200 years too long

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Image courtesy boardgamegeek.com

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.

Jon Stamford

 

 

 

A Day in the Life

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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!

 

 

 

That is correct, Alex

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image from famousfix.com

A 200 Year Old Mystery.

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!

 

 

 

this ain’t me in grade 9, baby

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Photo by John Rennison, The Hamilton Spectator

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.