Give every man thy ear, but few thy voice

What happens when a person with a parkinson's voice has to meet with a 95 year old man who is almost blind and is hearing impaired?

I don't know; he called to postpone the meeting after I had prepared my voice to accommodate his problems.

How does a PwP prepare his voice? It is rather easy. As loud as you can, you make noises, high noises tailing off to low noises. Following the noise component, you shout sentences, or read aloud. My practise is to use a dramatic voice to recite poems that I remember, such as Poe's The Raven (first four or five verses). My favourite one, that lends itself to drama, is Buffalo Bill's Defunct by e.e. cummings. Try it the next time you are losing your voice. In a loud and dramatic tone, as if you were on stage, project the following to your imaginary audience:

Buffalo Bill's
defunct
who used to
ride a watersmooth-silver
stallion
and break onetwothreefourfive pigeonsjustlikethat

Jesus
he was a handsome man
and what i want to know is
how do you like your blueeyed boy
Mister Death

The noises, etc, cause my voice to become louder. I wonder why it is that the loss of my voice is the one symptom that has only been helped slightly by L-dopa.... I wonder.

As Charlie Brown said (I think it was Charlie) "Sometimes I lie awake at night and ask myself where have I gone wrong and then a little voice responds, "This is going to take more than one night."

Or words to that effect.

By the pricking of my thumbs, something wicked this way comes

I recall sitting in the exam hall, writing a German exam, and watching the professor as he went from student to student, standing beside each one of them and reading what they had written. Unfortunately, I am Foreign Language Challenged so as I wrote, I kept a watch on him, hoping he would not make it as far as me. The anticipation was mind-bending. Finally, he stood beside me and studied what I had written. After a couple of minutes, he bent over and whispered in my ear, "You didn't study for this exam, did you?" and off he went to the next person. I finished the exam and went back to my dorm room. I had studied. Just not enough.

And so the waiting began. Had I done so poorly that I might not have reached the double digits for a grade, or, would a miracle occur and I get a pass. The weeks went on and at first, I was outwardly blasé about the whole thing, but inside I was in turmoil. Finally, the grades arrived and there it was "German 50%" I had passed! A miracle had landed.

Parkinson's is like that. At the moment I am outwardly (and somewhat inwardly) indifferent to my condition since the drugs allow me to lead a normal life, but what of later. What is coming for me? Will I remain in stage one for as long as J of Grey cottage (18 years) or will I rapidly advance through the 4 remaining stages and wind up in a chair as helpless as the great Ali appears to be? I have already been in stage 1 for two years longer than the average, but in 5 more years? 10 more? I find myself slipping into a minor fugue state every so often, anxious about the future. Will the fates gift me another miracle? After all, I would readily accept 50% of the full five stages..

By the way, I bumped into the professor on the campus the next year and during our chat, I asked, "Did I deserve 50% on that exam?"

He responded, "No....."

"Then," I interrupted, "Why did you give it to me?"

"Why not?" he said from behind some papers that he held up over his mouth.

I think he must have been hiding a smile. We talked a few more minutes and we parted, him into academia and me to my next class, thanking the gods and thinking...OK.....Why not, indeed.

I never took German again. My rendez-vous with the German Language had come to an abrupt, but decent conclusion.

Das ist das Ende des Gleichnisses

Si vis pacem, para bellum

PWP ---- there is a war going on in our bodies which; unfortunately, we are not winning. All we can hope to do is stall the enemy before it devours all of our dopamine-producing cells. We all want peace in the valley and iff (if and only if) our bodies want peace, they must prepare for war; and so may I suggest exercising, almost daily, and eating the right foods (as I have said before I eat healthy meals- all thanks to my wife)in the hope that we can keep our bodies in dignified shape to compete in the endgame some years down the road. The endgame I foresee and predict is one in which PD is slaughtered by a CURE!

For me, So far, so good.

One of the weapons used by our enemy is a strategy of minor skirmishes over time. Symptoms appear, stop awhile, then disappear. But be rest assured, they will return.

Prior to my diagnosis, PD started its blizkrieg opening salvo by somehow constricting my throat and making it very difficult to swallow, so for 3 weeks I existed on soup and bread dipped in the soup. Swallowing these was easy but I am more of a carnivorous man by taste and, while I lost about 8 pounds, I was glad when the situation passed.

My reading found these little tidbits:

• difficulty in swallowing is called "Dysphagia".
• About 50% of PWP will experience dysphagia at some point in their journey.
• Dysphagia can be fatal. Dysphagia can cause a type of pneumonia - the result of food entering the lungs in swallowing mishaps.
• PWP are also at risk for asphyxiation or choking to death when food blocks the airways and breathing is cut off.

.

Early Warning

The health problems caused by Dysphagia can be controlled if caught early. From a professor Doctor Mahler (university of Rhode Island - neurologist) we get this account:

One of the warning signs of dysphagia is drooling, Dr. Mahler said. The natural tendency to swallow slows down in many Parkinson’s patients so they do not swallow as often as they use to, and as a consequence they tend to drool, Dr. Mahler explained. The decrease in swallowing causes a buildup of saliva in the mouth which leaks out resulting in uncontrollable, unsightly drooling that can be a major source of embarrassment, said experts at the National Parkinson Foundation (NPF). This excess saliva can also cause a buildup of phlegm in the throat.

People around PWP should be aware of drooling and other early signs such as coughing while eating, a gurgly voice as if something is stuck in the back of the throat, or just simple swallowing problems. If the victim is unaware, point it out to him/her and suggest a medical opinion. Dysphagia can be controlled by drugs, much like the other symptoms of PD if caught early.

As I mentioned, my difficulty in swallowing went away and has not returned. In the meantime, I cut my meat into smaller bite sized pieces, avoid nuts (too easy to slip into the airways during a choke)and wash down potato chips with copious amounts of water - all just in case.

Hands up all you PWP who are having fun right now.

To tell you the truth, PD doesn't bother me much and certainly does not define my life. It is a nuisance but not one that causes me any grief. I have prepared for peace by preparing for war.

PAX VOBIS.

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Are you still dreaming of the lambs, Clarice?

Most people with Parkinson's are also wont to suffer from Sleep disturbances. A Particularly curious sleep disorder is REM Sleep Disorder and its role in PD.

Sleep is made up of two major stages: Rapid Eye Movement (RM) and non Rapid Eye Movement (NREM) with the later broken up into 4 stages (5 stages of sleep in total). These 5 stages cycle over and over during one's sleep, in this pattern NREM, REM, NREM, NREM, NREM. In the REM period the brain is stimulated and dreams occur. For most people, a dream is just a dream, but for people with REM sleep disorder, the dream can become a nightmare. The nightmare can cause the victim to act out his fantasy by yelling, tossing and turning and even kicking and punching. Neither the sufferer nor the sufferer's partner are going to get a good night's sleep and going to bed can be hard on the health of both. To loosely quote Edgar A Poe: Sleep, is just a little slice of death. How I hate it

Interestingly, in my reading, I came upon this:

The first work showed in 2006 that 45% of patients who suffer this sleep disorder develop Parkinson's disease and other neurodegenerative diseases caused by a lack of dopamine in the brain. The second article discovered that neuroimaging tests that measure dopamine in the brain, such as the brain SPECT, are useful to identify patients with REM sleep disorders with increased risk of developing a neurodegenerative diseases such as Parkinson's disease.

.

So does PD cause REM sleep disorder or is REM sleep disorder just a precursor of PD or is it just another symptom of PD?

Who knows? Who cares?

I do. I care. I have read that the REM phase is the most important stage. It is the stage where the body is in a semi paralyzed state. It is the restorative stage. I never suffered from real life dreams like I now frequently have, scaring my wife, and myself, with yells and twitches. I like my REM sleep. Without it, I wake up tired and out of sorts. I have to drag myself through the day.

REM disturbance isn't he only problem for PWP, it is just one of several sleep irritants. Other nuisances include: excessive daytime sleepiness, restless leg movements, major twitches, and muscle cramps.

Add to that list, my own major complaints which include the effort to get into my bed because of its height (like scaling the Matterhorn), the inability roll over (I am stuck in my initial position for much of the night) and finally, the adventure of getting out of bed.

Oh, and I forgot, what am I supposed to do when I hear my 4:00 AM internal wakeup call. It's a silent call. Something about my condition has played havoc with my circadian rhythm. I am doomed. I am going to be awake at this ungodly hour forever. What to do? What to do? I got it! I am just going to have to turn on my bedside lamp and dive into a good book. After all, as someone once said, reading is the 3rd best thing to do in bed

It's all in your mind. The placebo effect and PD

Expensive’ placebo beats ‘cheap’ one in Parkinson’s disease:

(The Globe & Mail - Toronto) When patients with Parkinson’s disease received an injection described as an effective drug costing $1,500 a dose, their motor function improved significantly more than when they got one supposedly costing $100, scientists reported on Wednesday.

Underlining the power of expectations, the motor improvements, measured by a standard Parkinson’s assessment, occurred even though both injections contained only saline and no active ingredients The research, said an editorial in the journal Neurology, which published it, “takes the study of placebo effect to a new dimension.”

More and more studies have documented the power of placebos, in which patients experience an improvement in symptoms despite receiving sugar pills, sham surgery, or other intervention with no intrinsic therapeutic value. Placebo responses have been shown to alleviate pain, depression, and osteoarthritis, among other conditions.

That has posed challenges for drug makers, since clinical trials typically pit an experimental compound against a placebo. When placebos are powerful, actual drugs often fail to best them.

Earlier studies have shown that patients’ expectations can lead to improvements in Parkinson’s, a progressive motor disease in which the brain’s production of dopamine plummets.

As it happens, dopamine release is increased by belief, novelty, and the expectation of reward – mental states that underlie placebo effects, said neurologist Alberto Espay of the University of Cincinnati, who led the new study.

He and colleagues told 12 Parkinson’s patients they would receive shots of two formulations of equal effectiveness of the same drug, getting the second after the first wore off. One cost $100 to manufacture, they were told; the other, $1,500.

In reality, both were saline.

When patients received the “$1,500” drug first, their motor function improved two-fold compared to cheap placebo, and 28 per cent over baseline, but less than with the Parkinson’s drug levodopa.

Because the study deceived the 12 volunteers, usually a bioethics no-no, it received extra scrutiny from the review board that okays human research.

When the volunteers were debriefed, Espay said, eight said they expected the “expensive” drug to be more effective; they experienced the greatest improvement relative to the “cheap” injection. Four said they had no expectation of greater benefits, “and they showed little overall changes” in motor function, Espay said.

Ordinarily, a study with only a dozen people would not be published in a top journal. But because earlier studies, going back more than a decade, have also shown a placebo effect in Parkinson’s, the research has greater credibility, experts said.

"Reality. What a concept!" (Robin Williams)

The road is long with many a winding turn that leads us to who knows where, who knows where.

The Hollies' haunting version of "He Ain't Heavy, He's My Brother" has inspired me. We PwP are on a journey that differs for each of us and we use a pencil when we make our future plans. We belong to a club that reluctantly accepts new members and we use our experiences to help ease their fears. This is my contribution based on what I know.

• When first diagnosed, don't panic. For most, the attack on our brains, although insistent, is slow. You are not going to end up in a wheel chair next week. It took the disease 30 years to knock out the great Ali. If you are newly diagnosed, I predict a cure will happen before you become "Ali-ated".
• My diagnosis was the result of a simple test - put your hand on your lap and count backwards by 7's from 100. My hand was doing the cha cha by the time I reached two. Somehow that seemed too simple so I sought a second opinion but that second neurologist confirmed the first neuro's diagnosis. I am glad I got that second opinion. Unless your diagnosis is some how definitive, get that second opinion. Mistakes can be made.
• If, like me, you don't care if the drugs stop working properly after a few years, you would rather take them now and lead a semi normal existence while you still can, you might insist your doctor medicate you early on. I started on the dopamine agonist, mirapex (max dosage) and amantadine (anti viral which seems to inhibit a tremor) and my symptoms all but disappeared. That was 4 years ago. I added L-dopa to the cocktail last year.
• One of my symptoms held on even after I flooded my body with drugs. My voice became so soft, nobody could hear me. I took vocal lessons which worked wonders but I failed to do the required daily exercises and gradually my voice began to disappear again. My advice to the newly diagnosed, take voice therapy and keep up your practise sessions. Happily, my voice reappeared when the L-Dopa was added.
• Don't be afraid to tell people you are a sufferer. You will get different reactions, but nobody will look down on you. I can't imagine why anybody would keep it a secret.
• Exercise, exercise and then exercise some more. It won't stop PD, but it may slow it down. Read my last entry (January 30th ). It will give you some idea of what to do.
• Eat properly. My wife keeps me on that path. We have health conscious meals most days. I don't know if it helps slow the progrssion of PD, but it tastes good and the experts advise it.
• Stay away from natural remedies. The fact is there are none. I have tried several and received nothing but a big bill. The only one that might have had a positive effect was mucuna pruiens but I got no relief from it before I started on the prescription drugs.

Above all else, remain optimistic. Keep in mind that your future, however uncertain, will be built upon your actions today. That is your reality. Live with it.