I've got that Parkie feeling

But it was just one beer!

2012-02-25T07:05:00.001-08:00

We decided to eat at a little bodega-type place around the corner, outside of course. It was hot, so I decided a beer would be appropriate. But, my memory is not what it used to be, if it ever was. Alcohol and amantadine do not enjoy each other's company (see In Vino Veritas in January). I should have remembered but the beer tasted so cool and good against a background of bikini clad young ladies heading for the beach with their buff boyfriends in tow; taxis and really expensive cars passing by under a canopy of palm trees that line the street (there are no rusty or dirty cars down here). It was a scene out of a postcard and a bottle of beer fit in perfectly. I swallowed it down and spent the rest of the night regretting it. The combination of the beer and the medication brought on insomnia. I WAS AWAKE ALL NIGHT!!!!

The energy of the beer/amantadine cocktail lasted well into the morning and I was able to do a 3 mile run at 7:30AM. The fastest run yet. Who needs steroids!

I crashed about noon. No more alcohol for this PWD.

They wept to see such quantities of sand. If only this were cleared away.......

2012-02-22T06:56:00.000-08:00

OK. Here we are in South Beach, Florida, about a mile from the sun. On the day of our arrival it was a record breaking 88F (31C). Unfortunately, a cold front came through that night and by 1PM the next day, the temperature had only reached 75F (24C). The rest of this week promises temperature in the low 80's.

I decided to experiment.

THEORY - PD is affected by temperature.

APPARATUS - one long, sandy beach, tropical temperatures, bathing suit and the usual running gear.

METHOD - Cut down the drugs. Take no drugs on my morning run on the beach when the temperature was at least 70F.

OBSERVATION - The result was no tremor whatsoever, a good quick gait, right arm swing normal. No sign of PD. Contrast that with my cold weather drug free morning walks. The tremor starts immediately and lasts a good half mile to a mile and then stops but I have to keep my mind on the stoppage or it will let loose.

Conclusion - Miami heat has a positive effect on my PD. Maybe we should spend winters here and not just 3 weeks.

PREDICTION - Would miss the children and grandchildren too much. We are doomed to winter.

By the way, as usual, I managed quite a sunburn the first day. Maybe that is one of the variables that positively affects the tremor. That may be true, but it is more likely that it will also cause skin cancer, just ask my dermatologist. However, I lack common sense and a serious sunburn has never stopped me in the past on the theory that if you fish for 5 hours and only catch a sunburn, you are still better off than the worm.

Furthermore, it may be a long hot run in the sun will cool one's PD!

The Big Chill

2012-02-15T08:45:00.000-08:00

Once I went to a football game with two teenage boys. It was November and it was cold! I, being aware of my mortality by then, wore several lawyers of clothing with a touque and scarf and warm boots. They, being unaware they were mortal, wore short winter jackets, touques and running shoes. I told them they were going to freeze. "Yah", they said, "but we will look cool."

At half time, they disappeared. I found them in the men's washroom, under a heater that was hanging on a wall, wrapping toilet paper around their feet, inside their runners, to keep their feet warm. I started to laugh and said, "Right, you guys look real cool now!"

Years later, one of them told me they had never been so cold. On the other hand, I had been as warm as possible, while sitting for an hour, on a metal seat, and a temperature of about -12C (5F). Even as a teenager, I would never have dressed so poorly that I would have had to have used toilet paper for insulation. I just never let myself get too cold. That is, until now.

The hand and foot on the affected side of my body (right side) get extremely cold at around 3 in the afternoon. The cold lasts about 2 hours. Toilet paper is no help, nor are hand warmers or mitts. Nothing helps. My right hand in particular gets so cold that it becomes very painful in the wrist. Oddly, my hand doesn't feel cold to my wife and it doesn't matter what the air temperature is or that I am trying to warm it up in some manner. I looked up "cold hand" in the PD forums and found other people who suffer the same symptom. It is just another of PD's little jokes, but I am finding it more and more difficult to appreciate the humor.

Good News - Bad News.

2012-02-09T08:29:00.000-08:00

Parkin is a gene that has a role in protecting dopamine producing cells. When it mutates, it can no longer protect those cells and dopamine levels drop off producing a form of PD. This is a genetic form of PD and accounts for less than 10% of the cases. It is associated with early onset of PD.

Scientists have made a breakthrough that may help all victims of the disease.

Their findings reveal some potential new drug targets for Parkinson's and a new platform to screen treatments that might mimic the protective functions of parkin, the gene they investigated. This could lead to the dopamine producing cells being protected and thus slow down the progression of the "disease".

I am getting used to "hallucinations" or "very realistic dreams". I can't decide which is at fault. The latest came while I was watching TV. A man appeared beside me, dressed all in blue, walked across the room and melded with the TV, appearing for a moment on the screen before the program I was watching returned. Did I doze off? It is certainly possible and I might have been in some twilight zone, not quite conscious but enough so to make me doubt I was sleeping. I am just not sure.

Reality is an hallucination for me these days.

Medicine is magical and magical is art

2012-02-05T05:42:00.000-08:00

Temperature today is forecast for a high of +7C (45F). This in itself is a miracle. In fact, Paris today will be colder than Winnipeg. Our normal high temperature for today is -10C (14F). Normal low -20C (4 below F). Global warming here, ice age in Europe. The warmth actually makes my morning walk more difficult as the snow semi-melts, leaving a type of slippery sludge in places.

I went to the movement disorder clinic on Friday and saw the doctor for about 5 minutes. He spoke to me about the dangers of obsessive behaviour when taking Mirapex (third time a doctor has brought it up). I told him I had not experienced any that I knew of. For awhile, I ate more than usual, but that has stopped. In fact, I have lost a few pounds. From what I have read, the thinking of some physicians is that people who get these compulsive side effects are people who had a predilection for them in the first place. On the other hand, I have predilection for doing as little as possible - a quest at which I am remarkably successful! Obsessive behaviour would just be too much work.

I have been using the bosu ball and, with a hint from my brother about tightening my abs, I am now able to balance easily on two legs and momentarily on one leg. I stretch each morning and can actually move my neck a little more than 180 degrees, side-to-side, a feat that I could not have achieved a couple of weeks ago, due to stiffness. In fact, these exercises, combined with my running, walking
and weight training have put me in better shape than I have been in several years. All the marvellous mobility systems in my body being controlled by a failing brain.

I was at the dermatoligist earlier in the week. He had taken a section out of a growth on my chest to see if it was cancerous. It wasn't. He likes to chat and we got on to PD. He said that if we were having this talk 10 years ago, he would have felt sorry for me (or words to that effect). Today, however, advances in medication......... and he went on, giving me an optimistic view that through the miracle of medicine, a cure is not far away and medication will only improve while we wait for that cure.

Every day holds the possibility of that miracle. If I were religious, I would pray for the miracle but I kind of feel that would be like asking God to not make two times two equal to four. I will just have to wait and count on the magic of medicine.

Something is happening here, but you don’t know what it is, do you, Mister Jones?

2012-02-01T08:12:00.000-08:00

I have been getting along very well. The drugs work wonders. Most of the time I feel perfectly normal. My voice is low and raspy, like Bob Dylan's, only worse. But that is really the only outward indication of my malady; although, my wife claims she can see it in may face sometimes. Maybe.

However, last night I was awakened by a cramp in my right leg. Now if you have never experienced a PD cramp, it is impossible to give you an understanding of how painful it is, but believe me, it HURTS. It went away but an hour or so later, I was awakened by a very strange feeling. My entire body was shivering, like I was experiencing hypothermia. The room was warm. The temperature outside was about -3C (27F), unseasonably warm. I had on good pyjamas ("pajamas" for my friends down south) and, I was under a comforter. I couldn't be cold, that seemed very unlikely. Still, I thought I must be chilled so I brought a heating pad into bed. That didn't bring immediate relief, but the feeling eventually went away and I fell back asleep. I have no idea if the feeling disappeared as a result of the heating pad, but I am leaning away from that explanation. The fact is, I just don't know. Is this another of PD's little joys?

The unknowns of PD keep revealing themselves to me. I would find them fascinating if I weren't the victim.

Get these mutts away from me

2012-01-28T07:13:00.000-08:00

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.

Balls to Mr. Banglestein

2012-01-24T08:51:00.000-08:00

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.

“As any action or posture long continued will distort and disfigure the limbs...."

2012-01-20T12:50:00.000-08:00

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.

Still crazy after all these years

2012-01-19T12:44:00.000-08:00

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 so cold my campfire froze

2012-01-17T07:32:00.000-08:00

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.

Sit back and I will have a look

2012-01-11T17:28:00.000-08:00

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.

Perchance to Dream

2012-01-10T07:32:00.000-08:00

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!

In Vino Veritas Part II

2012-01-07T13:58:00.000-08:00

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)

Mugged by reality

2012-01-03T08:38:00.000-08:00

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!

All right, all right............................

2012-01-02T04:18:00.000-08:00

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.

May the gods divert the omens.

2011-12-30T06:14:00.000-08:00

I am hyper-aware of tiny differences in my body - little ticks, perceived numbness and weakness, lurid dreams, etc. I treat each one as an omen of things to come. I am fully cognizant that PD is degenerative and will continue to attack me; I just don't want it to happen too quickly; hence, I am extremely sensitive of any sign that the PD is progressing at an alarming rate.

Christmas eve and the day after Christmas, I felt changes in my left hand and leg. OMENS! I thought these were indications that I was advancing into stage 2, where both sides of the body are affected; however, I have not had a repeat of either symptom since. Touch wood they stay away until sometime in the distant future. It will happen but I can't let myself dwell on the inevitability.

For my own well-being, I have got to learn to ignore the omens and just take the changes as they come. In the meantime, other than going to bed at an ungodly early hour, my life continues along a "normal path" along with omens lurking in the shadows.

But, as Oscar Wilde once said (good crossword clue) “There is no such thing as an omen. Destiny does not send us heralds. She is too wise or too cruel for that.”

I will have to have that engraved on my forehead so I don't forget.

Happy new year.

Life is just a bowl of pits

2011-12-27T08:33:00.000-08:00

Well, I think it is official. My left side is being attacked. Last evening, I was lying down with my knees up and my feet on the bed when my left leg started to vibrate. It only lasted a few seconds because I extended my leg and tensed the muscles. It didn't happen again and nothing hindered my 2 mile walk this morning, so maybe it was an aberration or, maybe it was the beginning of stage 2 PD. I vote for the former. Other than that, I feel good, but as frustrated as an arsonist in a petrified forest.

December 24th - a day that will live in infamy.

2011-12-25T05:30:00.000-08:00

I was lying down and relaxing on Christmas eve when the middle finger on my left hand began to jump on its own accord. Later, my pointer finger on that hand also did a short jig. These involuntary actions are probably an indication I am moving into stage 2 and will soon have two bouncing hands to corral and keep calm. I actually thought it would take longer to reach stage 2. My luck seems to be running out but fortunately, today is Christmas, which is not an event, but a feeling, a state of mind that binds the years together. On this day I will remain optimistic and I shall not dwell on a possible promotion to stage 2. If it comes, it comes. What are you going to do!

Don't you hate it when your hand falls asleep and you know it will be up all night?
(Steven Wright)

Merry Christmas.

Obsession is a negative passion.

2011-12-24T07:19:00.000-08:00

As I have mentioned before, dopamine agonists, such as the mirapex I take, can cause obsessive compulsive disorder. Some obsessions are relatively harmless, while others are dangerously destructive.

Some of the different types of obsessions are:

Gambling
Shopping
Hypersexuality
Extramarital affairs
Suspicions of partner’s infidelity
Cross dressing
Pornography
Fetishism
sexual arousal to objects
Obsessive masturbation
Cyber sexual activities
Exhibitionism
Visual and/or aural hallucinations
Obsessive risk-taking
Punding - ie obsession with mechanical behaviour
Delusions (grandeur, paranoia)
Violent behaviour
Eating
Mental agility games (crosswords, backgammon, numerics)
Cyber shopping & auctions

One in four PD patients prescribed dopamine agonists suffer from obsessive compulsive disorder to some degree. This increases to 1 in 3 for young onset patients, and to 1 in 2 for those on or near the maximum doses of the medication. (The Mayo Clinic, Rochester, Massachusetts, February, 2011)

There are other behaviours that have not been listed. As for me, I am addicted to mental agility games, but then I was before. My eating compulsion has ended and while I like online shopping and auctions, my spending has not increased since taking the DA's. I guess I am one of the lucky ones.

Listen to many, speak to a few.

2011-12-20T07:57:00.000-08:00

Well, it's official. I am losing my voice.

Yesterday, I went to a speech therapist who specializes in problems associated with PD. She put a device in front of me that measures decibels. She then had me do several tests. For example, I had to describe to her one of the times in my life when I was really happy. This is not as easy as it sounds because I haven't had too many sad times. Mostly, I have always been happy. Anyway, I rambled on about the births of my children - the great improv artist. God, I even bored myself!

Testing lasted about 30 minutes and then came the conclusion, "Your voice is below the normal speaking range. It is quite low. Do others have problems hearing you?"

"My wife does," I said, "But then, she is losing her hearing. (nervous chuckle with a respondent smile). I would say yes, people are having a hard time hearing me."

"We have a program here at the movement disorder clinic that will help you with that problem. And she rose and gave me a folder outlining the program. The Lea Silverman Voice Treatment, an intensive program of voice exercises that targets vocal intensity, quality and variation -- precisely the areas of difficulty for persons with PD. That will begin in April, twice a week for 8 weeks. I decided to go for it for the sake of anyone listening to me, if or when I might have something to say.

If the LSVT doesn't work, I can live with a voice that has a touch of the Barney Fife quality to it.

Every head has its own headache

2011-12-19T09:31:00.000-08:00

I have been told I am stage one of PD, but I keep getting symptoms that most PWP would assign to later stages. Fortunately, they come and then they disappear. For example, when I had trouble swallowing which occurred over a year or two ago, it lasted about 3 weeks, and has never returned. It makes me wonder if I am at a later stage as trouble swallowing is not usually associated with early stage one.

Although I was only diagnosed earlier this year, I had had some strange problems off and on over the previous two decades. One in particular was a 6 month headpain. I am not talking about a headache. This was terrible pain in my head just behind my eyes. I used to fall asleep with my head on a bag of frozen peas in order to get relief. My GP sent me to a neurologist who gave me an EEG and told me, "there is an abnormality in the results but don't worry, about 10% of the people who take this test will present with the same abnormality and be in good health." Of course, he thought he was setting my mind at ease, but all I could think of was "90% have a problem." More tests were performed - but revealed nothing wrong. I tried all forms of treatment, including having a practitioner of Chinese medicine stick needles in my head and taking massive doses of vitamin B. Both were quite an experience, but did nada to help me. Nothing worked. The headpain finally went away on its own. It stayed away for about two years, when it returned to torment me for about 3 weeks. That was in the early 90's and it has not made a comeback since (writer touches wood).

Now I wonder if that headpain was due to PD? How long has this condition been attacking my brain! It is not far out to think I have maybe had PD for 20 years or so.

Meanwhile, if I get a headache, I will just follow the instructions on the aspirin bottle - "take 2 aspirin" and "keep away from children."

Do the Hokey Pokey

2011-12-15T06:31:00.000-08:00

I discovered a new symptom on my walk today - my right arm had become lazy and didn't seem to want to swing to the extent my left arm did. The result of my right arm lacking the energy to move was, it tended to do a dead hang by the side of my body. Hanging by my side in turn caused my hand to jump around. I found that if I made my arm swing in a greater arc, the hand tremor all but disappeared.

This is the first I have noticed the dead arm. I realize that lack of arm swing is a popular symptom of PD, but my arms have always acted in the manner they are supposed to act. I am hoping this was an aberration, brought on by my heavy parka and the fact that I carry my ipod, to keep it from freezing, inside my right mitten, next to my hand.

All the while, I couldn't get this ditty out of my head..._"You put your right hand in. You put your left hand in and you turn it all about. Do the hokey pokey ....that's what it's all about" (something like that)

How appropriate, I think, to compare PD with the hokey pokey!

Now, if you'll excuse me, I'm going to go home and have a heart attack.

2011-12-12T08:40:00.000-08:00

Ever watched "Pulp Fiction"? Of course you have. I have watched it 4 times. Tarantino is not much of an actor but as a writer and director, he is right at the top. You would think that after watching the movie so many times, I would be immune to its action but, when I watched it yesterday, my right hand started up. The tremor was so bad, I had to grip the remote tightly and even then I tremored internally. It was worth it though, because the writing and acting are incredible (except for Tarantino's short cameo). So, I guess stressful football games and action movies should be avoided to avoid tremors. Right! Not much chance of that.

On the upside, I experienced no tremors during a one hour workout this morning. Maybe because I added Mucuna pruriens to the drug cocktail, just to see what would happen. Not much so far. I think I will stick to the prescription drugs alone. I will check with the doctor next time. But as Jules said in PF, "If my answers frighten you then you should cease asking scary questions".

I think that is the key to living with PD. Don't ask scary questions. What will be will be and there is nothing you can do about it.

"On the other hand, you have different fingers" (Stephen Wright)

2011-12-09T12:26:00.000-08:00

It was -23C when I went for my walk this morning (4:30AM). On the one hand, the cold, crisp air was invigorating; on the other hand ..... Wait, I couldn't put anything on the other hand. It had a mind of its own and was jumping around like a bat out of hell. This has happened on a previous cold day too. Coincidence? Not likely. Apparently, temperature extremes can affect PD.

Here, on the Canadian prairies, I can test that theory with the cold; but, I anxiously await our annual trip to Miami Beach so I can test it with the heat. In the meantime, from the Bard of the Yukon.....

Some planks I tore from the cabin floor
And lit the boiler fire.
Some coal I found that was lying around
And heaped the fuel higher.
The furnace roared and the flames they soared,
Such a blaze you seldom see.
Then I burrowed a hole in the glowing coal
And I stuffed in Sam McGee.
...
And there sat Sam, looking cold and calm
In the heart of the furnace roar.
He wore a smile you could see a mile,
And he said "Please shut that door!
It's warm in here, but I greatly fear
You'll let in the cold and storm.
Since I left Plumtree, down in Tenessee,
It's the first time I've been warm.

from "The Cremation of Sam McGee" by Robert Service

I respectfully decline the invitation to join your hallucination

2011-12-06T11:32:00.000-08:00

Mirapex can cause hallucinations. I have had none until, I think, yesterday. I was lying on a sofa, talking to my mother, when I saw a man seated beside me, arise from his seat and walk in front of me. I gave my head a shake, and he was gone. Trouble is, I am not sure if it was an hallucination or a dream because I might have dozed off for a few seconds. I was extremely tired and my mother, bless her heart, is not the most fascinating person to talk to, just like me. Hopefully, it was a dream and the sleepiness was not caused by the mirapex. I will have to watch out for that.

It may be getting impossible to tell the difference between revelations and hallucinations.

I will keep you posted.

The Tremor Conspiracy

2011-12-02T15:58:00.000-08:00

My resting tremor has conspired with a new, as yet unnamed, tremor. These conspiratorial forces appear to have focused their energies on a limited, well-defined objective. Get the PD victim!

I can accept that my resting tremor is making a comeback. When my right arm hangs by my side, or my forearm is on my lap, my tremor awakens. For the time being, I can usually control it and make it stop but it is becoming more vicious in its desire to dominate me. What I can't accept (yet) is that I also seem to have a movement tremor. At dinner today, I raised a glass of water to take a drink and my hand shook so much, I just about missed my mouth. Perhaps it was just that one time. I will be optimistic and cling to that theory. In the meantime......... I will endure; oh, and up my medicine dosage.

As for my eye, I don't have the flashes of light anymore but the floater remains, like a spider's web in front of my eye. I forget sometimes and try to brush it away with my hand. I am told the floaters should disappear after awhile.

Onward and Upword.

"Ever since surgery began, man's destiny has been to suffer, in order that he might be cured"

2011-12-01T12:15:00.000-08:00

Got my eye lasered. The worst part about it was the wait to get into the laser room. I was scheduled for 10:30 but didn't get the laser treatment until after 1:00pm. I was due for my PD medicine at 10:00 but forgot to take it. I saw myself trying to control tremors and getting my nose lasered as I trembled while the doctor was doing his thing. Fortunately, my wife volunteered to go home and get the meds, so all was well.

The "surgery" lasted maybe five minutes and consisted of the doctor prodding my eye with a stainless steel tool of some sort, shining a bright, magnified light into my eye and occasionally sparking it with a green laser. He tells me it was a success. I will have to take his word for it because, right now, looking through that eye is like looking through cheese cloth. I am still seeing floaters, but they don't bother me.

Meanwhile, here is another use for the laser....."I am Armenian, so of course I am obsessed with laser hair removal! Arms, bikini, legs, underarms... my entire body is hairless." (Kim Kardashian)

I think she has had one too many treatments!

Gimme a break...

2011-11-30T06:35:00.000-08:00

Now God, I know I haven't been a good boy at times in the past but I seem to be getting hit with a few good shots of punishment these days. First PD and now - a possible hole in the retina of my right eye. Scheduled for laser surgery tomorrow. To top it all off, my beloved Blue Bombers were defeated by the B.C. Lions in the Grey Cup game. The shame!

I guess it could be worse; I could live in Toronto!

I busted a mirror and got seven years bad luck, but my lawyer thinks he can get me five. (Steven Wright)

2011-11-29T08:50:00.000-08:00

This past Friday I began seeing flashes in my right eye. Since it was the right side of my body, I figured PD must somehow be causing them. On Saturday, my eye was lighting up like the 4th of July! I called an optometrist and made an appointment for Monday. On Sunday not only was I getting flashes, I was also experiencing seeing things, like threads or spider webs, in front of my eye. This didn't sound like PD. I went to my appointment and after a thorough examination learned that the vitreous in my eye was pulling away from my retina. This is a natural aging event and nothing to worry about. In my case however, part of the vitreous remained attached to the retina and the fear is when it finally lets go, it could tear a hole in the retina.

"It is nothing to do with PD or the drugs you are taking," the doctor said. "Nor am I too concerned," he assured me.

He stood there looking at me and added, "I will be back in a minute" and he left the room.

When he returned, he held out a card, "I made an appointment for you with an ophthalmologist. It is tomorrow."

Somehow I think maybe he is a little concerned. We will see what happens today.

It would seem my string of good luck is coming to an end; but, as the Russians say, “He that is afraid of bad luck will never know good”.

I ain't afraid of that bad luck!!! I will just have to wait for my good luck to return.

We struggle and we stagger down the snakes and up the ladder

2011-11-28T05:21:00.000-08:00

I am a newcomer to PD and what I am going through is a cakewalk compared to the PWP who have had it for some time. What follows is an account written this past Remembrance Day by a contributor to Parkinsonforum.org. Her online name is X. and this is what she goes through in the first couple of hours after waking up.

November 11 2011

04 15 - wake up with backache because I have been unable to turn in my sleep. I also have numb heels from the pressure of the bed clothes and staying in one position.

04 25 - Reach to left to turn on light and knock pills on floor.
Fumble around bed to find my home-made rope-ladder to pull myself up into sitting position, but my arms aren't strong enough the first time, so I collapse back into bed.

04 30 - Second try, I try using my back muscles, but the pain is even worse than in my arms, so I give it 10 minutes.

04 40 - Try again to pull myself up and with the help of my bed handle I get into upright position, reach the door handle and the grab the handrail to get to the loo. Make it just in time.
.
04 45 - Have trouble sorting myself out and head off back to bedroom, but get stopped by dystonia in right foot - toes curl downwards, so i can't walk but get on my knees to crawl back to bed, but getting off floor is a struggle. Find pills, but can't reach taps for water til dystonia stops.

Cannot lie down because of PD-induced acid reflux problem. Sit on bed and wait until dystonia goes.

05 00 - Get water, take pills. Wait.

05 50 - Pills start to work.

This is how I start my day.

This is the ugly side of PD that I share only with you, my fellow sufferers, because you understand.

Maybe the world needs to see just how horrific this disease is.
By staying silent, we do ourselves no favours.

I don't relish the day I find myself in X's position. It must be very difficult and yet, she maintains a healthy lifestyle and a positive outlook 10 years after diagnosis. Her story helps me stay strong.

You know the speed of light; but, what is the speed of dark ?

2011-11-25T10:36:00.000-08:00

Update on my condition

Tremor - noticeable, but controllable, when my hand hangs by my side. Stress, no matter how insignificant, really aggravates it.

Excess saliva - hasn't happened since the elevator incident

Voice - at times normal, but when I get tired, I speak quietly with a certain smooth, monotone harshness.

Muscle cramps - no terrible ones such as those I had prior to medication. Some cramping but quite manageable.

dystonia - none since the terrible leg cramps twisted my foot and toes prior to medication.

Swallowing difficulty - none since the episode last year.

Tiredness - at times excessive, especially mid afternoon. Bed time is about 8:30PM

Sleep disturbance - definitely. Last night, for example, I slept 6 hours in 3 two hour shifts. Usually awake at 4:30 and outside for a walk by 5AM. Not sure how long the shift breaks last - you do the math.

Balance - seems OK. I can stand on one leg (left one) for about a minute or more. Not so much with the right leg - maybe 20 - 30 seconds. Doesn't affect me in my daily routine.

Gait - perfectly normal. No more "wobbly legs"

Myoclonic spasms - at least 4 prior to getting to sleep. Annoying but not really a problem.

Stiffness - oh yeah! Slows me down a bit.

Parkinsonian mask - nope. It hasn't come back

Handwriting - hate doing it. It can be very frustrating, and, believe or not, very tiring. It always starts off nicely but rapidly deteriorates.

constipation - For sure! But that's OK for me.

PD Stage - I think I am still at stage one but who really knows because the medication works so well that symptoms on my left side would not be noticeable.

Medication side effects - no compulsive behaviour. Exhaustion the only real side effect, but I am in a position where I can deal with that.

All in all, things are not bad. I wish I didn't have PD, but I do, so I will just have to make the best of a raw deal.

Falling down became second nature and it really didn't bother me. (Nancy Kerrigan)

2011-11-21T08:09:00.000-08:00

The bad thing about the internet is one can become an "expert" on any disease. There are thousands of sites on the internet about parkinson's and I have probably read most of them. The problem is, if you at all trend toward hypochondria, you start to experience some or all of the symptoms you have read about, or at least you think you do.

Falling is relatively common among PWP. I had a bad fall this summer, actually going head over heels down the sidewalk. There was blood! However, later, after discovering a bump in the sidewalk, I knew that the cause was clumsiness and not PD. But, for a while there, I wondered.

PD affects the victim's balance and every so often I stumble. When I get out of bed, I have to stop for a second just to make a dizzy feeling go away. Of course, this doesn't happen every time I "de-bed"; just sometimes. But, it makes me wonder. Am I going to start falling any time soon? I doubt it. I just ran 3 miles without any problem; however, you never know......

Confucious said that our greatest glory is not in never falling but in getting up every time we fall.

I don't think Confucious had PD!!

To tell or not to tell? That is the question.

2011-11-20T14:02:00.000-08:00

There are different opinions among PWP as to whether or not one should make his/her diagnosis public. I, for example, told everyone except my 93 year old mother who has enough problems and worries. Other PWP feel that people will treat you differently if they know you have PD - perhaps even thinking you are less capable mentally. A large number of PWP propose that not only should we tell everyone, we should put our symptoms on display so that the public will understand what we are going through. This faction thinks that if the public could see the symptoms, fund raising for PD research would increase.

I don't know which approach is best. I just know what I did and there was no philosophy or psychology behind my decision. I don't have any problems being "out".

Having said all that, I have no intention of putting my tremor on display. I couldn't stand the whispering.

You can donate to parkinson's research and education in Canada, go to http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5184129/k.2CBF/Donate_Now.htm

Interesting, Uplifting, Article

2011-11-17T06:13:00.000-08:00

Diagnosed with the young onset form of the disease, Dr. Soania Mathur overcame the desire to hide her condition and has emerged as a driven advocate for improving the treatment and quality of life for Parkinson’s patients

http://dl.dropbox.com/u/20471681/MPArticle.pdf

“There are so many facets with Parkinson’s. It’s a complicated disease
in that it doesn’t seem like it’s one factor. It’s multifactorial. Genetics play a
role. Environment play a role. So until a specific cause is found, it’s going to be
very difficult to find a cure. But they’re working very hard to find that cause.”

“Ultimately, there will be a cure,” she adds. “Of that, I’m sure.”

Some observations are dubious

2011-11-16T07:45:00.000-08:00

There is a theory that if you blindfolded a person and told him to walk from point A to a distant point B, the most likely route he would take would be a sine curve
(y = sin x). I have seen it used to explain the meandering of a river and train derailments. I even tried it with my dog one winter. He followed behind me and I walked in a straight line to our destination. When I looked back at our tracks in the snow, mine were in a straight line but his meandered across mine in what was an unruly form of sine curve. Interesting.

At times today on my early morning walk, it felt like I was walking a sine curve too, albeit with a small amplitude. I was kind of wobbly again, as if I had had one too many drinks. It was not for the entire walk, just the last half mile. Now as I write this, I am thinking, here you go again. You are becoming a PD hypochondriac. You were just a little tired from the 2 previous miles. But you never know! It is this uncertainty that eats at me; however, there is no antidote to uncertainty so I will just have to learn to live with it.

Damn!

Say hello to my little friend

2011-11-13T12:10:00.000-08:00

The things that make PD bearable are pills. They are dopamine agonists and the super star, Levodopa. At the moment, my pill of choice is mirapex, a dopamine agonist.

Parkinson's is caused by the deterioration of neurons in the brain that produce dopamine. Dopamine serves as a chemical messenger allowing communication between parts of the brain that control movement. This communication coordinates smooth and balanced movement in the muscles. A lack of dopamine causes a loss in the ability to control body movements.

What to do? What to do?

We take drugs that do one of two things (a) drugs that stimulates the receptors in nerves in the brain that normally would be stimulated by dopamine, called dopamine agonists or (b) take a drug that is converted into dopamine when it enters the body, called levodopa or just l-dopa.

One of the drawbacks of continued use of levodopa is it becomes less effective over time and overuse of it may cause, among other things, uncontrolled body movements (dyskinesias). So often, patients are put on dopamine agonists as a beginning treatment.

The dopamine agonist, mirapex, in combination with amantadine, is working well for me. However, as I have stated before, there can be serious side effects to the drug. One side effect is sudden onset of sleep. It can happen anywhere, including when the patient is driving. Other side effects are compulsive behaviours, such as gambling, and there are horror stories of victims losing their entire savings. In one lawsuit in the USA, the plaintiff began taking Mirapex in 1997, and suffered from a 4-year gambling addiction during which he gambled away $260,000. He claimed that Mirapex caused his gambling problem, and that the drug's makers, Pfizer and Boehringer Ingelheim, knew about its potential to cause compulsive behavior and had never issued a warning. He was awarded a huge settlement.

Fortunately, warnings of compulsive behaviour are now standard practice. I would hate to lose mirapex because of some other person's problem.

And, if you are thinking of suing, you might want to take heed of Ambrose Bierce's definition of a lawsuit: A machine which you go into as a pig and come out of as a sausage.

All progress is precarious

2011-11-12T07:18:00.000-08:00

Here is an update of my status in my (hopefully) long journey.

I still feel like only my right side is affected, but I don't know for sure. As it was explained to me, as long as the drugs are working, you'll never know how far the disease has progressed - at least in the early stages.

Tremor - confined to my right hand but only occasionally and not nearly with the ferocity as before the drugs. No longer a problem; touch wood.

Leg spasms - have all but disappeared. I get the occasional spasm in my right leg but nothing like the "beast". My feet and toes are not affected and I can usually wait out the spasm which lasts but a few minutes.

Myoclonic type spasms - these are becoming more numerous. They occur in a series of 3 or 4 "jerks" as I am falling asleep. Legs, arms and head are the most frequent victims; although they have occurred in my torso as well.

Balance - no problems

Walking - thought I might have a problem with wobbly legs but I now think that was just hypochondria.

Stiffness - definitely getting stiffer. With activity I loosen up but when I first start out the day, I am extremely stiff throughout my body.

Mentally - doing fine. Occasionally, I see an unwelcome future but, for some unknown reason, I don't dwell on it. Certainly, no depression.

Sleeping - no more than 3 hours straight. A definite sleep disturbance.

Drug dosage per day - 4 amantadine per day (max dosage) and 2mg of mirapex (2 pills 4 times daily). My only side effects are a rash and midday exhaustion.

As that sci-fi writer, Joan Vinge, said.....Wouldn't it be wonderful if no one ever had to worry about the random cruelty of illness or the woes of old age attacking them or their loved ones? (not a precise quote but words to that effect)

Amen to that!

Music hath charms to soothe the savage beast

2011-11-10T06:10:00.000-08:00

Had a severe leg cramp in the night. It woke me up, but after awhile it settled down and as I tried to get back to sleep, I suffered three myoclonic-like spasms. There is no pain with the spasms, they are just annoying. Everyone has them but they are usually not serial spasms. The spasm jerks you out of your twilight zone and you waken but you are able to get back to sleep. Not so with serial spasms. After three of them, by 4:30AM, I was wide awake so I went for a walk.

These walks, which would normally bore me silly, are made more interesting because of the music on my ipod. I listen to Leonard Cohen, Roch Voisine, The Commitments, King Biscuit Boy and a young Canadian singer, Sebastian Pigott. The music helps me (a) set a pace and (b) keep from being bored out of my mind. The hour passes quickly.

The third neurologist, a specialist in movement disorders, confirmed to me that there is a school of thought, including him, that believes that vigorous exercise can slow the progression of PD. He approved of my exercise regime. You never know, maybe it will slow the progression. Of course, even when the foremost scientists all agree on something, they could still be wrong...... but why take the chance?

So now to itunes and some more music to keep me going.

A mystery, mixed with fear

2011-11-09T11:47:00.000-08:00

At the movement disorder clinic, yesterday, I saw a gentleman come into the waiting room and sit down. His right hand danced non stop the entire time and I wondered...(a) was he not on medication (b) was he on medication but it didn't work or (c) had he been taking medication, but it no longer worked? I hope it was (a) because he looked most uncomfortable and I knew I did not want to look like that in the future as I would if it were (b) or (c).

I can live with a defaced red face better than I can with my hand going crazy like his.

I must build a dam to hold back the tsunami of fear that haunts my imagination.

Doubt is not a pleasant condition, but certainty is absurd. (Voltaire)

2011-11-08T12:22:00.000-08:00

Well, it is a certainty. I just returned from the Movement Disorder Clinic and a third doctor confirmed what I already knew - I have parkinson's. There can be no doubt. I have most of the required markers:

1. slowness of movement - sometimes, especially when I stand up and begin to
move. Once I am moving, I am normal
2. tremor - check. My hand has a mind of its own when I am not medicated.
3. stiff muscles - check. Getting out of bed is a chore.
4. poor balance - not really, but once or twice I have wondered.

The most telling marker is the fact that the medication I take is widely used in PD and for me, it works. If it works, you probably have PD.

Other secondary symptoms I have (or have had). Constipation - which in my case is a blessing - no more runner's diarrhea. Excessive saliva - sometimes. Difficulty swallowing - about a year ago or so for a couple of weeks. Change in voice - I am sounding like Mel Torme - the velvet fog - but with strep throat. Cramped handwriting - keeps getting worse. Dry skin on the face and scalp - yep, got that too.

I have been lucky to date. I lived a charmed life and thought continued luck was a sure thing. The only sure thing about luck is it can change without notice.

Oh well!

Cold but with a touch of warmth

2011-11-08T05:29:00.000-08:00

Winter arrived yesterday. I awoke to an inch of snow. I went for my early morning walk anyway and found it (a) a little slippery and (b) a touch chilly. In fact, after an hour, I was downright cold. Fortunately, except for the odd twitch in my right hand, and the rash on my face, I had no other PD symptoms, such as wobbly legs, and made the couple of miles quite easily. When I got home, I passed a mirror and saw a face made red by the rash and the cold.

On the upside, I got a facebook message from a lovely lady who I taught in grades 7 and 8 about 35 years ago. She told me her father had suffered with PD for 25 years. Hearing that gives me hope that my PD will drag its feet and I will get a good 20 years before ........ She has also been involved in the PD cause for many years. We need more people like her. I hope to get together with her the next time I am in Toronto.

Defacing a face

2011-11-05T14:45:00.000-07:00

I have discovered another little "joy" of PD and PD medication, A RASH, and it is on my face. Parts of my face look like they did during my teens except that the rash is combined with my aging cheeks - ie - jowls that are taking on the appearance of the wax on a candle left burning. It is not a pretty picture. However, I'd rather have the rash than the shakes so I will avoid looking in mirrors.

I told my doctor I broke my leg in two places and he told me to quit going to those places. (Henny Youngman)

2011-11-04T12:27:00.000-07:00

At times, my right leg seems not to work as well as it used to. It feels kind of "dead". It doesn't interfere with running or walking, rather it just feels odd. Fortunately, this dead feeling is not present all the time, which leads me to think I am becoming a hypochondriac, obsessed with differences in my body that I would have ignored otherwise.

Here is a scary fact. According to statistics, there are nearly 100,000 people living with Parkinson’s in Canada. This number is expected to double by the year 2016.

So fellow baby boomers be aware, as you grow older, the risk of developing parkinson's increases greatly.

Old age ain't no place for sissies!

Only the good die young

2011-11-03T06:59:00.000-07:00

Went to the funeral of an old friend yesterday. She was 61 years young and, even though I hadn't seen her much in the last couple of decades, I will miss her presence on earth.

I knew there would be a lot of people there, so I planned ahead, taking my medication at the appropriate time and even bringing some with me. Well, as soon as I got in the door, my right hand started up. I pocketed it and made a fist. This worked for a few minutes, then out came the drugs. They were of no help whatsoever. The hand kept on trying to embarrass me. I lasted through the funeral and the hand slowed down as I sat quietly, squeezing it with my left hand. But, at the reception it started again so I pocketed it once more, controlling it by squeezing my car keys, and went to talk to her loved ones. The all pervading sadness in the room was just too great and my hand took advantage of it. I quickly said my goodbyes and left. Within 20 minutes the tremor had stopped and I was back to normal.

Stress and sadness and PD do not go together.

Life is so unlike theory.

2011-11-02T06:13:00.000-07:00

Went for a hour long walk this morning at 5AM. It was cool, about -3C, so I wore gloves and a hat. Gloves are useful in hiding tremors. I experienced some tremor in my right hand while on my walk, but it was rather fleeting. If that was all I had felt, I wouldn't be writing this now. I also felt "wobbly". My best metaphor to describe wobbliness is "sea legs". We traveled to and from England in the age of the ocean liners. In our case, we took the Empress of Britain both ways. If you have never seen an ocean liner, you would be shocked at how big they are - but that doesn't stop them from rolling when the ocean gets upset. The rolling of the ship can cause seasickness and walking is difficult. You stumble and roll with the waves until you get your sea legs and then you wobble. It is kind of an ordinary walk except that you think you might be off balance. Wobbling = sea legs. You can manage to walk without worrying about falling, but it looks a little odd.

I expect wobbliness is just one of those symptoms that will disappear after a good mid day nap and hopefully will remain dormant for a few more years. If not, I can always develop it into an Irish jig.

In Vino Veritas

2011-10-30T06:44:00.000-07:00

We went out for a fabulous meal at an old friend's home. We hadn't got together since I had been diagnosed. Of course, I had wine, several glassfuls. Well, at least half a bottle. Now in the past, wine usually caused two things to happen to me (a) fall asleep rather quickly and (b) make two or three trips to the bathroom at night. That night however, I found it impossible to do two things (a) get to sleep at all (b) empty my bladder. Is it a coincidence that I have PD, take two new drugs, and when I indulge (or over indulge) in wine, I have bad insomnia and the polar opposite of incontinence?

I think not.

I enjoyed lying awake and listening to my satellite radio without having to take a bathroom break.

Pass the Asti Spumanti please.

The fog comes on little cat feet

2011-10-27T06:23:00.000-07:00

A fog has settled over the city. It is not the type of fog I experienced when I lived in England, fog so dense you could barely see your hand in front of your face. This fog is not that bad, but it is denser than I have seen in a long time.

It mirrors the fog that sometimes stealthily sneaks into my brain as a result of PD. It is not that I lack anything, I can still do the crosswords, square numbers in my head, etc, - all the things I could always do but now, I am a little slower. I think that is a good adjective for PD - it slows you down. Fortunately, you can work around it and when you recognize it happening (it comes and goes, depending on the drug cycle), you can take steps to surmount it - at least I can at the stage I am in now.

It is said that one reason Hitler lost the war was he was suffering from PD that slowed down his thought processes. Could be, but probably the fact he was a homicidal megalomaniac surrounded by groupies was a greater factor.

Unlike Sandburg's fog, the fog over the city has yet to move on.

By the pricking of my thumbs.......

2011-10-26T06:20:00.000-07:00

something wicked this way comes.

I was awakened at 3:30AM by a short spasm. It was not a bad one, but just bad enough that it woke me and I could not get back to sleep. As I lay there, my right hand started to twitch. My brain calmly told me,"take your drugs, idiot". But, I was relaxed and didn't want to get up, so gradually my pointing finger began to drum on the pillow and the twitch turned into a tremor. I arose and took the drugs. They do not bring immediate relief, so I decided to go for a walk (which usually calms the tremor). Sadly, the tremor remained for a good half hour until it finally stopped - a combination of the drugs and exercise working together to fool my brain.

This was the first time the tremor was bad in the morning. I have a feeling I will have to increase the dosage of the mirapex I am taking. Is this a foreshadowing of my future? Taking more and more drugs until they stop working altogether? Probably. Let's face it, there is nothing I can do about it so I might as well relax, but I am not looking forward to the evil that is PD.

Football & that old parkie feeling

2011-10-23T06:25:00.000-07:00

Exciting football game last evening. The Bombers scored with less than a minute left to take the lead. They held on and won 26 - 25. It should have been a joyous occasion. Unfortunately, the stress of watching the game brought on an internal tremor in my right arm. I tried to ignore it but it eventually blossomed into a full blown right hand tremor. Combine that with familiar twitches in my left leg and you can see why I got upset. I sought refuge in sleep and by 8PM was sound asleep. I awoke at 4:30, took my medication, and went for an hour long walk. As I type this blog, it is 8:13AM and there is no sign of internal or external tremor (touch wood).

Those "myoclonic spasms" I have been experiencing arrive more often and with more force than ever before. I was awakened in the night twice. The first time, my arm seemed to jump off the bed and the second time, my leg did too. They are not high jumps, they just feel like momentary springings a few mm into the air. I don't think these are myoclonic spasms; rather, I think they are symptoms. Such is the joy of PD.

I have got to quit watching football games.

“The future is no place to place your better days.”

2011-10-19T06:47:00.000-07:00

I have seen better days. The problem is not the present and only to some extent is it the future. It is the past. On my walk I got to thinking about the things I could do in the past which will be denied me in the future. Running fast enough that you create a breeze, swimming a mile, being able to stand upright, a steady hand, a feeling of well being - all just examples of what I am talking about.

Do I sound depressed? I am not. Even without PD, most things I could do in the past would not be available to me in the future. With PD, I may reach the "inability point" earlier than my healthy friends, but either way, we all get to it sooner or later.

I shall try to concentrate on the present and not project my degrees of wellness, or lack thereof, into the future.

I found out that if I don't take my medication at specific intervals (every 4 hours), I come to regret it. Yesterday, I forgot one dose and the result this morning was, on my early walk, my right hand attempting to do a solo merengue. Fortunately, after 20 minutes or so of walking, my hand calmed down and went back to normal. That felt better. Normal is good. Abnormal is just a state of mind. I will stick with feeling normal.

To quote Voltaire, "life is a shipwreck but we must not forget to sing in the life boats".

To study the abnormal is the best way of understanding the normal.

2011-10-16T12:29:00.000-07:00

Feeling normal today. No shakes, normal amount of saliva, no cramping, relatively alert. Feels good! How long will it last?

Every normal man must be tempted, at times, to spit on his hands, hoist the black flag, and begin slitting throats. (H. L. Mencken)

You don't need a weather man to know which way the wind blows

2011-10-14T07:08:00.000-07:00

I think I am getting mad cow disease. Yesterday, I forgot to take my medicine - twice. The inevitable happened. My tremor returned in my right hand. It was a weak tremor but a tremor nonetheless. Then, as I should have expected, I had a nocturnal visit from the beast. My right leg shot straight out and my calf muscle knotted itself into what felt like a sheep shank knot. The foot joined in the circus and I was forced to stand up - thinking I had better set an alarm on my cell phone to let me know when to take the medicine. And I will - as soon as I figure out how to do it.

Thinking about cell phones made me wonder what superman will do now that there are no phone booths.....

I've a grand memory for forgetting.

2011-10-12T07:44:00.000-07:00

Got busy yesterday and forgot to take my medication at the appropriate times. The result was a sneak attack by the beast in the night. I was finally getting a decent sleep when my right leg went rigid and my right calf muscle spasmed. Mighty painful! Fortunately, it did not get into my foot and toes. I knew if I got out of bed, it would be a long time before I got back to sleep. I decided to try and ignore it and fell asleep in spite of the pain. The attack was a mere foray that was beaten back by a superior force.

The other result of missing my medication is my hand started to shimmy. That scared me as I was afraid the tremor would return. I took my meds and ran 3 miles and all appears to be well now.

I am forgetful; although I can usually remember three things: my wife's birthdate, other people's names and .....and.....Actually, I am only good at remembering two things!

Good news, bad news

2011-10-11T03:01:00.000-07:00

The good news first - it seems, statistically speaking, that PWP are less likely to get cancers. The bad news is that applies to all cancers except one; apparently we are more susceptible to melanoma. That's not good, considering the number of bad sunburns I have had over the years.

An estimated 10,850 people will die of skin cancer this year, 8,110 from melanoma and 2,740 from other skin cancers. And, wouldn't you know it, older caucasian males are more likely to die from some form of skin cancer. That is people of my age and gender.

Good thing I get checked every year since, as Stephen Wright has said, I plan to live forever. So far, so good.

When I woke up this morning my girlfriend asked me, 'Did you sleep good?' I said 'No, I made a few mistakes.' Stephen Wright

2011-10-10T05:42:00.000-07:00

My insomnia grows worse. A healthy 8 hour sleep eludes me. I sleep in 2 hour bouts in between 1-2 hour sessions of wakefulness. Even sleeping pills don't help. Last night I got 4 hours at best. At 4AM, I was out walking. That was 3.5 hours ago and now, on this Thanksgiving Monday, I am trying to get some work done.

And how about those "myclonic spasms"! I don't think that is what they are. When I lie down, various parts of my body will suddenly twitch. Could be a hand, a foot, my head or a calf muscle. They are harmless in that they are only momentary, but they do make me think the worst (PD paranoia) and some are massive jerks that awaken me just as I am falling asleep.

But I should count my blessings. There are many but chief among them is the agonist is working and I am tremor free (for now???).

Still: "Come to me now! O, come! benignest sleep! And fold me up, as evening doth a flower, From my vain self, and vain things which have power Upon my soul to make me smile or weep. And when thou comest, oh, like Death be deep."
(Patrick Proctor Alexander)

I may need an exorcist. Anyone seen Father Karras?

2011-10-08T07:22:00.000-07:00

I know, I was going to take a break but I have to record what happened last night (besides the joy at having the Blue Bombers destroy Hamilton). I have been getting frequent myoclonic spasms over the past months. Everyone has them. They are annoying because they jerk you out of your sleep just as you are about to doze off. Yesterday, I had the mother of all myoclonic jerks. My whole body jerked such that, for a nanosecond, my body felt like it arched a centimeter or so off my bed, sort of like Linda Blair's body did in the Exorcist only not so dramatic. I have to say, it startled me, but I managed to get back to sleep. However, if the next time it happens, I start to float above the mattress, I am going to be looking for an exorcist. Although, it might be interesting to have my head turn backwards, seeing as how I can barely move it from side to side most days.

A little demonic possession might be good for my old tense muscles.

No news is good news

2011-10-07T05:20:00.000-07:00

Nothing out of the ordinary has happened in the past 24 hours. Other than fatigue, I am asymptomatic (as long as I am medicated).

Here is an interesting video from the Oprah show:

http://www.oprah.com/health/Dr-Oz-on-the-Medical-Benefits-of-Stem-Cells-Video

It gives all of us suffering with PD some hope for the future.

If you have PD, you should also visit The Parkinson's Forum in the UK

Postings here may become sporadic unless my symptoms reappear. Please check back occasionally. Thanks to all who read this blog.

Something Old, Something New

2011-10-06T05:04:00.000-07:00

Not too much excitement on the PD front, thanks to the mirapex/amantadine combo. However, I still get that familiar twitching in my right leg and sometimes in my right foot. Both are bothersome but certainly not a problem.

But, last night I encountered some new "moves". I was lying flat on my back with my right arm by my side, bent at the elbow such that the lower part of my arm and my hand were standing perpendicular to my body and supported by a pillow. I lay like that for several minutes when suddenly, my lower arm and hand, in one uncontrollable motion, snapped down and slapped my chest. That made me sit up and take notice. It also made me laugh - I was hitting myself for no good reason. Later, as I was about to fall asleep, I was in my usual position lying on my left side, my left arm under the pillow when suddenly, my right arm snapped across my body toward the floor. It took me 2 hours to get back to sleep.

Finally, I noticed one of my fingers on my left hand make one involuntary tap. Could this be a sign my left side will soon suffer the indignities of my right?
I hope not and I will try to remain optimistic because fear is a disease that eats away at confidence until there is no hope left.

Walk Don't Run and the danger of yawning

2011-10-05T03:02:00.000-07:00

I finally got up the nerve to run a little ways - half a mile. It has been a few weeks but it still felt good. My groin pull still hurts somewhat, but I can live with it.

I like running because it gets the exercise over with quickly. If it weren't for that, I would hate running. In fact, I would hate exercising. Recently, I read that exercise is essential for PWP. That's good because I have been running for 40 years. I have a touch of OCD and if I don't exercise, I drive everyone crazy with my foul mood.

Now I discover that a recent study showed low impact exercises to be the most beneficial for PWP. In that study, the low impact exercise was slow walking on a tread mill for an hour. Oh, the horror! One hour on a treadmill - I might last one session. Other low impact exercises suggested were dancing (as if! I have two left feet and one doesn't work so well), aerobics (you need some sense of rhythm for that. Aerobics is out) or pilates (right! I'm not even sure what that is).

Thankfully, I don't mind walking. I just turn on the Ipod Touch and go for about an hour, now just 2 times a week. It is better than a treadmill because there are things to see. The other two days I do race walking for 2 miles on an indoor track and the stationary bike for 20 minutes (about 8 miles) and some resistance training.

But, what will happen when winter comes? Remember -20C is not unusual. We northern PWP just have another obstacle to overcome, compounded because in winter, I have a strong desire to hibernate.

The above was written late last night. At the moment it is approaching 5AM. I have been awake since 4AM. I was lying in bed in that twilight zone between unconsciousness and consciousness when I gave a huge yawn. This was a stimulus for my right leg to shoot straight and my calf muscle to knot up like a sailor's rope. The pain was something else. I rubbed at my leg but it was like rubbing an iron bar. I kept rubbing and it gradually subsided but the pain remains even now, an hour later, albeit not as gut wrenching. I remain tired and yawning.

A yawn is a silent shout.

I can't complain, but sometimes I still do......

2011-10-04T06:13:00.000-07:00

Okay, I know I have written about this before, but it is driving me crazy. I cannot talk properly. My voice has all but disappeared. It would be impossible for me to shout "theater" in a crowded fire or anywhere else. I sound like Tony Bennett with laryngitis, only quieter.

89% of PWP have speech problems, the most common being hypophonia (reduced volume), monotone (reduced pitch) and dysarthria (problems with articulation).

I keep apologizing to people I am talking to when they ask me to repeat myself. People also pull back from me saying "I don't want to catch that cold" or words to that effect. I let it go because I don't want to go into long explanations.

I also hear myself talking and it is frustrating because I am used to my real voice. This new voice is going to take some getting used to. Pretty soon, people will refer to me as the "low talker", like that woman in the Seinfeld episode.

I have been scolded in the past with "You are just not listening!". Now, that is all I will be doing. Voiceless people don't talk; we just listen.

Don’t underestimate the value of irony

2011-10-03T07:19:00.000-07:00

Just finished a difficult hour long workout. What bugs me is I have worked hard since my 20's to stay in shape - not Mr. Universe shape, but healthy shape. Other people I know get their exercise lifting their remotes and what happens! I get the incurable neurologic disease! Ironic, isn't it?

Symptoms are practically non-existent. Constant fatigue is the only one left - until the medication peters out. I may not be posting everyday until there is a change in my condition.

In the meantime, from Michael J. Fox:

I love the irony. I'm perceived as being really young and yet I have the clinical condition of an old man.

A catharsis. “Quit worrying about your health. It'll go away.”

2011-10-02T06:03:00.000-07:00

People often ask me how I am doing. I am more concerned and upset over the fact that the Blue Bombers cannot score a touchdown from the one yard line (to win the game) than I am over my parkinson's diagnosis.

Of course, it is always there, in the back of my thoughts, that someday I will likely become incapacitated. To be honest, I think I will be dead before hitting stage 5. Small consolation. The thing is, I don't dwell on it. I still do everything I did before; I just do it earlier because my bed time is now around 8PM. For example, yesterday I did a 2 mile walk at 5AM. This was a little later than usual because I stayed up until 10PM watching the Bombers lose the nail biter the night before. They can't score from the one yard line! I mean, one yard! one lousy yard! Two tries to get into the end zone from the one yard line and they blow it!

It just doesn't make sense to worry about PD; afterall, I have no control over the disease, so there is nothing I can do about it. I will deteriorate over time but that's just the way it is - we all will deteriorate with age, I will just do it faster.

There are more important things to worry about. Like a football team that breaks my heart. Besides, to paraphrase somebody (I forget who)...Before going to sleep, I surrender all my worries to God. He is going be up all night anyway.

Better him than me.

The Good, The Bad & The Ugly of PD

2011-10-01T06:27:00.000-07:00

Day one

BRADYKINESIA

Bradykinesia is a slowness of movement which gets worse over time. Here is what I might have to experience (not everyone gets them all)

The inability to start a movement (freezing)
The slow execution of a movement
The slowing down of an already slow movement until it stops and a freeze ensues
Reduced arm swing
A shuffling walk
Difficulties with speech
Difficulties swallowing
Constipation
Increased urine production
Reduced body movements
Reduced blinking
Reduced facial expression.

Of course, I have already experienced a few of these and so far they don't pose a great problem. In fact, as a person who used to experience frequent bouts of The Aztec Two-step, one of these symptoms (which I have) is a bonus!

Thinking too long about some of the other symptoms can be a little depressing but, onward and upward. Think positive thoughts. Be optimistic. Don't worry.

OK, but for now, please send in the clowns.

PD - Making me tired all the time is just downright rude!

2011-09-30T02:59:00.000-07:00

Nearly 75% of PD victims experience fatigue or Excessive Daytime Sleepiness or a combination of the two. I am no different. I wake up yawning and go to bed in the same state. This is just one of the non-motor symptoms of parkinson's and it is compounded by using the dopamine agonist, mirapex. There are days I feel like, and act like, a zombie - but what can I do? I could reduce the fatigue by cutting out mirapex but then my right hand would start its incessant tango. An afternoon nap helps a bit but not enough. I am between a rock and a hard place but have decided I do not want the tremor to return, so I am stuck with the all-consuming fatigue.

Whoever said that the amount of sleep a person requires is five minutes more, was a genius.

In the meantime, if I ever do fall into a deep sleep, don't wake me up until March.

I am unhappy with my neck

2011-09-29T05:22:00.000-07:00

One of the early signs of PD is a stiff neck. I have had a stiff neck for years. I just thought it was due to one of the many injuries I have suffered over the years - maybe a little arthritis. I never gave it much thought. I had (and continue to have) difficulty looking over my shoulder when backing the car out of the garage. I couldn't (and still can't) turn my head in either direction without feeling the muscles stiffen and resist movement. And oh yeah, there is also the pain. When I turn my head in either direction, I feel pain throughout my neck and into my shoulders.

Just another of the little joys that PD sends my way. At least I can still see straight.

The trouble with being a hypochondriac these days is that antibiotics have cured all the good diseases.

2011-09-28T03:28:00.000-07:00

I remember an Anton Chekhov play in which one of the characters says words to the effect that if there is a plethora of treatments for a disease, the disease must be incurable.

There are a number of treatments for PD and at the moment, parkinson's is incurable.

The effect of this is that I am becoming a hypochondriac. Yesterday, for example, while lying in bed, I kicked at the covers with my left leg. The result was a cramp in my left foot. I immediately thought I was progressing into stage two where both sides of my body will be affected. The cramp went away when I stood up and with a little rational thinking, I realized it was just one of those annoying cramps everybody gets. At least that is my position and I am sticking to it until I find out differently.

The trouble with the internet is that you can discover everything you ever wanted to know about PD and you await the arrival of every symptom you ever read; then you imagine you are sometimes experiencing a symptom when it is not there. For example, victims of PD eventually lose their balance and are prone to fall. When I fell on my walk, described in an earlier post, I thought falling was now on my PD agenda when in fact, I had stubbed my toe on a raised piece of an old sidewalk.

You know that old joke about the epitaph on the headstone of a hypochondriac NOW WILL YOU BELIEVE ME. I'd rather not be that corpse. Increased symptoms will eventually arrive but until then, I will remain optimistic and avoid finding those symptoms before they get here.

A Short History of Medicine

2000 B.C. - "Here, eat this root."
1000 B.C. - "That root is heathen, say this prayer."
1850 A.D. - "That prayer is superstition, drink this potion."
1940 A.D. - "That potion is snake oil, swallow this pill."
1985 A.D. - "That pill is ineffective, take this antibiotic."
2000 A.D. - "That antibiotic is artificial. Here, eat this root."

Proof is arbitrary, unless it concerns our libido........

2011-09-27T02:56:00.000-07:00

I have not had a tremor in the past day and a half, thanks to mirapex and amantadine. I can feel that my arm and hand want to get jiggy, but cannot. It is a good feeling. Who knows how long it will last.

If nothing else, parkinson's and its treatments are interesting. For example, Mirapex, that little white pill that has stabilized my right side, has a couple of odd side effects.

Mirapex can cause increased libido.

OR

Mirapex can cause decreased libido.

Which one did I get? Neither, what libido I have left has remained constant. The only side effect of mirapex that I got is an obsession with food that is maybe second to sex.

Food and sex - forever linked. Great food is like great sex, the more great food you eat, the more your body craves it.

Fortunately, I have my constant craving under control. I just watch the food channel!

Spit and be silent

2011-09-26T03:50:00.000-07:00

We victims of PD often have excess saliva in our mouths. This not caused by an over production of saliva in the major and minor salivary glands. Rather, excess saliva builds up in our mouths because we tend to swallow less. Usually it is not noticeable, but sometimes it causes spittle to form at the corners of our mouths. I combat it by forcing myself to swallow more and talk less. So far, it has not been a problem.

But, my voice is disappearing again. It seems to emanate from the far recesses of my throat and present itself as raspy and quiet. It makes social discourse rather difficult because (a) I can hear myself and know that it is not my usual voice so I stumble over words with the result being I tend to keep quiet and (b) the listener has trouble hearing what little I have to say.

Silence is becoming my mode of conversation.

Not merely an absence of noise, Real Silence begins when a reasonable being withdraws from the noise in order to find peace and order in his inner sanctuary. ~Peter Minard

The future ain't what it used to be. - Yogi Berra

2011-09-25T05:55:00.000-07:00

I was watching the Blue Bombers play Toronto last night. I got up to get a drink of water and on the way back, my right hand started to bounce around like a whirling Dervish, in spite of the drugs I had taken about an hour before. You can imagine my disappointment. Two weeks without a tremor and now it was back! My hope that I could face the future because of the drugs was fading.

What brought on this new tremor? I had had a small recurrence at the funeral and now it was here again. What was the connection? How was a funeral related to a football game? It must have been stress. I am a huge Bomber fan and they were getting beaten by an inferior team. My brain just went into overload, overcame the drug barrier and I got a dancing hand. That was it - stress - no matter how small, seems to give my hand free rein to annoy me.

I am relieved to say, the hand is back to normal this morning. The drugs are working again.

Note to self: avoid (a) watching losing football games and (b) all social situations.

The Bombers will just have to keep winning and I will consider becoming a hermit because, as Steven Wright said, “Hermits have no peer pressure.”

It's no use of talking unless people understand what you say.

2011-09-24T06:25:00.000-07:00

I had to go downtown yesterday, to the Trizac Tower. I got on the elevator with a woman. I had to go to the 3rd floor but noticed the first stop on the elevator was the 19th floor. I mumbled "wrong elevator" but it came out "rrog elvater". At first she seemed startled but then the woman asked me where I wanted to go. I turned and said "three" but, because I had excessive saliva in my mouth and because I got a little confused by the question, I slobbered out "free" with my jaw shaking and spittle forming at the corner of my mouth. She smiled kindly and pointed out the correct elevator by which time, I had recovered enough to give an intelligent smile and precise "thank you".

Dysarthria is the name given to speech disorders caused by loss of control of muscles that produce sound. Hypokinetic dysarthria is the name given to parkinson's speech problems which can include loss of volume control, harshness, difficulty changing pitch, fast talking and imprecise pronunciation. Most of the time, I sound mostly normal but other times I sound like I have the mother of all colds and I speak in a monotone and seem completely detached from what I am saying. The woman on the elevator caught me by surprise and must have thought I was not playing with a full deck. The excess of saliva (another symptom) just added to the effect (think of the Seinfeld episode in which Kramer has his mouth frozen by the dentist). It was embarrassing at the time but I will never see her again and besides I think I recovered enough to leave her with a decent, if not a great, impression.

Anyway, from now on I talk only to myself then at least I will know somebody is listening and understanding.

Courage is resistance to fear, mastery of fear, not absence of fear - Mark Twain

2011-09-23T03:27:00.000-07:00

I think my father was the most courageous man I have known. He was diagnosed with Altzheimer's in his seventies and he lived into his mid eighties. Imagine, when he was first diagnosed, he knew and understood what would happen to him in the future; yet, he never complained; never even spoke about it. He just went bravely into, what he later described as "hell".

When I think of my possible future, I think of my father. If he could resist fear, so can I. If he could endure, so will I. There is no better role model. I can deal with any fear that PD might throw at me, just by thinking about my dad.

I am the master of my fate.

I have essentially been tremor free for a couple of weeks. What a relief to feel normal! Yesterday however, I went to a funeral for a man I held in very high esteem. It wasn't terribly sad because he had lived a long and fascinating life. Originally, he was from Texas. He came to Canada to play football back in 1950 and quickly became one of the best players ever to play here. He settled in Canada but always claimed to be a citizen of 3 countries, Canada, USA, and the Republic of Texas. The event was a celebration of his life. Why then did I have to leave early when my hand would not keep still in spite of the drugs?!

It seems to have calmed down this morning.

I've seen the future brother, it is murder!

2011-09-22T02:56:00.000-07:00

Typically, PWP go through 5 stages although, the time spent in each stage varies and is not predictable. The stages I have to look forward to are:

Stage one: a patient usually experiences mild symptoms. Typically these symptoms include the presence of tremors or experiencing shaking in one of the limbs.

Stage two: the patients symptoms are bilateral, affecting both limbs and both sides of the body. He/she will have problems walking or maintaining balance.

Stage three: can be rather severe. Walking and standing can be difficult.

Stage four: severe symptoms of Parkinson's. Walking may still occur, but it is often limited and rigidity and bradykinesia are often visible. The tremors or shakiness that appeared during the earlier stages however, may lessen or disappear.

Stage five: The final stage of Parkinson's disease. The patient is usually unable to take care of himself or herself and may not be able to stand or walk. A patient at stage five usually requires constant one-on-one nursing care.

I am currently at stage one. Symptoms are rather annoying but under control. I suspect I will be dead before reaching stage 5 and in the meantime, there is a plethora of drugs to keep the symptoms in check.

For this, be sure, tonight thou shalt have cramps, side-stitches that shall pen thy breath up”

2011-09-21T03:13:00.000-07:00

Everyone gets the occasional foot cramp but, about 7 years ago, I was getting them a few times a week, usually, if not always, when I was lying in bed. They were not the wretched cramps I get now where my foot twists itself in and up; they were the ordinary annoying cramps that make you get out of bed and hop around. They were not long lasting and did no damage.

This went on for several weeks. Their frequency worried me. I even mentioned it to my doctor who found nothing unusual about them. I felt foolish for bringing it up. Surely he had more serious problems to deal with. He was non-judgmental and sent me on my way, relieved that I didn't have a monumental illness.

Now, I find out that such foot spasms could be a forewarning of neurological problems, such as parkinson's. Who would have thought!?!

As I said, everyone gets the occasional cramp and 99.9% are not symptoms of parkinson's or any other severe condition. But if your doctor says, "I have good news and bad news. The good news is you are not a hypochondriac." Be afraid. Be very afraid.

O Sleep, O Gentle Sleep, Natures Soft Nurse, How Have I Frightend Thee?

2011-09-20T03:16:00.000-07:00

Insomnia is a highly frequent complaint in patients with PD. It seems to have hit me early in the course of the condition. [Is PD really a "disease"? I didn't catch a PD bug? It is just my brain beating up on me. I think it should be called a "condition"]

Anyway, I have no trouble falling asleep; rather, my problem is staying asleep. Today I woke at 2:30AM and have been up since then. Thank goodness for satellite radio. I lie in bed and listen to American news shows, some of which border on the insane (eg Glenn Beck) while others tend to be more liberal and interesting (eg MSNBC). BBC radio is also very good. I wait until 4:30 before getting out of bed and I go to work. By noon, I am a wreck so I watch TV and take about a 15 minute nap (today's TV - another episode of "Weeds" from Netflix). The nap sort of refreshes me until 8:00PM or so when I crash.

In the end, I get about 6 hours of sleep. I know, that is not bad, but I need at least 8 hours to make it through the day.

A sad tale, but true.

Apparently sleep is a luxury beyond my means.

Strikes and gutter balls

2011-09-18T16:59:00.000-07:00

For two days, I was symptom free (thanks to the drugs) and able to participate in life without feeling embarrassed by a right hand and arm doing a salsa. Neither were there any charlie horses, or agonizing muscle curls, at night. I still could not sleep for more than 3 hours straight and so I got up early and was out walking my daughter's dogs at 4:30AM. That got rid of my daily exercise. Things were looking good.

But later, while lying down watching TV, I felt those familiar sparks in my legs. I prepared myself for the worst but that gut-wrenching twisting of my leg muscle did not appear. I relaxed. A few minutes later, my toes began to curl down. I was determined not to let them have their way. Through concentration, I held them at bay. I relaxed - big mistake. As soon as I quit concentrating, they continued to curl down and my foot went into spasm. That hurts! The sole of my foot was tender. I did my usual - stand for a few minutes and the foot and toes gave in and went away.

Sometimes, you just can't win...and with PD, you don't stand a chance, but it is important to keep on trying.

Here I stand, head in hand, can't turn my face at all

2011-09-16T03:25:00.000-07:00

Maybe you saw Mohammed Ali at the Academy Awards for the movie "When We Were Kings". His face was expressionless (although, you could see the twinkle in his eye). A medical dictionary calls that look the Parkinson's Mask and defines it as "an expressionless face with eyebrows raised and smoothing but immobility of facial muscles". It is simply a fixed, vacant stare that makes the victim appear uninterested in what someone is doing or saying. A PWP with this condition can usually force a smile but it doesn't come easily. For example, if they are having their picture taken and are told to smile, they can. They just can't do it without effort.

This condition is correctly called "hypomimia" and, as I wrote in an earlier entry, it has visited me once back in February. I am told it has not happened since; although, I think I can feel a difference in the muscles around my neck and mouth, but I am getting a little paranoid. So who knows what will happen next?

An Alaskan cartoonist, Peter Dunlap-Shohl, a PWP, captured the essence of the condition in this cartoon:

The second picture in row two depicts the character with dyskinesias, uncontrolled movements brought on by prolonged use of L-dopa.

For me, so far, my symptoms are controlled by mirapex, a dopamine agonist. Dopamine agonists are drugs that act like dopamine by sending the same message as dopamine to nerve cells. Agonists are less likely to result in dyskinesias.

Now it is time for me to go and take my mirapex, with an amantadine chaser.

There is never a dull moment with this condition.

Lend me your ears.

2011-09-15T03:06:00.000-07:00

My voice has returned to normal and I hope it will remain that way for a few years. Funny how these things come and go. I feel fairly ordinary now - in a good way; although, a touch of insomnia is making incursions. I wake up around 3:30 and can't go back to sleep so I get up and get to work. It is amazing how much you can get done at that time of day. No distractions. It frees up time for a movie in the afternoon. I am so hyped up, I can't even nap and at 7pm, I am still wide awake. It is like I am on crack cocaine.

Give me an hour or so and I will crash. The exhaustion will start somewhere in my body and slowly, but surely, will fill up the remainder of it. By 8:30pm, I will be sound asleep.

Fortunately, there are only reality shows on TV these days, so I don't miss anything good.

(next morning) Well, I did fall into a deep sleep around 8:30 only to waken a little after midnight to my right leg twitching inside. Here we go, I thought. Sure enough, the muscle began to twist, my leg began to turn inward and my foot upward. The beast was back. I thought I would try to defeat it by rubbing my leg - no luck - by holding my leg down with my left leg - no luck. Finally, I stood beside my bed, unable to sleep but still lost in a dream and finally relaxation settled in, with some residual pain, after 5 minutes. Managed to get back to sleep but was awake and working by 4:30AM.

A good night's sleep to me is like a 70 foot great white shark. It might exist, but I am never going to see one.

The old gray mare....she ain't what she used to be.

2011-09-14T10:49:00.000-07:00

Went to the neurologist today. Took about 10 minutes as there wasn't much to talk about. Increased the dosage of my medication and asked a few questions. Nothing else he could do. I go to the Movement Disorder Clinic in November.

The tremor has all but disappeared and I am feeling pretty good.

Had lunch with an old friend awhile back and told him I had PD. His response was "We are all going to get something." He was referring to the aging population which is living longer lives. Online, I found this article, which should scare people:

In addition to relieving patient suffering, research is needed to help reduce the enormous economic and social burdens posed by chronic diseases such as osteoporosis, arthritis, diabetes, Parkinson's and Alzheimer's diseases, cancer, heart disease, and stroke.

To name but a few.

The economic impact will be huge. My friend was right, we are all going to get something eventually. As Ralph Waldo Emerson said, "All diseases run into one, old age."

But then that famous pitcher, Satchel Paige (at 42, the oldest rookie ever in major league baseball) said, "How old would you be if you didn't know how old you was?" Maybe that is an attitude we should all adopt.

Enough rambling. I will return when anything new arises.

The days of whine and roses.....

2011-09-13T03:55:00.000-07:00

If it sounds like I am whining in my postings, well, get used to it. This blog is my catharsis, my shrink and my shaman all wrapped up in one.

However, today I feel pretty healthy. The tremor has not reappeared and I see the neurologist tomorrow.

Things are looking good. Not great, but not black either. Let me say for now, things are rosy, while always reminding myself to be aware of the thorns.

We'll see what the doctor says.

It's a quarter to 3. Only the dogs are awake...and me.

2011-09-12T02:09:00.000-07:00

I decided to get up and do some work. Sleeping was difficult, even with the drugs. First my back hurt but a heating pad helped that. But then, insidiously, the skin on my right lower leg became hard. Hard! you say. That is the only way to describe it. The skin itself wasn't hard, it just felt hard. The beast was returning. Gradually the "hardness" crept into my calf muscle and began its malevolent work. My hardened calf started to twist and my leg straightened like a steel pipe. Little jolts began firing in my foot. That was not a good omen! I tried to ignore the beast but it had its mission and wasn't about to let it go.

"What the hell," I said aloud and got off the bed and planted both feet on the floor and stood there for a few minutes. The muscle relaxed and the beast retreated. I, on the other hand, could not relax so here I am at about 3:15 AM writing in my blog. There is still some pain in my leg but if I don't think about it....well, at this moment I have not achieved that level of nirvana yet.

The last time I was out of bed this early was when my kids were young at Christmas. We were indulgent parents and let them drag us from under the covers and down the stairs to see what Santa had brought. Previously to that, the only time(s) I was up this early was when I hadn't gone to bed and didn't plan to in the next couple of hours. Parties can be sleep deprivers.

It is a cruelty of life, not being able to sleep when it is pitch black outside. Totally unnatural. Thank God for the afternoon nap. Consciousness is that annoying period between naps.

The sounds of silence

2011-09-11T09:54:00.000-07:00

I am being robbed of my voice!!! I am getting quieter and raspier with each passing day. Went to buy a new cell phone and the person serving me had to keep saying "sorry?" "What's that?" "you want what? Finally, I quit speaking and let my wife handle everything (she is better at it than I, anyway).

Reduced speaking volume is called "hypophonia". That's not so bad, I can always force myself to speak louder. The raspiness is more of a monotone. In other words, I am having difficulty conveying my emotional message, even if the listener can hear me. I have read that I also will have the joy of experiencing "dysarthria" - ie - difficulty forming the words I am trying to say.

On the upside, the tremors remain at bay; although, every so often they appear as my thumb and first finger on my right hand seem to feel the need to caress each other. Unfortunately, I have also felt this on my left hand as well. Still, I appreciate the vacation from the tremors and vibrations.

Shakespeare wrote "Give every man thy ear, but few thy voice.” Apparently I am not going to have a choice in that. But, I have never had much to say anyway.

Stress doesn't hurt but our reaction to it might.

2011-09-09T04:27:00.000-07:00

The tremor remains fairly calm, except in moments of stress; not distress even, just events beyond what I was expecting (in this case a misplaced file) then the tremor returns. Its frequency is reduced and its intensity lessened, but it is there, just to remind me that I am not home free. My strategy to cope with this - forget about the lost file; it is here somewhere. Go and watch an episode of Californication on Netflix. A little Hank Moody to cheer you up. I recommend this method to the medical community.

This I did and later found the file where I had put it for safekeeping. No stress, no tremor.

What is it like having PD, with or without a tremor? Well as one person in the Parkinson's Forum said, "Life just gets harder."

That about sums it up.

Off to the cottage where we only have dialup. Chances of a posting are slim. Back Monday.

I now have readers in Canada, USA, Ireland, UK, Germany, India, Brazil, Hungary, Netherlands, Russia, Thailand, Japan, Spain, Belgium, France Greece and Malta. Thanks to all of you.

A Subtle Drive-by Complaint

2011-09-08T03:42:00.000-07:00

Still no tremor; although, during a vigorous workout, I could detect the muscles in my lower right arm and hand wanting to be set free; to be released, so to speak, to annoy and embarrass me. But, it was not to be. Not yesterday. All exercises went smoothly, without any foreign vibration. Even the exhaustion backed off a bit. I still took that afternoon nap. That is one of the advantages of having your office in your house - naps and movies.

The only problem remaining is that "parky" feeling. This is difficult to describe. You are loose all over with weak muscles and pliable bones. When I am walking, I feel like a marionette whose strings are being cut by a malicious puppeteer. It is not noticeable to others; in fact, people say I look normal and I suppose I do. But, inside I feel totally abnormal and outside, I notice the occasional shuffle when my right foot doesn't hit the ground properly.

Complaining can be a vaccination against despair, so, I thought I would get an early start.

The Vulcan Mind Meld

2011-09-07T04:00:00.000-07:00

Okay, so this has nothing to do with Vulcans - just a catchy title.

Yesterday, I had no tremor, zero, ziltch, none and I think it was due to the melding of the effects of two little pills, mirapex and amantadine. I took them both in the morning and after two or three hours - no tremor. Of course, I was too tired to celebrate as I suspect that state of zombiism I slipped into was the result of the pill meld.

Mirapex is a "dopamine agonist" and it mimics or imitates the action of dopamine. As I mentioned earlier, besides sleepiness, some side effects of mirapex are hallucinations, leg swelling and obsessions with food, sex and activities such as shopping, gambling and Internet use. Of course, I get eating! Maybe some internet use but I have always been on the internet for extended periods of time, so that doesn't count.

Amantadine, is an anti-viral drug, which seems to enhance dopamine and blocks glutamate, a brain transmitter which acts as a neurotoxin in the presence of impaired cells, such as those which produce dopamine.

Or something like that.

Whatever they do, they have taken away my tremor, which I won't miss, and have given me an excuse for a power nap in the afternoon. Success is sweet.

If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. - W.C. Fields

God is a Comedian but his audience is afraid to laugh

2011-09-06T05:04:00.000-07:00

I was reading an article in the Toronto Globe & Mail in which a PWP spoke of his initial reaction to his diagnosis. He was in denial. I must have missed that stage. How can I deny the obvious? Of course, his diagnosis came when he was in his mid-thirties, young, healthy, strong - denial at that time in life is probably logical. At my age, denial is just a river in Egypt. I have gone from diagnosis to acceptance, without the stress of denying the undeniable.

I have never asked myself, "why me?" or any variation thereof. I have the disease. It is just one of life's little jokes. Joke? you may ask. Yes. Isn't it true that if you want to hear God laugh, tell him your plans? God is a jokester and (s)he and I have had a giggle or two about my situation. For example, when my 3 month old granddaughter is upset, she settles down quickly when I hold her. After all, my right hand/arm is a human vibrating bed for her. On the other hand (no pun intended), my right hand is useless when burping her. Once it gets its snare drum, staccato rhythm going, it just won't stop and becomes a form of syncopated child abuse.

Can't you see God chortling on high?

Two and A Half Good Days

2011-09-05T03:45:00.000-07:00

I can have good days and bad days. Bad days involve exhaustion, tremor and leg cramps, or any combination of those. Good days involve slight tiredness, reluctant tremor and only some leg stiffness.

The past 2.5 days have been pretty good. An afternoon nap of 15 minutes each day prevented the exhaustion and the medication kept the tremor to a minimum. Some loss of balance, especially when getting out of a soft sofa; although, I am not sure I can attribute that to PD. I feel it is just the aging process, as I have seen it happen to others of my vintage.

One other symptom I may be experiencing is impaired speech. Parkinson's disease sufferers sometimes have problems speaking. Their voices are often monotonous and hard to hear. I am not so certain about this in my case. I do know my voice is developing a certain harshness to it, but monotonous and hard to hear...... Well, maybe. My wife is often complaining....what?.....pardon me?......sorry?....can you speak up?... can't hear you!, etc. My problem is I am not sure if it is my speech problem or her hearing problem. After all, she too has passed sixty.

Besides, I never could speak well enough to be unintelligible.

Micrographia - I've got to admit its getting smaller

2011-09-04T05:38:00.000-07:00

One symptom of PD is micrographia, very small handwriting as fine motor movments deteriorate. I tried to describe it in an earlier post. It is as if the brain knows what it should be doing, but the hand stiffens and slows down as the pen moves. No amount of concentration helps.

Even in my parky state, my signature is readable. The picture below shows my signature when the drugs kick in and my signature when the drugs are no longer working. Still not too bad, but it can be worse than this example.

A better example, that I found online, is below. The top signature is when the writer is off drugs and the one below is when the writer is on drugs.

Fortunately, my handwriting is still better than a friend of mine, who does not have PD, and whose handwriting is indecipherable and I wonder if all doctors have PD. Their prescriptions are unreadable except by the pharmists who, I believe, have special decoder rings.

You may not be able to read a doctor's handwriting and prescription, but you'll notice his bills are neatly typewritten. (Earl Wilson)

My idea of exercise is a good brisk sit. (Phyllis Diller)

2011-09-03T07:00:00.000-07:00

Over and over in my readings about PD, exercise is emphasized as a possible way of delaying the progression of the disease. But, nowhere do they tell you what kind of exercise is best or for how long each session should last - probably because any exercise for any length of time is beneficial.

The exercise regimes I use (and why) are:

1. Running - although lately curtailed due to a groin injury, I normally run about 2 miles alternating fast laps with slow. If I am "feeling" the joy of the exertion, I will go 3 miles. Running is good because the arms are bent and somehow that interferes with the tremor in my hand and thus can be done in public with minimum embarrassment (yes, I confess, my tremor can be embarrassing)

2. Walking - I usually walk for 40 minutes to an hour. I exaggerate my arm swing so that I look like a North Korean soldier on steroids. For some reason, I do not find this embarrassing. I also lengthen my stride and emphasize heel/toe. In my mind, such exercise may delay the onset of a lack of arm swing and a shuffling gait. It may also help prevent falls. I can keep my tremor to a minimum by gripping my Ipod Touch in that hand.

3. Race Walking - I used to do this competitively 25 years ago. If you don't know the technique, I am sure it can be found online. This is a great exercise. It combines the exertion of running with the healthiness of walking (ie - easy on the joints). Your arms are bent, so that little, if any tremor shows up. The best reason for race walking is, it is great for balance. Find a line on a track or on the road and when you plant your feet (heel first), do so so that they land on the line every time. The body should be held straight with lots of good hip action - good for the core muscles involved in balance. I believe the world's record over a mile is 5.5 minutes.

4. Resistance Training - I use machines and occasionally, free weights. Emphasis is on the abductor muscles. I hate weight training, but I figure, what the heck, I am here so why not add bench presses and flys and get those pecs looking as good as can be expected in a 65 year old male. One of these days, I will work on my abs and maybe develop a 2-pack or less.

5. Stationary bike - my bike is broken so I am reduced to a stationary bike. I use it as a warm up to get all lower body muscles moving - usually 6 miles at 2 minutes per mile over 20 minutes.

6. Stretches - I concentrate on any group that will help maintain balance as the disease progresses - eg - hamstrings, quads, back, etc.

These are the routines I use in my exercise program. There are other routines. A couple of decades ago, a good friend of mine told me he had decided to take exercising seriously.

"Good!" I responded

"Yep," he said, "today I bench pressed my sheets. One set of one."

He also told me he was going to start stretching because, "I want to be 6 foot 7."

Spousal Support

2011-09-02T04:33:00.000-07:00

Lately I have looked into support groups. I am not sure why. It just seems de rigeur for a PD victim to use a support group. At the moment, I don't feel the need. I have my readers, but more importantly, I have my wife. Heaven will not be heaven if my wife isn't there. She exudes quiet confidence about my condition. Not the fawning type but rather the type that admonishes me with "Why do you read that stuff? You are OK now and there is a good chance your PD will progress slowly and if it doesn't, we can work it out!"

I value those remarks and when I tell her I am suffering a moment of fear. She listens. That's all - just listens - and somehow the fear dissipates. The upshot is, I know I am not alone in my thoughts as she somehow gets into my head and keeps me grounded.

The only thing a sane man requires with PD hanging over his shoulder, is a good wife. I still have my sanity and I have an exceptional wife. A support group, at this stage of the condition, does not seem necessary.

Did I mention my wife is a physiotherapist? She knows what she is talking about. I am a very lucky man.

Of course, we still have our moments. To paraphase Jack Benny, my wife and I have been married for thirty-seven years and not once have we had an argument serious enough to consider divorce; murder, yes, but divorce, never.

Writing is a bonus and my therapy. I talk about myself and everything makes sense!

2011-09-02T03:54:00.000-07:00

I started this blog 18 days ago and have close to 600 reads with readers in Canada, USA, Ireland, UK, Germany, Russia, India, Japan, Thailand, Malta, Netherlands and Nepal. It is gratifying to have a large audience as my therapist, and much cheaper. Thanks to all of you. I hope you will keep on reading as I try to demystify PD both to myself and to the reader.

UK Parkinson's

Leg spasm, be not proud, though some have called thee Mighty and dreadfull, for, thou art not so

2011-09-01T02:32:00.000-07:00

"I went to a Gestalt therapist and said that I want to be able to at least tell my muscles that aren't involved that they don't have to go into spasms too."(Dick York)

I am just about asleep and I feel my leg muscle(s?) start to cramp and stiffen at the same time. Within nano seconds, it is in a full blown spasm, twisting away as if it is consciously, gleefully, trying to injure me. It is trying my patience. I jump out of bed, not realizing my foot has started to curve in, and I land on the outer edge, like some misconceived salchow. I almost break my ankle, but I survive to fight another day.

Except it doesn't take a day. Around 2 in the morning, it starts again. I go into the fetal position.... but it has that particular maneuver figured out and keeps on twisting; so I straighten my leg into a rigid post, hoping that will stretch the muscle into relaxation. No such luck. Finally, I lie on my back, bend both knees apart and put the soles of my feet together while pressing my hands down on thighs. I feel the muscle let go and relax. Success! I have defeated my nemesis. Victory is sweet and I lie awake enjoying its taste.

Problem is, I now have insomnia and my sleeping pill doesn't help. I turn on Third Rock From the Sun and fall asleep about the time Sally figures out men and women really are opposite sexes. Oh, for the good old comedies and dramas. I detest reality TV---almost as much as muscle spasms!

Between the desire
And the spasm
Between the potency
And the existence
Between the essence
And the descent
Falls the Shadow

(T. S. Eliot, The Hollow Men)

To him who is in fear, everything rustles

2011-08-31T02:05:00.000-07:00

My future is a shadow, lurking by my bedside, and sometimes, at night, I think I can see it and it is not pretty. It is at those times that I suffer a moment of doubt with a side serving of fear. Then I remember, I should really get the facts first, and then panic.

Fact: PD progresses at different rates for different people - think positively - slow progression
Fact: Although it can't be cured, PD is a treatable disease
Fact: I have the tremor dominant form of PD and the prognosis for this form is more favourable than the other form (PIGD form)
Fact: Late onset PD victims are less likely to develop dyskinesias from the use of l-dopa.
Fact: I am 65 and don't have to live with PD that long. Look at Michael J. After 20 years, he still functions relatively well.
Fact: I have a caring and supportive wife which makes living with PD that much easier.

Still, I do have my moments; but, I always convince myself that fear resides only in my brain and I still control the majority of that organ. All I need to do is banish fear from my mind.

Someone (I don't know who) once said, "There are very few monsters who warrant the fear we have of them."

I have banished my fear ..... until the next time.

Karate Duck

2011-08-30T02:59:00.000-07:00

People have told me they are worried about getting parkinson's. Don't be. In Canada, your chances of being a victim of this disease are less than 0.3%, slightly better than your chances of being kicked to death by a duck.

However, your chances of being a victim of PD increase if:

1. you have red hair
2. you are male
3. you are >60
4. you are Amish (in which case, you are probably not reading this)
5. you have a close relative with PD
6. you have suffered a head trauma at some point(s) in your life
7. you are caucasian
8. you are a junkie

There are many other weird and wild statistics, but still, I wouldn't worry about PD - unless your hand is doing a 2-step. Then, go see a doctor.

By the way, if you are a black haired, drinker and smoker, your chances of being a victim are reduced; but, then you have to worry about these little beauties: cirrhosis, emphysema and lung cancer.

Take the advice of Alfred E. Neuman..."What, me worry?"

Michael & Me

2011-08-29T09:54:00.000-07:00

Michael J. Fox stated in one of this books that his parkinson's diagnosis was the best thing that ever happened to him.

Michael, Michael, Michael! You crazy canuck you! Can that be true? I don't think you would have a lot of believers in the parky community.

Let's see.....

Stiff neck - check
slow movement - check
hand tremor - check
vibrating arm - check
malevolent leg cramps - check
dystonia - check
constipation - check

Nope, I just can't agree with you on that one. You may be my hero, but I think you are a little nuts when it comes to good things happening. For me, my diagnosis ranks right up there with the worse things that have happened to me. For me, it is like I was playing a great game of basketball when the referee called out "strike one". A touch confusing, ne c'est pas?

However, I have led a charmed existence to now (touch wood) and so a little thing like parkinson's won't get me down - but the best thing to have happened! Don't think so Mike.

Res Ipsa Loquitur

2011-08-28T05:14:00.000-07:00

In March, 1998, the area around both of my ankles and shins began to hurt and burn. My ankles and heels could not touch anything without experiencing pain. I began to sleep with my feet hanging off my bed.

The shin pain interfered with my running so I went to a sports clinic. The doctor was young and "specialized in shin problems". Unfortunately he was also one of those rare doctors who goes to school, learns a few tricks, and expects minor deification.
"Shin splints," he announced.
"I don't think so," I responded, "I have had shin splints many times and this pain is different."
"It's shin splints," he replied, his mind moving on to something else.
"Shin splints in both legs at the same time?"
"It happens." I was dismissed.

The pain was relentless and I couldn't sleep, so I decided to see the most popular doctor at the same clinic to get a diagnosis and zopiclone to help me sleep.
"Shin splints and I don't prescribe sleeping pills. I would rather deal with the cause of inability to sleep rather than giving you pills." He picked up some papers and headed for the door. "Make an appointment to see me."

I decided to try him out but his nurse said he had nothing open for 3 months. So, on to another one, at the same clinic, but this time female in hopes of getting a sympathetic hearing. She was quite caring but diagnosed me with plantar fasciitis.

"In both feet, at the same time?"

"It happens. They will heal over time and in the meantime, use these inserts. They should help the pain." She had given me a good physical, and she meant well, she was just stymied and plantar fasciitis was the only thing that came to mind. But, I had had plantar fasciitis in the past, and this was not the same.

Her inserts did not help, and I suffered over the next 12 years. I saw other doctors who took their time with me. They tried physio, cortisone shots, laser therapy (is that not just snake oil therapy?), etc, but nothing helped. Finally, my GP said I would just have to live with it. Not what I wanted to hear, but the man was honest and had given it his best shot. The pain did reduce over time and I learned to adapt.

Then, I was diagnosed with PD and prescribed mirapex. Within a week, the mysterious pain had disappeared. I have read that if a symptom reacts positively to PD medicine, you might want to see a neurologist. Was that pain my first symptom of PD?

Do I blame the doctors? I do not. Parkinson's would not have been high on my list of diseases that might have caused my condition. It probably never occurred to them.

John Lennon once said that God is a concept by which we measure our pain. I think he was right, especially when I think of all the profane phrases, containing references to the almighty, I had whispered through 12 years of suffering, when lying in bed with my feet dangling over the end.

It feels good to be pain free.

Thank you Lord!

I use to write. I used to write letters; I used to sign my name

2011-08-27T05:25:00.000-07:00

"How's your handwriting," the first neurologist asks me.

I look at him sitting there, head lowered, looking at me over the top of his glasses. "Fine," I reply. "My cursive is better than my printing."

"Really," he says. (Do I detect doubt) "Usually it is the other way around. Write, it's foggy outside," he adds with a peculiar smile. He hands me a scrap of paper.

I write and hand the paper back. "That's pretty good, but I detect a shortening at the end of the sentence. It's parkinson's."

I see no "shortening". In fact, I don't know what he means, so I choose to file it in the waste basket of my mind. Remember, "parkinson's" was only a name to me then.

Later, I was to find out that micrographia is a symptom of PD. It is small handwriting which becomes smaller as the disease progresses. Mine is still large and legible; however, upon reflection, I remember helping my son study for his exam by making flash cards out of small recipe cards. I was amazed at the difficulty I had writing on those small cards. It is hard to explain. It is like your brain is sending the correct signals, but your hand is just not receiving them in a timely fashion. Writing the word is painstaking. I must be getting old, I told myself. I switched to larger recipe cards. The problem persisted. I can remember thinking, thank God for the computer.

As time passed, I began to notice I had difficulty finishing my signature. It always started off just fine but by the end, it had become cramped and was not its usual readable self. The bank even called me about a cheque because my signature did not look like my signature.

Now, when I think of those days, I realize it was all part of my PD. I used to love to write longhand - poetry mostly - but that little joy has been stolen from me. But, there is always the computer and recently, since I started taking the mucuna pruriens, my signature is returning.

If your handwriting is getting significantly smaller and more difficult, see a good doctor.

I will end with the rest of the verse of the ARCADE FIRE song, because it seems appropriate...

I used to sleep at night
Before the flashing lights settled deep in my brain

The Brain Wars - we used to be friends

2011-08-26T05:23:00.000-07:00

I am at war with my brain. It can be a sneaky bugger. It sent the beast to me this morning just as I was in my twilight zone - not asleep but not awake either. I could feel it creeping up on me - a twitch in my right leg, just one little twitch, but it can be an omen. Then, and this time slowly, a tightening of the muscle down the side of that lower limb. But, it felt OK to my touch. Not so bad. Assume the fetal position, quick! That often works to relax the muscle.

Not this time.

Live from your embedded war correspondent........

The muscle begins to (a) twist, (b) knot, (c) go rigid, (d) all of the above, I am not sure. The only certainty is, I am not going to let it get the foot this time. Sure enough, the foot goes into spasm. The bottom of it is tender to the touch. Alright, you can have that, but it goes no further. I will try to "will" my foot to relax. My brain has other ideas. My foot begins to turn inward and upward and no amount of willing is going to stop that. I am losing the battle with my brain and the pain is becoming excruciating. Time for my only weapon. I get out of bed and stand until the foot relaxes and my leg returns to normal.

While standing there, I realize this is dystonia - involuntary muscle contractions. I wonder why, when conscious, I can't control my brain. Then I conclude, I am my brain and my brain is me. When we are at war, we are fighting ourselves. The rest of my body, that miraculous mixture of systems, whose only job is to get together and look after the brain, is being rewarded for its loyalty with pain by a screwed up brain. This treasonous activity is emanating from a part of the brain that God has either forgotten to make properly or has decided to empty out, slowly but surely.

Too much thinking, my mind goes blank and I go back to bed and turn on the TV to CNN and that Libya thing. Apparently, people are dying there and I am upset over a little dystonia.

Life is a zoo in a jungle (Peter de Vries).

"A wise man ought to realize that health is his most valuable possession."

2011-08-25T05:21:00.000-07:00

I think patients with an incurable disease should not only listen carefully to their doctor but should try any other method that might help - if it does not interfere with their doctor's treatment.

I decided to try a supplement for a couple of weeks - just to see what happens. So far, so good. I bought "DopaBean" from Solaray. It is also known as "Mucuna pruriens" and contains 15% L-dopa. I take two a day and the result is a lessening of my tremor. If feels like my hand wants to tremor but it can't and for a few hours, I am good to go. This will suffice until I go on the real L-dopa, probably next month. For now, the reduced tremor is worth the cost of the DopaBean (about $20CD) for 60 pills.

Also, if you need help, mucuna pruriens is said to increase libido in both men and women.

Steve Jobs (and/or his partner) could use some DopaBean. Here is what he had to say about sex, " My girlfriend always laughs during sex – no matter what she’s reading."

(Soup) and ships and sealing wax.

2011-08-24T06:54:00.000-07:00

Yesterday's temperature was 37 (98.6), body temperature!! We are not used to this, especially with geese in the sky and combines on the fields - fall is in the air.

I went up to my sanctum sanctorum, the cottage, to get away for the day but, even with AC gushing forth in the living room, it felt like I was living in a magma chamber in the other rooms. I turned on a fan, but noticed that the moving air actually caused a tremor to start up in my resting (right) arm where no tremor was present at that moment. What's that all about anyway? I discovered I could repair the tremor by COVERING UP!!! I looked at the thermometer in the kitchen. It was 101F. There was no way I was covering up. Chose to return to the city instead.

New things happen all the time. About a year and a half ago, I began to have trouble swallowing. Tests were done (very cool watching on a monitor some "gunk" I had ingested, slowly journey down my digestive tract and coat everything in its way). No problems found. No explanation. I chalked it up to another part of my fibromyalgia. In any event, I lost about 7 pounds as I was reduced to eating soup, bread soaked in soup, and strawberry milkshakes for about 2 weeks. Then it disappeared and hasn't crossed my doorstep since.

Now I read difficulty in swallowing is also a symptom of PD. Hope never to see that one again.

The sideshows keep swallowing up the circus!