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Tuesday 29 January 2013

Rocks me like the Rock of Ages.....

Every PWP should be lucky enough to have an understanding caregiver. Mine is my wife of almost 40 years. She doesn't need to give me care at the moment; although, she has started to keep a diary of my symptoms, doctor visits and exercise regime. She also gives me tips on how to remember my pills, which I intend to start taking tomorrow, next week at the latest. She is a physiotherapist and that helps. She is great and has been throughout our marriage. I have never considered divorce, murder sometimes, but never divorce. I am a lucky man.

I wish I had taken her advice yesterday - about taking my pills. I am supposed to take them 4x per day. Yesterday, I remembered to take them only 2x. I paid for it later. When I was about to fall asleep, a cramp inserted itself into my left leg but, I handled that quite easily by standing for a couple of minutes following which, I quickly fell asleep. Two hours later my right calf went ridged - that woke me up and I didn't realize what was happening until my toes started to curl under and my foot tried inching its way upward and inward. My God! I HADN'T TAKEN MY PILLS! I was in agony and had to stand for about 7 minutes until the cruel cramp began to release me. I immediately took one amantadine and a double dose of mirapex and lay back down. The pain subsided, but the shadow of the pain remains even now, after 24 hours.

Lesson learned? You would think so, wouldn't you? But, before starting this entry, I was immersed in my work and forgot to take my third dose today - only a couple of hours late.

I have a astonishing ability to forget, which has long served me well, allowing me to experience oblivion when it suits me. But now is not that time. I will remember my drugs because I will take my caregiver's advice tomorrow.....well, hopefully. We'll see.

Saturday 26 January 2013

As I walk along, I wonder what went wrong...

When I walk, as I do just about every morning, I become detached, a complete Zen experience. Oh, I am still in reality and can watch for cars, etc but the air around me belongs to a different world, one composed of distant thoughts. Mostly those thoughts are positive and reassuring but every once and a while, some alien thought creeps into my head to remind me I have PD. At the present time, PD is just an unwelcome and intrusive invader that I can keep under control with an optimistic outlook and drugs. Then, suddenlly, a thought spasm cripples me and I know I will have problems in the future and PD will become more than just a nuisance. Very rude of it isn't it?

Today, I had those negative thoughts because I spent the whole two miles of my walk resisting the urge to chase my centre of gravity as it tried to jump out in front of me, with the intention of dragging me into a fall. I tried marching, which had helped a few days ago; but this time, it was ineffective. I tried turning in a circle and making my first step a big one. This bought a few blocks of relief before I had to do it again. But, I went the entire distance and did not fall.

It is at times like this that I read entries on the Parkinson's UK Forum where you can discover stories of PWP living good lives 7,10 or more years after diagnosis and my optimism returns

I watched an interview with Michael J. Fox and he seemed totally normal, with the exception of the PD speech pattern and mild dyskinesia. He remarked that although he was moving around a lot today; 5 years before, he would not have been able to sit in a chair and be interviewed because his dyskinesia wouldn't have permitted it. This made me feel better as the drugs are being improved to help control the symptoms. I look forward to his new series, essentially about himself with parkinson's.

By the end of my walk, I realized I was part of a community with Michael J. Fox leading us onward and upward. As some Zen master might have said, "Behold I stand on the bridge and look into the water, but the water floweth not, but the bridge doth flow."

Have I attained enlightenment?

Wednesday 23 January 2013

Something's happening here. What it is ain't exactly clear.

If I had to guess, I would estimate that fewer than one percent of you have it as cold as we do here. In fact, I think we live in the coldest major city in Canada. It is currently -24C or about -30C with the windchill (that's 11 below and 22 below for USA readers). But that didn't stop me from taking my morning constitutional.

It is COLD; surprisingly cold! Bare skin will freeze solid in 10 minutes. It is the kind of cold that cannot be described accurately. It is not possible for a person who is warm to understand how cold it is.

But, amazingly, I enjoy walking in cold weather. If you dress correctly, you can be warm on the coldest day. So today, I put on 2 pairs of long underwear, insulated wind pants, long sleeved t-shirt, sweat top, fleece vest, parka, half balacava for the nose, wool hat, and a neck warmer that I pulled over top of my hat to cover my nose, cheeks and neck. I looked like the Pillsbury Dough Boy with a problem. That problem was difficulty walking.

Here I finally get to the PD

I feel uncertain when I walk. It is as if my legs are weak and shaky. Again, I feel my center of gravity leaving my body to walk in front of me. I have to reel it back in by performing one of the tricks given to me by the wise ones on Parkinsons UK . I find that marching (hut 2,3,4, hut 2,3,4 etc) helps the most. It causes me to stand straight and concentrate on my footwork, which is hard to do with Jace Everett blasting "Bad Things" through my earbuds. Nevertheless it works, as do the other tricks suggested in an earlier post, although to a lesser degree.

My problem is, I don't know if I am imagining my center of gravity desert me or if my uneasy feeling is due to the uneven snow surface, the cold making me keep my head forward and down (to avoid freezing exposed skin on my face) or my bulky winter clothing. It almost seems too easy to prevent the uncontrolled falling forward that has happened to me twice in my PD career. Einstein once said, "A little knowledge is a dangerous thing. So is a lot.". That's me, I have enough knowledge about PD to be afraid of its symptoms, so even a clear, non-PD explanation of a PD-like symptom can set a suggestible person like me to thinking, and that's not a good thing.

So, I am suggestible, with a touch of OCD, and PD, all wrapped in an aging body. I am just trying to make sure the catalog of human woes is complete.

All in all, it was a pretty good walk.

Thursday 17 January 2013

In the middle of a basketball game when the ref yells out "Strike Three" (revisited)

I hate flying even though I tell myself that there are over 100,000 take-offs and landings every day and it is very rare that a plane crashes. I ask myself, what makes you so special that you will beat the odds and be in that one plane that crashes? Well, what were the odds I would get PD? Like the chances of being in an airplane crash, what made me so special that I should become a PWP?

An article I read estimated that after after 60, you have about 3 chances out of 100 of being visited by this condition. Not high odds of becoming a victim but the odds are not on your side if:

  1. You are over 60
  2. Male
  3. Have a family history of PD
  4. Were exposed to environmental toxins
  5. Caucasian

There's the rub; I am over 60, male and caucasian. 3 out of the 5 risk factors. Maybe 4 - toxins (running through clouds of DDT when the army was spraying for mosquitoes and I was a kid living in an army camp) No wonder I hooked up with PD!

But, I am a robust, healthy male who looks after himself both physically and mentally. I was going through life happily anticipating the future when kaboom, PD decided to break into my dream and make a nuisance of itself now and in the future.

Totally unexpected.

Life can be like that. Things can be going smoothingly when the gods decide to have a little laugh and make you the butt of their joke. But, PD is not the worst thing that can knock you down. In fact, I consider myself lucky. Firstly, it is the best degenerative brain disease that can befell you, because the symptoms are controllable and secondly, you are not dead. That would be the nastiest interloper for a relatively young person. You expect, and may even welcome, death after your mid-eighties but not in your fifties and sixties. I mean, what are the odds?

An acquaintance of mine, younger than me, got out of bed, turned on the light and dropped dead. Here was a man who appeared to be in good health, a kind, caring artist and poet, who led a good, clean life and suddenly, he is not here anymore. What were his odds? Why did the ref call strike three in the middle of his basketball game? Nobody knows. Everybody cares. Good bye and have a good journey David.

I would rather have PD than meet the grim reaper, but..... you never know.

That famous philosopher, Eminem, once said

The truth is you don't know what is going to happen tomorrow. Life is a crazy ride, and nothing is guaranteed.

Got that right rapperman.

Thursday 10 January 2013

Chaos is good for the soul

I am on my morning walk. Winter seems to have taken a vacation. Usually, at this time of year we are in the -20C to -30C range but today is warm at -3C. I look up at the giant elms that line each side of the street. They look maleficent in their starkness and I note there seems to be an element of chaos in the many branches of branches of branches, etc.

I get to thinking about of Chaos, with a capital "C" that rhymes with "E" and that spells "entropy". I had looked the word up on the internet about a week before and found that "one of the ideas involved in the concept of entropy is that nature tends from order to disorder in isolated systems" In other words, chaos is the natural order of things.

I give you an example of entropy in real life. Yesterday when I sat down at my work space, all my files were in neat little piles, organized according to deadlines. I had consciously ordered my desk the day before. However, by noon, my work space must have been hit by a hurricane. Files were all over - a complete lack of order. Even though I had consciously "ordered" my files one day, I had unconsciously "disordered" them the next day. It took planning and effort to order them, but I hadn't even noticed they were becoming disordered. Entropy - the natural order of things. Look beneath the surface of any ordered system and you will find chaos.

This rambling brings me to Parkinson's. My body is suffering from chaos. Last night I felt that chaos in my left leg. I guess it was a tremor but it is impossible to describe. I will give it a shot. It was like a rolling tremble that began in my thigh and rumbled down to my knee. It only lasted for 2 or 3 tremors, but it made me sit up and take notice. I had recently thought that PD was seeking a place in my left side because my left hand little finger sometimes did a jig, but the mysterious leg rumble, I think, has confirmed that PD is winning. Chaos is taking over. So, as the PD progresses, I will have to consciously bring order to the system. How? you may ask. With drugs of course. I upped my morning mirapex to 1.5mg and have not had any problems since. My body is in order, outwardly, but inside, the dopamine producing cells continue to die off and PD is working hard to have disorder rule the day.

There is nothing I can do to stop it. Someday, I will have to accept Chaos. When that happens, I hope that Chaos will gently accept me.

Friday 4 January 2013

Doesn't a lightning rod on a church steeple indicate a complete lack of confidence?

On one of the PD forums I visited recently, there arose a discussion as to whether or not God exists and if he does exist, why does he permit the existence of disease. I didn't get into the whole thing because, I am afraid, this puny (deteriorating) mind of mine can't contemplate the metaphysical to any great degree. However, had I entered the round table, I would have contributed these three thoughts

  1. I don't believe in the "big bang" theory of the creation of the universe, despite the accumulation of evidence that the whole shebang began from a singularity (whatever that is). I think the universe has always existed and will always exist. The only certainty is change. The existence of the universe is not necessarily evidence of a God who created it because, in my philosophy, there need not be a beginning or an ending just because they both exist on earth.
  2. The Star Wars "god", the FORCE, makes more sense to me than a bearded man lurking somewhere above the clouds. My Force is everywhere, waiting to be discovered. It may even be so powerful that mere humans can communicate with it through prayer and face it, all of us have used prayer at one time or another.
  3. My force does not hover around, waiting to strike down humans with a disease. That is just a matter of chance and bad luck. Something, somewhere, has caused me to get PD. It's nobody's fault so there is no one to blame and prayer just takes the edge off (the very few times I might have resorted to it which, I admit, I can't remember if I have done so since diagnosis. Probably not.)
  4. I don't think religions have the answers, seeing as how they all are different in their beliefs and probably none is correct.

So I don't get emotionally involved with any of the questions that begin with "Why me?" and the question of the existence of God. Maybe disease is one of God's little mistakes, like earthquakes and tornadoes; although, as Archie Bunker said in a recent rerun of All in the Family, "God don't make no mistakes. That's how he got to be God."

Wpgchap has left the blog.

Nota bene - the use of the pronoun "he" as a reference to God is an all inclusive use, meant to include the possibility, however remote, that God is a woman. If a female were in charge, the world would not be as absurd as it is now.

Wednesday 2 January 2013

Rhinos are just fat unicorns.

I know a person who, if she sees a range of symptoms, she immediately adopts the illness. She does the same thing with side effects of medication. Kind of a sad way to live. On the other hand, I find it hard to believe I have PD even though it has been confirmed by 3 neurologists. I have had odd pains, cramps, etc for 30 years and have dealt with them without thinking they may have been pre-cursors of a degenerative brain condition. I never bothered to look any further than a diagnosis of fibromyalgia and even then, I didn't delve into it too deeply.

Ignorance is a required form of bliss when you are a PWP.

PD is an odd condition. It won't kill you, it will just make life a little more difficult as it progresses. Two years after diagnosis, I feel no differently than I did before the hammer fell, that is, if I haven't forgotten to take my medication, which I did yesterday. I missed two doses of the pills that fool my body into thinking it is making dopamine. As a result, my hand tremor became apparent and my right leg felt unduly weak, such that I was pretty unstable. After taking my meds the rest of the day and this morning, I am returning to normal. I bought a new phone to perk me up, a Galaxy Note 2, with an alarm feature to tell me when I should be medicating myself.

But, I am getting off topic. I was talking about symptoms and oddities. Here are some warning signals I know about:

  1. a weak feeling in the hands. This feeling cannot be sufficiently described, but if you have it, you will know what I mean. Even without description, my GP referred me to a specialist. I wasn't going to keep the appointment until I developed a....
  2. tremor in my right hand - but curiously, tremor is not always present in PD, even though the condition was called Shaking Palsy in the old days. It was my inability to control my tremor that caused me to keep that appointment with the specialist.
  3. loss of one's sense of smell - which proved to be a problem when a sewer pipe below our basement floor broke and everyone but me could detect the faint odor. I thought they were nuts. They weren't.
  4. loss of sense of taste. That really hasn't occurred to me; although, I do like spicy food more than ever before.
  5. One arm doesn't swing when you walk. Again, this has not been a problem for me.
  6. a leg drag - I only know of one PWP who has a lazy leg. I have not had to deal with that. I understand it is often a symptom of PD.
  7. the Michael J. Fox finger dance. He went to a doctor after one finger kept jumping around. That only happens to me when I want to point to something, which I try to avoid.
  8. loss of voice to the extent that you think everyone is going deaf when they say to you "What's that? What did you just say?"
  9. ratchety movement when bending at the elbow. I have never felt it, but my wife, who is a physio, says it is present when she works on my arms.
  10. depression - usually later in the progress of the condition. Not on my watch. I hope to avoid it.

Those are just some of the early symptoms and they are not always all present. As I said, PD is an odd condition. It is totally unpredictable since it differs from person to person both in symptoms and progression. Therefore, there is no use worrying about the past, it never was, and there is little to gain by worrying about the future, it cannot be predicted and as for the present, well, I forgot to get one for my wife's birthday.

Man: I have been seeing spots in front of my face all day.
Woman: Have you seen a doctor?
Man: No, just the spots.

A bientot.