Tag Archives: technology

see me, feel me

 

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Image of Sympulse from Klick Labs

In my last blog, Tell Me What You Want, I reviewed the need for PWP (People with Parkinson’s) to be more vocal about their needs.

While we might wish that others in our lives would be more empathetic, we can’t leave it solely to their own initiative.

Well, surprisingly, someone was listening. And right here in Canada! I’m not exactly sure that this is what I had in mind but if the shoe fits (or, in this case, the armband), wear it!

CTV news reported recently that Klick Labs has developed a tool that can simulate the experience of PWP so that their caregivers can get a sense of what it actually feels like for that person.

This device, dubbed  The Sympulse, records the tremors of Parkinson’s patients and then wirelessly transmits the data to a second device worn by a caregiver, to allow them to “truly feel what the patient is feeling”. The device, which resembles a blood pressure cuff, is strapped around the forearm, with a battery and motor pack providing the tremors.

I probably should have stopped reading the article here. My skeptic antennae were buzzing. The article continues…

Klick Labs VP Yan Fossat says the point of the “tele-empathy” device is to help those caring for people with the nerve disorder to get a real feel for the condition.

“This is intended to create empathy, to make you feel that having tremors is actually very debilitating; it’s not just a mild inconvenience,” he told CTV’s Your Morning.

“Feeling the disease with your own arm, with your own hand, is the best way to truly understand what it’s like,” he added.

Okay Yan, thanks for the thought. I’d be negligent if I didn’t point out though, Parkinson’s Disease is about much more than a “nerve disorder” or having tremors. One doesn’t have to look far to see that PD is a complex, chronic neurological disorder compounded by a myriad of other conditions including rigidity, dyskinesia, isolation, depression, apathy, mobility problems – to name but a few. PD also varies so much from one person to the next  (for my own personal “list”” see my blog here). Feeling the disease is, of course, impossible without living with it which we obviously wouldn’t wish upon anyone but pretending that running a few volts of current through some wires and giving the odd jolt to someone’s arm will help someone “truly understand” PD is a bit of a stretch. If the purpose is to feel my tremor, reach out an touch my arm. Or hold my hand.

There is, I’m sure, a use for such a device in “simulation” exercises such as those employing smoke-stained goggles to simulate limited vision or noise-reduction headphones to suggest hearing loss or padded gloves to simulate dexterity restrictions. Using the Sympulse in this context, and with the understanding that tremors are but one symptom of PD, might provide an opportunity to foster empathy. I’d suggest it will take a little more work than this purports.

 

To read the aforementioned article in full, click here.

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!

 

 

 

eight miles high

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a zeppelin over san francisco, futurowoman, deviantart

Call it luck or call it reason, but I just missed by a few years the sentinel plea of a generation by Timothy Leary to “tune in, turn on, drop out”. Still, the creative burst of writers, musicians and artists of that era have been a soundtrack to many  years of my life. Expressions of love, peace, community and equality – to name but a few – continued to reverberate in my early years.

As time past, I had more than a few blows on my psyche that may have dislodged or completely derailed such thinking – travails of a working life, the premature death of friends and a partner, the loss of extended family – but then came my diagnosis of Parkinson’s Disease some 16 years ago. Now, that was a freak-out! A real bad trip, man. Bummer.

Ever since, my days have been characterized by a different kind of drug – those of a pharmaceutical nature (see  Go Ask Alice  or Pump It Up ). Not those inspired by acid rock or a psychedelic-infused or melancholic nature or condition. Just a batch of prescribed concoctions aimed at addressing my PD symptoms (or side effects of the same).

But recent news has me contemplating whether that might be changing. There’s something in the air these days – could it be the winds of change or is the answer in fact, blowin’ in the wind? (that’s the last 60’s metaphor I’ll use I promise).

First, there was the news that many patients with PD were experiencing the benefits of medicinal marijuana. Studies have trumpeted it’s success at pain relief, issues of anxiety and as an aid for those suffering from sleep deprivation. More and more people with PD seem to be turning to marijuana for relief.

Then, I read today, of a new set of headphones that have been developed that stimulate the release of dopamine in the brain. They will pump music into your ears as normal, but at the same time, “will deliver a low-power electrical signal through your ear canal to stimulate the Vagus nerve – a nerve that runs from the brainstem to the abdomen and plays a role in the release of dopamine, a neurotransmitter that helps control the brain’s reward and pleasure centres”. In other words, if this works, just by listening to music on these headphones, we’re going to get high! How high is debatable given our dopamine- challenged condition.

Now, you might be skeptical that such an item as headphones could get you high but here was the kicker for me. This article appeared in a serious audiophile periodical and here’s what the seasoned journalist who wrote the piece said after testing out the headphones:

 I felt like I reached a personal high point. I couldn’t stop smiling or laughing. I was like, ‘Oh wow’. For about 5 minutes, my happiness level was a 10 out of 10. Then it got foggier, but I was still unusually happy for about an hour.”

Oh wow, man! (I know, I promised. Chill) Don’t bogart that joint, my friend! Pass it over to me! If anyone’s looking for me, I’ll be down in the rec room in my bean bag chair with my new headphones on. Make your way through that purple haze and that’s where you’ll find me. Eight miles high.

 

 

 

A word from our legal department: this blog entry is not written or reproduced herein, to encourage or propagate the use or misuse of any and or all legal or illegal stimulants such as cannabis or dopamine-stimulant headphones under any or all circumstances. Any representation by the author of any activities or recreational pursuits undertaken in said locations, under said influences, are fictional in nature and are intended for the entertainment of the reader. Thank you for your attention and understanding and excuse me while I kiss the sky.

 

 

reelin’ in the years

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originally published Sunday, April 21, 2013

This could be one of those “back in my day, we used to walk 2 miles to school..uphill..both ways!” stories.

Or it could be a story about the frenetic pace of technological advancement and the gargantuan efforts of a man and his aging demographic counterparts to not get swept away in a tsunami of change.

Or it could even be a made-for-tv story, set to an emotional soundtrack with swelling orchestral and sentimental strings, wherein we learn of one man’s efforts to fight against the ravenges of Parkinson’s Disease that threaten to overtake him and his young family.

It could have been all these things and perhaps more.

But the truth is, it’s none of these. Perhaps less.

The truth is, that in a day and age in which people instantaneously tweet their comings and goings, daily facebook updates are posted, Skype and emails abound – I am as frequently feeling eclipsed by the volume. I feel as though, with each passing day, this gulf grows between what friends, family and colleagues have put “out there” and what I have been unable to do, neglected to do or even deemed worthy of sharing.

Initiating this blog is my attempt, such as it is, to bridge this gap. At least initially. A chance for our divergent paths to once again cross. A chance, for those who have paused to wonder “what ever happened to..” to perhaps fill in some blanks. An opportunity to right all my wrongs in one fell swoop! And then. move forward. To where, and for what, I do not know. I’m sure some don’t particularly care. But, if you’ve read this far, thank you for caring. Let’s start reelin’ in the years!

Where have all the children gone?

I remember undertaking a career change some 13 years ago with the express purpose of spending more time with our children as they grew. I’m sure its a familiar refrain that I sing, but who knows where the time goes? Our oldest is at U of T, and our youngest will be entering his final year of elementary school. Sisters and brothers, yes. But very much becoming their own persons!

I had an incredibly insightful, and emotionally evocative paragraph to add here with my thoughts on parenthood, the pride I have of our children, yadda yadda yadda but as this is an open blog, my kids have vetoed its’ inclusion. Gives you some sense of who’s steering this ship 🙂

Parkinson’s takes hold

I was diagnosed with Parkinson’s Disease in September 2000 at the age of 43. I was advised by my original neurologist that I would be in a wheelchair in 5-10 years. While initially devastated by this news, as time went by, I became increasingly combative with this news. Each anniversary found me proud of my continued mobility and, as I approach the 13th anniversary, that wheelchair remains a part of some distant future.

Still, in the past few years, PD has seeped into, and solidified a presence, in every aspect of every day life. With the exception of 4 hours at night when I am asleep, PD brings with it varying degrees of stiffness, slowness of movement, muscle pain and weakness, reduced dexterity, tremors, cramping, dystonia (curling of toes), cognitive dysfunction and weariness. My cocktail of meds have no doubt helped, though their effectiveness wains over time and doses require regular adjustment. Fortunately, I have had good care provided from a neurological team at Toronto Western, and, in September 2011, I was given the opportunity to participate in a clinical trial for a new drug-delivery system for PD wherein my main PD meds are delivered via slow release by a pump i have strapped to my body. This began with a week of nasal injection of the drug before surgically implanting a tube that henceforth is used for on-going infusion. I am also able to periodically adjust the dosage throughout the day when I require higher levels.

While I was pleased with many of the benefits I received from this new treatment, problems at the site where the tube entered my body became too much to bear and in July 2012 I had the tube removed and temporarily resumed my regular course of oral medications. In January 2013, the tube was again implanted and I returned to the clinical trial. To date, things have been going very well, thanks in part to early intervention and constant support from my neurological team and community in-home nursing provided through CCAC.

In addition, I am fortunate to have a health support system that extends well beyond this clinical trial. From my family doctor, local pharmacist, physiotherapist, massage therapist, and of course my family and friends. It’s hard to imagine going down this road without them.

My drug of choice

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Don’t get me wrong – I’m grateful for all the scientific advancement in the treatment of Parkinson’s, but one of the best therapies for me continues to be keeping a sense of humour about it all for as long as I possibly can. I say a sense of humour because sometimes my humour can be kinda dark and perhaps not always appreciated (or just out and out not funny!). And I say try (or at least imply try) to keep a sense of humour because sometimes things like dystonia just aren’t that funny at all!

Yet, in the face of mounting advancement of PD, keeping a sense of humour is increasingly challenging. Discouragement, loneliness, depression and social isolation have, to one degree or another, all been a part of my life of late with these advances. I need to make a concerted effort to get exercise, to connect with friends and family, to pursue outside interests and get engaged in projects or activities where I feel I am making a contribution to the community. The best example of this was undertaking the collection of archival material, and the subsequent celebration of the 33 1/3 year anniversary of Hamilton’s community radio station CFMU 93.3 at McMaster University. For 18 months prior to the celebration in May 2011, I connected with many people from those early days of the radio station to collect material from that era and assembled a 3 disc package and program book that was released on the anniversary. The project was a labour of love and the opportunity to reconnect with so many friends and colleagues from that time was wonderful.
Yet, when the anniversary was over, it left to a certain degree, a void in my life that hasn’t yet been filled. I’ve taken on a few volunteer activities, done some work around the house, helped out with some of our kid’s activities and taken the opportunity to travel as much as I am able. Still, I need to be involved in activities where I can have a better sense of contributing to the community.

Next time ’round I’ll be writing more about that (and more!). Until then,

All good things,

rk