I count myself fortunate to have a good number of friends, family, health care professionals and even neighbours around me that can be called upon to offer support in my day-to-day struggles with PD. Despite this, from time to time, I feel reticent to ask for help. I don’t want to impinge upon anyone or be a burden.
There are also times – particularly at home and with family – when I find myself getting frustrated or preturbed that no one is considering my needs or stepping up to lend a hand (of course, there is always the possibility that my family feels exactly the same way I do – that it is me that isn’t sensitive to their needs. But this is my blog and I’ll cry if I want to!). It could be something as simple as not helping do up a zipper on my coat or taking care of yard work or chores around the house. Don’t they see me struggling with that zipper? Haven’t they noticed the tree debris on the lawn?
Perhaps, since I have always “managed” these parts of my life, there is no sense of ownership to the tasks at hand. Perhaps I have not been as good at delegating or empowering others as I should. Perhaps the sense of altruism and caring that I’d like to think our family has emparted seems only to apply beyond our front door. Alternatively, this may be done entirely with the intent of giving me a sense of control, of independence, of ability – to empower me in my present circumstances.
Whatever the case, I need to be more vocal about how those who are close to me can help out. A tough call to make for one who has been so fiercely independent to date. But it’s also a part of coming to terms with living with PD and the limitations that it sometimes imposes on our lives.
For weeks I’ve been struggling to write a piece that won’t be read as a depressing chronicle of living with Parkinson’s or as a condemnation against some in the PD world who repeatedly mask the impact of this disease with cheery affirmations. In particular, this April – Parkinson’s Awareness month -has oft times been more exasperating than usual as there has been an almost celebratory tone to mark the 200 year anniversary of the discovery of the disease.
I’ve produced a few drafts but nothing that I considered quite good enough.Too negative. Too grumpy. Too disgruntled. I couldn’t see how any of these would contribute or move things forward in a positive way.
Then, quite by chance, I received a copy of a blog from Jon Stamford in the UK. Jon is a long-time advocate and researcher in the Parkinson’s community and our paths first crossed when, as editor of the UK-based publication On The Move, he published one of my articles – A Lesson for the Teacher.
Jon has consented to me sharing this insightful piece that I hope serves as a call to action in the Parkinson’s community. Please read it and share! If you’d like to read more by Jon, check out his website at http://www.jonstamford.com.
200 Years Too Long
Each year at about this time, we talk about Parkinson’s Awareness Day, Week, Month or what have you. And each year we hear the usual talking heads telling us that lots is already being done to make the Parky world a happy place. We should pipe down and be grateful.
That’s drivel. Complacent drivel.
That’s why I am slightly puzzled by the commemoration of the Parkinson’s Disease Bicentennial. In case you are unaware (and if you are, where have you been hiding?), let’s be clear what exactly that is. Parkinson’s disease as we now know it was first described by James Parkinson in 1817 in his “Essay on the Shaking Palsy” although it didn’t acquire the Parkinson’s moniker until some years later when Jean Martin Charcot generously ascribed preeminence on the condition to Parkinson.
Today especially, throughout the globe, neurological associations, patient groups, and charities are falling over themselves with invited lectures, symposia, conferences, monographs, webinars and publications marking this Bicentennial. The whole jamboree has the air of a celebration.
But what precisely are we celebrating? Surely not the fact that this condition has been recognised for two centuries yet still has no cure. Indeed, until 50 years ago, there were barely any symptomatic treatments.
To my mind, this is less a cause for celebration than for collective mourning. We, the Parkinson’s community, should not be proud that a neurological condition has been known for 200 years yet has no cure. This is a damning indictment not a ringing endorsement.
That we have no cure is a collective failure. It’s all too easy to place responsibility at the feet of the research scientists or of the drug companies. But this would be wrong. We patients must bear our share of the responsibility. Clinical trials fail for a number of reasons. Sometimes poor experimental design is responsible. Sometimes inappropriate statistical analyses are to blame. But as often as not, trials fail because of inadequate recruiting. And that one is down to us, the patients.
Our failure to find a cure – and let’s be clear, this is a failure – is the collective responsibility of the entire Parkinson’s community, from doctor to patient and from scientist to caregiver. We have all failed in some way to advance the field as far as we should have.
We have failed also to raise awareness of Parkinson’s in political and governmental circles. Hansard has recorded all the business of the Houses of Parliament for the last 200 years and, during that time, Parkinson’s as a health issue has not been discussed once in the Commons until this year.
On 6 March this year, Nick Thomas-Symonds, MP for Torfaen, raised the issue of Young Onset Parkinson’s Disease in an adjournment debate in the House of Commons, largely at the instigation of Spotlight YOPD, a charity founded to cater for the interests of younger Parkinson’s patients who feel largely neglected by the country’s major Parkinson’s charity. It’s hard to believe that this year is the first in 200 that Parkinson’s has been discussed at a parliamentary level. Hard to believe but sadly true.
We need to work harder to cure this illness. Parkinson’s will not go away until the entire community from caregivers and partners to pharmaceutical multinationals and research scientists pull together. Everybody has a part to play and, until we all play those parts, we will not see an end to this condition.
11 April 2017 is a day when scientists, physicians and drug companies will doubtless congratulate themselves on the progress they have made over the last two centuries. And, don’t get me wrong, we have made progress. But the truth is that we have not made the progress we want and need. Every year around a quarter of a million people with Parkinson’s die. And they die because we don’t have a cure for this illness. So 11 April 2017 is not a day to celebrate Parkinson’s disease. It’s a day for us to look at ourselves in the mirror, reflect on the human calamity of Parkinson’s and to renew our vows to beat this illness once and for all.
Woke up. Fell out of bed. Dragged a comb across my head. Found my way downstairs and drank a cup, and looking up I noticed I was late.
So began a day in the life as immortalized in the classic Beatles tune.
This spring, there’s another UK export that has caught my attention.
As you may or may not know, April is Parkinson’s Awareness month. Lots of folks with Parkinson’s are making an effort to promote PD awareness in any number of different ways. Last year I recall publishing a daily blog entry each week day for the month. This year I’m not nearly as ambitious!
Two individuals from the UK are, however, very ambitious as they have committed themselves to publishing a daily vlog (or video version of a blog) for a full year and dubbed their initiative “PD 365”. Emma Lawton, diagnosed 4 years ago at the age of 29, and David Sangster, also diagnosed at 29 but 6 years ago, have just recently gone live with their video diaries.
To help raise awareness, they both intend to chronicle their daily adventures in living with Parkinson’s and promise to provide an honest portrayal of how PD effects their day to day lives and that of their friends and families. I’m personally looking forward to tuning in regularly to get their perspectives as this creative, yet arduous project unfolds!
Here’s a link to Emma’s introduction to the project, as well as David’s first entry. If you like what you see, please support them in their efforts by subscribing (no cost) to their vlogs.
As well, here’s a link to a story on their vlog initiative in Parkinson’s Life if you are interested in more backgrounder. Cheers Emma and David!
A chronic neurological disease characterized by movement disorders.
A complex medical condition with unknown origins and a wide variety of symptoms dependant on the individual.
What is Parkinson’s Disease?
(camera pans out to Alex Trebek and the Jeopardy game set)
“Yes! That is correct! That is the question we were looking for!” declares host Alex Trebek. “And now, for perhaps our biggest challenge to date, what pray tell, might be the cure for Parkinson’s? Or, perhaps at the very least, the next breakthrough in treatment for this horrible condition. Let’s meet our new contestant….”
Suspenseful music builds. Drama ensues. Who will be revealed as the next Jeopardy contestant?
“We’ll be right back after these commercial messages”…
Interesting news coming out of Toronto and the Toronto Western Hospital (TWH) Movement Disorders Clinic (where I happen to be a patient).
Those of you who follow the popular game show Jeopardy in the U.S. will know that a few years ago, IBM built a computer to understand answers on Jeopardy and come up with the right questions. They gave this new “contestant” the moniker of Watson (think Sherlock Holmes’ “Elementary, my dear Watson”!). Since his appearance on the game show in 2011, IBM has expanded Watson’s talents, building on the algorithms that allow him to read and derive meaning from natural language. The computer system can pore through documents millions of times faster than any human. Among other functions, IBM adapted Watson for use in medicine.
TWH is the first hospital in Canada to use Watson for research in Parkinson’s. The centre has a track record of running clinical trials for off-label drug use, which means taking a drug approved for treatment of one condition and repurposing it for another. Researchers here believe Watson can help them speed up this process to find a cure for Parkinson’s.
This all began about a year ago when one of the patients at TWH, Jonathan Rezek, a 56-year-old IBM executive, pitched the idea during an examination with his doctor at the centre. As he noted, “Parkinson’s is a really slow moving disease. It’s hard to do research on it. So anything you can do to make research go faster is a positive.”
Rezek’s story, and the interesting trail that led to this unique deployment of Watson’s abilities, have been told in a April 15 2017 Toronto Star feature article Can Watson, the Jeopardy champion, solve Parkinson’s?. The article tracks the early development of Watson over 10 years ago as somewhat of a game-show novelty cum corporate data management promotional tool to an important medical research tool. Watson has, it is noted, ” the potential to manage the exploding increase in digital information, including electronic patient records and the thousands of scientific studies published every day.”
Here’s a brief excerpt on how Watson is being deployed in Toronto to tackle PD:
…(Watson) doesn’t know what to look for on its own. Doctors and scientists have to “train” Watson. In this instance, he was tasked with reading more than 20 million summaries of scientific studies that were available free online…researchers trained him to look for any mention of alpha-synuclein, a common brain protein that clumps together in Parkinson’s patients, an action that scientists think causes the disease. Watson then looked in the same text for a mention of an approved drug in Ontario.
“It really is the most simplistic strategy,” says Tom Mikkelsen, president and scientific director of the Ontari Brain Institute. “What it is looking for is the statistical nearness of the words.”Watson ranked the list of 52 drugs from best to worst… 21 of the drugs are worthy of further study, and of those, 16 had never been linked to Parkinson’s before. “I was asked the question one time, how would you approach this same problem that you’ve posed to Watson without Watson,” says (researcher) Visanji. “And the answer is we wouldn’t have. We couldn’t have physically done it.”
It’s a shortcut that could shave years off approval of a new drug to treat the disease, a process that typically takes at least a decade and costs millions of dollars. Typically, one in 10,000 drugs studied in the lab will make it to a clinical trial, a drop-off that scientists call the Valley of Death. “If there’s something out there that’s already gone through its toxicology testing; that’s gone into humans; that’s completely safe … then bingo,” says Visanji. “Why would you look for something else?”…
The next step for the team at Toronto Western, if they can find another $300,000 in funding, is to take Watson’s list of drugs and narrow the search even further. Scientists can look at patient data in Ontario to see if the incidence of Parkinson’s is lower in people on any of the 52 drugs, which could mean the drug is beneficial in some way. They’ll also test the best 20 or so candidates in the lab to see what effects they have on alpha-synuclein aggregation. The best candidate will be chosen for the off-label clinical trial. “You could get a clinical trial up and running in six months after we’ve picked the best candidate,” says Visanji. “I see this as something that could happen. It’s a reality. I really hope it does come from this. “And if it does, the short cut is insane.”
Crazy, eh?! Exciting stuff happening here! Cue the music…back to you Alex! Time to introduce our next contestant! All the way from Toronto, Ontario, Canada – Watson!! (Author’s note: I hope this is the right link…I’m still struggling with this new technology!) Click here and play!
In the news today, from my former hometown Hamilton, Ontario, comes a great story about seeking clues for the development and treatment of Parkinson’s Disease. Hamilton is well known for its excellent health facilities and research intitatives though, in Canada, it has not been a hub for PD. It was a surprise to discover this research emanating from “The Hammer” but even more I marvelled at the source – a 9th Grade student, Anika Gupta, of Westdale Secondary School!
That is correct. A Grade 9 student. I don’t know what you were doing in Grade 9 dear reader but winning a Science Fair or conducting scientific research were nowhere on my radar (unless of course you call trips to Quebec to smuggle and sample large quarts of beer research). Having a father who is a Professor in Biology at McMaster certainly may have sparked her interest and provided her with a good foundation and good genes, but this doesn’t diminish her own accomplishments in the least.
Using a tiny species of roundworm as her model, Gupta’s research showed that a certain gene in the roundworm and a certain small chemical compound were able to protect the same types of nerve cells that are damaged when a person develops Parkinson’s. She’s now working with a McMaster professor of chemical engineering in the early stages of developing a nasal spray that could deliver the chemical compound to the brain to perhaps delay onset of the disease.
Great stuff Anika! When you have they time, let me buy you a beer to congratulate you! I am well versed on some of the more intriguing and hearty craft lagers from Quebec.
To read the full article on Anika Gupta’s work, click here.
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.