tiny dancer

the dance by mdivad, deviantart

I’m not a dancer. I don’t know a demi pointe from a derrière, a piqué from a passé. I am slightly over-weight, lose my breath when climbing stairs, and have an aversion to wearing tight clothing of any description. You will not find me in spandex riding with the guys on Sundays. I won’t be at your local health club spinning or working on a treadmill.I am not athletic, I do not have graceful or flowing movements and have no desire for the perfect sculpted body. 

Except on Tuesdays.

On Tuesdays I have a date. Every week, I wake up to my normal routine - take my medication, make coffee, get everyone set for school/work, walk the dog. But on Tuesday’s, it’s different. I have different affairs to attend to. It starts early as I think back to last Tuesday and remember fondly the music of that day. I try to remember the movements and new positions I learned. I linger a little longer at my closet trying to pick my wardrobe.  I pack up everything I might need in a discrete bag and spirit off to the city for my “rendezvous”. As i draw closer to downtown, I feel an almost giddy excitement come on. 

And then I am there. A beautifully modern six-storey glass and stainless steel structure accented by warm woods. It is snuggled up against a few century homes and older apartment buildings. Once inside, the building is teaming with young, healthy, toned bodies. The first time I entered here I felt very much out of place. Uncomfortable with what I was about to do. Though today I have no shame. I’m happy to be here.

Here, you see, is the National Ballet School of Canada. I am here for my weekly class “Dancing with Parkinson’’s”. Each week 20-25 people with PD, of varying age and ability, gather with the support of 8-10 fabulous volunteers and 2-3 talented instructors to spend the morning dancing. We go through regular stretching, practice steps and maneuvers, dance in different configurations, to different (mostly live) music. We’re always trying something new too and, more often than not, I’m not the only one to awkwardly stumble through a routine. Yet - and here is one of the keys to the success of this program - never do you get the feeling of being embarrassed or looked down upon. It’s a supportive and reassuring group of people.

Yet there is more to it than this. I recall in my second class, we had a visiting instructor from NYC come to lead the class and we were divided into two groups on opposite sides of the stage. In our dance, we were to represent the two rival gangs of West Side Story, slowly moving towards each other - alternating between vicious, aggressive affrontations and the occasional fearful retreat. The aggression ends with a powerful assault aimed at the other gang and, as the music becomes more serene, each gang member slowly approaches a rival gang member, reaches out and gently we press each others hands together. Face to face and eye to eye, hands move slowly in unison in and around each others bodies - almost caressing, gentle and caring. Very peaceful. Very loving. Very moving.

For me, that dance points to one of the most beneficial aspects of dance. I can’t think of another group activity or leisure pursuit where you actually look at other people. Not just glance in the direction of another person, but look at someone with your eyes. Not only is this extremely positive for people with PD, many of whom live fairly isolated lives, but for we as humans. In an ever increasing technological world, we are becoming further removed from our fellow human beings. Dance helps bring that back to us.

Further, and somewhat related, I believe that what makes this program successful is that dance is something you rarely do alone. You have to do it with a partner. Or with a small group. Or with the entire group. In our “Dancing with Parkinson’s” class, we are dancing together with a shared challenge - a shared purpose. When each class ends, we gather holding hands in a large circle to bid one another adieu and, though this signifies the end of the morning’s activity, it only serves to cement the shared experience we’ve just been through. Yes, we are dancing together. We are dancers!

We’ll gather together briefly for coffee and socializing before heading home. As I walk towards the exit, I pass a studio where boys and girls are practicing their routines. I pass the library teaming with dance magazines, books and posters. Another group assembles in the cafeteria for lunch. The bulletin board is crowded with up-coming dance events across the city. In another studio, a group of young men dart and fly through air. I linger for a moment before moving on. I am struck by their talent, their energy, their heart. “They are dancers” I think to myself.  But I’m a dancer too! 

** Please note ** Later this month, I will be involved in 2 fundraising events supporting dance and PD. If you are able, I would appreciate your donation - however tiny it may be! For more info, click here. 

Modelling frailty (Globe & Mail)

The following piece was published in Facts and Arguments, The Globe and Mail,  April 29 2015 


‘I’m a model. You know what I mean? And I do my little turn on the catwalk.”

It’s been almost 25 years since Right Said Fred made this declaration in the brash song I’m Too Sexy.

At age 57, I’m ready to make that daring declaration myself: I am a model. Not perhaps what you might expect in a model: I ply my craft far from the runways of Paris, Milan and New York. My steps are more gingerly taken; cocky is not how you’d describe my demeanour – ambivalent, apathetic, angry might all come to mind instead about the facial “mask” I wear. It is a remote possibility that I’ll ever be featured in GQ.

In my early 40s, I was diagnosed with Parkinson’s disease, a degenerative brain disorder whose symptoms include muscular rigidity, tremors, slowing of movement, a shuffling walk and difficulty with balance. When I walk, often I’ll be lumbering along, swaying, dragging one foot and occasionally flailing my arms. Parkinson’s also brings such cognitive changes as memory loss and confusion, and often depression – all of which I can definitely say I know too well. Not exactly how one thinks of a male model.

But yes, I am a model. Not in the high-powered fashion industry but in the highly underrated, sometimes banal, not-for-profit parenthood industry.

I’m a dad to my three kids, a stay-at-home father for seven years, a parent for more than 20.

“What’s so great about that?” you may wonder. “While it’s one of the most important jobs, it’s not unique, and isn’t almost everyone doing it?”

Well, yes and yes. To a greater or lesser extent, and for better or worse, children look to their parents as models throughout their lives.

Typically, parents start on this journey with the best of intentions and later question our measures of “success.” As my Parkinson’s has progressed, I’ve placed my behaviours, thoughts and actions increasingly under the microscope. I’ve often thought about how my children see me as a “stay-at-home” father, in contrast to when I was employed as a teacher and social-service administrator. How has this shaped their model of what the “working world” looks like? Has it in some way diminished a father’s role and contributions? Would they all answer, as my eldest did, “That’s just the way it is – you’re a different kind of dad”?

When feeling tired or weakened (which, unfortunately, is often), I find it challenging to behave, speak and listen in ways one would consider an appropriate parental manner – with interest, respect, concern and compassion. It can be a real struggle. Are my children aware of this? Do they interpret my words and actions through a Parkinson’s “filter,” or simply find ways to cope?

As my ability to carry out daily activities becomes more limited, and constraints are imposed on more vigorous activities such as travelling, attending special events, visiting extended family or just doing chores, do they see me as no longer contributing to a healthy family life?

On the other hand, having a parent who is disabled presents them with a wonderful opportunity. Seeing their father try to cope with the wasting effects of a degenerative condition gives them a sense of how we all face challenges in life. It offers a connection to others in the community dealing with other difficulties or conditions.

I hope I’ve helped them develop a sense of empathy and caring, reflected through their volunteer work at a food-sharing agency, their extra-curricular volunteer work at school and their volunteering abroad, as both my daughters are doing at present. Or, more simply, in their considerate daily interactions with others.

My children are witnesses to my daily efforts to live life to the fullest. I write a blog, am engaged politically in the community and I do volunteer work myself. I walk daily, take aquafit classes with my mother and have begun a dance class for people with the disease. The dancing is particularly exciting for me. Dancing is a way of living life at its best; and my best, given the degenerative nature of my condition, is where I am now.

I hope that my children have developed an appreciation for the value of good health and the importance of support from family and friends. This is a lesson I would like to have learned long before I did, so fostering it for them is all the more important.

Disquiet, discomfort, illness, suffering, perseverance – as well as gratitude, commitment and love – are all very much part of our shared experience, this thing we call “life.” What better way to model these characteristics than to live with them each day?

I am a model. And I’ll do my little turn on the catwalk.

Robert Kendrick lives in Port Credit, Ont.

new morning

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 this site. In an effort to broaden this base, I'm moving 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!


You'll find it here! Don't forget to click on the blue "Following imshakydad" tab in the top left corner to subscribe. Thank you for your continued interest and support.

goin' old school?

Eron- Old School Graffiti, flickr

My 14 year old son tells me no one uses Facebook anymore.

I'm sure a few months ago he had "friends" he'd never met. "Talked" with them a lot, but never met. When I was 14, I practically lived with my friends day and night.

Yet today's technology opens so many new doors for young people that my 14 year old self could never have imagined. And with each new development, they seem to adjust and keep pace with relative ease. Something my older generation is not nearly as adapt at doing.

The past few years I've tried to make a concerted effort to "catch-up" to technology and social media with mixed results. I've dipped my toe in a few different networks but most of my activity has been on Facebook, Twitter and this blog. Every so often, I'll get frustrated at the plethora of fluff or material that is of little interest, but I also have found my share of "diamonds in the rough". In particular, social media has allowed me to track down and keep in touch with former friends, colleagues and extended family. As well, I've met new folks whose lives have been impacted by Parkinson's Disease. We've been able to share our experiences, provide support when it's required, and grow in ways I wouldn't have expected.

I have been somewhat guarded with my "friends" list - I haven't added everyone who has requested to be my friend nor have I sought to "pad" my number of friends. I'm aware of concerns with regard to spammers and fraudulent representation on-line. Perhaps, I've not been particularly diligent about purging the list of people who I have had more limited contact with but this is, in and of itself, relatively harmless. 

Recently though, I've had a few experiences that make me wonder. I met a fellow PD blogger through our respective blog sites. We were kindred spirits and had regular on-line contact several times a week covering a wide range of personal, health and social issues. I would have said that in the course of a year or so, we were becoming good friends. A friend I'd never met. Yet the more we talked, the more I wanted to meet this person - in person. We came close, but it hasn't happened and I'm not sure it will. I find I am vulnerable to investing too much of myself - emotionally and intellectually - into relationships with "friends" who, for whatever reason, I'm unable to meet. 

I've also had friends who have taken the liberty of adding me to social groups as a friend without seeking consent or first gauging my interest. Perhaps I'm a little old-fashioned in this regard as well but I would much prefer to be "invited" to join a group. Invite me to join a group and I'll likely lap up the invite - put me in a group and I'm much more likely to want the h___ out!

I do think that Zuckerberg really did strike a chord with Facebook and this "friends" concept (though that's stating the obvious). This is especially so in a world where we tend to be more isolated (and that's particularly true for those of us with PD). This network of "friends" can bring another rich layer into one's life - even if it is not always a mutually fuelled or sustained effort. Tonight, I'm betwixt and between - do I adapt my concept of friends to reflect life on-line or, when it comes to choosing my friends, should I be "goin' old school?"
   

Dear Abby (spotted in the advice columns)

Dear Abby, Dear Abby...
My feet are too long
My hair's falling out and my rights are all wrong
My friends they all tell me that I've no friends at all
Won't you write me a letter, Won't you give me a call
Signed Bewildered

Bewildered, Bewildered...
You have no complaint
You are what your are and you ain't what you ain't
So listen up Buster, and listen up good
Stop wishing for bad luck and knocking on wood

Dear Abby, Dear Abby
My fountain pen leaks
My wife hollers at me and my kids are all freaks
Every side I get up on is the wrong side of bed
If it weren't so expensive I'd wish I were dead
Signed Unhappy

Unhappy, Unhappy...
You have no complaint
You are what your are and you ain't what you ain't
So listen up Buster, and listen up good
Stop wishing for bad luck and knocking on wood

Dear Abby, Dear Abby
My Parkinson's stinks
Seeing doctors and nurses, counsellors, shrinks
I'm stiff and I'm sore and I can't stand the cold
This friggin condition just makes me feel old
Signed Frustrated*


I don't know what advise Dear Abby would have for "Frustrated", and my concerns today would not only be too long for publication in any advice column, but they don't make up the material for a very good song. So, dear readers, I turn to you for your advise. Here's what's bugging me today.

For the past two and a half years, I have been fortunate to participate in a clinical trial for a new way of delivery for my PD medication (Duodpoa). This treatment (see previous post here) uses a portable pump, and a daily drug cartridge, which through a tube, releases the medication directly into my blood stream. The fact that it is slow-released, and so direct (avoiding the problematic gut), makes this a far more efficient process. I have less fluctuations throughout the day, less dyskenisis (the wild flailing of arms and legs) and better overall functioning.

When the clinical trial came to an end, and Duopopa was approved by Health Canada, I began to receive my medication "on the market". Instead of regular visits to the hospital to pick-up my cartridges, a specialty pharmacy was engaged to deliver them to my home once a month. Sounds good so far, right? Sure, but here's a little more information for you. Here is what one cartridge looks like:

Each cartridge weighs roughly 1/4 lb and is 3.5"X3.5"X1" and is constructed of a hard plastic shell that encases a soft plastic cell which holds the liquid gel medication that is dispensed through the plastic tube. While individual amounts will vary, I currently consume about 60% of the medication in one cassette a day. Since the medication needs refrigeration, the prescription regimen requires that one cassette be used per day. The remainder is "discarded". Here's our first hint at my discomfort. First, some more facts and photos for your sensory pleasure.

Here's what one week's supply of duodopa cartridges looks like:

And, when consumed, I add it to a little collection that I have that looks like this:

These are 2.5' square styrofoam coolers that are used to ship 4 week's supply of cartridges to my home. Each styrofoam container is packed with 12-16 ice gel packs (each weighing approx. 1 lb). After a few months, my styrofoam "stack" began to look like this:

Each month, my collection grows. During the clinical trial, I returned all used cassettes to the hospital and was advised that they were being returned to the manufacturer for sterilization, proper disposal of surplus duodopa, and re-use of cartridges. However, once the product came "on market", the pharmacy and the manufacturer, have advised me that the used cartridges (including the surplus duodopa) are to be "disposed of" in regular household trash. Same with the ice gel packs. The styrofoam coolers would not be collected for re-use either but "may be accepted by municipal recycling programs". 

While I make no claim to being a perfect environmental steward, I certainly have become much more strident in the last decade or two. Yet everyday decisions I have been making - from consuming less to buying package-free products to recycling to reducing carbon emissions to name a few - suddenly felt minuscule in the face of the new "waste" that was being generated by my use of duodopa. I have not "disposed" of any of the materials to date and have stored everything in our (crowded) garage. I have expressed my concerns to both the manufacturer and the pharmacy but, as yet have had limited success. Starting this month,, a new pharmacy has been engaged and the cartridges will be collected and the surplus duodopa sac will be extracted for hazardous material disposal (the hard plastic case cartridges will still be "disposed" and not re-used).

That's the first albatross I carry. The waste. The second? The cost. I am extremely fortunate to have excellent private medical coverage, courtesy of my last employer and our union. At present, this covers most of my drug costs - including the full cost of duodopa- until retirement. And what exactly does a day of duodopa - one single cassette - cost you may wonder? $195 a day. Almost $6,000 a month. Over $70,000 a year. And that is just the cost that is billed to my insurance company. The ultimate costs are significantly more. We know that insurance companies don't pay these bills for philanthropic purposes. They need to make profits for their shareholders and these costs will eventually be recouped through increased premiums for all. Furthermore, while I recognize that drug manufacturers need to recoup investments made in drug development and the manufacturing process, it seems perverse that they could charge this much for this medication. Without private insurance, who could afford to take this medication? 

In the past few years, I have met many people with Parkinson's who could benefit from duodopa but, without drug coverage, cannot consider this an option.  Moreover, consider the cost of this product - one person, one year, $70,000. Contrast this with the social and economic conditions in much of the developing world. Obscene. Welcome to my third albatross - guilt. 

And so, Dear Reader, you see I am conflicted by the symptomatic and physical benefits of this new treatment and the weight associated with its use (to say nothing of the physical weight of the pump itself!). Any sage advice? I''m listening up Buster and listening up good!

* Lyrics by John Prine (except the final stanza, I take all the blame for that one!)
** Thanks SR for the link to the video version!

a holiday

I'm a going a travelling
My head is clear and empty
And as happy as this blue, blue sky
I packed no problems in my suitcase
No questions in my pockets
I threw away the reasons why
Now everybody gets tired of shaking
The same old geography
I got to get away baby
It's time to take a holiday

Lyrics by Paul Campbell

As the cold frigid air of February began to tighten its grip on my part of Canada, I found myself suddenly ensconced in the mountains of Kingston, Jamaica. With a daughter studying abroad for the year, I had every legitimate reason to be there. A father ensuring her safety and security, delivering needed provisions, engaging in some minor problem-solving, ensuring she was well fed and her pantry was stocked at least for one week of the year! 

Travelling is becoming increasingly difficult for me as my PD progresses. The disruption to routines, the extras I have to tote with me, dealing with the inevitable anxious moments, and a body that tends to wear out and tire quicker than ever before all make it more challenging. Yet, faced with the cold, the snow, the omnipresent wind chill - the prospects of a week away in the Caribbean was too inviting. I got to get away baby, it was time to take a holiday!

And, indeed, it was good to get away. Too short, of course but good. No matter how short a time, or how great a distance, I can't get away from my PD. But I can get away, or at least be diverted from, the day-to-day pains and strains of PD. The chance to take breakfast out on the patio; to walk an unfamiliar path in an unfamiliar land; to eat some fresh exotic fruit; to chat with someone I'd never met about their homeland, their culture or their faith; to hear some music i'd never heard before; to sleep (and really sleep) in a strange bed. 

Yes, at times I felt the disruption to my routines. And indeed I felt the weight of the medical supplies and sundries I had to carry. I also had my anxious moments and others where I felt tired beyond belief. But, it was good to get away. When you look back at the week away, and you recall the hardest thing you did was to open a beer bottle without a bottle opener, you know you've had a holiday!

No problem, mon?

Go Ask Alice

Trippy Self Portrait by BHOTCH, DeviantArt

One pill makes you larger and one pill makes you small

For most of my adult years, I avoided pharmaceutics whenever I could. I tried herbal remedies and concoctions, ginger teas for digestion, chamomile for sleep, vitamin supplements at times when coughs or colds had taken hold. I experimented with diet, and generally tried to follow what I would suggest was a less toxic route. I did my share of a different sort of drug in my university years and thereafter but that is yesterday's news. When I was diagnosed with PD in 2000, things changed.

A cold or sore throat - that i could deal with. A chronic neurological illness that would, according to my first Neurologist - see me in a wheelchair in 5 years, I could not. She recommended immediately starting levodopa. Yes Doctor. Sinemet. Yes Doctor. and domperidone. Yes Doctor. A zombie before Zombies became big (not these Zombies but the ugly ones).

Knowing little of PD at the time, I was taken aback at the speed this 'pusher' had me up and medicated (with a script to ramp up the amount and frequency in the weeks ahead).

In fairness to all, I didn't put up much of a fight. Chronic Disease? Specialists? Movement Disorder specialists? How could THEY all be wrong and me right. Not likely. I would go with the flow and follow their advise. And for the most part, this has been good advice by considerate and compassionate health care workers.

And the ones that mother gives you, don't do anything at all

But something is troubling me. I don't want to over-simplify this but in this, my 15th year of PD, I have went from a few pills to control tremors and dystonia to a lot of pills for the same. This brought with it some adverse effects which we of course added other pills to counteract these effects.  When some of these didn't work as well, we tried different ones which worked better but came with another side effect that, fortunately, could be aided by another pill that had few side effects in 92% of the population. I was in the 8%. It was on to something else. 

At the same time I developed some gastro-intestinal problems and this introduced 3 new pills. Moved to an enteral pump for delivery of my PD meds - resulting in one less pill (yeah!) but then went through a rough period of depression - more pills. Low blood count - more pills. See a worrisome trend developing here?

Go ask Alice, I think she'll know

Some days I can't help but feel I want to stop this train and get off. I'm not naive enough to think that's going to work. Yet, I worry about the longer term effects of all this medication. For the moment, I'm planning a review of all the meds I am taking with my physicians with an eye to reducing or eliminating some. I'm also reticent about introducing others where and whenever I can in the days ahead. To those readers who are in the early stages of Parkinson's, or any chronic illness for that matter, you'll have to make your own call. My tale may be a cautionary one. Remember what the dormouse said - feed your head, feed you head!

a good time to die

Dead Tired - Gopixpic

When first diagnosed with PD some 14 years ago, I remember being plagued for weeks by thoughts of my last days. I couldn't deal with all of the horrors associated with end stage Parkinson's. I still can't. Yet, if there is any lesson I have learned, it's to not precipitate about a future you cannot control. Further, as Michael J Fox has pointed out, there is little use in worrying about that now - to do so would mean you actually live through such horrors twice - once in the present and again when you actually arrive at that point. 

Of late, though, as PD has taken more of a toll, and as I have seen friends and family dealing with issues of mortality, I find it hard not to drift back to thoughts of death and dying. Not in an obsessive way nor centered on my state of health in those "dying days". More focused on consideration of how I am to live the rest of my years. What is it that makes my life valuable? What is it that I can offer that makes my life meaningful? How long will I want to live in advanced years with a declining body and mind?

Recently, I heard an interesting interview on CBC radio's The Sunday edition with Dr. Ezekiel Emanuel, an oncologist at the University of Pennsylvania, who says that he wants to die at age 75. He is currently 57 years old, apparently quite active, has no terminal illness and no plans to commit suicide. Yet he says that he would be doing society and loved ones a favour by dying at 75. “A good life is not just about stacking up the years and living as long as possible. People need to focus on quality of life,” he says. “Setting an actual date for a good time to die helps you focus on what is important in your life.”

He says when he reaches 75 he will refuse all tests and treatments, including the blood pressure medication he takes now. He's not suggesting people kill themselves at 75 but, rather, let nature take its course. As the CBC interview points out, it's a controversial stance, but one that resonates in an age when medical science can prolong life, but often at the cost of quality of life.

If you want to hear the full interview, you can listen here.

So, what's a good time to die? 

got my tight pants on

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 more detail and vivid illustrations, see my May 2013 blog here). 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.  

Part Deux

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!

 

serendipity

hkandray.com

This fall, I had the pleasure of discovering a blog chronicling one woman's adventures with Parkinson's Disease in California. Now, Im not only jealous of the fact that she has far better weather to look forward to over the next few months than I, but I am extremely envious of her talent as a writer. She is prolific, smart, humourous and regularly manages to capture so much of what life is like with Parkinson's today. In a recent blog, she set out to answer common questions she faces as a person with PD. I thought the scope and clarity of both the questions and the answers was worth reposting here and so, what follows is a rather large excerpt from her "Q & A" posting of November 2014. If you have a chance, do check out her blog yourself - btw she often includes a thematically-linked playlist of songs that is gold! You'll find it at http://hkandray.com .

In this excerpt the first line is the oft-asked question, the second line is her answer and the third line or paragraph includes facts. She notes that the bold text is the important part. Enjoy and thanks to HK for guesting here today!

How many drinks have you had?

None. Um, it’s nine o’clock in the morning at Trader Joe’s. What gave you that idea?

Parkinson’s disease is a slow, progressive disease affecting brain centers controlling movement, balance, posture and walking. The slurring, tripping, shaking or slowness you perceive is part of a neurologic condition, not alcohol or drug abuse. 

Are you cold?

Not unless I’m provoked. Oh, you mean temperature? No.

In general, tremor (shaking) begins in the hands and arms, although it can also occur in the jaw or foot. Not every person with Parkinson’s disease has tremor. Any type of stressor will exacerbate symptoms. 

Are you eating?

I have a high metabolism and I work out like an animal chasing a meal. Also, a drop in weight (10 to 30 pounds) is common in people with Parkinson’s disease because of swallowing problems and energy (calories) used by tremors and involuntary movements.

Why are you always running to the bathroom?

With Parkinson’s there is often a strong desire to urinate (urgency), increased frequency, and incomplete release of urine, so you have to use the loo more often. Now get out of my way. 

You look exhausted. Why don’t you go to bed earlier?

Difficulty falling and remaining asleep is common with PD. Frequent nighttime wakening leaves me exhausted in the morning. I have such vivid dreams when I do sleep. Did we make out last night?

Why are you walking so slowly?

Parkinson’s is a movement disorder. Balance, gait, mobility, freezing, and automatic movements are all affected. This means that at times I may fall, shuffle, favor one side of the body, freeze up, or appear stiff. I used to be a sprinter and prefer speed. Do you want to race? Bradykinesia = frustrating problems with movement and people with Parkinson’s disease tend to withdraw from activities for this reason.

Why are you such a downer right now?

Depression and anxiety are a part of this disease. Not only because of the increasing physical challenges, but because chemistry is altered. It turns out dopamine is important for more than just movement. Medications can also cause severe highs and lows. Without proper support, this disease can be unbearable. They say to reach out to a trusted friend if you are overwhelmed. I say, reach out to someone who gets it. 

Why don’t you just relax?

Rigidity is the inability for the muscles to relax normally. Most people with the disease develop some degree of rigidity, or stiffness of limbs. This rigidity is caused by uncontrolled tensing of muscles and inhibits your ability to move about freely. My body hurts, all the time. Chronic pain may add to the impression that I am acting uptight. This is entirely physical and not a choice. Also I have a six pack (in the fridge).

What are you staring at?

The Parkinson mask can hide emotions because facial expressions require active muscles. This is a disguise. Inside we are really laughing at these ridiculous questions. Also, I was trying to see what time it is and there is a clock behind your head. 

What’s your problem?

Oh, do I appear to be a bit aloof? Actually, the worst part of PD so far is not physical. It’s the lack of understanding or support from people I believed were close friends. If I could give one bit of advice to someone living with a disease or anyone in chronic pain, it would be simple: know who you can trust and count on when it gets overwhelming, because it will. Be prepared for a rude awakening and manage your expectations. It is my hope you will not experience betrayal or abandonment from anyone in your inner circle. Find those who at least try to understand part of your experience, because underestimating the toll of chronic pain is life-threatening. 

Why don’t you go out anymore?

On good days, I’d stay out all night if I could. You’ll have to pull the ripcord, OK? If I get my way, we’re staying up all night. Endlessly fascinated by people and life in general, I have tremendous gratitude for this beautiful life and want to take it all in. On bad days, I practice acceptance or cry, and on really bad days I curl up in a ball and reach out for a touchstone (trusted friend who may offer moral support). 

What’s the silver lining?

Humility. Awareness. Realization. Acceptance. Compassion. Patience. The lessons keep coming. I wonder what’s next. So many gifts. 

So you’re like Michael J. Fox?

No, but thank you for the compliment. I certainly aspire to be as strong and productive as he after three decades of this cruel disease. Fox is a warrior. 

Why don’t you twitch like MJF? Why does he move around so much?

I can’t speak for him, and I know he didn’t set out to be a spokesperson for PD, but https://www.michaeljfox.org is easy to navigate and contains a wealth of information. That type of movement seems to be a side effect of medication, and not the actual disease. Some meds serve to assist movement and can cause dramatic jerking or twitching movements. Each body presents differently- not everyone shakes or encounters exactly the same challenges. 

Does it hurt?

My body hurts, especially when I don’t make time for fitness/activity. It reminds me every day that millions of people are living with a chronic illness and many are suffering through it without adequate support. Suffering changes personalities. I can understand why some choose to anesthetize themselves as the pain increases, but we all know where that path leads. Untreated pain diminishes and eclipses lives and destroys families. I’d like to see that change. As people become more aware, perhaps we’ll get to see some of that change. 

Are you on drugs?

Yes, but not the fun kind you may have tested in college.

So you get meds and it’s better?

It’s tricky because the meds are always changing. It’s not like you find the perfect combination and stick with it. The body keeps changing and becomes somewhat immune to or tolerant of increasing and changing dosages. Unless you undergo a surgical implant like DBS (deep brain stimulation), I know of no way to manage Parkinson’s without some form of medication. 

Do the meds have side effects?

Let me think about this one…YES! Don’t take my word for it- you can start by doing your own search on the side effects of dopamine agonists. We’ve touched on this a few times. The other types of meds either make you want to throw up, sleep, crawl into a cave or jump off a bridge. Links to previous posts for your perusal:

http://hkandray.com/?p=275

http://hkandray.com/?p=241

What do you want?

World peace. The eradication of poverty. Education made available to everyone. 

No, really. What do you want?

A nap. 

To read "Q & A" in its entirety, please visit 

http://hkandray.com/?p=1194