From the freezer to the frying pan

the cold and the hot by murdocsnook, deviantart
the cold and the hot by murdocsnook, deviantart

At the risk of repeating the mistakes of Goldilocks, may I say that it is too damned hot. Here in Southern Ontario, we’ve been in a severe heatwave for several days with little relief in sight. This is the same place where, several months ago, I wrote complaining about how bitterly cold it was and how long winter was dragging on. Elsewhere, extremes have even been more pronounced.

As time goes by, and my PD advances, I find I am becoming more sensitive to these temperature extremes. Too hot to stand it in the summer;  too cold to get through a winter. So, what’s the alternative?

Well, living in Canada, there are limited options. The west coast has more moderate winter temperatures but also can be quite wet. The east coast, while beautiful, has even longer winters and shorter summers. In the province of Ontario alone, there are tremendous differences between north and south, west and east. We don’t have any Caribbean island that we have annexed to be part of our country nor do we have the American equivalent of “retirement states” such as Florida, Arizona or California.

Obviously, there are other factors that weigh into any decision to relocate such as family, friends, health care and lifestyle considerations. But, for a bit of summertime fun, I’d like to put out a mini-poll to PWP to ask whether or not climate has been a factor in your decision on where you live. Results are not scientifically quantifiable and your individual answers will not be shared with any real estate services or moving companies! I will however make my decision based solely on the results of this poll (he says, tongue firmly implanted in cheek). My family may have a thing or two to say about that but, as I say, this is suppose to be fun! (there i go again – saying this is good summertime fun….tells you what kind of a summer i’m having i suppose if this is considered fun 🙂 )

BONUS: Unlike the Canadian government, 2 pieces of ID are not required to vote, a voter registration card is not necessary but perfectly acceptable, and you may or may not be entitled to vote early and often – this is the first time I’ve used this WordPress feature so I’m really not sure how it’ll work 🙂  Good luck and thanks for your vote!

I don’t care

Nathalie Ramirez, flickr
Nathalie Ramirez, flickr

When I was a first year University student, I took in a “Clubs Fair” where many different clubs were represented – a Chess Club, Ham radio group,  student newspaper, student political groups of every political stripe, amongst many others. One group that caught my attention had a large sign emblazoned with the words “Do you Care?”. In smaller print, just below this beckoning question was printed “We don’t”. That, dear reader, was the pitch of the Apathy Club.

Now, my memory may have suffered the ravages of time, perhaps twisted some of the particulars. This may not be a totally accurate picture of what transpired at the Clubs Fair, but I know for certain that the Apathy Club was not one I would be joining!

Until now that is.

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, knock-off a few and diminish the list but more often than not, I’m eunuched. I can’t get it going.

I have a few bad habits – like for example, indulging in sweets – that I know, for the good of my own health, I should address. Yet, I don’t. I have perennial issues that arise but never seem to be resolved. For example, wanting to downsize but being unable to do more than a mere skimming instead of a real purge. I want to be successful in addressing these matters, but I just don’t seem to care enough to move the change forward.

This apathetic state is difficult to understand. I have always been one to be goal-oriented and to relish the sense of accomplishment.  Perhaps those “to dos” or matters of import are not important enough or perhaps I feel somewhat defeated given recent failed attempts to follow through. Perhaps my PD has  escalated to a point where such efforts are deemed pointless in the overall scheme of things. Or perhaps there’s another explanation.

In her blog last year, Bev Ribaud, says that  “apathy can be a major non-motor symptom of Parkinson’s disease. Combine it with fatigue, another major non-motor symptom, and it’s no wonder we Parkies can be seen as lazy, disinterested or uncaring by friends, family and even strangers. What causes apathy in people with Parkinson’s? It is believed to be due to chemical changes in the basal ganglia part of the brain. Dopamine is not only the primary neurotransmitter for motor control and movement, but it is also necessary for goal-oriented behavior, enjoyment and motivation. In other words, dopamine is our “feel good” chemical and as the dopamine levels in our brain get less and less, we no longer enjoy the things we used to and we become more apathetic. It’s not that we don’t care, it’s that we can’t care. Our dopamine deprived brains just don’t work like they used to”.

Interesting. So perhaps I do care but, because I can’t care, I think I don’t care. Or you think I don’t care.

But I do.

 

 

all i need

image
Click on the picture above to hear Steve Martin declare “That’s all I need”!

 

My two daughters recently returned from almost a year’s absence – one in Kingston, Jamaica and the other in Calca, Peru. As you can imagine, there are thousands of pictures to go through, lots to catch up on,  loads of laundry to do and plenty of stories to tell. As is usually the case, the stark contrast in cultures and living conditions, makes for quite a gulf between our worlds.

I heard a story of a woman who left home once a week for market day to sell her fruits and vegetables and earn the only money she would have until next market day. I heard the story of children who had to leave their parents home because the family could not afford to feed them. I heard stories of people scraping by to eek out a meagre wage for hard, physical labour. I also heard stories of how contented so many people were. It’s not like I’ve never heard or witnessed this before but, in the present context, I couldn’t help but wonder how those of us with PD would compare our lot in life in relation to such persons? Even more so, how does our life compare with those people is less developed or poorer countries and who also have Parkinson’s?

Follow any PWP (Person with Parkinson’s) blog and you will see that, by and large, the group is dominated by white, North American or English-speaking residents of the UK and  Europe. Again, not so surprising a revelation. My guess is most of us are also of sufficient means that we can afford the time and access the internet provides. There is lots of discussion about the PD condition, research in the field, options for care and treatment, and of course our fair share of moaning and complaining about the latest PD symptom or flare-up.  Yet, when we compare our present condition, with those disadvantaged in the developing world, we have a lot to be thankful for. Moreover, comparing our lot with those people in such countries that also have PD, we must surely consider ourselves fortunate. The medications available to us, the augmentative therapies, the surgical procedures and general overall access to health care – this is how we must view our condition – through a filter of privilege.

At a very personal level, I must confess to being somewhat sickened by the fact that the cost of one prescription drug to treat my PD costs almost $70,000 CAN per year. How many individuals in Peru or elsewhere in South America  who have Parkinson’s could be treated with a basicourse of generic levodopa for this amount of money? How many Jamaican’s or other Caribbeen residents with PD could receive some form of pain relief or therapy to ease their lives? Privileged? Indeed.

Yet, in spite of this, I will no doubt still rant and rave from time to time about my latest ailment. I will still bark and howl when I’m outraged. And I’ll likely ruminate about aspects of living with PD that some would consider benign at best. But I am happy to have my daughters home and happy they brought back this gentle reminder of life beyond our borders – of life that matters so much more.

Dancing in the Dark

the dance, kimmy4lsu, deviantart

Last month, I wrote about the “cult of celebrity of Michael J Fox” in the PD world and called for more attention to  the every day celebrities of those struggling with PD. Here’s a brief excerpt from that entry:

So, today, while Michael J Fox celebrates his birthday, I wish him well. But my thoughts are with Sam – a 77 year-old man diagnosed with PD just 2 1/2 years ago whom I met through my dance class. The last few months have not been good to Sam – he’s lost a lot of weight, his dyskinesia has dramatically increased, he is suffering from some cognitive issues, his speech has become weaker, and his mobility has been significantly impaired. Fortunately, he has a caring partner who is very supportive though he will undoubtedly be challenged as time go by. These are the kind of people we need to make lists of. These are the people whose stories we need to hear. These are the kind of people we need to support. Let’s celebrate their lives – these everyday celebrities!

I am saddened today to hear that “Sam” – otherwise known as Ian Maddison of Toronto – has passed away. I barely had the chance to know him and I miss him already. I’m sorry I didn’t have the chance to learn, and in turn, tell more of his story. I feel fortunate to have made his acquaintance this past year. Godspeed Ian.

too much jelly in the donut, good sir

the donut, JoaoPedroPG, deviantart

There was a time this spring when, for a moment, I seemed to have things pretty much together. My medications were working. My activity levels were rising. My spirits were buoyed. Sure I had lingering stiffness, some dyskenisis and ever-present problems like dystonia and bladder issues. But, generally speaking, in the moment, I felt like things were looking up. I could even look forward to a few good night’s sleep (up to five consecutive hours!). I seemed to have this PD thing under pretty good control!

Yet, as Shakespeare’s Othello said to Cassio, so I sayeth to you, dear reader: O fool! fool! fool!

You never have this thing under control. Living with Parkinson’s is an ever-changing challenge. This I get. And this spring, I wasn’t under any illusions in this regard. What was different I believe was that a few other every day problems or challenges were added to the mix. A washing machine had to be replaced. Car problems arose in our one and only family car. Seasonal chores started to overwhelm. A long-time friend suddenly took ill and was all too quickly taken from us. More jelly added to the same size donut. It had suddenly become all too much to handle alone.

And therein lies the rub (forgive me but can you tell I’m making plans for summer Shakespeare season).

It seems that when I can slow my life down, or simplify it enough so as to reduce or control the interference of these every day problems, I feel more able to cope with the problems of PD. I know that we cannot shield ourselves from life’s complexities, but is illustrative of the additional challenges faced by those living with a chronic condition.

At the same time, the more engaged and active I am socially, physically, mentally – the better I feel. The more jelly I stuff into the donut that is my life, the more full I feel. And subsequently, the less room I have in my life for such complexities.

It’s a delicate balance and if there’s a recipe for success,  I haven’t found it yet. All I know is that, at the moment, I could stand for a little less complexities in the mix. In subsequent blogs, I will explore this notion more and hope you’ll follow. Until then, have a good summer. Fare thee well in thy travels, and may by fate we meet again!

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This month’s readers’ poll!

Submit your feedback for a chance to win! Would you say that the author of this blog has:

A – Got it right! He captures the essence of the issue.

B – Spoken with an infinite deal of nothing.

C – used too many donut and Shakespearean references in the same breath