Tag Archives: brown vest

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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got my tight pants on – part deux

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Originally published December 3, 2014

After exhaustive research and stylist consultations, I have decided to suspend my qualitative research and opt for a more “participatory-based” approach. Why, dear reader, I’m asking you to make the call! Simply print and cut out the images below, place them wherever you like and see what style works! Why it’s even fun for the whole family!

got my tight pants on

Originally published December 3, 2014

Today was a dull and dreary early winter day. No sign of the sun. A chill in the air. Nothing in my calendar to coax me out of the house. Were it not for a scheduled afternoon visit of a few friends, it was one of those days I might have well lounged in my pj’s or perhaps my long underwear all day. Heck, if really pressed, I might even have donned some sweatpants.

But, alas, company was coming so I felt the least I could do was dress-up.

I put on a pair of jeans. Blue jeans. A nondescript shirt (unless you consider “olive- coloured” to be a descriptor) and my everyday “brown vest”. This “brown vest” is what holds the enteral pump that dispenses my Parkinson’s medication by slow-release 16 hours a day. For almost three years, I’ve sported the “brown vest” to the grocery store, to my kid’s school, to weddings and funerals. To walk the dog, go out for dinner, rake the leaves, visit the doctor, have coffee with a friend or lunch with my folks. To the pool, on vacation, to church or the bakery – the “brown vest” is my constant companion. Lest you think I might tire of it, or that it might emit a certain tangy odour, rest assured that the drug company has generously provided me with a number of such vestibules – a few in each of the 3 sizes it comes in to correspond with my corresponding weight gain and loss – but all of them cut from the same stylish brown. Or Mahogony Brown as GQ might call it. Or Townsend Harbour Brown of Benjamin Moore fame. It’s brown though – that’s the only option. Brown. Get it? I think you get it 🙂

At any rate, my friends came. I made some cappuccinos (nicely, browned crema). We talked. We laughed. We got caught up. And then, there was a sudden turn in the conversation.

“Wasn’t it a gloomy day. Wasn’t the yard looking gloomy without the colourful leaves of fall. Wasn’t everything in the news gloomy. And speaking of gloomy, what’s with your clothes? We know you have a bitch of a disease RK, but don’t you think you could brighten up a bit?”

Despite my best intentions earlier in the day, here I was being berated for my dreary wardrobe! Now, those of you who know me, know that I have never been a fashionista. Yet it got me to thinking that indeed, what I wear these days is more often then ever before affected by my health. When I am in so much physical discomfort from my PD, I’m looking for at least a shred of comfort in my clothing. Perhaps, there might be an inverse relationship here worth exploring – were I to “brighten up” my wardrobe, would it “brighten up” my health? Not exactly fodder for a PHD dissertation but certainly blog-worthy material. In Part 2 of this blog, look for the fieldnotes from my qualitative research on this compelling question.

pump it up

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how I get “pumped” every day!

Originally published on May 26, 2013 

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.

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the first few days of the clinical trial, 2011

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what I’m wearing today, tomorrow and every day thereafter
the brown vest that holds my pump in place!