You want it darker

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fade into darkness, lostknightkg, deviantart

This has been quite a year this 2016.

Looking back, violence seemed to reign supreme. I’ m thinking of the many terrorist attacks in Europe and the Middle East and the stunning loss of lives they wrought. Conflicts raged on in places like Syria and Iraq and we saw the horror of life in cities like Aleppo that led to the Syrian refugee crisis. In Europe, there was Brexit and the possible collapse of the EU. Assaults on our planet escalated environmental protests and drove a chasm between people that seems impossible to bridge.

We also lost some noteable people as the plethora of year-in-review lists will attest. Of particular note for me I would say were Mohamed Ali, David Bowie, Prince to name but a few.

The final two months of the year were even darker times for me (as it was for millions more no doubt). First came the US presidential election, followed by the death of one of my muses, Canadian poet and singer/songwriter Leonard Cohen. Finally, some personal health concerns weighed heavy on me as the year drew to a close.

I don’t want to toss another log on the the political hay storm fires that are burning. I’ve read at least a few dozen articles on the election results that have been much better written than I could ever hope to do. Suffice it to say that I am stunned by the election to such a position of public office of someone who spews such vitriol and hate, seems so racist, xenophobic, misogynistic, homophobic, divisive, provacative, ill-tempered, unethical, exploitive, angry and down-right rude. No matter how strongly one may be against another party or candidate, how in the world can so many support someone who behaves like this? I do get it – lots of people were angry at conventional politics in the US but was no one listening to the things this guy was saying? What he’s been doing?? Sorry – I said I wasn’t going to stoke this fire – and I think I just may have. Let me just say, I am one of those who face this new future with a great deal of fear. These are particularly worrisome times for  vulnerable people – and that must include people with Parkinson’s living in the US. I could be wrong about Trump and for the good of all, I sincerely hope I am.

As for the death of Leonard Cohen, I must say that his writings and music have been both an inspiration and a source of joy throughout much of my adult life. While it wasn’t a total surprise – he seemed more fragile of late and had publicly mused about his impending death in interviews and in his final LP You want it darker– hearing that he had died,  I felt like a great weight had been placed upon me. I felt crushed.

Finally, as if all that doom and gloom weren’t enough, I found out that both myself and one of my daughters will be required to have surgical operations later this month. More weight to carry…

After the Preface

Thank you for sticking with me on this one. Seems like a lot of black clouds have accumulated overhead in this latest blog entry. BUT, this has all been an elaborate preface to explain my relative dearth of blog entries in recent months. To help explain why I haven’t been as active or as inspired to pen additional works.

Simply put, as I have been following all the “doom and gloom” developments noted above, I’ve been feeling that anything I might have to say about living with Parkinson’s pales in comparison.  My experiences, my challenges, my questions and concerns all seem so insignificant or petty in comparison.  How can I write about the pain of my dystonia (curling of toes) when another 47 people are killed trying to flee Aleppo? Or when I read Trump’s new years message to the “losers” who didn’t support him? Or when I consider the void left by the death of another cultural icon?.

A writer friend advised me that while these more “global” concerns may be real, there is still very much a place for the voice of the individual. In fact, the voice of the individual often times tends to be the voice of many others. You reflect back or mirror others experiences in ways that they themselves can appreciate and you also hopefully contribute to a larger discussion of these issues or experiences.

I’m not sure if I’m convinced as yet. Still, a seed has been planted. I’ll let it germinate a bit and we’ll see what grows in the weeks and months ahead. One thing is for certain – I’ll need a little less darkness and a lot more light for this thing to grow!

Blessings for the new year!

All good things

rk

 

 

 

 

enough said

Thank you to all who have followed my blog and spent some time with me and my musings this past year. I apologize for the lean times of late but I’ve been having a bit of a rough spot lately. Here’s hoping for a better year ahead for everyone.

all good things, rk

giphy

First Steps, First Fall

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RAMIV FIRST STEPS, Inaweofgodscreation, flickr

It was one year ago that I posted the following blog entry. I find it stunning that the effects of such a seemingly minor incident would still be present today. Yet, they are and so, for the newly initiated, or those just new to this blog, here’s a repost from November 22, 2015.

 
As the years go by, we all have monumental moments of note. As a toddler, it’s our first steps. As a child, the first day of school. Later, our first kiss. Our first graduation. Our first day on the job.

I’ve had the good fortune to check many of these “firsts” off my list.. This week, in a strangely twisted way, I had the “pleasure” of checking another off my list – my first PD fall!

I was raking leaves in the back yard – just plodding along, clearing off a flagstone patio for about the fourth time this season when my feet somehow got caught up in one another. As I felt myself begin to fall forwards, I sped up to try to take myself out of the fall. Bad idea. Practically running, I hurtled to the ground and ended in a more violent crash than if I had just let myself go.

Now, I’m a few days into severe chest pain from bruised (hopefully not broken) ribs, a stiffening neck and muscle aches throughout. When I have tremors or dyskenisis, it strains my muscles even more.

Yet, at the moment of my fall, as I lay there on the cold stone patio unable to move, one of my first thoughts was my next meeting with my neurologist. (As an aside, the other thoughts whereof that tv commercial where the frail elderly woman on her kitchen floor uses a “lifeline” button device and calls out, “help me I’ve fallen and I can’t get up!” . I didn’t have a “lifeline”. I wondered who might be the first to discover me!)

As for my neurologist meeting, you should know that, for the past 15+ years, every 6 months, I’ve been asked a series of more or less the same questions. These questions – ranging from side-effects from my medication to my ability to dress myself or do routine tasks – are intended to track the progress of my PD. During a clinical trial that lasted almost 3 years, these standard questions were ramped up in frequency to every 6-8 weeks and the list of such questions swelled to include subjects such as my desire to start fires, any suicidal tendencies I might have, whether I had an increased interest in pornography or any compulsive behaviours. Mostly I would give the same repetitive answers (though the odd time I would lob out a completely different answer for the astonishment or amusement of an Intern or Fellow!).

These days, with that clinical trial behind me, I’m back to the shorter but standardized questions. I know what’s coming and what to expect. I have my duly rehearsed answers and will dutifully respond. Yet this time, there will be one difference. I will inevitably be asked if I have had any dizziness or if I have fallen.

“Yes!”, I will proclaim! “Yes, I have fallen!”.

Addendum: I did get up

Addendum to the addendum for the sequel: I didn’t break any ribs in the fall but it sure broke my confidence. I’m much more attentive and guarded when walking, much more concerned about potentially falling once more. This has lead to a sense of frailty that I’m still trying to overcome.One step at a time I guess…

Big Baby

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baby pushups,snow mask, deviantart

Virtually every week, from a variety of social media sites, I read of a few suggestions for therapy or treatments to help with Parkinson’s. Some are clearly bogus aimed at pushing a product or a program. Others are worthy of more investigation to see if their claims can be collaborated. Some can be dismissed as not relevant to me personally while others seem to be just common sense.

Recently, I came across one strategy that was particularly alluring. I was drawn to it in almost a primordial manner. Let me briefly highlight what the article in the Underground Health Reporter  purported.

The authors suggested that when brain development or motor function is impaired, your nerve impulses become jumbled. When your nerve impulses are disorganized, so are your motor impulses and sensory impulses, endangering your overall health. They say that the “cross-crawl” technique is one of the easiest ways to activate your brain development and nervous system to give it the proper motor and sensory stimuli it needs to take control of your bodily functions—thereby preventing or rehabilitating health problems. The cross-pattern movement builds the bridge between the right and left hemispheres of the brain, allowing for electrical impulses and information to pass freely between the two.

These patterns are stored in the brain and are responsible for governing our nervous system, spinal muscles and coordination, and programming our bodily systems to work together as a team (no mention of that slacker dopamine on our PD team!). They go on to suggest that all of our bodily systems depend on cross-crawl integration, even cerebral activities, such as learning language, reading, hand-to-eye coordination and communication.

We’re encouraged to look to babies.

Until a baby learns to crawl she moves in a homolateral pattern. This means that the right hemisphere of the brain controls the right side of the body and the left hemisphere of the brain controls the left side of the body.If we failed to mature past this pattern of movement, our gait would be awkward and uncoordinated, with the right hand and right leg jutting forward at the same time. brain development

However, as soon as a baby begins to crawl, she activates the contra-lateral pattern of movement that is essential to her brain development and nervous system. She learns to reach out with her right arm as her left knee juts forward, and move her left arm forward as she picks up her right knee. We continue to learn this cross-crawl movement as we advance to walking, running and swimming.

The cross-pattern movement builds the bridge between the right and left hemispheres of the brain, allowing for electrical impulses and information to pass freely between the two.

They continue by pointing out some signs that your cross-pattern movements could use some sharpening including:

Lack of coordination and balance
Difficulty reading
Exhibiting learning disabilities, such as dyslexia
Clumsiness
Stuttering
Saying things backwards

The suggestion is that you can reprogram your nervous system and strengthen the connection between the right and left sides of your brain using cross-crawl exercises They conclude with brief instructions on how to practise this exercise:

Stand with your spine erect and arms at your sides.
On an inhale, raise your right arm up. At the same time you raise your right arm, lift your left leg, bending at the knee.
On an exhale, lower both the right arm and left leg.
On an inhale, raise your left arm up. At the same time, lift your right leg, bending at the knee.
On an exhale, lower both the left arm and right leg.
Full range of motion, not speed, is the most important component of this exercise. The higher you lift your arms and legs, the more you are energizing the brain development becomes, encouraging it to store new, more effective patterns of movement.

Use the breath to help you slow down the movements. Slower movements require more precise control, which delivers greater benefits, faster. Experts recommend 200 to 500 repetitions a day, but it is important to stop at the first sign of fatigue.

I don’t know about you but I can see that this might be helpful. I think I get it. I even tried to practise the exercise as described above (but 200 to 500 repetitions a day! Can’t see that happening!). If we want to make positive strides forward in brain conditioning and motor functioning, we’ve got to think and act like babies. Yes, babies. Perhaps not quite the cute and cuddly kind but babies all the same. Really. Big. Babies.

 

Post-script. I’m up to 4 repetitions today. Wwwaaaaaaaaaaa !!! 😦

 

 

 

 

In debt? Having difficulties making ends meet? No worries! You too can profit from Parkinson’s! (or Ka-ching. ka-ching Part Two)

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Salesman, KateHodges, deviantart

My Google news alert coughed  up a doozy this morning. The headline read :

“Parkinson’s Disease Therapeutics Market Research Report Now Available at Research Corridor” The Republic of East Vancouver.October 7, 2016

The body of the article goes on to say that a group called Research Corridor has published a new study titled “Parkinsons Disease Therapeutics Market – Growth, Share, Opportunities, Competitive Analysis and Forecast, 2015 – 2022″. There’s not much content in the balance of the post but the reader is invited to “browse the report” via a link which I am graciously including at absolutely no cost to you here! Upon following this link,you may be so grateful that you will want to pay me for the tip but please consider it a Canadian-Thanksgiving-gift from me to you!

Should you not have the opportunity to visit the aforementioned site, let me give you the essence. For a mere 4,000 USD, you can get a subscription of sorts that will allow you to actually get the report wherein, presumably, you will be able to access data that has been compiled from, likely though not necessarily only, public data sources and neatly re-packaged under the a PD label, to support sales and marketing to the PD community.

Whoa. Wait a minute. That’s news?! Parkinson’s is an awful disease. There’s a growing PD population. It’s worldwide. How can we make some money off of this?  And how can we as Research Corridor make money off of those who want to make money off of people with PD? I, for one, am not buying (even if I could afford it 🙂 ).

Sell, sell, sell.

Happy Thanksgiving for all those celebrating this weekend!

 

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anyone see MJFF and Nike’s latest?   as Neil said, “ain’t singing for Pepsi”.

 

 

 

Ka-ching, ka-ching

So, tell me. After reading the excerpt from this National Post story, just who is benefitting from this Parkinson’s treatment? What is it likely to do to the cost of the medication? Anyone following the Epi-pen boondoggle?

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drugs?, itch-chan, deviantart

Toronto pharmaceutical company behind new Parkinson’s drug bought for $820 million  Financial Post, August 31, 2016

Days after winning regulatory approvals for a new drug to treat Parkinson’s disease, Toronto-based Cynapsus Therapeutics Inc. announced it would sell itself to a much larger international pharmaceutical company for $820 million.

Sunovion Pharmaceuticals Inc., a subsidiary of Osaka, Japan-based Sumitomo Dainippon Pharma Co., announced after markets closed Wednesday that it had struck an $820 million deal to buy all the outstanding shares of Cynapsus. The deal’s value represents a significant premium on the company’s market capitalization of $228 million on Wednesday.

Sunovion made it clear the Parkinson’s medication — which is designed to treat what are known as “off episodes,” during which a patient’s brain dopamine levels are too low for normal motor function — was the target of the acquisition.

Full article available here

Walking man walks (again)

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Infinite Walk, Splinks, deviantart

My last blog, Summertime Blues, had me lamenting the fact that despite my desire, I haven’t been able to pull off a family vacation this year. Luckily, I suppose, we’ve had a particularly hot summer- oppressively hot at times. This heat has wilted my desire to pack up and go. In fact, as regular readers may have noticed, it’s also had an effect on my writing – postings are down, correspondence is down, motivation is down.

It’s in this context that I hope you will forgive me for what I am about to do. It was 3 years ago that I returned from a family trip to 7 different countries. I reflected on it in a blog entitled “Walking Man Walks” which I have reproduced below. If I can’t travel at the moment, permit me to live vicariously through my own travels some 3 years hence! What I penned at that time is still very much relevant in my life today.

Hope you are all having a good summer (or winter if you’re in Australia!).

Originally published August 4, 2013

I’ve recently returned from almost a month in Europe with my family – our first trip to Europe (outside of Italy) and our first “major” trip since I began the pump. Planes and trains took us through seven countries and city travel was mostly confined to local public transport or our own ten feet (5 persons X 2). Being the considerate father I consider myself to be, I equipped everyone with new hiking boots a few months in advance of the trip to ensure they were well broken in. The best intentions, don’t always pay off. Suffice it to say, that not everyone met with success in this regard and the resulting journey has left an indelible imprint on our soles.

Yet, despite the relative support – or better lack thereof – provided by our chosen footwear, we marched on. Often times a weary lot, we soldiered through smoggy cities, pastoral country sides, bustling city cores, massive museums and back street art galleries. We strolled along canals, scaled steps to the top of church steeples and down to the depths of catacombs and crematoriums. We climbed hills and up four storey stairs to “flats” that we temporarily called home.

Walking is one thing when you are relatively unencumbered and free to meander to and fro. Perhaps graze in a meadow or explore a wooded area of a new found park. It’s quite another when you are carrying all your possessions on your back or in a sack or pulling a wheeled suitcase along a cobble-stone street. It’s also not quite as much fun when you are circumventing the circumference of a foreign city in search of an allusive train station while calculating how many minutes you have left before your train departs.

For someone with PD, walking is a double edged sword. On the one hand (or foot?!), I need to keep moving. If I sit or rest for any length of time, I stiffen-up. On the other, the more I walk, the more I tire. Yet, I must continue. I must push myself to walk more or face unwanted pain and rigidity. So, I walk. And walk. Not always briskly. Not always in a straight line. Not always without a shuffle, a limp or cramping. But I walk.

 

summertime blues

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Freedom in a can, eilonwyersatz, deviantart

I’m a gonna raise a fuss, I’m a gonna raise a holler.

Here on the first real long weekend of the summer, those words from an old Eddie Cochran song come back to me in a whole new way.

As I sat in our kitchen, in these early morning shadows, I spent an hour or so perusing  through posts in my Facebook. Aside from the daily junk and “click-bait” I get, I was struck by the volume of posts that featured smiling faces at campsites. People hiking through mountains and foreign cities abroad. Attending parades, concerts, or sporting events. Families together on boats or beaches, in parks or posing in front of famous landmarks or iconic symbols or sculptures. In words, they recounted stories of their adventures and follies.

Not that long ago, my postings would likely have told similar stories. Yet these past few years, we’ve been operating from a different script. Perhaps it’s the fact that our children are no longer children but young adults or perhaps we’re not as driven to orchestrate elaborate vacation plans, but we’ve done very little vacationing as a family.

Moreover, as my Parkinson’s has advanced, my energy and motivation for the same seems to have been gnawed away from me. I still very much long to do this, but can’t seem to marshall together my resources to make it happen. The beauty of a glorious beach is marred by the long list of “things to pack-up” and haul wherever we may go. The allure of foreign cities is tarnished by the weariness that inevitably accompanies long flights and podiatric exploration. Even a quick weekend getaway seems too complicated to pull off when you start to consider safe transportation of medications, almost daily “yo-yoing” of my physical health – a few days up, next day down -and trying to coordinate increasing busy schedules of our children (aka young adults).

Yet, there is still some optimism that we have not seen the end of our vacationing days. It’s only the first long weekend of summer. The AC has not been turned on for a single day. Only once has the phrase “I’m bored” been uttered by the young adults in our house (though it will inevitably erupt into a chorus before long!). Why we even have 6 months left on our passports and a few bucks in a US back account and some wayward Euros tucked away in a drawer. With a little cooperation from PD and perhaps some minor attitude adjustments,  we could be experiencing changes in latitude before long!

Buon viaggio! Safe travels! Enjoy your summer!

More PD in last 30 years

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photo montage by pixabay.com

From time to time, I’ve wondered if it was just me or my perception that more and more people are being diagnosed with Parkinson’s. I must admit that I have not spent a lot of time researching this but let’s just say that my eyes have “perked up” of late with developments in this regard.

Parkinson’s Disease was diagnosed almost 200 years ago. It was first described by English physician Dr. James Parkinson in his work entitled An Essay on the Shaking Palsy (1817). Until relatively recently, however, it has not received much attention with respect to medical research on care, treatment, prevention, or cure. In the past few decades, research has received a tremendous boost from organizations like the Michael J Fox Foundation and National Parkinson’s Foundation. Yet this “spurt” of activity, means that we do not have a long history of enquiry to which we can turn. We have very few studies that inform us of the cause for, or the development of, Parkinson’s over a long period of time.

That may be changing. In late June 2016, results of a study in Minnesota were reported on in JAMA Neurology by a group of researchers out of the Mayo Clinic. See a report of it here or to access full study, click here.

Now, before I go further, regular readers of this blog may be asking “Where is the humour in this piece? If I click on the aforementioned links, will one of them lead to a funny picture or some witty story?”. No, I’m afraid not today. The links lead to reports on actual research.. Today’s blog entry is pretty dry. I just couldn’t liven it up 🙂 If you’re still looking for a laugh, perhaps try here. Back to the research…

The study looked at trends in the incidence of parkinsonism and PD over 30 years in a geographically defined American population. While this may be considered a “typical” population, the authors warn about trying to extrapolate too much from the data as the population may not have been as diverse as, or have been exposed to different contributing factors, as other communities.

That being said, I find it interesting that we are getting a bigger picture of this disease. This is the first study to show an increasing trend in recent years in the development of PD. In particular, it is reported that men of all ages had a 17 percent higher risk of developing parkinsonism and 24 percent higher risk of developing Parkinson’s disease for every 10 calendar years. The study also showed that men 70 and older had an even greater increase—a 24 percent higher risk of developing parkinsonism and 35 percent higher risk of developing Parkinson’s disease for every 10 calendar years. The results for women were similar but not as conclusive.

“We have reasons to believe that this is a real trend,” says Rodolfo Savica, M.D., Ph.D., lead author and neurologist at Mayo Clinic. “The trend is probably not caused merely by changes in people’s awareness or changes in medical practice over time. We have evidence to suggest that there has been a genuine increase in the risk of Parkinson’s disease”. The researchers point to environmental and lifestyle changes as potential causes for the increase.”There has been a dramatic change in exposure to some risk factors in the United States,” Dr. Savica says. “We know that environmental agents like pesticides or smoking or other agents in the environment have changed in the last 70 years or so. Changes in exposure to a number of risk factors may have caused Parkinson’s disease to rise.”

This is an important piece of the PD puzzle – we need not only to confirm if this same trend is replicated elsewhere but indeed to understand what causes Parkinson’s Disease in the first place. I don’t suspect we’ll have to wait another 200 years to move this forward.

I can’t forget (but i don’t remember what)

window_by_arthursoares
window, arthur soares, deviantart

When Leonard Cohen droned out these words back in 1988 on his “I’m Your Man” LP,  I’m sure I welcomed them with my usual fervour for this great artist. Besides striking an emotional chord, I appreciated the darker irony and humour of this piece. What I’m sure I didn’t appreciate was how prophetic the title would turn out to be.

You see, Parkinson’s – as well as the aging process in general I’m sure – has begun to rob me of my memory. Not at this stage as emphatically perhaps as Alzheimer’s Disease but a theft all the same. While I experience some short term memory loss for relatively minor everyday things (did I complete that form? where did I put that book? what month was that appointment?), I am frequently reminded of events or people from my past whom I had forgotten. Activities that not only had I forgotten about but that I had absolutely no recollection of! Not one iota. Nothing! It’s pretty alarming.

It can also be invigorating – stoking the embers of memory or, as in a recent case, relighting an otherwise comatose fire. This is what happened with me.

Several weeks ago, I received a standard routine notice from the host site of this blog (wordpress) advising me that I had received a comment that needed to be “moderated”. Nothing unusual about that. I first checked the name of the person whom had sent the comment and, while the name had some passing familiarity, I couldn’t make a connection. It was bit odd that the comment was on one of my first blogs going back some 3 years ago. Odd, but not all that strange.

The comment began by quoting a line from my own blog, and then reeled out a story that, upon first blush, made me think “What the hell is this about?!. What does any of this have to do with living with Parkinson’s?” Here’s what was written:

“A chance for our divergent paths to once again cross. A chance, for those who have paused to wonder “what ever happened to…” to perhaps fill in some blanks.”

Once upon a time, there was a residence in a university in Ontario. Two young ‘uns lived there, with their very own window. A simple window. The window overlooked a space. Through that space, thousands passed each day. Thousands upon thousands of young minds. Eager to think. Eager to be engaged, in a time before Twitter and Facebook and Instagram and Pinterest and…

And one of the young ‘uns decided to use that window. For good. For thought. To challenge. To inspire. To poke, prod, evoke and emote. He put words up in the on a window. Words read by the thousands. Words that caused people to think, to laugh, to love, to celebrate. For an entire year.

“Whatever happened to” the young ‘uns? One… became a teacher. An inspirer-er. A shaper of minds — as the words on the window (and in the newspaper he published) foretold he would. The other… well… went West. To seek fortune and fame and freedom. And mountains. Oh, mountains. And he travelled the world for his career, always remembering that a few words on a window always matter.

But he never forgot his friend who put the words up.

I read it again. Parts of it began to resonate with me. Residence life during first year university…a shared window…putting up letters in a window with messages to passers-by. Suddenly, as if awoken from a stupor, it all came back to me. Images of my first year at McMaster University and my then roommate who I have not seen in 40 years! I was the one putting words up in the window (our only window which we shared!). He was the patient and all too tolerant roommate who would go on to, as he describes it, be the one to travel the world.

This new-found memory brought back the fun I had at the time composing messages on our window and the people I would meet who would comment on it. It reminded me of the arts newspaper I tried to establish with a few others that took inspiration for it’s name from this very act – “Window”. It reminded me of creative, energetic and frenetic times. It reminded me of the thoughtful roommate I had at that time. A roommate, to and for whom, I was likely not as thoughtful.

I am learning to live with many of the‎ challenges presented by PD. Yet, losing memory of such pleasant and soulful times, is troubling. And here comes Derek: a roommate kind enough to open a window and let in a light from that past; to remind me.

That’s one moment that I’ll now never forget (so long as I can just remember what 🙂 )

 

living with Parkinson's Disease…and more!