Reality Show Fatigue

I detest reality shows. I find them to be trivial and downright boring. So, I don't watch them. I admit to watching the first couple of seasons of Survivor and American Idol but totally lost interest. Anyway, I read in today's paper that the winner of The Amazing Race Canada has parkinson's. He is only 48 years old, but $500,000.00 richer. He was diagnosed about the same time as I was - 3 years ago. It's good to hear that one of the tribe is succeeding at holding his own against PD while beating non-parky contestants.

The article also contained some good news/bad news. I will give you the bad news first.

"A jerky gait, tremors, ticks and a paralysis-like stiffening of joints eventually renders sufferers unable to walk or eat".

Are you trying to cheer me up? Sure the inability to walk or eat might be the end game but, most of us will be dead before we lose those abilities and in the meantime, current or developing drugs will let us have a decent life. PD took out Ali after 25 to 30 years and I plan to die within 20 years (I am 67), so I fret more about all the technology I am going to miss (when I become a part of the ether) than I do about not being able to feed myself. So lose the negativity lady reporter.

However, the reporter also reported some good news, "Patients who do 3 hours a week of cardiovascular exercise for a year can expect to score 30% better on a medical scale that measures the severity of Parkinson's symptoms compared with sedentary patients...". Well, I've got that one covered so I am good to go.

We just don't know who is going to deteriorate quickly or who is hardly going to notice the condition. That is the reality.

But,as Albert Einstein said:Reality is merely an illusion, albeit a very persistent one.

Watch Michael J. Fox tonight while you do your treadmill workout.

A Horse is a Horse of Course of Course....

Some days my symptoms disappear completely and I engage myself in a quiet conversation that the 3 neurologists, who diagnosed me, must have been wrong.

I don't have parkinson's at all.

Must be something else.

Like what?

I don't know. Maybe essential tremor.

I don't think so

Well it could be something else. Maybe the strain of a workout gets me jiggy

Right!

Then something else might happen that brings me back to reality. For example, as I have said before, stress brings out the symptoms. Last night I watched the pilot of "Blacklist" and the final of "Dexter". Talk about stress! Those two programs had my right hand jumping around like one of those Mexican beans. Uncontrollable - And I was loaded with medication at the time too.

My silent conversation continues.

Your hand is lying on the bed doing nothing and a TV show can make it tremble.

What's your point?

Can't be essential tremor because your hand has to be doing something in that condition in order to tremble.

OK, OK. You've made your point. It's PD.

What's interesting is the background music during such surrealistic confabs is always the same:

A horse is a horse of course of course
And no one can talk to a horse of course
Unless of course .......

I think you know what I am talking about. If you were alive during the golden age of television, you can finish that little jewel of a theme song yourself.

There is no doubt. I have parkinsons! I got it straight from the horse's mouth.

Stats for last week:

1. United States 102
2. Canada 51
3. United Kingdom 28
4. Ukraine 13
5. China 8
6. Poland 3
7. Bangladesh 2
8. Latvia 2
9. Denmark 1
10. Ireland 1

Total page views to date ---- 17,000!

The Fine Print Taketh Away!!!!

I went to see my neurologist a couple of days ago. The appointment lasted about 15 minutes as I explained the negative milestones in my life with PD. He asked if I felt a need to increase my dosage of mirapex. I felt no such need. He smiled and as I was rising to go he said "You are doing very well. Most people your age and stage do not do this well. I think it is because you are fit. You look good and are doing well." With that little gem ringing in my ears, I left. Back home, I told my wife and she remarked that it was "... good news, isn't it?" I replied in the affirmative but (and with this disease there is always a "but") my brain was telling me to read the fine print that I am trying to ignore:

Parkinson's disease is a disease of the nervous system that gets worse over time.

When Birnam Wood comes to Dunsinane

I spent 3 days at the cottage, mostly sleeping and reading; went for my usual walk each day - in the dark. At the end of my walk, I habitually pick up the morning newspapers at the corner store. Today was no different. The clerk asked me "Did you go for your usual walk?"

"Yes"

"It is so dark now and so cold"

"Yes, but it doesn't bother me. I do it on the coldest days of January." (Ever the macho man)

"In the city?"

"Yes"

Arn't you scared?"

I had to chuckle. Why do rural people think the city is a dangerous place? I have never been scared - nervous once - but that was a result of my own biases.

It is the same thing with my undesirable partnership with PD. Granted, it is a formidable foe but I am not scared, just a little nervous. There are sites that predict a dire future, but there are PWP who have put up with the disease for a couple of decades and are still leading productive lives and I choose to think positively and can even envision a cure. But in the back of my mind I can sense the forest trees starting to move toward me.

Forget it pal. This is not Dunsinane and I refuse to suffer any thing near the fate of Macbeth! Onward and Upward ....... I think.

Round 2 The Sequel

After a careful analysis of my injuries my guru (my wife) and I have concluded that festination was not the cause of my fall. Oh, it was caused by PD, just not the festination problem. Our thinking process was as follows:

• the sorest part of my lower body is the big toe of my right foot
• the majority of damage is to the left side of my body
• the back of my left hand is a conspicuous mess, as is the left side of my face.
• PwP tend to shuffle, even when running
• the right side of my body is most affected by PD which tends to cause the right leg not to work as well as the left
• As usual when I run, I daydream
• I was daydreaming

Ergo my right foot is the culprit. In a shuffle, my right toe hit the pavement and as my left leg completed the step, my right foot dragged, sending me into an uncontrollable fall. I can distinctly recall the last moment before I hit. I was passing over my left leg and trying to get my head onto the grass to the left of me. My left arm braced for impact and buckled under me, damaging the back of my hand. I was unsuccessful in reaching the grass. No festination, just a part of the old PD Gait.

Case closed.

Prepare for round 3

In Round 3, I will come out swinging. As Muhammad Ali once said "If you even dream of beating me you'd better wake up and apologize."

Here are some examples of the PD gait which develops over time. Not every person with PD will have all or even some of them.

• Difficulty or slowness to start walking as a result of developing bradykinesia.
• Shortened stride.
• Bending forwards while walking, with rapid, small, shuffling steps and a tendency to run (festination). Festination may only develop at later stages of the disease and becomes more pronounced as the disease progresses. So, I have only suffered the symptom one time last winter and maybe the doctor will be right and I will never encounter it again.
• Stiff, flexed posture is due to rigidity or increased muscular tone.
• Tendency to stoop and lean forward while walking.
• Difficulty in maintaining balance on turning is due to impaired postural righting reflexes.
• Reduced arm swing while walking, especially on the side where Parkinson’s is more pronounced.
• Tendency to fall, due to poor balance, may develop at a later stage of Parkinson’s disease.
• Freezing – inability to move or start walking or stopping in mid-step, as if frozen on the spot (‘statue’).

Round 2 - down for an 8 count

FESTINATION Definition: Bending forwards while walking, with rapid, small, shuffling steps and a tendency to run.

Notice there is no mention of the fact you get going so quickly, your chest gets lower and lower and your steps get shorter and shorter until eventually you slam into the ground and there is nothing you can do about it. You might recall from an earlier post that it happened to me last winter. My resulting face plant was into a pile of snow. No harm done. One of the doctors remarked that it might never happen again.

Well, it did happen again........ this morning. I was running at about 6AM when I began to go down. I was on the sidewalk and tried my best, as I was falling, to get my head onto the grass. Grass is softer than pavement. No such luck. I hit the cement with the left side of my body and for a second, I wondered if I was going to black out. I didn't. I got up and walked home. Fortunately, there was nobody around to witness this spectacle, or the blood seeping out of the damage to my body. My left hand was shredded, and I had significant cuts, scrapes and bruising to my knees, right hand, left arm and shoulder. But, the PD saved the best for the last, the left side of my face introduced itself to the sidewalk and was thoroughly damaged. And it hurts, boy does it hurt. There is swelling just under the eye that is going to result in a colorful shiner and my chin is scrapped to the extent that I couldn't shave there.

I may never run again. As a doctor once told me ten years ago, when I complained of pain in my legs, "Running is contraindicated". That didn't stop me then, but this incident will probably make me carefully examine the pros and cons of running versus walking. We'll see what happens. A flaw in my character is that I am a bad loser and I can't take this set back like a gentleman. I may HAVE to run again.

Or maybe I will just stay in bed. Sleeping people can't fall down.

'Ave a look at this then, as a friend in England used to say.

Parkinson's, dinosaurs and other stuff.

SOME EARLY SIGNS AND SYMPTOMS OF PARKINSON'S

• Change in facial expression (staring, lack of blinking)
• Failure to swing one arm when walking
• Flexion (stooped) posture
• "Frozen" painful shoulder
• Limping or dragging of one leg
• Numbness, tingling, achiness or discomfort of the neck or limbs
• Softness of the voice
• Subjective sensation of internal trembling
• Resting tremor

Source: Signs and Symptoms | University of Maryland Medical Center http://umm.edu/programs/parkinsons/health/symptoms#ixzz2e1szfqUC University of Maryland Medical Center

To these, I will add one more:

• frequent bouts of foot cramping.

These are early signs, as the disease progresses, the symptoms become more pronounced and one or more of the following symptoms will become more disruptive:

• Tremor
• Rigidity
• Akinesia (lack of movement or loss of spontaneous movement)
• Bradykinesia (slowness of movement)
• Problems with walking and posture.

More about Parkinson's

• In the 1600's, some people felt that eating earthworms could help resolve parkinson's issues
• Japanese women are more likely to develop parkinson's than are Japanese men.
• I believe heredity plays a role. Both of my parents began to shake as they got older. Literature says that heredity only increases one's chance of developing the disease and doesn't mean it is inevitable. The fact is, science just doesn't know.
• Lastly, it is thought dinosaurs may have been victims of the disease, scientists call it "Jurassic Parkinson's"

Ouch! Just kidding about the dinosaurs.

TRUMPED!

On Saturday I ran 1.8 miles before my lungs tried to jump out of my throat to find a less hostile environment. My intention is to step it up to 2 miles this week so, today I began that mission. I actually planned to try to complete it today, allowing the trumpets in my mind to herald a new beginning. Unfortunately, it was not to be.

Remember "festination"? Also known as "Parkinson's gait"? Here is a litle reminder:

Festination is an alteration in gait pattern characterized by a quickening and shortening of normal strides.

If you have read my earlier entries, you might remember I suffered a bout of festination last winter. I got strange feeling, as if I was being pulled forward. I began moving faster with my steps getting shorter, my head bowing lower, until I ended up face first in the snow. Today, as I was running, I began to get that feeling about a half mile into my run so I stopped and walked. I stood straight, forced my feet to fall - heel first then toe, swung my arms and took longer steps and it worked! The feeling went away but by then I was at a 7-11 so I stopped and bought a newspaper and walked home reading. I had beaten PD. Another pyrrhic victory for me. But PD had prevented me from completing my mission. Another defeat.

Hell.... I will just call the entire battle a wash.