A few months back, I ruminated on the various challenges I have faced since my diagnosis with PD almost 17 years ago. I was stewing about some impending test results that i hoped would not add to this somewhat daunting list. If I had to get something else, I thought, let it be a Mercedes Benz.
Well, dear reader, the test results are in. I’m still driving a used Fiat. And the “Big C” in this title doesn’t refer to a Cadillac.
Early in the new year, a tumour was discovered in my bladder and surgery was scheduled for its removal. Pathology tests on the offending tumour confirmed early stage, low level cancer. Apparently there is a fairly high chance it will return so regular re-assessment will be required every 3-4 months. This, I am assured, is good news.
It’s been a trying few months to say the least. I’ve been fortunate to have had support from family, friends and various health care providers which has no doubt kept me going. Yet, I can testify, as hard as it gets sometimes in dealing with PD, things can always get harder or more challenging. Somehow, we have to muster the strength to carry on (or, as that 70’s euphemism so aptly put it, Keep on Truckin’). Even if your truck is a Fiat.
Late-night Addendum….Thanks to all those that have read this missive today and sent along their wishes. It means a lot to have your support! I must, however, clarify that my intent on writing and publishing this short piece was to first inform folks why my attention has been diverted of late. I’ve missed writing and, dare I say it, some of you missed reading my blog! I also wanted to convey some sense of the weight that people with diseases like Parkinson’s carry and yet, even in the face of that, sometimes have to take on more. I’m a bit worn down, but I’m actually very happy with the early diagnosis and treatment and certainly hopeful that I’m on a good road to the future. Again, even if I’m in a Fiat 🙂
Ever since the ALS “Ice bucket” challenge went viral in 2014, raising millions for research into Lou Gehrig’s Disease, it seems every charitable organization has tried to follow suit. As someone who worked in the non-profit health and social services sector for a number of years, I can appreciate and recognize the tremendous need for funds for a variety of purposes – including education, research and service delivery. It’s a sad commentary that we have come to rely so heavily upon individual philanthropic efforts to fill a void in social responsibility.
I never really did get the “ice bucket” challenge. But that didn’t matter. I did know a few people who were diagnosed with ALS and it did give me a sense of what a wicked disease this is. It was great to see this fundraiser take off and be so successful. I hope it translates into positive advancements in combating ALS.
Meanwhile, other charities and foundations are cuing up to find the next ice-bucket challenge. Parkinson’s organizations are no exception. In the last few years, I’ve seen a variety of attempts to launch the equivalent for PD including:
milk shake challenge – make a video of yourself making a milk shake and post on-line (milk shake – get it? You shake the milk kinda like you shake with PD tremors. The only part of this campaign that might have appealed to me was drinking a milkshake which you don’t do.
Shake-it-off challenge – featuring dancing and singing to Taylor Swift’s popular “shake it off” song. Popular no doubt with young girls aged 12-15 no doubt but a populous choice? I’m not so sure.
Pie-in-the-face challenge – post video of yourself taking a cream pie in the face for Parkinson’s. Huh??
I’m sure there are others. While these may have met with some success in certain regions, none has “caught fire”and spread nationally or internationally. I don’t know if there will be one that strikes a chord like the ice bucket challenge did. But kudos to a group from Australia who have taken a different approach to this whole “challenge” phenomena.
Remember the Mannequin Challenge that took off a few months ago? It started at at a high school in the US where video participants took and held positions without movement while the camera weaved in and around the mannequin-like participants. Other schools, sports teams, celebrities – even Hilary Clinton and Michelle Obama – got in on the act.
Well this Australian group – Parkinson’s NSW – recently took on the mannequin challenge with a difference.They have made a video that illustrates some of the disease’s symptoms and challenges. Since the premise of the mannequin challenge involves standing perfectly still (something people with PD cannot do) the message is clear. “Until there’s a cure, life is our challenge,” reads the title card at the end of the video.
Life is our challenge. That’s an appropriate challenge for Parkinson’s.
Seems like the beginning of a new year is often the time of year to make a list. A to-do list to get all those chores accomplished. A wish list for all those things you didn’t get for Christmas. A list of what you want to do differently or improve. Everybody has their list.I was just pulling together a little shopping list the other day when I got to thinking about a different kind of list.
Not a new year’s resolution list. Not Ko-Ko’s list of “targets” from The Mikado (He’s got ’em on the list — he’s got ’em on the list; And they’ll none of ’em be missed). Not Janis Joplin’s celestial wish list (Oh Lord, won’t you buy me a color TV? Dialing For Dollars is trying to find me). And not just a grocery list. Instead, a list of all the new physical and psychological condtions I’ve managed to acquire since I was first diagnosed with Parkinson’s Disease. It’s quite a lengthy list* and, while I’m hoping not to add to it, I’m awaiting some test results that hopefully don’t extend it (at least not yet! I’m 16+ years into PD but not yet 60 years on!).
dyskenisis (involuntary movement)
impediments in walking (balance, stumbling)
impaired hand-eye coordination and depth perception
reduced visual acuity
blank facial expression( the PD mask)
weight gain and weight loss (more gain than loss though!)
loss of sense of smell and taste
rigidity and restricted mobility
That’s quite the list! I’m not putting it out there to solicit sympathy or evoke empathy. Sadly, many of these ailments go hand in hand with Parkinson’s Disease. Although each person’s own experience will be different, many with PD will experience some, if not many, of these. No doubt there will be others.Yet, when it comes to my list, I’m hoping not to see any new additions. I’m hoping. And praying. But if an addition is inevitable…..Oh Lord, won’t you make it, a Mercedes Benz.
* thanks to my friend Nelson Sleno’s list from his book Shaking Hands. I’ve used his (p90-91) as a jumping off point!
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!
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.
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…
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
Exhibiting learning disabilities, such as dyslexia
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 !!! 😦
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!
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?
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.
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.