La dolce vita

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My ideal writing spot this morning. Spring in Castiglion Fiorentino, Cary D. Tennis, Facebook 

“Due Cappuccino si prega. Mille grazie”.

My first morning in Bojano, Italy, I walked the coblestone streets in search of an early-opening cafe. It was roughly 6:30 am when I walked into Cafe Tiffany and, in my limited and fractured Italian, bolstered with gestural reinforcement, ordered two cappuccinos. The woman at the bar  looked at me, looked around me, behind me and seeing no one else said, in a quizzical tone “Due?” . Si, yes, 2. For me. Two. One to drink fast, get my caffeine and the second to sip, slowly, savour!

I’ve only been back to Italy a few times but this place  has certainly carved out a special place in my memory. Not just Cafe Tiffany but the country itself!

Oh to find myself in a little viaggio, waking up in some small albergo, to the sounds of the mercato and le donne ei bambini down in the street.

After my cappuccino I might write, take a stroll through town or out to the mountains. An afternoon pisolino or riposo, before enjoying an evening meal and superior red wine!

Call me a romantic but doesn’t that just sound like the perfect way to live out your life once you’ve been freed of the shackles of work and the workaday routine? Now that a chronic disease has entered the picture, what better way to fill the void then to spend hours, days, weeks, months or even years than being in such a glorious land?!

I have often found myself drawn to the exotic prospects of such a life but it doesn’t take long before reality snaps me into place. What about health care? Snap. What about your specialists? Snap. What about all your medications? Snap. What about insurance and your pension? Snap. To say nothing about your family, your children, your home, your “bella sposa”! Snap. Snap. Snap.

That’s the sound of cold, cruel reality hitting home. I don’t know if the future holds a possibility of any version of such an alternate life. I’d like to think it does. And I’d like to think it does before Parkinson’s takes too firm a grip on me.  If nothing else, let me step back into Cafe Tiffany once more. Feel free to join me. I’ve got this covered – “tre Cappuccino si prega. Mille grazie.”

 

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Like a young pretty girl that never ages – that’s Italy. She never gets older, never loses her allure, and you can’t get enough of it, and it survives.

But all other beauty on earth fades. Except Italy.

Jerry Seinfeld

 

Greatest Hits of PD (IV)

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Reflection, driving blind, deviantart (close-up)

This year, to mark Parkinson’s Awareness month, I wanted to focus on Parkinson’s Disease and what it’s brought into my life. I’m dubbing this my “Greatest Hits of PD” (emphasis on the “hits”!). Like the old 45 rpm records, sometimes the “hit” was on Side A – a bouncy, upbeat positive single that rose quickly on the charts. Sometimes the “hit” came on the darker side – the hidden gem – Side B – the unexpected “hit” that you just couldn’t escape. Before long , it too rose to meteoric proportions.

For the month of April, I’ve been reviewing each of these “hits” – one for every day of the month.  They are presented as the “Top 30” but are in no particular order. To save readers a daily deluge, I’ve been spinning a weeks worth of entries in each blog posting and this marks the final posting! Hope you enjoy the ride and thanks for tuning in!

The Top 30 – Hits

# 9- Cognitive dysfunction  – Whenever I think of this, I have an image of a Michael Palin character in a Monty Python skit who repeatedly declares “My brain hurts! My brain hurts!”. While my brain doesn’t exactly hurt, I certainly feel that I have had some minor impairment in my processing speed – some difficulty forming what I want to say or responding as quickly as I once did. I find it more stressful to do any kind of multi-tasking. I occasionally forget things that I never would have before. Though I still vividly remember Michael Palin!

# 8  –  Drugs and the Duodopa Pump – I once prided myself on the lack of medicine that I took. I didn’t want to introduce any additional chemicals  into my body.  That was before being diagnosed with this chronic condition. Somewhat reluctantly, I put my fate in the hands of my doctors and took whatever was prescribed. Most recently, I took part in a clinical trial for duodopa and have been “on the pump” for the last 4 years. This has been a mixed blessing – on the one hand, it has resulted in a more even day (less off-time) and calmed dyskinesis, but the sheer size and weight of the pump have been an albatross on my back – weighing me down physically and psychologically. There are few other options for me at present, besides Deep Brain Stimulation surgery, and I’m not prepared to undertake such as invasive procedure.

# 7  –   Worldwide connection -through my blog, and various on-line support groups, I’ve been connecting with people around the world (as language permits). I know that in the era of internet, this is in and of itself, of little meaning yet , when you can connect with others facing similar issues, it does make a difference.

# 6  – Health care team – I am fortunate to be in Canada with our socialized medical system and a decent private drug plan (HINT: Canada needs Pharmacare)  . Some of the best in the PD health care community practise in Toronto and I have been fortunate to benefit from their services. Neurologists, other specialists, nursing teams, fellows a interns, researchers, therapists, and office staff have all been of assistance through the years and I’d like to extend to them once again my appreciation.

# 5 – Smell – or rather the lack thereof. For many people with Parkinson’s, sense of smell is one of the first things to go. In fact, for many, it comes as a precursor to their diagnosis of PD. Such was the case for me. I can recall not a total loss of sense of smell but definitely a deterioration through the years leading up to my diagnosis. Some 15 years later, it’s pretty much a done deal. I can drive by a freshly fertilized farmer’s field and feel like I’m at a florist’s shop. Or I can walk through a farmer’s market and it might just as well be a sterilized hospital ward for all my nose knows! I miss smelling coffee and food the most!

# 4  – Crying – I’ve admitted it. I’m a cry baby. While it my be de rigueur to be  a sensitive male these days,  PD has pushed me to the other end of the scale. I get so emotional about the slightest things! My children are embarrassed to be around me when I listen to music or watch a movie. I tear up pretty easily . I’m not sure why this is and I personally am not embarrassed by it, but it pretty much rules me out of any macho man competitions in this life.

# 3  – Depression – almost 2 years ago, I wrote in my blog about my struggle with depression. I said “I’m feeling exceptionally tired and challenged by the activities of daily living. I’m struggling with my roles; with a discouraging sense of self. My motivation to accomplish things all too often seems to be waning…”. I can definitively say these feelings are not completely out of site – they’re still in my rear view mirror. I’m hoping the warning in that mirror (the one about “objects may be closer than they appear”) doesn’t apply. I am, at least in the present, in a better state than this.

# 2 – Family – As PD has progressed, my family has been even more vital to me. I can’t begin to describe what a difference it makes to have people in your corner – carrying about you, wanting to help, looking to offer support.  It may be a cliche but it’s one that rings true – nothing can replace the family.

# 1  – This blog – I enjoy writing and I’ve certainly enjoyed most of the last 3 years exploring various aspects of living with PD in this blog. While I am sometimes disappointed that it has not attracted a larger audience, I understand that this is at least in part my own fault. First, I have chosen to try to present a more realistic look at living with PD. Sometimes that means discussing darker or unpleasant aspects of the disease. Not everyone wants to explore that side and what you tend to see are blogs that accentuate the positive – they are full of rainbows, unicorns, and feel-good pleasantries. That’s not my blog. Second, I’ve found it difficult to get referrals to my blog. One of the biggest Foundations in PD research won’t link up with my blog as there are a few pieces that could be perceived as critical of their work (fairly, I believe, but still critical). They publish links to summer students ramblings and interns blogs with thoughts of PD  but won’t share  links to any of my articles. They weren’t even interested in an article I wrote that was in Canada’s national newspaper! It’s unfortunate.

Nevertheless, there have been very many good things that have come from this blog. I have received positive comments from so many readers and my spirit has been buoyed by sharing my experiences. With virtually every new entry, I hear from at least 4 or 5 new people who have been touched in one way or another by the piece. I’ve met new friends through this and learned a lot in the process.  I’ve been beaten up only once so far on line so that’s a pretty good track record as well.

I am not sure how much longer I’ll continue with this blog. I’d like to explore some other vehicles for my writing. For now though, the trip continues. Thanks for joining me on the ride so far and I look forward to the trip ahead!

All good things,

rk

 

 

 

Greatest Hits of PD (III)

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Reflection, driving blind, deviantart (close-up)

This year, to mark Parkinson’s Awareness month, I wanted to focus on Parkinson’s Disease and what it’s brought into my life. I’m dubbing this my “Greatest Hits of PD” (emphasis on the “hits”!). Like the old 45 rpm records, sometimes the “hit” was on Side A – a bouncy, upbeat positive single that rose quickly on the charts. Sometimes the “hit” came on the darker side – the hidden gem – Side B – the unexpected “hit” that you just couldn’t escape. Before long , it too rose to meteoric proportions.

For the month of April, I’ll be reviewing each of these “hits” – one for every day of the month. While they are presented as the “Top 30” – they are in no particular order. To save readers a daily deluge, I’m spinning a weeks worth of entries in each blog posting. Hope you enjoy the ride and thanks for tuning in!

The Top 30 – Hits

#16  – Dyskinesis – this is the hallmark of PD – the inability to control movements, characterized by spasmodic or repetitive movement of the arms, legs,and other body parts. Sometimes, it can be brought on by taking too large a dose of levedopa, the principal drug used to treat PD. Those of you who have seen Michael J Fox and have shuttered at his “shakiness” – this is a good illustration of dyskinesis at work!

#15  –  Gratitude – and speaking of Michael J Fox, I credit this next “hit” to him. Early on in my PD life, I  read his book “Lucky Man“. The title refers to how lucky he considered himself to have PD… how it changed his life…lead him away from a toxic lifestyle. I found this initially perplexing but, in reading his book, and taking a more introspective assessment of my own life, what came into focus was this sense of gratitude. I was more grateful for the people that were in all aspects of my life. I was  grateful for all that I had in my life. I was grateful for the opportunity to make some changes in my life that needed changing.  I too was a lucky man.

#14  –  Slow Down – when you have a young family, a professional career, and all the trappings that go with that lifestyle -at least in the western world – life can get pretty frantic. You lose focus, get swooped up in a frenetic buzz of activity, and before you know it, years have flown by. PD played a large part in putting the brakes on this frenetic pace; bringing some sanity back into what I now see were some insane times. Slow it down – with PD I really had no choice.

#13  –  Choking – many people with PD have difficulty swallowing as they lose control of their mouth and throat muscles. Chewing and managing solid foods can be difficult and swallowing problems increase the risk of aspiration (inhaling fluid or stomach contents into the lungs) and pneumonia. I’ve had a few scares but nothing too serious to date. I must admit this is one of the scarier symptoms of life with PD.

#12  –  Rigidity – rigidity or stiffness of the muscles is almost the polar opposite of dyskinesis.  I may walk slowly and with a loss of arm swing, generally have a loss of facial expression, experience fatigue, and may have a variety of muscle pain issues.

#11  –  Balance – until the Fall of 2015, I had only rare experience with balance issues. Then, I took a fall in my backyard and everything changed. I was fortunate that I only bruised a few ribs but, the worst part of that incident, is what came after my physical healing. I became extremely cautious of walking – each step was deliberate. Each move was tentative and my confidence shaken. I am still working on getting back to my level of activity before the fall.

# 10  –  Apathy – There are days when I find it extremely hard to get motivated to get myself moving. I don’t have the same drive or passion. I have my “to do” list that seems perpetually pregnant with tasks to do. I want to get them done but more often than not, I’m eunuched. I can’t get it going. This may be a result of my dopamine-deprived brain since dopamine is not only the primary neurotransmitter for motor control and movement, but it is also necessary for goal-oriented behavior, enjoyment and motivation. Less motivation + less enjoyment = apathy. It’s a difficult hump to get over.

 

That’s it for this week – thanks for stopping by! Be sure and come back next week as we work our way down to #1!

Greatest Hits of PD (II)

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Reflection, driving blind, deviantart (close-up)

This year, to mark Parkinson’s Awareness month, I wanted to focus on Parkinson’s Disease and what it’s brought into my life. I’m dubbing this my “Greatest Hits of PD” (emphasis on the “hits”!). Like the old 45 rpm records, sometimes the “hit” was on Side A – a bouncy, upbeat positive single that rose quickly on the charts. Sometimes the “hit” came on the darker side – the hidden gem – Side B – the unexpected “hit” that you just couldn’t escape. Before long , it too rose to meteoric proportions.

For the month of April, I’ll be reviewing each of these “hits” – one for every day of the month. While they are presented as the “Top 30” – they are in no particular order. To save readers a daily deluge, I’m spinning a weeks worth of entries in each blog posting. Hope you enjoy the ride and thanks for tuning in!

The Top 30 – Hits

#23 –  Dystonia – this is a curling-up of my toes that happens every day to varying degrees. At times it is a simple irritant, at other times it is extremely painful. Occasionally it can be debilitating, though this has never lasted for any great length of time. I sincerely hope this doesn’t advance.

#22   –  Reflux – or heartburn. As I understand it, in people with Parkinson’s, the ‘nerves that guide muscles of the GI tract may be slowed, and this slows the muscle action as well. The stomach takes longer to grind and mix the food. When food and stomach acid sit in the stomach for too long, the acid acts on the food to form gas, which can distend the stomach, causing burping, and sometimes severe bloating and painful cramping” (Kathrynne Holden). Check. Check. Check.

#21 –  New Moniker –  In my early days of diagnosis, I had a young family (3 kids  – aged 2  months to 4 years) and being Dad was a big part of my life. I’m not exactly sure when it happened  but sometime in those early days I morphed from being simply “Dad”  to being a shaky Dad or, more simply, Shakydad. I can thank my kids for this label. I’m pretty confident that it didn’t refer to my competence as a father (a bit shaky?) or my rap-artist handle,  but that it more closely reflected my physical appearance – a Dad that “shaked” with PD. From my car license plates, to my email address, this moniker has stuck with me – I can’t shake it off! I find it adds a dose of humour that still helps.

#20 –  PWP – or People With Parkinson’s. Having PD has brought me into a whole other world where I’ve met so many good people. I have made friends that I otherwise would never have met. I have seen people who are in far worse  circumstances than I who have managed to not only cope with their own difficulties, but been able to extend care and regard for others in extraordinary ways. They have been truly inspirational and beacons in a sometimes dark world. I am grateful.

#19  –  Time – while I continued to work for several years after diagnosis, I was eventually required to go on Long Term Disability. This has been a saving grace as I just could not work the way my job required. I still miss working within a school community – especially with the children – but in exchange, I’ve received the gift of time. I have more time for my family, more time for activities, more time for rejuvenation and rest.

# 18  – Anxiety – in the days before PD, I remember having incidents of anxiety in my life but certainly it was episodic. Today, it is a regular visitor to my life. I am anxious or unsettled a lot of the time and under a range of circumstances. From something as simple as going out for a walk or to medical appointments to attending large public or social events. It is by no means crippling, but it is a source of some concern. I don’t fully get why this is but it is part of my days now.

#17  – B & B – bowel and bladder issues are not something that I write about a lot nor are they a particularly interesting topic for most readers. Suffice it to say that I have them. I can swing between diarrhea and constipation in the course of a few days. I frequently have an over-active bladder. The #17 on my “Greatest Hits of PD” – pee and poo – they probably should be #1 and #2!

Tune in again next week for #16-#10!  “Dyskinesis”! “Gratitude”! And that monster hit “Apathy”!

 

Greatest Hits of PD

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Reflection, driving blind, deviantart

April is Parkinson’s Awareness Month. Last year, as I transitioned to a new site for this blog, I took the opportunity to revisit some of my earlier entries and reprinted some of these as”Greatest Hits – My Blog Vol. 1”.  It’s been 3 years since I published my first blog entry on April 21, 20013 (Reelin’ in the years)!

This year, to mark this month, I thought I’d take a different approach. Instead of focusing on my blog, I wanted to focus on Parkinson’s Disease itself and what it’s brought into my life. I’m dubbing this my “Greatest Hits of PD”  (emphasis on the “hits”!). Like the old 45 rpm records, sometimes the “hit” was on Side A – a bouncy, upbeat positive single that rose quickly on the charts. Sometimes the “hit”  came on the darker side – the hidden gem – Side B – the unexpected  “hit” that you just couldn’t escape. Before long , it too rose to meteoric proportions.

For the month of April, I’ll be reviewing each of these “hits” – one for every day of the month. While they are presented as the “Top 30” – they are in no particular order. To save readers a daily deluge, I’ll spin a weeks worth of entries in each blog posting during the month. Hope you enjoy the ride and thanks for tuning in!

The Top 30 – Hits

#30  –  Sleep  – while this has varied through my 16 years with PD – from times when I slept for only 2-3 hours in total (not consecutive) to days when I would have 4-5 hours at night with another 2-3 during the day – I find that sleep has been a constant area of concern. Of late, and  with the assistance of medication, it seems to be the best it’s ever been – I get a (mostly) solid 5-6 hours sleep at night, and frequently have a 30-45 min. nap in the afternoon. If one of these is disturb, I feel the ramifications throughout the day.

#29  –  Exercise – I’ve never before been as actually aware of the benefits of exercise. While I am not a fitness buff by any description, I certainly can attest to the benefits of regular exercise. Swimming and walking are regular activities for me and if I have to miss these, I feel the negative effects almost right away.

#28 –  Coffee  – I have an excuse to have coffee! There is a body of evidence that suggests caffeine has properties that help prevent the onset of PD. While it might be a little late to prevent onset, there must be some beneficial characteristics even to those with PD. Agreed?

#27  – Dry – dry skin, dry mouth, dry eyes. several of the medications I take have, as a side-effect, a tendency to dry out my body. The dryness of my skin, despite my best efforts to moisturize, leads to easy “scratching” and flakiness. Drying of my mouth has resulted in not only the relatively minor irritant of dry mouth but it has lead to some major dental problems. Dry eyes are a common, everyday occurrence. A warm facecloth compress is my best friend!

#26  – Perspective  – Having a chronic illness diagnosis of PD was indeed devastating. I remember the initial shock and despair I experienced. However, as I learned more about this disease, I also became acutely aware of how many other people experience far more crushing illnesses. I have been blessed by many healthy years,  a strong support system, and a disease that while debilitating in itself, seems to be evolving on a relatively slower trajectory than others. The initial diagnosis some 16 years ago had me living life  in a wheelchair in 5-10 years. I’m nowhere near that still.

#25  –  Loneliness  –  PD can be a very isolating disease. Many recede into an insular world as the condition advances. Perhaps physical difficulties restrict one’s movements, or embarrassment is brought on in social circumstances. Whatever the case, it can get lonely. Recently I had a fall that confined me to home for an extended period and this was the loneliest period i can recall. I also think that some people are uncomfortable being around someone who has PD – they don’t know what to expect or what say or do. No doubt, I live a more limited social life these days.

#24  –  Serendipity – There have been a few pleasant surprises that have come with PD. My tremors at one time were so bad that I made excellent milkshakes with little effort. When our baby was upset at night, I would simply place my hand on their chest, and let my hand “vibrate” them to sleep. When sales staff  see me struggling with my wallet, they are more often than not more patient with me and clearly wanting to help. Friends and family frequently tell me about things they’ve heard, read or seen related to PD. It’s nice to know they’ve thought of me and are attentive to PD.

 

Next week: Numbers 23-17! “Dystonia”!” PWP”! And more! The hits just keep on coming!

 

 

 

 

BREAKING NEWS! A new web-series, Challenges & Change by The Green Planet Monitor, features an interview with me in its’ first episode. You can listen to it here.

The Green Planet Monitor is published by Earth Chronicle Productions, a Canadian multimedia company specializing in global environment, development and social justice issues.