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Monday 23 December 2013

But baby, it's cold outside.

Christmas is two days away and it is unseasonably cold here. Normal temperatures for this time of year hover around -10C. Today, with the windchill, it reached -44C. Just a touch chilly! This kind of cold does not usually arrive until the middle of January and into February. That's when we leave the frozen prairie for 3 weeks in Florida. Thank god for Florida, the land of heat, hedonism, spring break and, well....... go see for yourself.

But enough of that and on to PD.

A few days ago, a friend asked me if cold affected my PD and I absentmindedly answered "no". I also answered "no" when my son-in-law asked if I thought the heat of Miami Beach helped suppress my symptoms. I was wrong on both counts. I wear good winter mittens and yet my fingertips get so cold they tingle, as if I had a nerve problem and, maybe I do, but it only occurs when I get seriously cold. In Miami, I don't have that problem. There, I have no problems, except I miss my grandchildren.

They say happiness is good health and a bad memory. I wonder how I fit into that definition?

Only 8 more weeks until we head south. Gotta love Florida. The best way to describe Miami Beach is that it is different. I have only been to 3 foreign countries in my lifetime, the USA, Great Britain and South Miami Beach.

Wednesday 18 December 2013

Dream along with me. I'm on my way to the stars.

I had one of those vivid, virtual dreams last night. It was unusual in its intensity and involved lots of thrashing around. Of course I only remember it in flashes

  1. I am walking down the beach with another person when somebody yells "LOOK OUT". I automatically duck, in time to see a huge boulder fly over my head. I look around and see a muscular man "shot putting" boulders.
  2. As I approach, I notice there are two men; a skinny guy is picking up the boulders and under-handing them to the throwing man who is 5 feet away. I say, "you shouldn't be doing that on the beach. It is dangerous." The two men look at me and the skinny one picks up another boulder, tosses it to the muscleman, who then shotputs it far over my head. They are not going to stop, so my companion sits down to watch and I continue up the beach.
  3. I am outside a bank and I see a police car pull up and stop across the road. I go into the bank and find two other men, both strangers to me. They rob the bank and I try to tell them the police are just outside, but I can't get the words out. The robbery continues while I watch.
  4. We leave the bank and are confronted by a spewing of bullets from the police car, but I see no policemen. I yell "run". The two robbers are killed.
  5. I am in jail. I don't know how I got here. I am confused and scared. I try the cell door. It is locked. I call out but nobody answers. I can see the entire interior of the jail. The place is deserted!
  6. I wake up and spend the next few minutes trying to remember the dream

I bet a psychiatrist would have a field day with that. I am no psychiatrist, but even I can see a metaphor in there. I would seek out a psychiatrist but I don't really need one. I already know I am a bit odd. The dreams just proves it.

As Rodney Dangerfield joked, "I told my psychiatrist that everyone hates me. He said that was just ridiculous - I hadn't met everyone yet." or words to that effect.

Tuesday 17 December 2013

Arms and the Man

I was lying on my back on the couch watching TV. My left arm was bent so that the elbow rested on the back of the couch and my hand was on my cheek. Have you ever been so tired that nothing can keep you from falling asleep? You always let Hypnos take you, didn't you? Me too. But not this time. As I was about to drift off, at that point where consciousness is leaving, but you are still semi-awake, my left arm shot straight up and became rigid, and I mean RIGID, for the blink of an eye, pointing accusingly at the ceiling as if it was aware of something there beyond my ken. That woke me up! There was no pain involved, just good, old fashioned, "What the hell was that?" and my arm relaxed. You would think I'd be used to twitching muscles, but this one was sudden and particularly violent.

I have written about these contractions before, but this time was different. the worst thing about the incident was it occurred on my left side, which so far has been spared the battering of PD. Is it beginning to take all of me? Or is this just a one-time, super twitch? Who knows? Who cares? And the game goes on.

If you are looking for a really good site, go to Parkinson's UK. There is a wealth of information there, nicely organized and a lively forum. Much of what I know came from the authors of the site and the people on the forum.

“Here's Death! twitching my ear: "Live," says he, "for I'm coming" (Virgil)

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Friday 13 December 2013

We all have a cross to bear....

My cross is parkinson's and after 3 years, it still hasn't sent me to a dark place. In fact, it actually got me writing again and that is perhaps the only good thing about the condition unless, like me, you are happy to be constipated, after so many years of battling the aztec two-step. For the most part, drugs have made me normal. I take amantadine and the agonist, mirapex. So here is a little ramble about dopamine agonists.

  • the first thing you should know is that they do not produce dopamine as Levadopa does. Rather, the agonists mimic the effects of dopamine, essentially fooling the brain into thinking everything is A-OK.
  • There are many different DA's which are chemically different and which differ in duration and side effects.
  • Each DA appears to have at least one alias, for example, the DA I take is Mirapex, aka pramipexole, aka mirapexin and I think, aka sifrol.
  • There are some pretty freaky side effects to this drug, some of which are compulsive behaviours. People on mirapex have bankrupted their families due to drug-induced compulsive gambling.
  • Fortunately, the side effects are absent for me, but I understand that the compulusions can arise at any time and chances of them arising increase as the dosage increases.
  • I realize that out of necessity, my dosage will eventually increase as my symptoms get worse.
  • The maximum dosage for mirapex is 8mg per day. I am now at 4mg daily.
  • For me, the drug worked the day I started it. The tremor in my right hand ceased. However, it may take others some time to adapt to the drug and some may not be able to stomach it and require a different DA

How the doctors determine which DA to start a patient on, I do not know. If you have come here to be educated, be aware, I know which end of the horse to avoid but that is the extent of my knowledge of horses. My knowledge of DA's is similarly stunted.

As Thomas Aquinas once said,"hominem unius libri timeo" which loosely translates to "fear the man of one book".

That's all folks.

Monday 9 December 2013

I want to inspire, and be inspired.

in·spi·ra·tion (nsp-rshn)noun.
  • Stimulation of the mind or emotions to a high level of feeling or activity.
  • The condition of being so stimulated.
One person who (unknownly) inspired me right from my diagnosis was Chris. At the time, he moderated a small forum on PD that he has since let lapse in favour of a presence on facebook. I believe it has been 9 years since his diagnosis and a couple of years ago he returned to university. He keeps a blog entitled "Wearing off" and his most recent entry details some of the problems he might soon encounter in doing a presentation before his class mates. It gives you a good idea of what PWP must deal with. You can find it here and it is an interesting read. I am inspired by his approach to PD. He doesn't let it get him down and he carries on a life that is almost normal. Makes me think I still have a few good years left.

Living with PD requires creativity. The creativity of Chris, and others, inspires hope, optimism, and a desire to help inspire the newly diagnosed.

Saturday 7 December 2013

Walkin', yes indeed, I'm talking....about

I was driving away from the movement disorder building, when I chanced upon a woman walking along the sidewalk. She was much younger than I, but she moved like an old lady. She was stooped at the shoulders in a sort of semi-quasimodo effect, her steps were short and she slowly shuffled along. Classic PD, I thought to myself and then I realized she had caught me staring and I was the recipient of a pronounced "look". I wanted to stop the car and explain that I too, was a victim of the condition and I was simply trying to ascertain if I was looking at my future. I was too ashamed to stop. I kept driving but I was full of questions...was she the victim of young onset PD? how long ago was she diagnosed? Didn't the agonists work for her and if they did, how long ago did they stop? Was she on L-dopa and, if she was, why didn't it work? Was she on an "off" period? Was she considering deep brain stimulation? All of my fears went unanswered but unfortunately, I think I will eventually be able to answer them myself.

As I have said before, my symptoms seem to come and go but seem to be constant when I am walking. Certainly, I walk more slowly than I did a few months ago, but sometimes I feel like I am walking through treacle. And my right hand! My right hand, when hanging by my side as I walk, is possessed. It constantly shakes and I can only exorcise its movement by sticking it in a pocket at chest height, causing the twitching to cease... until I next let it loose.

Other than the bad hand that dominates my walking, I have returned to period of grace, with my symptoms held in check by the drugs. If there is a God, I thank him/her for that.

A few days ago, I reported being unable to get out of the bath tub. I am happy to say there has been no repetition of that little incident. It scared the poop out of me because I had convinced myself my PD was progressing slowly and this was a major setback. Now I put it down to an isolated occurrence that could happen to anybody my age and I am back on track to last a few more good years. At the same time I wonder if I am trying to drive out my obsession with the rapidity of the condition's progression by giving vent to it in my writing.

As some poet wrote (I have no idea who. This verse is all I can remember)

Who can tell, so grimly schooled
Such lord of self he seems
If devils that are mute by day
Assail him in his dreams"

Good night and sweet nightmares.

Tuesday 3 December 2013

Rub - a - dub Part 2

Successfully exited the tub today without incident. I guess it was just one of those things; one of the little joys of the shaking palsy.

Monday 2 December 2013

Rub - a - dub - dub

Woke up, got out of bed and went right to the bosu ball. I am getting quite good at it and it gives me a great workout. Spent about a half hour bouncing around. No balance issues. In fact, I was feeling pretty good, all in all.

I had to be at the dermatologist's at 7:45 AM for my annual skin checkup and I thought I should bathe before he began investigating my skin with a magnifier.

And then "IT" happened.

I poured my bath, got a book and relaxed for twenty minutes, reading and soaking away all my worries and woe. I would have stayed submerged for longer, but it was time to get ready.

Now, I ask you, have you ever had one of those days when you know you can do something, should be able to do it, especially since you have done it a thousand times before, without effort, because it was so easy? Something so simple a toddler could do it, but you are having a problem. This was one of those days.

I couldn't get out of the bathtub!!

I went to get out, but my muscles had other ideas. My arms buckled as they strained against the edges of the tub and my legs were of no help at all. Three times I tried, and each time I slipped and fell back into the water. What to do? What to do?. Finally, after trying, and failing, to use the conventional method of exiting a bathtub, commonly referred to as "standing up", I turned onto my side and flipped one leg over the edge of the tub and into a position that sort of helped me fall out.

I got up off the floor, stood up and immediately, I almost fell backwards. Balance issues! There was some mysterious force pulling me down from behind. I was light-headed. I leaned forward on the counter, looked at myself in the mirror and muttered, "So this is what they were talking about!"

To cut to the quick, in a few minutes I grew steady and was ready to take on the morning. Still, I awoke my wife to drive me to the clinic. I was too uncertain and a little shaken by the episode to drive. It may never happen again, like the doctor said about the festination incident, but if it does, I will be prepared.

It's just one thing after another!!

By the way, I will bathe again and I was given a clean bill of health by the dermatologist. Also, if there is one lesson I took from this, it is that those of us over 65 should never look at ourselves in a mirror. You might notice, as I did, that your stomach has grown in spite of all the exercise. I have just got to stop eating and I will...possibly... right after I finish this peanut butter sandwich. Friday at the latest.

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Sunday 1 December 2013

I ain't afraid of no....

Confucious say: "Success depends upon previous preparation, and without such preparation there is sure to be failure.

About 25 years ago, I went with two young guys (maybe 17 at the time) to a football game in late November. The temperature was -20C (4 below F), with a cool north wind. I dressed in long underwear, jeans, and sweatpants with double socks and thick artic boots on my lower half and from the waist up, a thermal undershirt, t-shirt, heavy sweater, down parka, garbageman mitts and a touque. I was prepared. The two boys picked me up and I was surprised to see that both wore jackets, jeans, running shoes. They had no hat and no gloves, but they did have an attitude. They razed me about being a phoney Canadian who couldn't take the weather. After all, they said, it's not that bad out there.

"Do you think it is September! Have you lost your minds! Have you two morons ever been to a game in November?" I asked and they replied that they had not, still full of bravdo and attitude

"You will freeze!" I said.

"It's not that cold out," one replied through a big smile.

"Well, that's true, but we will be sitting for at least 2 hours with a cold north wind winding up to send the temperature down. You are going to freeze."

"No way" was the response, "and anyway you gotta look cool and we look cool, very cool.

We found our seats and as half time approached, the two boys left to go to the washroom (restroom)where I told them there was heat. They remained macho and kind of glided down the stairs to their destination. Maybe they would be OK. Maybe I was overdressed but then, so were most of the fans in the stands.

Half time came and I decided to find them and I did. They were huddled below the bathroom heater and were in the process of wrapping toilet paper around their feet in an attempt to keep them warm.

I started laughing and in a second they did too.

"Boys," I said sarcastically, "You sure look cool now, very cool, with toilet paper sticking out of your socks!

I had come suitably prepared; they had not and they missed most of the game.

Over the years, I kept in touch with one of boys, who is now a successful Toronto business man, and we get together a couple of times a year and invariably the chatter gets to that football game and we enjoy it all again.

What's this got to do with PD? I hear you asking. Not much. It is a parable. I prepared for the game and was able to stay until the end without freezing. The boys were not prepared and spent most of the second half in the bathroom, and missed the action. My battle is with PD and although I can't win ---yet--, I am preparing for the fight, eating right, avoiding stress, taking my meds and most of all, exercising. I am hoping this kind of preparation will keep me relatively free from symptoms right up until the end of the game. If you don't prepare, it will cause you to miss at least half the game huddled in your sanctum sanctorum.

There is no metaphor in the toilet paper.

Keep warm, that is the lesson for today.