It has been a year since I first noticed the tremor in my right hand. Curiously, at that time, the tremor only arrived following a hard workout. It wouldn't last long and I just put it down to excessive exercising. Then, in Miami Beach, it would hit me after a long run in the sun and lasted longer. I put up with it for a month before seeing a neurologist.
In that year, the tremor has settled down, probably due to the drugs; although, many mornings I go for my walk without having taken the drugs and my hand is not bad at all. I should rejoice, but in the back of my mind there is this little voice telling me PD is not going away and will only get worse. That puts a damper on any rejoicing I might be due.
We head back to Miami Beach in 3 weeks for an extended (for us) vacation. I hope to keep all stressors away from my brain and just relax in the sun; well not totally relax, I will run the beach everyday. No stress should keep the tremor at bay and running (exercising) is supposed to slow down the progression of the disease.
The joys of a degenerative brain disease! Maybe I should take Archie Bunker's advice:
You'd better start mixing toothpaste with your shampoo. You're getting a cavity in your brain.
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Saturday, 28 January 2012
Tuesday, 24 January 2012
Balls to Mr. Banglestein
The physiotherapist recommended exercises that help with balance so, with that in mind, I bought a Bosu ball. You know the kind, it is a half a large rubber ball on a plastic base. These things are practically indestructible. The simplest exercise is just standing on top of the ball. Should not be a problem, right? WRONG. I thought emphasizing balance was over the top and unnecessary. It is a good thing I didn't open my mouth and put my foot in it by criticizing the physio's advice.
Here is how it went when I brought it home. My son (35) was visiting with his two boys (5 & 3). The boys took an immediate liking to the ball and were jumping on it, standing still on top, both legs or one leg. My son joined in with the same amount of effort as the boys, which was none, and he also added squats and a jumps off the ball. Nobody had any trouble standing on that thing. It all looked very easy.
My turn.
I stood on top of the ball and it was like standing directly over the epicenter of an earthquake. I couldn't stay still. My legs wobbled and I flung my arms out in a desperate, albeit fruitless, attempt to remain stationary. I managed a few seconds and then stumbled off. Age or PD? Which should I blame? My second attempt was a little better until I closed my eyes at which point no amount of arm flailing could keep me upright. Off I went like an out-of-control human windmill.
The next day, I thought I would try without an audience. With eyes wide open, I managed about 40 seconds with my arms thrust out like a figure skater trying to slow down. With eyes closed, maybe 3 seconds of success. The book of exercises that came with the ball then suggested trying one leg at a time. Do I seem stupid? That is never going to happen!
I did other exercises for strength using the ball and I am here to tell you, they are hard. Using the ball and an exercise resistance band, I got as good, or better, workout than I get at the gym. I highly recommend them for strength training but for balance....? Who knows, if I keep on trying, and I will, maybe I will improve.
In the meantime, I have to find balance between insanity and illusion.
Here is how it went when I brought it home. My son (35) was visiting with his two boys (5 & 3). The boys took an immediate liking to the ball and were jumping on it, standing still on top, both legs or one leg. My son joined in with the same amount of effort as the boys, which was none, and he also added squats and a jumps off the ball. Nobody had any trouble standing on that thing. It all looked very easy.
My turn.
I stood on top of the ball and it was like standing directly over the epicenter of an earthquake. I couldn't stay still. My legs wobbled and I flung my arms out in a desperate, albeit fruitless, attempt to remain stationary. I managed a few seconds and then stumbled off. Age or PD? Which should I blame? My second attempt was a little better until I closed my eyes at which point no amount of arm flailing could keep me upright. Off I went like an out-of-control human windmill.
The next day, I thought I would try without an audience. With eyes wide open, I managed about 40 seconds with my arms thrust out like a figure skater trying to slow down. With eyes closed, maybe 3 seconds of success. The book of exercises that came with the ball then suggested trying one leg at a time. Do I seem stupid? That is never going to happen!
I did other exercises for strength using the ball and I am here to tell you, they are hard. Using the ball and an exercise resistance band, I got as good, or better, workout than I get at the gym. I highly recommend them for strength training but for balance....? Who knows, if I keep on trying, and I will, maybe I will improve.
In the meantime, I have to find balance between insanity and illusion.
Friday, 20 January 2012
“As any action or posture long continued will distort and disfigure the limbs...."
I had my first physio appointment at the movement disorder clinic. The physio was very knowledgeable about PD and how to prevent/lessen its ravages. She did a thorough assessment and provided stretches and strength exercises, but the greatest emphasis was on posture and the object of her stretches and exercises was to help the body maintain good posture.
PD tends to cause the shoulders and neck to roll forward, while also causing the PWP to take small steps. Therefore, I must correct my posture to train the muscles to keep my shoulders back and my head up and I must train my mind and muscles to take big steps. The regime of exercises she gave me is not onerous and I should have no trouble doing them. If I get lax, I am sure my wife will set me straight (no pun intended).
The key to a healthy body and good posture appears to be flexibility because PD causes the muscles to tighten up. She asked me if I wanted to try Yoga or Pilates,
" Well...ah...um...but....huh?"
As soon as it has been reliably ascertained that hell as frozen over, then, and only then, will I try those methods.
So, not wanting to look like an idiot while trying to turn myself into a pretzel, I declined her kind offer. I will get my muscles stretched by myself, in private, thank you very much.
Blessed are the flexible, for they shall not get bent out of shape.
PD tends to cause the shoulders and neck to roll forward, while also causing the PWP to take small steps. Therefore, I must correct my posture to train the muscles to keep my shoulders back and my head up and I must train my mind and muscles to take big steps. The regime of exercises she gave me is not onerous and I should have no trouble doing them. If I get lax, I am sure my wife will set me straight (no pun intended).
The key to a healthy body and good posture appears to be flexibility because PD causes the muscles to tighten up. She asked me if I wanted to try Yoga or Pilates,
" Well...ah...um...but....huh?"
As soon as it has been reliably ascertained that hell as frozen over, then, and only then, will I try those methods.
So, not wanting to look like an idiot while trying to turn myself into a pretzel, I declined her kind offer. I will get my muscles stretched by myself, in private, thank you very much.
Blessed are the flexible, for they shall not get bent out of shape.
Thursday, 19 January 2012
Still crazy after all these years
As I wrote in a previous entry, mirapex can cause hallucinations. I have now had a few. They are momentary (maybe a second) and I can't say for sure they are not dreams because they come as I am zoned out, falling asleep or as I am waking up. They are not disturbing and I can chuckle at the thought of them. Here are a few examples:
It is early in the morning and I am sitting on the sofa in the living room reading from my Kobo reader. Out of the corner of my eye I notice a tall man standing at one end of the sofa. He seems to be cleaning his glasses. I remember he is wearing a vest. I turn my head in his direction and there is nothing there.
It is near the hour when I usually fall asleep and I am lying in bed watching TV. Again from the corner of my eye I see a woman in a red dress moving by the side of the bed. I look in her direction - nothing.
I am awakened by the sound of dogs growling on the other side of my bedroom door. I think my daughter is visiting with her animals. It is 4:30AM and I wonder what the problem is that she should be here this early. The dogs stop growling. I get up and I open the door. No dogs! My daughter is no doubt asleep in her bed in her home.
The common denominator is in each instance - I was tired. Dreams? Drugs? Or maybe I am just going nuts?
Fortunately, I have not had any "hallucinations" in the past few days.
It is all rather confusing. As Stephen Wright said, "If God dropped acid, would he see people?"
He might if he were on mirapex!
It is early in the morning and I am sitting on the sofa in the living room reading from my Kobo reader. Out of the corner of my eye I notice a tall man standing at one end of the sofa. He seems to be cleaning his glasses. I remember he is wearing a vest. I turn my head in his direction and there is nothing there.
It is near the hour when I usually fall asleep and I am lying in bed watching TV. Again from the corner of my eye I see a woman in a red dress moving by the side of the bed. I look in her direction - nothing.
I am awakened by the sound of dogs growling on the other side of my bedroom door. I think my daughter is visiting with her animals. It is 4:30AM and I wonder what the problem is that she should be here this early. The dogs stop growling. I get up and I open the door. No dogs! My daughter is no doubt asleep in her bed in her home.
The common denominator is in each instance - I was tired. Dreams? Drugs? Or maybe I am just going nuts?
Fortunately, I have not had any "hallucinations" in the past few days.
It is all rather confusing. As Stephen Wright said, "If God dropped acid, would he see people?"
He might if he were on mirapex!
Tuesday, 17 January 2012
It is so cold my campfire froze
Went for my walk at 5AM this morning - the usual 2 - 3 miles (funny, we have had the systeme internationale for about 40 years now and yet we still use imperial units for distance!). For those of you who have never experienced a winter on the Canadian prairies, let me say, IT IS COLD! To get ready for my walk, I put on thermal underwear, a thin pair of sweatpants, ski pants, tee shirt, sweatshirt, inner jacket, parka, face warmer, insulated boots, and trapper's hat. I stick my ipod into the mitt on my right hand (never wear gloves, even the most sophisticated gloves are too cold) and then I dare to venture out. The first 3/4 of a mile, my right hand is quite active. Today, it felt like it was keeping time to the beat of the Paul Simon song, Boy in A Bubble, that was playing on my ipod. If you know the song, you will know how fast my hand was dancing. I can often calm it down by pressing it against the ipod, but that takes thought and I usually lose myself in the music, forget to keep my hand tense, and it again takes on a life of its own. In another half mile or so, it calms down and I only get the occasional twinge.
Today, it was -27C (about 17 below). Not too bad, but we all know we will have colder days.
Last year, when we went to Florida, we left when the temperature was 40F below and when we arrived in Miami a few hours later, the temperature was 80F above. Only a difference of 120 degrees! We visited the Jewish Museum where we met an elderly (late 70's) little jewish lady (and I mean "little"). We told her we were from Manitoba. She asked what it was like there this time of year.
"When we left, the temperature was 40 below."
"OH MY GAWD! How do you people live there?!"
One year, an article in the Miami Herald, forecast a cold front (high temperature about 50F (10C) and the writer wrote, "With the cold front coming in, make sure you dress warmly. The tourists will laugh at us, but it is better to take care of yourself...".
I actually saw locals wearing parkas while the tourists still wore short sleeves.
We prairie Canadians know how to handle the cold because we are cold all the time. Perhaps that is why so many of us ask to be cremated upon death.
Just another rather uneventful PD day.
Today, it was -27C (about 17 below). Not too bad, but we all know we will have colder days.
Last year, when we went to Florida, we left when the temperature was 40F below and when we arrived in Miami a few hours later, the temperature was 80F above. Only a difference of 120 degrees! We visited the Jewish Museum where we met an elderly (late 70's) little jewish lady (and I mean "little"). We told her we were from Manitoba. She asked what it was like there this time of year.
"When we left, the temperature was 40 below."
"OH MY GAWD! How do you people live there?!"
One year, an article in the Miami Herald, forecast a cold front (high temperature about 50F (10C) and the writer wrote, "With the cold front coming in, make sure you dress warmly. The tourists will laugh at us, but it is better to take care of yourself...".
I actually saw locals wearing parkas while the tourists still wore short sleeves.
We prairie Canadians know how to handle the cold because we are cold all the time. Perhaps that is why so many of us ask to be cremated upon death.
Just another rather uneventful PD day.
Wednesday, 11 January 2012
Sit back and I will have a look
My voice is getting softer by the day. I am growing weary of people saying, "Pardon?" or "What's that?"; you get the picture. The speech therapist referred me to an ENT doctor to make sure that it was not something else causing my voice problems - just PD.
Today I went to that doctor. He was quite personable and (drum roll) punctual!! I sat in a chair while he gathered up an instrument that looked like a black box with a kind of cable coming out of it.
"Sit back and I will have a look. OK, I am just going to freeze one nostril and stick this camera up into your nose and down your throat."
"What's that? You are going to do what?"
"I have to look at your vocal cords. This is a camera that will allow me to see them in action. Relax, it isn't as bad as it sounds."
I am no wimp when it comes to medical procedures, so I decided not to fuss. Besides, I once taught a student who could sniff up a string through his nose, swallow it and bring it out his mouth. He would then amuse the class by tugging at each end, one at the nostril, the other at his mouth. The students told me all about it and he offered to show me but I politely declined. Anyway, if he could do that, what's a little camera in comparison.
The doctor sprayed some foul tasting liquid into my nose, waited a second, and then inserted the camera. I could feel it travel up my nose and down my throat, like some insistent snake. He moved it around (somewhat uncomfortable) and told me to say "eeee". Then he removed the camera. It was no big deal. He told me all was good and sent me on my way. The only after effects were the taste of the liquid he shot up my nose and a feeling in the nostril, the one that had served as the gateway, that my nose was leaking. It wasn't. It was bone dry.
By the way, when he first entered the room and introduced himself, I couldn't hear him. He spoke too softly.
Today I went to that doctor. He was quite personable and (drum roll) punctual!! I sat in a chair while he gathered up an instrument that looked like a black box with a kind of cable coming out of it.
"Sit back and I will have a look. OK, I am just going to freeze one nostril and stick this camera up into your nose and down your throat."
"What's that? You are going to do what?"
"I have to look at your vocal cords. This is a camera that will allow me to see them in action. Relax, it isn't as bad as it sounds."
I am no wimp when it comes to medical procedures, so I decided not to fuss. Besides, I once taught a student who could sniff up a string through his nose, swallow it and bring it out his mouth. He would then amuse the class by tugging at each end, one at the nostril, the other at his mouth. The students told me all about it and he offered to show me but I politely declined. Anyway, if he could do that, what's a little camera in comparison.
The doctor sprayed some foul tasting liquid into my nose, waited a second, and then inserted the camera. I could feel it travel up my nose and down my throat, like some insistent snake. He moved it around (somewhat uncomfortable) and told me to say "eeee". Then he removed the camera. It was no big deal. He told me all was good and sent me on my way. The only after effects were the taste of the liquid he shot up my nose and a feeling in the nostril, the one that had served as the gateway, that my nose was leaking. It wasn't. It was bone dry.
By the way, when he first entered the room and introduced himself, I couldn't hear him. He spoke too softly.
Tuesday, 10 January 2012
Perchance to Dream
I woke up this morning with the realization that I do have it....PARKINSON'S! It hasn't been a dream! It has been a year since the first symptom appeared - a tremor in my right hand. The tremor has become more apparent at times but really, I have not progressed very far along the PD scale (touch wood) and am still quite optimistic that I will be one of the lucky ones where the condition doesn't progress rapidly. I get the occasional twitch on my left side but, what the heck, I am better off than my friends with MS and ALS (Always look on the bright side of life, da dum da dum da dum da dum).
I didn't feel like working yesterday so I, my wife, my daughter and my granddaughter went up to the cottage to review some work we had had done. Outside it was +3C but inside the cottage, it was well below freezing. We stayed about 10 minutes and went to Gimli for lunch. I was amazed that we had to stop and get windshield washer because the windows kept getting dirty from water thrown up by oncoming vehicles. This in early January when the normal temperature is about -13C. We will pay for the warm weather starting tomorrow when the forecast high is -15C. Anyway, the trip was good for me, very relaxing and stress free. Absolutely no tremor at all. And, to add to the enjoyment, my granddaughter (6 months) finally let me carry her after 3 months of her crying whenever I looked at her.
That's enough for now. I have to catch up on the work I didn't do yesterday!
I didn't feel like working yesterday so I, my wife, my daughter and my granddaughter went up to the cottage to review some work we had had done. Outside it was +3C but inside the cottage, it was well below freezing. We stayed about 10 minutes and went to Gimli for lunch. I was amazed that we had to stop and get windshield washer because the windows kept getting dirty from water thrown up by oncoming vehicles. This in early January when the normal temperature is about -13C. We will pay for the warm weather starting tomorrow when the forecast high is -15C. Anyway, the trip was good for me, very relaxing and stress free. Absolutely no tremor at all. And, to add to the enjoyment, my granddaughter (6 months) finally let me carry her after 3 months of her crying whenever I looked at her.
That's enough for now. I have to catch up on the work I didn't do yesterday!
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