The __________ Challenge

images-2
image from awakeearly.com

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.

 

 

 

oh lord, won’t you buy me a mercedes Benz

benz_by_ekkikind-d5pbfnl
Benz, ekkikind, deviantart

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
  • weakened voice
  • blank facial expression( the PD mask)
  • muscle cramping
  • drooling
  • dry mouth
  • dental problems
  • choking
  • insomnia
  • over-active bladder
  • weight gain and weight loss (more gain than loss though!)
  • loss of sense of smell and taste
  • fatigue
  • rigidity and restricted mobility
  • postural problems
  • weakened dexterity
  • cognitive impairment
  • mood changes
  • depression
  • social withdrawal
  • gastro-intestinal problems
  • colitis

 

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!

You want it darker

fade_into_darkness_by_lostknightkg-d5wb5vr
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