This just gets curiouser and curiouser

This is one weird disease ("condition" is a better word). We are not sick, not by a long shot. For me, five years in and everything is copasetic. Some times (not often, mind you) you see benefits in having PD. For me, it is the dreams. They are so real and usually benign. Sometimes they are dark, but I even enjoy them. Furthermore, they are good conversation starters.

I had a dream last night. I dreamt I was in the kitchen and my wife was making cookies. I could smell them (which, of course is not possible -PD has stolen my sense of smell. But there it was - a remembered smell). I was starving but had my hand slapped away when I reached for a big one. I persisted and voila eventually overcoming her objections she gave me the best of the batch. I put it in my mouth and started chewing but there was no taste- totally bland - I tried spitting it out but failed. I had to finish the entire cookie. I got anxious and, I woke up to find an end of my pillow wet with saliva. Apparently, I had been chewing on it. My pillow was my cookie!!! Now that was a weird one. What's next?

“Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to."
"I don't much care where –"
"Then it doesn't matter which way you go.”

On riddles and Wonderland

The answer to the problem "what do you get when you cross....." is exactly the same as one of the most famous literary passages of all time. It is, of course, posed to Alice by the Mad Hatter at the equally famous tea party

“Mad Hatter: “Why is a raven like a writing-desk?”
“Have you guessed the riddle yet?” the Hatter said, turning to Alice again.
“No, I give it up,” Alice replied: “What’s the answer?”
“I haven’t the slightest idea,” said the Hatter”

I borrowed the riddle from David Foster Wallace with a few minor changes to reflect my situation.

“Mario, what do you get when you cross an insomniac, an unwilling agnostic and a dyslexic?"
"I give."
"You get someone who stays up all night torturing himself mentally over the question of whether or not there's a dog.”

― David Foster Wallace, Infinite Jest

I will bet we have all been there, done that.

F**k cancer and the cell it rode in on

About a year and half ago I made my annual visit to the optometrist. At the end of the examination she announced that I had a very small freckle on my right eyeball that I shouldn't worry but she would refer me to an opthamologist "just to make sure".

Just to make sure of what! Cataracts? Macular degeneration? Surely not the big "C" - Cancer!!!

I am way too healthy for cancer!

Flash ahead three months and I see an eye surgeon at a hospital that specializes in eye problems. That doesn't lessen my fear. I have all the eye tests, except for the important one - ultra sound. The operator has gone home for the day and the surgeon cannot find an important piece to the machine.

"Sorry" he says. "You will have to come back but in the meantime, don't worry, the freckle is very small but I will know when we get an ultra sound done to see if that sucker has grown any."

I was dismissed only to return a few weeks later when the ultra sound established a base for the size of the growth."Let's see," he said."Today is March, make an appointment to see me in November".

I forgot to do so until January of this year when I returned. In the meantime, I scoured the internet for answers and discovered eye cancer is relatively rare and what I had was probably a choroidal nevus. This didn't sound good until I learned that a choroidal nevus is a fancy word for "a freckle in the eye" and it is totally benign unless it grows. Then we would have a problem.

So there I sat, nervously answering the resident's questions and having a bright light shone through contact lenses place against my eye. The ultra sound had been done a few minutes earlier and he had the photos spread out on the desk. He was writing furiously and drawing intricate pictures on his chart. Meticulously shading in the spot of the freckle on a graphic of the eye. I sat there wondering how I would react if given the dreaded conclusion that the big "C" had taken up residence.

The resident mumbled something to the effect that he thought all was OK but he would get the specialist to check. I could hear them in the hallway and my soul was beginning to drown in self pity. I must have cancer. It was taking them too long. They sat down and the specialist wrote on the chart and turned to me and said,"OK then, it hasn't grown in the past year. Make an appointment for a year from now."

I was home free and gladly paid the $5.50 fee for parking in the the hospital parkade for less than an hour. Yes, home free, unless of course that thing grows over the next year. I don't think it will. After all, when I was young, I had a bad case of ephelides ( fancy name for "freckles") freckles all over my body, so why not on the eye?

Of course this is just a choroidal neves. I am fairly sure about that.

None of this has anything to do with PD except as an allegory. We have Parkinson's but we don't have Alzheimer's.

“Among the blind, the squinter rules"

what do you get when you cross an insomniac, a willing agnostic and a PWP?

My PD racked body has its own sense of time and comes, free of charge, with its own alarm clock. No matter what time I go to bed or take a sleeping pill; no matter how tired I am, that damn virtual alarm clock wakes me up at 4AM, plus or minus a minute or so.

For the first 4 hours, I feel bouyant and industrious and am able to do all the work that needs to be done for the day, but then, absolute, mind numbing exhaustion sweeps in and holds me hostage until around 1PM when it suddenly abdicates. My enthusiasm for life has been drained out of me, leaving only a need for a nap. At this time, I pull out my secret weapon - television. It usually puts me to sleep. I start to watch TV around 1:30 and then, in the words of Yogi Berra,"I usually take a 2 hour nap from one to four".

I think Yogi must have meant that from one to four he has intermittent naps. That's what I do. Catnaps! I start watching the idiot box, spend about 50% of the program sleeping and, luckily or perhaps, sadly, I never lose track of the plot.

Television - the great equalizer and mechanical barbiturate. It's not all bad however, for a few hours, I do feel refreshed after napping, only to encounter exhaustion again at around 8pm. I tell you, with respect to feeling alive and cognizant, PD is not a benign condition.

Enough whining. I offer you a challenge. What is the answer to the opening riddle? Think about it. The answer is quite apparent, but don't lose any sleep over it.

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Last Week

1. Russia 126

2. Canada 60

3. United States 42

4. France 39

5. United Kingdom 26

6. Poland 10

7. Portugal 5

8. India 3

9. Georgia 2

10. Brazil 1

Thanks. I appreciate your support.

Let every eye negotiate for itself and trust no agent.

I think I may have mentioned it before, my eyes are dry. "Dry" is not the right word. "Arid", "Desert like" and "bone dry" are more appropriate. I squirt artificial tears into my eyes a few times a day. I darn near drown trying to get those drops in the eye. I get them every where else on my face easily but I do find being accurate formidable.

I asked my optometrist if PD could affect my eyes. Her answer was a definite "NO". My neurologist didn't think so. I found a few reliable sites that opined differently. Here is a list of the possible effects PD has on eyesight:

• Blurred vision or difficulty in focusing may be due to difficulty in moving the eyes or due to the side effects of Parkinson’s drug therapy, especially anticholinergics.

• Double vision usually occurs in Parkinson’s disease due to problems in moving the eyes in alignment from side to side, such as when reading. This occurs as a result of impaired coordination and fatigue of the muscles moving the eyeballs.

• Excessive tearing (lachrymation) of the eyes.

• Dry eyes is caused by reduced blinking of the eyes.

• Difficulty in moving the eyes may be manifested in two ways :
  

  (i) difficulty in starting a movement of the eyes or
  (ii) problem with moving the eyes quickly when following a fast moving object. Instead of moving smoothly, the eyes move in a slow and jerky way. Driving a vehicle may pose difficulties.

• Sensitivity to contrast – there may be difficulty in seeing in dim light, or making out light colored objects against a light background, or difficulty in reading fine print.

• Color vision may be affected for differentiating between slight color differences, especially for shades of blue or blue-green.

• Problem with visuo-spatial orientation or depth perception – the person may have difficulty in assessing the distance between objects and may need to reach out to touch the sides of the wall or objects while walking through a narrow place. This may create problems while walking or driving.

• Glaucoma and anti-Parkinson’s medication – levodopa and anticholinergics should be used with caution in patients with glaucoma.

• Some patients with Parkinson’s disease cannot judge the speed of moving objects, which may be dangerous if driving or trying to cross the street.

• Hallucinations and illusions or visual misinterpretations are more likely to occur in those people who have had Parkinson’s disease for a long time. It may be due to the disease itself or due to anti-Parkinson drugs.

• Blepharospasm or involuntary spasm of the eyelids

Pretty scary, isn't it?

As far as those artificial tears are concerned, I must be patient and calm and improve on my technique. I consider myself lucky. When I get those fake tears into my eye then alles ist gut. I would hate to suffer from one of the other symptoms. I am lucky in so many aspects of the disease. So lucky I may have to become a follower of the Third Eye folks.

So be it.

Header is a quote from "Much Ado About Nothing" by William S and no, I haven't read it. I found the quote on the net.

The Charge of the Night Brigade

There in the valley below me dwell my girlfriend's people. They are gentle farmers permanently bent from the hours of picking strawberries. I have never met them and their faces have no recognizable features. They are blurred, like the faces of crime suspects on the realty shows. All is peaceful but from the far end of the valley I can see a dust storm caused by horses riding fast. I take out my binoculars, bring the dust storm into focus and say to my betrothed "Prussians! and they are well armed!" As they close in on the farmers, they begin to fire, expertly picking their targets off.

"We have to do something," my companion screams.

I have only my father's ceremonial sword. A sword against guns! It will have to do. I dig my spurs into the horse. He rises on his hind legs and away we go. We outrun the wind. I am leaning forward with the reins in my left hand and my sword in my right, swinging menacingly,"Faster! Faster!" Both the horse and I are breathing hard, grunting and snorting and still I cry "Faster! Fas.."

"Doug,Doug, wake up, wake up." My wife is shaking me.

"Huh?"

"You were having a dream and bouncing around like you were riding a horse."

"I was."

"What?"

"In my dream, I was riding a horse. How did you know?"

"You had both hands in front of you, as if holding reins. Your legs were bent at the knees and you were bouncing and breathing 'whosh, whosh' now go bck to sleep"

It was of those dreams, vivid, virtual reality dreams. Read on:

Sleep disorders are very common in patients with Parkinson’s disease including hallucinations, vivid dreams, violent movements during sleep and restless leg syndrome.

Vivid dreams in Parkinson's Disease are quite common. They may be accompanied by yelling or thrashing about during sleep. If this is occurring, it may represent a condition called REM-sleep Behavior Disorder.

REM sleep occurs in brief spurts of increased activity in the brain and is considered as dreaming stage of sleep. In REM sleep, eyes move rapidly beneath the eyelids. Dreaming mostly occurs during REM and the body is essentially paralyzed to avoid the acting out of dreams.

Rapid eye movement behavioral disorder is characterized by the acting out of violent dreams during REM sleep. Sometimes the person with RBD will shout during an episode. Sometimes it will be violent that bed partners will be injured.(WebMD and others)

RBD!!!!!Sounds bad, but it isn't, yet. Not all dreams are nightmares and for those that are not, their high-def, virtual reality aspect makes them most enjoyable. It is like time travel. In my dream, my rush with my sword swinging in large circles above my head, caused the Prussians to turn tail and run, just as my wife woke me up. I tried to get back into the dream but as you know that is not possible. I was no longer a hero, just an ordinary PWP. My fairly mundane life was back. Maybe I will never be a hero in reality but hey, I can always dream, can't I?

Parkinson's and Passion

You thought I was going to talk about that, you know, other kind of passion. Sorry folks, I am going to talk about how passion (I told you, not that kind) affects my symptoms.

Let me start off by assuring you the symptoms of my PD, as far as shaking goes, are not noticeable. The drugs are very effective at keeping them at bay. That's good. Right! Of course it is good, except for the times when it isn't, like when my passion gets out of control and the drugs retreat and my body starts the hippy, hippy shake.

Still not talking about the good passion - male/female passion, if you know what I mean. I am talking about the Winnipeg Jets of the National Hockey League, a team for which I am very passionate. I mope when they lose and get pessimistic when they win (in this arena, I think optimism is a delusion). So far this season, they are sitting around the 500 mark.

Last night, my pessimism was put to the test. The other team scored 59 seconds into the game."I knew it!" I wailed, "Another loss coming up". My pointing finger started to jump. I sat anxiously through the first period, but the score remained 1-0 after the first 20 minutes and my pessimism had a firm hold on my PD. My right hand was trembling. I grabbed the remote. Holding something tightly always seems to help calm the tremor. Finally, in the second period, the Jets began to score - 3 goals and I was elated. But, with elation came enhancement of my predicament. The muscles in my lower right arm were starting to "fire" in sequence, creating a sort of ripple effect.

The third period commenced and the other team started scoring. This was getting ridiculous, my right arm was at full ripple. I had to put my right hand under my pillow, trapping the shaking. Three minutes left to play. I could feel it in my left hand. I should try to avoid the ending by watching something else. I switched channels. That didn't work. Back to the contest. They score with 13 seconds left in the game to tie it up. I am like a bowl of jelly on a jack hammer. Fortunately the Jets scored 59 seconds into overtime to win the game and within 2 or 3 minutes, the drugs took their rightful place and my body came to a rest.. All was good, but I wondered why it went bonkers over a hockey game!

Passion did it. That fan kind of passion got me going. The other kind of good passion gets me ........ well....never mind. It's none of your business.

I throw out the question. In all cases can "passion" be just another word for "stress". I had to look it up and found the following:

We all know that living a stressful lifestyle can take its toll, making us age faster and making us more susceptible to the cold going around the office. The same appears to be true of neurons in the brain. According to a new Northwestern Medicine study published Nov. 10 in the journal Nature, dopamine-releasing neurons in a region of the brain called the substantia nigra lead a lifestyle that requires lots of energy, creating stress that could lead to the neurons' premature death. Their death causes Parkinson's disease. "Why this small group of neurons dies in Parkinson's disease is the core question we struggled with," says lead author D. James Surmeier, the Nathan Smith Davis Professor and chair of physiology at Northwestern University Feinberg School of Medicine. "Our research provides a potential answer by showing this small group of neurons uses a metabolically expensive strategy to do its job. This 'lifestyle' choice stresses the neurons' mitochondria and elevates the production of superoxide and free radicals -- molecules closely linked to aging, cellular dysfunction and death."

The lesson here is enjoy the hockey game. It is just a game as we are often told. Who knows? The Jets might go on to win the Stanley Cup. They might not, but who really cares? The corollary to this try to avoid stress, avoid passion, avoid distress, avoid being a PWP, avoid dwelling on the future. It will all work out. In the words of our leader MJF:

There is a rule in acting called, “Don’t play the result.” If you have a character who’s going to end up in a certain place, don’t play that until you get there. Play each scene and each beat as it comes. And that is what you do in life. You don’t play the result. Michael J. Fox

Here is the pessimist's anthem, just for the heck of it. "Another day older and deeper in debt" (Tennessee Ernie Ford)

The rest is yet to come

I don't know what is wrong with me, I pretty much feel normal. No shakes. No nightmares. "Hallucinations" on hold. No depression. etc. etc. It is like I don't have PD at all. I know I do and the pills are keeping it under control, but 5 years after diagnosis, I should not be feeling like this. Oh, I have had my ups and downs, particularly pre-medication but today, I feel normal.

I am not quite so optimistic about the future. As someone once noted "the optimist is just a person who is foolish enough to believe the best is yet to come".

All of us in the PD tribe know that is not true.

But for today, I feel good. I feel.....well....... normal

Stats for last week

1. Canada 68
   
2. United States 47
   
3. United Kingdom 34
   
4. Poland 7
   
5. Russia 4
   
6. Germany 3
   
7. India 2
   
8. Australia 1
   
9. France 1
   
10. Hong Kong 1

Total page views to date 44,555. Thanks to each of you for reading.