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Friday 30 December 2011

May the gods divert the omens.

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.

Tuesday 27 December 2011

Life is just a bowl of pits

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.

Sunday 25 December 2011

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

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.

Saturday 24 December 2011

Obsession is a negative passion.

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.

Tuesday 20 December 2011

Listen to many, speak to a few.

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.

Monday 19 December 2011

Every head has its own headache

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."

Thursday 15 December 2011

Do the Hokey Pokey

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!

Monday 12 December 2011

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

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.

Friday 9 December 2011

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

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

Tuesday 6 December 2011

I respectfully decline the invitation to join your hallucination

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.

Friday 2 December 2011

The Tremor Conspiracy

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.

Thursday 1 December 2011

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

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!

Wednesday 30 November 2011

Gimme a break...

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!

Tuesday 29 November 2011

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

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.

Monday 28 November 2011

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

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.

Friday 25 November 2011

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

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.

Monday 21 November 2011

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

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!!

Sunday 20 November 2011

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

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

Thursday 17 November 2011

Interesting, Uplifting, Article

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.”

Wednesday 16 November 2011

Some observations are dubious

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!

Sunday 13 November 2011

Say hello to my little friend

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.

Saturday 12 November 2011

All progress is precarious

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!

Thursday 10 November 2011

Music hath charms to soothe the savage beast

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.

Wednesday 9 November 2011

A mystery, mixed with fear

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.

Tuesday 8 November 2011

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

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

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.

Saturday 5 November 2011

Defacing a face

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.

Friday 4 November 2011

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

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!

Thursday 3 November 2011

Only the good die young

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.

Wednesday 2 November 2011

Life is so unlike theory.

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.

Sunday 30 October 2011

In Vino Veritas

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.

Thursday 27 October 2011

The fog comes on little cat feet

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.

Wednesday 26 October 2011

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

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.

Sunday 23 October 2011

Football & that old parkie feeling

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.

Wednesday 19 October 2011

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

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".

Sunday 16 October 2011

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

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)

Friday 14 October 2011

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

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.....

Wednesday 12 October 2011

I've a grand memory for forgetting.

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!

Tuesday 11 October 2011

Good news, bad news

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.

Monday 10 October 2011

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

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)

Saturday 8 October 2011

I may need an exorcist. Anyone seen Father Karras?

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.

Friday 7 October 2011

No news is good news

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.

Thursday 6 October 2011

Something Old, Something New

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.

Wednesday 5 October 2011

Walk Don't Run and the danger of yawning

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.

Tuesday 4 October 2011

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

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.

Monday 3 October 2011

Don’t underestimate the value of irony

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.

Sunday 2 October 2011

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

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.

Saturday 1 October 2011

The Good, The Bad & The Ugly of PD

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.

Friday 30 September 2011

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

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.

Thursday 29 September 2011

I am unhappy with my neck

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.

Wednesday 28 September 2011

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

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."

Tuesday 27 September 2011

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

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!

Monday 26 September 2011

Spit and be silent

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

Sunday 25 September 2011

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

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.”

Saturday 24 September 2011

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

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.

Friday 23 September 2011

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

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.

Thursday 22 September 2011

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

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.

Wednesday 21 September 2011

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

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.

Tuesday 20 September 2011

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

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.

Sunday 18 September 2011

Strikes and gutter balls

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.

Friday 16 September 2011

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

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.

Thursday 15 September 2011

Lend me your ears.

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.

Wednesday 14 September 2011

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

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.

Tuesday 13 September 2011

The days of whine and roses.....

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.


Monday 12 September 2011

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

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.

Sunday 11 September 2011

The sounds of silence

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.

Friday 9 September 2011

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

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.

Thursday 8 September 2011

A Subtle Drive-by Complaint

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.

Wednesday 7 September 2011

The Vulcan Mind Meld

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

Tuesday 6 September 2011

God is a Comedian but his audience is afraid to laugh

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?

Monday 5 September 2011

Two and A Half Good Days

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.

Sunday 4 September 2011

Micrographia - I've got to admit its getting smaller

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)



Saturday 3 September 2011

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

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."

Friday 2 September 2011

Spousal Support

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!

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

Thursday 1 September 2011

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

"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)

Wednesday 31 August 2011

To him who is in fear, everything rustles

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.

Tuesday 30 August 2011

Karate Duck

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?"

Monday 29 August 2011

Michael & Me

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.

Sunday 28 August 2011

Res Ipsa Loquitur

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!