Keep your Requip, give me Photoshop

CFMU003

Originally published July 13, 2013

Drug therapy for Parkinson’s patients has no doubt met with a good deal of success in recent years. Participating in a clinical trial such as the one I am involved in is indeed a testament to this declaration (see Pump It Up, May 26 2013) . However, for all the advances, there are many days when I am all too aware of the ravages of Parkinson’s.
I get reminded when I take out my iphone.
I get reminded when I’m at the computer.
I get reminded when I look through a family photo album.

There, amongst photos of friends, family, both near and distant places, I receive jarring reminders of the physical effects of PD. Here’s one of me with a contorted limb. Here’s another where my flailing arms have been “caught” in mid-stream. As always, there is a bountiful supply of snaps where my face is twisted or misshapen in some strange position. This is a comment element faced by many Parkinson’s patients – the “Parkinson’s mask” – a “frozen face” that looks pained, emotionless, without expression especially when surrounded by a sea of glowing faces. Perhaps worse, is the forced smile that is vainly attempted to push its way through the Parkinson’s mask. I don’t know how many family photos I have ruined annually since I began this journey with PD! Mom happy, kids happy, Dad..?? what the f—- is wrong with him??!!

What we need is a simple solution to this. Prescriptions for Photoshop. Tutorials in PicMonkey. A photography “kit bag” that features adjustable limbs, insertable smiles. Rapid relief from that awkward forced PD smile. A healthy dose of Photoshop into our lives to ease the burden, ease the pain.

What if there is no cure?

 

images

Originally published June 27, 2013

Earlier this year, I had the opportunity to participate in an on-line forum (dubbed “Google Hangout”) where I posed a question to Michael J. Fox and he, in turn answered . While both the question and his answer were more complex (or perhaps convoluted), in essence, I was challenging our societal response to illness. In this case, specifically to Parkinson’s and the Michael J. Fox Foundation but I do think it can be extrapolated to other disease areas.

When I was first diagnosed with PD some 13 years ago, I was thrilled to see the almost simultaneously-incorporated Fox Foundation burst onto the fundraising scene with a fervent and determined proclomation to find a cure for PD within 10 years. They forged an organizational structure that would fast-track research efforts that showed promise, they built a successful team of fundraisers and a solid core group of philanthropic supporters. Research was, and continues to be, carried out in a broad spectrum and at a prolific rate.

Good stuff. No question. Yet, what I do find disconcerting is the ‘drift’ away from the original goals and the raison d’etre of the Foundation – to find a cure. There is more talk now of early diagnosis in order to improve treatment of PD – on drug therapies to alleviate the symptoms of PD – on coping strategies for living with PD. Again, all worthwhile pursuits but no longer the consequential cure.

I don’t want to sound Pollyanna. I don’t believe it is an easy task. I recognize that the Foundation has accomplished a great deal. I have donated to the Foundation and even run fundraisers on their behalf. Yet, I worry that the initial goals and challenges that were set out have been lost or corrupted along the way. Does the draw of the pharmaceutical industry dollar pervert the purpose? Does the Foundation become an institutionalized entity in the PD research community rather than a vehicle set up to bring about it’s own demise through uncovering that cure? And what if there is no cure?

I don’t pretend to have the answers but, if anyone out there is taking a survey, put me down as one who still “wants a cure”.

R.I.P.

sk-sleeping-man-2010

Originally published on June 2, 2013

One of the things I miss most from my pre-Parkinson days is a good night’s sleep. I’m not talking about that alcohol-fuelled sleep brought on by a night of youthful revelry nor the spent exhaustion that followed an overly busy day of play as a child. Nor am I referring to the sleep that came to a weary body after a taxing day at the office followed by a night out for dinner and a show. What I am referring to is a “normal” 7 hours of restful sleep.

While it’s been 13 years since I was officially diagnosed with Parkinson’s, PD came to me some time beforehand. Years of a twitching baby finger, disturbances in sleep patterns, soreness in my extremities, and a fading sense of smell. All calling cards of a sort. It’s hard to pinpoint exactly how and when PD came to rob me of my sleep but there’s no use losing any sleep over it! I’m in bed with PD now and that won’t change.

Through the years, I have experienced relative highs and lows. During my lowest period, I went several years getting an average of 3 hours sleep a night (3 hours in total – not 3 hours uninterrupted). I have tried numerous pharmacological and naturopathic resolutions with varying degrees of success. At present, I am the best I’ve been in years. I take a low dose of Zopiclone (a sleeping pill) which pretty much ensures I will get 4-5 hrs of sleep that is mostly uninterrupted. I say mostly because, while I can pretty much count on some kind of interruption during the night (if not for the very vivid dreams I have, it’ll be the dog barking at something in the dark, someone using the bathroom or a car passing on the street). Yet these interruptions are relatively short and I tend to fall back to sleep within 10-15 minutes.

Yet, as satisfied as I may sound with the current state of affairs in zzz-land, I know that not all is well that ends well. I find myself easy to tire and less patient then I ought to be. I am sometimes more testy or on edge than is warranted. And most often, it is those closest to me – myself and my family – that bear the brunt. A resolution? Think I’ll have to sleep on that…

So what becomes of you, Mr. K?

Originally published on May 15, 2013

It’s now been five years since I went to work one October day and realized I was no longer the teacher I wanted to be. That wasn’t the only thing to have changed with advancing Parkinson’s.

I was no longer the father I wanted to be.
I was no longer the lover, the brother, the son, the friend I wanted to be.
I was no longer the person I wanted to be.

Yet foremost in my mind that day were the kids I was to face – still new to me as this was a new year at yet another new school for me. My third change of schools since going on part-time disability with Parkinson’s Disease. I was starting to show increased signs of PD and felt more challenged than ever before. How do these kids perceive me when I’m in this condition? Am I seen as a teacher with little patience? An irritable or frustrated teacher? A teacher with little emotive responses? Was I “lost” or scattered as I made my way from Grade 2 music to Sr.K playtime to Grade 3 Social Studies to Grade 1 gym to Grade 2 Science? How was I helping them? How was I demonstrating my professionalism, my skills as a teacher, my love of teaching and my joy in working with these young ones?

As I started to pack up my trolley with the mornings materials for each of the classes, I decided I could not. I could not continue. I could no longer be that teacher I had been. I was doing no one any favours. It was time to recognize that this wasn’t helping anyone. I proceeded to the Principal’s office and informed him that regrettably, I was done. It was not fair to the children or my colleagues for me to continue. I was met by complete understanding and within an hour, I was packed up and gone from the school (though my moniker “ Robert Kendrick 1.0 FTE” likely still surfaces on papers at the school to this day to the puzzlement of many!).

This was not an impulsive, spur of the moment decision as I had been preparing for the eventuality that I hoped would not come. Yet it did come and on that October day, I made a life-altering decision. I don’t know that there was any other one I could have made.

But I do know I was no longer the teacher I wanted to be. No longer the teacher these kids needed me to be.

002

pump it up

Duodopa2
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.

DSC_0506

the first few days of the clinical trial, 2011

IMG_9907

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

reelin’ in the years

steely-dan-reeling-in-the-years-1973

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

cfmublue
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

a few words from my lawyers…

Greetings! Yesterday I launched my new blog site. I do like the platform but I understand a few folks received multiple invites to subscribe or didn’t receive one at all. My apologies – can’t figure out why that happened but thanks for your patience. Subscribing to receive my blog should be as simple as providing your email once or following me on the site. I hope this has been rectified now.

Further, as a reminder and “heads-up”, during the month of April, Parkinson’s Awareness month, I’ll be posting previously published entries from the past few years. There will be one posted every weekday for the month. For past readers, I’ll take absolutely no offense if you delete these without reading (though I am marketing it as a “Greatest Hits” effort so you may want to read them again and again!). For new readers, there will be a test at the end of the month 🙂

In May 2015, I’ll resume my irregular postings of all new material all the time! Thanks for your time and interest and I look forward to hearing from you!

All good things,

rk

new morning

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Mornings, December Sun, Flickr

It’s been over 100 weeks since I launched my blog “ssshakinallover”. It’s been a fun ride but it’s time to shake things up a bit. I’ve appreciated all the positive feedback I have received and the small but loyal readership I’ve had. Yet, I feel that my audience has been limited by a number of factors including the site which has hosted me for this time. In an effort to broaden this base, I’m switching to a wordpress.com address. I hope past readers will follow me and that others will join. For the next few months, I’ll post new entries in both locations to aid in the transition.

As well, since April is Parkinson’s Awareness month, I’m going to take this opportunity to “re-release” what I’m calling the “Greatest Hits – My Blog Vol. 1”. For the next few weeks, I’ll post one of these “gems” each weekday for your edification. If it’s too much volume for you, delete at your leisure and my apologies for any inconvenience caused! However, I’d invite you to join me on a walk down memory lane at the 100 weeks that were…well, the last 100 weeks!

As for my new blog, more simply titled “imshakydad”, today marks a new morning! I look forward to hearing or reading your comments as the weeks go on. With your assistance and guidance, I’m hopeful the hits will keep on coming!

p.s. speaking of hits…to get notice of new blog entries, click on the blue  “Following imshakydad” tab to the upper left!

living with Parkinson's Disease…and more!