Tag Archives: future

What’s Goin’ On??

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questions drive me crazy, x-posion, deviantart

It’s time we knew more about what is happening with Parkinson’s Disease today. I’ve read a few news stories recently that should have us all concerned.

The first story emanated from New Brunswick, Canada, where a 3 year old boy has been diagnosed with Parkinson’s Disease. That is not a misprint – a 3 year old with Parkinson’s!  Doctors, family and everyone else is justifiably puzzled by this development.

What in the world is going on? I was myself shocked when I was diagnosed at the relatively young age of 42. Since then, it seems that I read more and more of individuals being diagnosed at younger and younger ages. But 3 year’s old seems perverse.

The second story comes out of the University of Rochester where researchers, studying the growing prevalence of Parkinson’s, suggest that PD may be the next pandemic in our society.  “Pandemics are usually equated with infectious diseases like Zika, influenza, and HIV,” says Ray Dorsey, a neurologist at the University of Rochester Medical Center. “But neurological disorders are now the leading cause of disability in the world and the fastest growing is Parkinson’s disease.”

The researchers point out that “between 1990 and 2015, the prevalence of Parkinson’s more than doubled and it is estimated that 6.9 million people across the globe have the disease. By 2040, that number of people with Parkinson’s will grow to 14.2 million as the population ages—a rate of growth that will outpace that of Alzheimer’s.”

The article concludes by calling on the Parkinson’s community to  dramatically step up efforts to advocate for more attention to PD including the following measures:

  • Support a better understanding of the environmental, genetic, and behavioral causes and risk factors for Parkinson’s to help prevent its onset.
  • Increase access to care—an estimated 40 percent of people with the disease in both the US and Europe don’t see a neurologist and the number is far greater in developing nations.
  • Advocate for increases in research funding for the disease.
  • Lower cost of treatments—many patients in low-income countries don’t have access to drugs that are both lifesaving and improve quality of life.

While it’s hard to find fault with these recommendations in the ‘call to action’, I think it is difficult to expect people with PD to take the lead on this score. Many of us – particularly those who have had the disease for some time – are locked in a daily struggle with it. We also tackle the side-effects of existing treatments and face new challenges as the disease advances that tax our resources even more. Sure, we can lend our voices (as weakened by the disease as they may be), but we need to have a broader chorus of concern for what is going on with PD. The increase in the number of people with PD, as well as the broader swath of the population that is affected, are surely cause for concern.

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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!

 

 

 

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

 

 

 

 

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”.

 

 

 

i’ve seen the future and it’s murder

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The Fortune Teller by xXxPaint-it-blackxXx, deviantart

I am not clairvoyant. I have not consulted with, nor have I in any way tendered or secured the services of a fortune teller or soothsayer.  I am not hallucinating in some apocalyptic, drug-induced delusion.

I have seen the future – it’s not the lively cinematic version served up in Back to the Future, the fanciful and technological marvel of The Jetson’s, nor the darker Metropolis or Blade Runner for that matter. Nor is it the one recounted by Leonard Cohen in his song The Future (from whence today’s blog draws its title). But I have seen the future, and it is murder.

A few weeks ago, while prodding around leaves in my back yard, I had my first PD fall (and wrote about it here in case you missed it). A few days later, my chest and neck pain persevered and I consented to go for x-rays. I was fortunate to discover I had not broken ribs – just bruising and some soft tissue wounds.

That being said, the pain was pretty intense. I couldn’t reach out, bend over, stretch, sit/stand. I could walk but a few steps. Even laughing hurt!  I was forced to cut back on most, if not all, my regular activities around the house as well as my exercise and fitness regime (such as it is). For the first week, I did little more than sleep, sit, and read. In the second week, I began to have some relief, albeit minimal and my activity level remained stuck at zero. Now, in my third week, I’m finally feeling like I’m beginning to heal. The pain is still very much there but it has moderated and I am attempting  to resume some of my normal activities.

Now, before this blog descends into a session of self-pity and woe-is-me (one reader actually once did describe my blog as being “a bit whiney”), or even a sanctimonious lecture on safety while working in the yard, let me get to the point. While I was down and out of it those first two weeks, more than once the thought crossed my mind that this might be my future. I had, after 15+ years with PD, my first of what will likely be many falls ahead and this body of mine isn’t exactly becoming more resistant to punishment or abuse. Is this what I had to look forward to?

Being inactive – physically and socially – even in a short two or three weeks – starts to feel debilitating.  Besides wondering how long it would be until I could resume some of my normal activities, I couldn’t help but project what this might look like further down the road. When the day comes when I am not able to be as active as I might like, how will I  respond to that?

Notwithstanding these concerns, I suppose it’s the old adage of “live while you can” or “make the most out of it”  that has to spur us on. Parkinson’s will. inevitably, and in all likelihood, have its way with our bodies. If not, certainly age will catch up to us.Yet my latest foray has given me a glimpse into the road ahead. I’ve seen the future, and it’s murder!

 

Interested in more articles about Living with Parkinson’s? Click here

Interested in more about Murder? Click here