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!
Saturday 7 January 2012
In Vino Veritas Part II
On October 30th, I described a reaction I had after drinking some wine - (a) insomnia and (b) unable to pee. I wondered if it was a coincidence. It wasn't. Last night we went out for dinner, I had a kir royale and 2 or 3 glasses of wine. When I went to bed, I could not sleep at all and I didn't urinate from 5pm until 1am when I forced it out. This was not like me. I used to be able to magically turn a glass of prosecco into urine in a flash of an eye!
On to google.
It appears that there is an interaction between alcohol and amantadine (one of my PD drugs). Combining the amantadine with alcohol can increase the effects of amantadine, two of which are (a) insomnia and (b) infrequent urination.
For some reason, that makes me feel better. PWP would laugh if they knew I was afraid those effects were symptoms of PD. A future without a couple of glasses a wine every couple of months! Unthinkable!
Fan the sinking flame of hilarity with the wing of friendship; and pass the rosy wine. (Heraclitus)
On to google.
It appears that there is an interaction between alcohol and amantadine (one of my PD drugs). Combining the amantadine with alcohol can increase the effects of amantadine, two of which are (a) insomnia and (b) infrequent urination.
For some reason, that makes me feel better. PWP would laugh if they knew I was afraid those effects were symptoms of PD. A future without a couple of glasses a wine every couple of months! Unthinkable!
Fan the sinking flame of hilarity with the wing of friendship; and pass the rosy wine. (Heraclitus)
Tuesday 3 January 2012
Mugged by reality
I decided on an experiment on this morning's walk - I would do it without the aid of drugs. I started out at 4:45AM and for the first 15 minutes, my hand was jumping around like the frogs of Calaveras County but, if I actually made my arm swing - the tremor settled down. After a few more minutes of walking, the tremor disappeared completely, arm swing or no arm swing. Exercise does work!
I was tremorless when a car pulled up adjacent to me across the road. Now, even though I live in the good part of town, it was dark, and our city has several youth gangs with quaint names such as Mad Cowz and Indian Posse, gangs known for their violent behaviour. Was the person exiting his car a gangbanger looking for a victim? He stepped out of the driver's side, looked at me, quite intently, then reached back into his car to retrieve something. A weapon maybe? I wasn't sure if I should turn down a side street and run or not. My hand started bouncing around and kept on dancing even as the stranger put a letter in the mailbox beside his car.
Now, when I think about it, he was probably more nervous about me, given the way I was dressed. Here is a photo of me on that morning.
As you can see, it was a rather chilly morning and I was dressed for the weather. There are not very many people out walking at that time of the day, not even dog walkers, so I can imagine he might have been a touch nervous.
The tiny amount of stress I had encountered caused PD to take control of my hand and it was at least a mile before it settled back to normal.
Lesson for today: It is better to live in fear of being mugged than be mugged, even if it is only in your imagination!
I was tremorless when a car pulled up adjacent to me across the road. Now, even though I live in the good part of town, it was dark, and our city has several youth gangs with quaint names such as Mad Cowz and Indian Posse, gangs known for their violent behaviour. Was the person exiting his car a gangbanger looking for a victim? He stepped out of the driver's side, looked at me, quite intently, then reached back into his car to retrieve something. A weapon maybe? I wasn't sure if I should turn down a side street and run or not. My hand started bouncing around and kept on dancing even as the stranger put a letter in the mailbox beside his car.
Now, when I think about it, he was probably more nervous about me, given the way I was dressed. Here is a photo of me on that morning.
As you can see, it was a rather chilly morning and I was dressed for the weather. There are not very many people out walking at that time of the day, not even dog walkers, so I can imagine he might have been a touch nervous.
The tiny amount of stress I had encountered caused PD to take control of my hand and it was at least a mile before it settled back to normal.
Lesson for today: It is better to live in fear of being mugged than be mugged, even if it is only in your imagination!
Monday 2 January 2012
All right, all right............................
I admit it. I must be a hypochondriac. All the twitches, excessive saliva, wobbly legs, etc, must have been manifestations of my imagination. I am feeling very good this morning. Very good.... Oh, I still have PD, but if I had all the symptoms I have imagined, I would have been bedridden by now. I have slowed down somewhat and have some problems getting up from a sitting position in a soft sofa. I do have a serious tremor in my right hand(controlled by drugs), afternoon exhaustion (maybe caused by drugs), a significantly softer voice and - tada! - vicious constipation (I no longer have to worry about having the aztec two-step when the plane takes off).
I will try not to find other symptoms before they actually affect me. There is no sense in rushing things. It is my plan that (a) my PD will be slow in advancing or (b) new drugs will slow the progression of the disease or (c) they will find a cure, which seems to be a definite possibility, some would say a "definite probablility". Maybe we will have good news in 2012.
Now, to lift the spirit of PD sufferers with constipation, here is a quote from the former Secretary of State, Henry Kissinger, not known for his humor - until now. “There are only two reasons to sit in the back row of an airplane; either you have diarrhea, or you're anxious to meet people who do”.
Happy New Year.
I will try not to find other symptoms before they actually affect me. There is no sense in rushing things. It is my plan that (a) my PD will be slow in advancing or (b) new drugs will slow the progression of the disease or (c) they will find a cure, which seems to be a definite possibility, some would say a "definite probablility". Maybe we will have good news in 2012.
Now, to lift the spirit of PD sufferers with constipation, here is a quote from the former Secretary of State, Henry Kissinger, not known for his humor - until now. “There are only two reasons to sit in the back row of an airplane; either you have diarrhea, or you're anxious to meet people who do”.
Happy New Year.
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