I'm singing through the pain

For the past few months, I have had a pain in my left shoulder. It prevents me from lifting my elbow too high and it interferes with my boxing. Believe me, throwing a left jab is painful after 3 or 4 jabs. No amount of physio has helped. It is bothering me while I type this airing of grievances.

But wait! The pain has moved to my right shoulder in addition to the left. "Must be PD pain," I tell my wife.

You non-PWP have to realize, every ache or pain we suffer, we are quick to blame PD and get on with life. This time, however, I will be seeing a doctor next week to get his opinion.

One thing I know for sure is that PD has all but robbed me of my voice. My fault, the therapist gave me exercises to do daily. I did them each day for about a month. I should be doing them daily for the rest of my life. Not likely to happen. I have decided to try a different tactic - singing in a choir with a bunch of other PWP. They say it doesn't matter if I can't carry a tune. I hope that is the case since I have a voice that could sterilize a frog at 40 feet.

The aim of the choir is "Our goal is to provide a fun environment for those who like to sing. Our hope is that singing will prove to have therapeutic benefits in strengthening the muscles associated with speech, breathing, and swallowing, along with improving facial expressiveness.

Lofty goal, wouldn't you say. I will do my best but hereby warn all frogs to stay outside of 40-foot radius at all time lest they don't want little frogettes.

Hey, maybe vibrations produced by a choir of PWP will have a therapeutic effect on my shoulder pain. You never know with this disease.

I will keep you posted.

A different kind of light.

You have been newly diagnosed and you look into the future and you see a light at the end of the tunnel. You strain to see beyond the light. It is too murky and it seems so far away. You are scared, but you have time to study tunnels. You devour every word and you learn that tunnels can't kill you but they can create havoc in your life. It is the havoc that is frightening.

Your body takes you toward the light, stopping occasionally when a promising figment of another kind of light flickers and brightens your mood, but your optimism slowly dies. You have been in the tunnel some time when you realize the light at the end of the tunnel is a locomotive and it is coming your way. What will you do?


Ask a veteran. They too saw the locomotive's lights and they will confirm:

• PD is a progressive neurological condition of the brain. The brain is being attacked. Cells are dying. It looks like the brain is losing, and will lose, the war.
  
• In the meantime, you will have to deal with some or all of the physical and non-physical side effects brought on by the attacker's relentlessness: tremors, stiffness, muscle spasms. yada, yada, yada.
  
• The attack on each victim can be decidedly different. There is no way to predict the future, so relax and don't worry about the stage you have reached. For now, it is not the end of your world.
  
• Remember the PWP launched a counter-attack in the 50's, collimating in the discovery of L-Dopa and dopamine agonists in the 90's and later DBS. Each, in its own way, dealt with the symptoms of the enemy's attack. The victims had won some battles but the war continued.

  The question is, when will it be over?

The veteran's response is, "When we have won." Then the war will be over. The good news is, we are starting to believe that the light is a victory, not a locomotive. So quiet the urge to dwell on your problem. Positive thoughts are necessary. Well.... that, exercise and nutrition can contribute to your weapons in your battle.

Doesn't hurt that scientists at places like the MJF Foundation are looking for the atom bomb that will destroy PD forever.

“There comes a point where you no longer care if there’s a light at the end of the tunnel or not."

- Ranata Suzuki

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 I hope the blog has been useful and will continue to be of help to all you PWP

"Ze brain, Ze brain" apologies to Hervé Villechaize

The Brain, it is just a hunk of gray matter but it is more powerful and mysterious than any supercomputer. It is amazing. It is the god watching over the rest of the body. It controls all the systems; although it does have a few subalterns to take some of the burdens away from the Master. We learn more and more about the brain every year, in an effort to cure neurological problems such as our dark shadow, PD.

I recommend the book "Brain Storms, The race to unlock the mysteries of Parkinson's Disease" by Jon Palfreman. I won't go into the content of the book but, you should read it. It is somewhat uplifting and it is simply a good read by a PWP. It chronicles advancements in the treatment of PD and the search for a cure. There is much talk about, naturally, the brain, and that got me thinking about its complexity, how to keep it healthy and satisfied.

The brain can be helped to be healthy through exercise, nutrition, and thinking. It is like every muscle in the body; it works better in a healthy state To be in best shape, keeping your health requires straining the body's other less glamorous muscles with physical stimulation. The brain is different. It is royalty in the body and requires mental challenges. It might even be infallible.

Bring out the crosswords.

The brain is omniscient but is it infallible?

You can always fool the brain through positive thinking, but the oddest example of fooling the brain is the placebo effect.

Earlier in my journey, I was approved for a clinical trial to see if caffeine had a positive effect on the progress of PD. We were randomly divided into 2 groups, one taking caffeine, the other a placebo. For several weeks, until the project was brought to an end (the data showed no effects, good or bad), I was certain I was becoming less parkie,i.e., tremors at a minimum, stiffness lessened. Brain Storm details a study in which the symptoms of some participants in the placebo group showed less intensity. Each of their brains believed it was beginning down a path for a cure but like them I had fooled myself. What that says about the power of positive thinking in finding a cure for PD would make a good research project. Something like "Can we cure with placebos?" I leave the logic to you. As for me. I have a crossword to finish.

“I am a brain, Watson. The rest of me is a mere appendix.” ― Arthur Conan Doyle, The Adventure of the Mazarin Stone s

To tell or not to tell, that is the question.

You have been diagnosed. Do you keep it a secret? I guess it depends on the circumstances; for example, keep it on the down low if revealing your condition would negatively affect your profession.

On the other hand, the disease is not contagious; it does not define you, so, why keep it to your self. I told everyone I knew. I thought they might be interested. Most were not. I now leave it to the person to ask me or, I give them the address of this blog.

One of the little gifts that PD grants us is constipation. Not a pleasant subject, but a perfectly natural process that proper upper classes refuse to discuss. Well, I don't belong in the upper echelons, so here goes.

Prior to learning of PD, I suffered from "runner's diarrhea". In the months before I was diagnosed, loose bowels were often a hardship that interfered with many a race. I read about cough medicine causing constipation, so prior to every run, I dosed myself. I was that desperate! In SouthBeach I was acquainted with every public toilet from 14th Street to the hill in the park.

Once I discovered I had been blessed with PD, I ended my cough medicine regime. PD compaction was all I needed and my runs became uneventful. So for me, PD constipation is a good thing but, until now, I have kept it to myself. I have been told that my toilet habits should not be the topic du jour.

I just broke that rule. Don't tell anybody.

However, I am wont to move onto urine. I don't know about you, but it seems that in the evening, my bladder contains a copious amount of liquid waste and every time I stand, I feel the urgent need to pee. Fortunately, my bedroom is across the hall from the bathroom, so no accidents. I am certain this new condition is PD's mischief. Thank you, PD.

Now I see there is an MJF webinar on the 16th concerning urinary problems and PD. I will have to check that out.

I must arise and go now and go to the WC. Until the next time, good running.

“You hate birthdays yet pee your pants over presents. There is clearly something wrong with you,"

A beautiful Lie by Tara Sivec

Man is, by nature, a social animal. – Aristotle

It is amazing how a time machine can devour the past.

Of course, I am talking metaphorically.

The lesson for today is twofold:

1. what is a metaphorical time machine? and
2. What's that got to do with PD?

A time machine exists only in the mind of H.G. Wells. Such a device is not real...or....maybe one is, speaking metaphorically. You don't need all the fancy contraptions envisaged by Wells; all you need is patience; eventually, you, or someone you know will organize a "reunion". Go to it. You will meet older versions of older friends but you will be transported back to your youth and the ages will slip away. Behold! The creation of a time machine.

My time machine occurred this past weekend. I set my ETA for Friday, Saturday, and Sunday. Friday was a meet and greet and I met and greeted people I had not seen for decades. Saturday was a huge success. For the most part, my parkinson's took a nap, allowing me access to normality. Well, sort of. My speech was too soft and I stumbled over words, but my old friends, now in their metaphorical teens, were willing to endure my "vocal patois". Unfortunately. Sunday was a bust. My PD exhaustion won out and I slept like a baby. However, I now had proof that metaphorical time machines really can exist.

But, what do time machines have to do with PD?

All those lousy symptoms we suffer can have an isolating effect on our lives. After all, who wants to be seen in public with one or both hands shaking uncontrollably, feet dragging noticeably, back bent crookedly and voice disappearing quietly. It's embarrassing, isn't it? Thus we prefer to stay in our homes, keeping contact with the outside to a minimum. Well, check this out:

• Your symptoms are not that noticeable.
• people who socialize enjoy better physical health
• Socializing strengthens the immune system
• Your mood will improve and finally,
• Your brain will benefit. People who get out of the house and lead active social lives are less prone to dementia

Get off the couch and find or build your own time machine disguised as a reunion(s). Try it. You won't regret it.

"Interacting with other people is crucial to our well-being. Social involvement helps shape our own identity, bolsters perception of our self-worth, and enables our simultaneous involvement as an individual and as part of a collective.

.... In quantifying predictors of quality of life in patients with Parkinson disease (PD), investigators found social isolation was second only to physical mobility as a factor in predicting poorer quality of life outcomes".

UCSF Parkinson's Center. 29/9/2015

One step back; two forward, but no giant leaps - I am waiting

The rich and famous get PD too.

Neil Diamond, M.J. Fox, Janet Reno, Charles Schulz, Robin Williams, Hitler and now Alan Alda. All of them have or had Parkinson's. You can find more of their financial ilk online. PD doesn't discriminate and in spite of their millions, we all, rich and poor, have the same chance of being cured.

On bad days, I am certain that a cure is beyond researchers' abilities but, they keep making discoveries, taking baby steps in the right direction. Eventually, they will announce a cure.

But, for me, well, I may as well try to catch the wind. I will have a fistful of nothing before we are successful in ridding ourselves of our verdammt parasite. I am just too old and it takes a couple of days before eternity to get a drug to market. You younger PWP will see success at some time in the future.

PD is the fingerprint of a malevolent universe. No two fingerprints are identical and no two PWP sufferers have identical sets of symptoms. So what? Who cares? So the rich & famous also suffer from PD, that in itself offers me no consolation. I neither envy them nor am I glad to see them join the tribe. No schadenfreude in this body. Nope, in here you will just find me with loathsome PD and I am growing tired of his presence. The fact is, in the words of Benjamin Franklin, "Fish and visitors stink in 3 days".

Today, meine freunde, today, I write about Freundschaft and its effect on PWP. Everybody needs a friend whom they can rely on. I am not talking about the run-of-the-mill friendship. I am talking about friends you see 1 or 2 times in decades, but when you come together, the years melt away. You hug them, shake hands and can relive the past with ease. They recognize your limitations and help you out, and for that help we PWP are grateful, even for the small things. Even little things are welcomed such as going out of one's way to get you a glass of wine to holding a chair so you can sit comfortably. We need your help occasionally and my friends, I have had the experience. Thank you.

I wish I did not have PD. I wish I was normal again; although normal is somewhat overrated. At our age/condition, there are no normals. Just ask any person over 70 and especially one with parkinson's. .....to be continued anon.