waiting and fell asleep with images of looking seriously out of sync with my well-dressed wife.

I did not feel 100% when I woke up the next morning, but chalked that up to a less than restful sleep and the stress of finding out that my bag had still not arrived. As the morning ebbed away, my frustration began shifting to optimism as the lost baggage police had indicated my overstuffed suitcase had indeed been taken prisoner and was supposed to be delivered to the hotel. I insisted that I needed it by no later than 11 a.m., as that was the time our ride to the pier was to pick us up. Caught between angry, anxious and still exhausted, I sat in the hotel lobby to wait, and promptly fell asleep. Unbeknownst to me, American Airlines had taken my insistence on meeting the 11 a.m. deadline seriously, and missing that deadline they had the bag impounded in a warehouse with millions of other mislaid suitcases. My wife woke me about 12:15 p.m. to tell me that after speaking to an American Airlines supervisor explaining in no uncertain terms that things were getting critical she had discovered that the warehouse was a scant 8 blocks from the hotel, and had arranged a taxi to drive us there to pick up the bag and transport us to the ship’s gangplank. By the time we arrived at the pier I had a bad headache and a good case of the shakes, but at least we were finally boarding to begin our tropical time away.

My next 3 days were spent largely in our cabin (thank goodness for a balcony), only venturing out with a large stash of tissues to staunch the tide that would erupt from my increasingly runny nose. Fellow voyagers scowled at me as I attempted to avoid spraying them with my sneezes. Even crewmembers invariably sought out one of the innumerable hand sanitizer machines every time I went by them stifling my hacking cough and sniffing incessantly. The alliteration was not lost on me: catching a cold on a cruise in the Caribbean!

But despite the lack of cold medicine on board the otherwise well-stocked cruise ship, and notwithstanding my antisocial behavior as I disappeared for a nap every couple hours, I began to appreciate that things could be worse. I could be at work attempting to function in Stoic fashion, pressed by demands I felt ill-equipped to meet. Instead, I had a whole week to recover in the sun, enjoying 80 plus temperatures and unparalleled scenery, sharing excellent food and entertainment with good friends. I could sleep whenever I felt like it, which was often, and likely return home at the end of the week modestly refreshed and rested. Having a cold in the Caribbean was not so bad.

This led me to think about living with Parkinson's disease in less developed countries where good medical care is either unavailable or unaffordable. Living in Canada, I am blessed by having, in effect, Parkinson's in paradise. The standard of living and medical health system enables me to have the best of care, economic access to a variety of medications and the expectation that I will live as long as most.

It is easy to feel sorry for ourselves. But there are many who have little medical or other support in their fight against the fear and uncertain future that follows a diagnosis of PD, if such a diagnosis is available. Comparatively, we are fighting Parkinson’s in paradise.