Tag Archives: waiting

Let’s Get Dirty

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It’s a shame I’m not into bondage. Believe me, I’ve tried on a wide variety of apparatus in the privacy of our bathroom in front of a full length mirror. I’ve contorted my body into any number of positions, tried to follow convoluted instructions that have me attempting to insert Tab A into Tab B while depressing Clasp C. When I finally do break through and successfully secure each tab, clasp, strap and zipper, I face an even greater challenge. Getting the gear off.

I have been using the duodopa pump to deliver my Parkinson’s medication for over 7 years now. Long-time readers of this blog will be familiar with my lamentations on the awkward and heavy pump that I must transport with me for 16 hours a day. Almost every day I get so frustrated by this albatross that I just want to scream “I’m fed up with this f—ing pump”,  rip it off and be done with it! *

Initially, there was one single option for carrying around the pump – a chocolate brown vest. While not exactly a fashion statement in and of itself, it did get a number of hits and some serious blog attention in those early days – see Got my tight pants on.

In fairness, I suppose there were other options I could have explored for transporting this device – I could have  had my great aunt crochet me a sling to carry it over my shoulder or I could have gone to Paris and found myself a classy “man-purse” to add to my accessories. Or I could have forgone this entirely and just carried it around in my hand like a quasi-calculator-totting-geek. Yet I chose the brown vest supplied by the manufacturer.

With each passing year, my frustration with the limitations of the vest grew. Yet, as the clinical trial ended, and as the pump became more available and more popular as a treatment for PD, I felt buoyed by the fact that such an explosion of interest would surely be followed by a parallel development of a smaller, lighter pump. After all, we live in an age where technological advancements have yielded evermore compact and portable options in a range of devices. Apple, for example, unveils new cellphones every year and most times they are smaller devices with larger capacity. I’m not looking for the Duodopa  10 or the 10X but the Duodopa 2 would sure be nice.

I’ve heard vague rumours that a prototype for a smaller pump are “under development”. I’ve heard the same rumours for the past 3 or 4 years. I think my PD friends in parts of Europe have heard the same rumours in the nearly 20 years this same pump has been used there.

Instead, the steady increase in the use of the duodopa pump has netted not a smaller pump but a growing variety of options for carrying the pump. I’m sure I have every one of these (save the macrame sling!) and, while I welcome the increasing number of choices, there is no one option that is –  for me – the perfect one. It is certainly good to have a few options that one can alternate between. Why I now even have a vest in a different colour than brown – this one is a striking beige!

The latest accruement is an interesting one that arrived in the mail the other day in a plain brown package. It’s interesting in that it positions the pump in a whole new area. It’s an athletic bra-like accessory that holds the pump securely in the middle of the chest area. Off the stomach area and above or below the breast depending upon one’s cleavage and respective comfort.It also has a lot of straps. And buckles. And clasps. And zippers. And I can have it really tight or really loose or really really tight.

I’m pleased to have another option and I look forward to trying this one out. But why is it that I feel so dirty?!

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tight like that

 

 

* though after going a day or two without it, I am reminded of the benefits the pump provides – principally through the slow and continous release of the medication directly into my bloodstream.

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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!

 

 

 

I’m crushing your head

Waiting.

I’m getting better at waiting.

Waiting for a doctor. Waiting at the lab. Waiting for test results. Waiting for class to start. Waiting on my kids while taxiing them around town. Waiting on medications to be delivered. Waiting for someone to call. Waiting.

In days of yore, when I tried to run my life with a honed efficiency, waiting used to frustrate me.

Today, I’ve become much more patient in this regard. I’m also generally much better prepared for waiting. I travel everywhere with my smartphone and a book.

Recently, I found myself in downtown Toronto waiting to meet up with someone. For the first time in a long time, I had neither my phone with me nor a book. I had no pen or paper to write. I had nowhere else to go and nothing else to do but wait. As I sat there waiting, I actually enjoyed “people watching”. The steady stream of business men and women, young students, some tourists, homeless folks, bicycle couriers, etc. The odd person would exchange glances with me – perhaps drawn to my “frozen mask” or my dyskenesis but most just walked on by as you might expect.

I didn’t have to wait too long. Perhaps 5 or 10 minutes before the person I was to meet arrived. Yet, in that short period, I came to realize that, at times, I can actually enjoy waiting. It’s a small window to slow things down. To take a physical or mental break. Just enjoy checking things out as the world passes by.

Or perhaps, crush a few heads.