Navigation Part II - Not Me

PD moves in mysterious ways.  No one can predict its course.  Many have tried but their answers have not impressed me.  For example, many people track PD using the 5 stages.  Not me. The stages are too scary.  I'd rather drift through the rest of my life, just taking  PD as it comes.  I don't need to know the future.

 a good  summary of the stages can be found at            https://parkinsonsdisease.net/ basic/stages

How does one navigate these waters part one

So, so many times I am asked how did you know you had parkinson's.  I only knew I was a victim when my right hand started bouncing  around on its own, but here are the signs that one should be aware of:

     1.  cramped handwriting or other writing changes.*

     2.  tremor, especially in finger, hand or foot.*

      3.  uncontrollable movements during sleep.

      4.  limb stiffness or slow movement (bradykinesia)*

      5.  voice changes.*
      6.  rigid facial expression or masking.
      7.  stooped posture.*

                                                                        * my symptoms

Let's take each of my symptoms and elaborate,

a)  Writing - while making study cards (3 by 5), I noticed that after 1 or 2 sentences, my hand would cramp and the my writing would diminish in size.  Didn't think anything of it -

b)  tremor - my whole right arm was choc-a-block with twitches and tremors.  At first only my right hand gave me grief, but that was to change.

c)  Bradykinesia -   I shuffled, moving at glacial speed, uable to heel-and-toe for more than 20m or so.  Now I was embarrassingly last to finish every meal.  I started to take smaller portions and, as a positive side-effect, Ilost weight, but I was still slower than most of my tablemates

d)  voice -  what voice!  It was all but disappearing - like that low-talker on Seinfeld.

e) posture - I resembled the Hunchback of Notre Dame without the hump

Stay tuned to how I changed my parkie ways and have remained relatively normal going into my 11h year.

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Mind Games

I continue to think, I think, that I am getting more off balance. The problem is, there are times when I exercise when I am full-on balance. Last Sunday I had a particularly bad attack, so much so that my daughter all but carried me to my car. Let us hope it was an isolated attack. Funny thing about my PD, it comes and goes. When it comes, it does so in all its fury and then it goes away and rarely returns.
examples

• Early on I would get the most awful cramps twisting my leg and causing my foot to turn inward and upward.
• I called it "the beast". The beast has gone into hibernation.
• You might recall me meeting a woman on an elevator who asked "what floor?" and when I answered, my mouth was so full of spittle, it sprayed the air, I looked and felt like a moronic child. Fortunately, this has not been repeated.
• festination is a puzzle. I have had only one incident that can be described as a classical festination. I have had had falls but no further full festinating. One doctor explained the cause and told me it would probably be the only time it happens.

Now it is a balance. Am I really balanced or do I just think I am or does the balance issue come and go like my other symptoms? I can confirm I was actually off balance last Sunday but a couple of days later, I could walk a straight line, moving toe-to-toe.

As I have said before, we blame every ache and pain on PD. It is better to seek a doctor's opinion and one of these days I will give that a try.

Is there a psychiatrist in the house?

Who cut the balls off of Louis Riel?

The following story is based on a true story.  It involves the statue of a Canadian historical figure who was tormented by outside and inside tormentors throughout his life.  Google "Louis Riel" for details. (photo below)


WHO CUT THE BALLS OFF OF LOUIS RIEL

The statue of Louis Riel looms over me in all its twisted, naked glory.  His head is too large and out of proportion with the rest of his body.  Big, blank, bronze eyes stare blindly to the north.  His hands are behind his back.  I wonder about that.  Why would they put his hands behind his back?  He is leaning forward.  His leg muscles are massive and his body is twisted and knotted into permanent steel spasms.  

A man comes up from behind.  “Somebody cut off his balls,” he says.  I look up again and sure enough, the statue’s genitals have been crudely removed.

“They must have used a hammer and chisel,” the man says.  “Cut them off cleanly.  I’ll bet they're hanging on someone’s wall.  You know, like a trophy.”  He shrugs his shoulders.  “Cut off his balls,”  he says quietly.

He is Metis, handsome, in a rugged kind of way, and well dressed.  He lays his briefcase on the bench.  He folds his arms and looks at me.  For a moment I am intimidated.  I step into the shadows of the cement wall that almost encircles the statue.   There is room inside the walls for the cement bench.   I realize Riel has been designed so that he stares out from an opening in the wall.  I sit down on the bench near the man's briefcase.  He picks it up and sits near me, placing his briefcase locked between his feet.  I am momentarily annoyed but say nothing.

“What’s that word?” the man says.” You know, that word that means to have your balls cut off?  I forget.”

“Castration,”  I say.

“That’s it,” he says.  "Somebody castrated old Louis Riel.”  He chuckles when he says this.  “Cut his balls right off.”

A teenager appears from the trees that line the river.  He turns to the trees and a young girl joins him, tucking her shirt into her denim shorts.  The man sees them and pokes me in the ribs.  “Look at that,”  he says.  The couple walk boldly up to the statue.  They stop and look at the statue, ignoring the man and me.  The girl walks forward and touches the foot.  She rubs a big toe slowly.  Her eyes move up the statue to the scar where the genitals have been removed.

“What happened to his…..ah……?  she whispers.

“Somebody cut his balls off,”  the man says.   “Castrated old Louis Riel,”  he says.  

The couple look at us.  The girl says “castrated?” like she is puzzled by what the man has said.

The boy starts to laugh.  A teenager’s laugh. “They neutered Louis Riel,” he says.

The girl smirks and the boy drops his arm over her shoulder.  She tucks her head onto his chest and they walk away.  The boy looks back, smiles, and raises his fist with his thumb up.

“Kids,”  the man says.  “You gotta love em.”  He waves to the boy,  “Now that kid has balls,”  he says. 

I snort and wipe the sweat from my forehead.  “Sure is hot!”  I say.

The man stands up and walks to the base of the statue.  He rubs the same toe rubbed by the girl.  He looks up, craning his neck to view the face.  The massive chin looms over him.  “So,” he says, “what do you think?”

I look at him.  I don’t understand the question, so I don’t answer.  He sees my problem.  “About the statue?” he says,”  What do you think about the statue?”

“it’s a great statue,” I say.

He checks me out to see if I am patronizing him.  “What’s so great about it”?  he says.

I tell him I like the way the artist has captured Riel’s torment in his blank eyes and twisted body.  He nods his head as if deep in thought.  “What about his balls?” he says.

“His balls?” I choke on the word.

“Yes,” he says.  “What about his balls?  Do you think they should replace his balls?”

I am beginning to feel uneasy.  I half-smile and look around.   Not far away, a man in a skimpy black bathing suit is kneeling on a blanket, He sees somebody and stretches his arm skyward.  His hand waves.  Not his arm.  Just his hand.  His fingers move gracefully, as if he were playing a piano, an imaginary piano high in the air.  Across the street, another man notices him and the gesture is returned.  The newcomer crosses the street.  He is carrying a shopping bag.  When he gets closer, I can see his eyebrows have been plucked.  He hugs the man on the blanket and sits down beside him.

“So,” says my companion. “Do you think they ought to make him a new set of balls?

I turn toward him and say, “I guess so.”  I return my attention to the couple on the blanket.  The newcomer is rubbing lotion on the bather’s back.  They are laughing and talking.  Bathing suit is stretched out on his stomach.  The newcomer points in our direction and says something.  Bathing suit looks and turns his head away from me and lays it on his arms.  His body is heaving with laughter.

“Why?” says my companion.  "Why should they fix him?"

I am getting annoyed.   I don’t like talking about balls. 

“Because the scar is too rough and you can see chicken wire poking out .  The statue should be bronzed again and polished all over. It is not dignified scarred like that.  It looks like it has corroded or burned or something.  The statue should be uniform in its nature.  And complete. That’s why.”  I say and I add sarcastically, “Anything else you want to know?”

The man grunts.  “The chicken wire is a distraction,” he says.  “And it is undignified.  Sort of appropriate, don’t you think?”

“Don’t know,” I say.

The man coughs and says, “will you look at those two,” he says,. nodding toward the couple on the blanket.

I look and see they are sitting side-by-side, feet stretched out in front of them.   They are obviously watching us and making remarks to each other.  One of them is drinking a beer.  They are like spectators at a hockey game.  I don’t react.  I look up at Riel’s face.  He has an enormous mustache and flowing hair.  His lips are pursed.  I drop my eyes to his chest.  Good pecs, I think.

The man follows my gaze.  “I think they should leave him ballless,” he says.  I think of that word.  I wonder if it contains three ‘l’s’  next to each other?  I decide it does.

“It seems right the way it is if you know what I mean,” the man says.

I kind of tilt my head.  I place my hand on my cheek, so that one finger, the index finger, can rub at my eye.  I am buying time.  I pull my hand across the hair at the side of my head.  “Sure is hot!” I say.

The man ignores my comment.  “I guess you don’t know,”  he says.  “Riel had no balls in his lifetime, so why should they give him a set now?”

“No disrespect intended,”  I say, “But, history will record him as a hero.  A man who stood his ground, leading to the establishment of a province.  He was very smart and very brave.”  I am settling into a good oratory.  I am on a roll.  “I know he had mental problems in later years but..........."

"Mental problems!!  You mean he went bat-shit crazy mad and they hanged him.  Not an auspicious ending, but fitting for the statue,"

The man had interrupted me, rather viciously, but I continued, quietly,  professorially.  "They should make him whole and you should see him as your man.”

“Balls!” says the man, profanely, derisively.  “He had no balls at all.  But you wouldn’t understand,” he says.  “None of you could ever understand.  You are white!  You just have no idea.” 

He has ruled out any rebuttal.  I cannot lay claim to any valid opinion because I am white.

“Look,” he says.  “I don’t mean to scare you or offend you.  You can’t understand.  It is this way.  You guys cut off his balls when he was alive and now you’ve gone and done it again.”  

“White man’s magic,” he says.  “Only a white man could castrate another man twice.”

I fall silent and look at the couple on the blanket.  They are packing up and looking at me.

The man picks up a pebble and underhands it at the statue.  “I’m sorry,” he says.  “Bad day in court.”

“ You make an assumption that it was a white man who mutilated the statue,” I say.  “It could’ve been anybody.  Anybody.”

“No,” he says.  “It was a white man.”

I don’t want to talk about balls anymore.  I stand and prepare to leave but I am blocked by the blanket couple who have quietly approached us.  The blanket sticks out of newcomer's shopping bag.

Bathing suit says, “You seem fascinated by this statue.  Did you notice his testicles are missing?  We cut them off.”  He begins to giggle.  

“Yes.” says newcomer.  We emasculated Louis Riel.  It seemed like the right thing to do.”  They both begin to laugh and they jog off,  hand-in-hand.  The shopping bag bounces against newcomer's leg, causing him to wince and to hold it away from his body.

The man looks at me as if to say I told you so.  “

Just one more thing,” he says.

“What’s that?” I say.

“Have you looked at his ass?”

“His ass?” I say.

“Yeh,” he says.  “Take a look at Louis’s ass.”

“Why?”

The man stares at me.   We are face-to-face.  I can see something roll down his cheek.  I can’t decide if it is sweat or a tear.  I can smell his cologne.

“His ass,” he says  “It is well polished.  It shines when hit by the sun and I expect by the moon.  That ass is the shiniest ass in Canada. It’s historical. Someone should cut off his ass and hang it on a wall.

I smirk and he adds, “You white guys are like pigs in lipstick. Pretty, but still just pigs.  He thinks a moment and says, “No offense intended.”

“None taken,” I say.  “I’ve heard it all before.”

The man curls his eyebrows.  "I wonder what's in that shopping bag," he says.

Note: the twisted statue gave life to Riel's torments.  Google him for more disturbing information.  This work of art was oh the grounds of the Legislature but it was removed to another location and replaced by an ordinary, run-of-the-mill politician.  LOUIS RIEL was far from ordinary.  The picture below is in the statue's new location, St. Boniface.  He was made whole before the move from the grounds of the Manitoba Legislature park.

My own discordant drum

Sadness still has a grip on me and is really only alleviated by visits by my kids (you need not do more than you are doing), and boxing. I enjoy the people there so much that for an hour 3x a week, all seems totally normal. Of course, on the way home I will suddenly realize "I am never going to see her again!" and that will happen several times a day. My brain becomes confused by the beat of a distant drum, like in old-time jungle movies, warning the explorers of future danger or maybe the drum is welcoming the newcomers. I don't know. It is all so surreal. Time will tell, and I hope it really does cure pain, but I doubt it. My brain might put a bandaid over that wound and the pain might lessen, but cured? I can't see the pain disappearing completely.

Well what now?

I have rediscovered my confidence in my physical abilities (to a point. I am not about to commit hari-kari). I will be making forages into the realm of sanity. Thank God for email and texts, friends are helping to end the loneliness but I remain trapped between the two solitudes, sanity or insanity. I know I will eventually choose sanity.

Let's assume I am sane, that the drum is friendly. I say to all you parkies out there, after 10 years of this parkie condition, I had an incident that made me realize I am limiting myself as to what I am capable of. Ask yourself, "Could I scale a six-foot wooden fence?" That was the problem I faced. I had locked myself out when I left my keys in my house. I had to find a way into the back yard. I had accidentally left the door to the deck open, but the deck was surrounded by a six-foot fence.

Fortunately, my neighbor was throwing out some old plastic chairs. I stacked them to a height of 2 feet. Using all of my strength, I managed to heave my left leg onto the fence. From there it was all downhill, easily using what strength I had left, to gently land without injury.

"Big Deal!!" I heard someone yell. For a PWP, who can't even hop, it was a huge deal. I was a poster-boy for the "can-do" public. As Vincent Van Gogh said, "If you hear a voice within you say 'you cannot paint' then by all means, paint boy paint, and that voice will be silenced".

Assuming hearing an inside voice is not a feature of your insanity side, then I say to you, we have our limitations but we should not give into them without trying. They should not control our lives.

Deaden your own drums and ....

LEAP!

The net will be there.

The spouse who came in from the cold

The mourning period is waning and I can see through the mist. Now my only problem is boredom which is something I abhor. Really, we are alive in an amazing world. There are things to see, to do, to understand. How dare we be bored! I have got to get out and check things out. Perhaps I will go to the forest, Sunday, Thursday at the latest

The Parky parade continues to haunt me. I have pain in my stiff legs and both biceps. The pain in my legs is minimal and their stiffness is more of a problem. When I wake up and head for the bathroom, I walk like an old man(hold on there, I am an old man). A round of qigong and stretching usually takes care of that. As for the biceps, my boxing comrades have convinced me that a session of pounding the heavy bag is the cause of the pain. Who am I to disagree? I am letting my arms rest and on Friday I will take a chance and return to punching.

Anyway, I can now see the light at the end of the tunnel.

Let's hope it is not a locomotive!

Gut Wrenching

gut-wrenching: informal causing great mental or emotional pain

How appropriate! It describes the death of a spouse to a "T".

The pain is starting to subside and I am ready to post my eulogy as a few have requested.

She is gone

I am happy to see such a crowd. Sharron didn't want a formal funeral. She wanted a small gathering to send her on her way. As the news of her death became public, we realized a funeral was required and so here we are to celebrate Sharron and her gentle spirit. I assure you she would have no problem with the present arrangement. Welcome to all and I thank you on her behalf.

It was inevitable that one of us should go first. I have always prayed it would be me. Now she has gone to life's next level, an afterlife that promises peace and tranquility. I believe she will be there when my turn comes and you know it won't be my heaven if she is not there waiting to take me home.

How can I explain Sharron? It is difficult because she was so complex and so much more than I had ever hoped for. I first met her when she was on a blind date with a friend of mine and I was in a fairly serious relationship with a friend of hers. I was smitten, but I don't think she was too taken with me. She refused to see me at first. EventualIy, I think she must have felt sorry for me and she finally gave me a break. We went out and the rest is history.

If you want a happy marriage, there are several important ingredients and we had them all, well or at least most of them: honesty, loyalty, compromise, fidelity, fun times and Sharron's favourite, deception for the greater good. When she had an idea, she made me think it was my idea and then she agreed with my idea, which was her idea in the first place. Deception for the greater good. I learned that very early when Sharron cooked a chicken casserole and I ate it. It was delicious. Later she told me it was a fish casserole. I HATE FISH! Deception for the greater good, or words to that effect, she explained. I had to admit it was well played.

Sharron showed me the way.  She had the best ideas, carried them through and deserves all the glory.  I was just along for the ride and what a ride it was.  We recognized we were in this for life and we shared the happiness and the sadness, and all the other sentiments  that serve to support a successful marriage.  We grew together joined by the bonds of love and we became one metaphorical person as our thoughts and our goals merged. Our marriage was a successful partnership which gave us our three children, all our blessings and many beautiful memories. I will miss her lilting laughter. And what a laughter it was, sure to make the other angels jealous, I will also miss her tears of sadness in difficult times and her unrelentable joy in our children and their children.

What greater accomplishment is there for two human souls than to understand that they are one person. To smile with each other in the good times and to minister to each other in the bad. Sharron was there through it all, a leader and advocate for the whole of the family. She was our secret weapon, a heat seeking missile when the family needed protection.

Woe betide anyone who messed with her children or grandchildren. She was a wonderful mother and wife and life is empty without her.

Part of what is keeping me alive and sane is knowing and believing that people you love never die. They don't die. Not completely. They live in your mind, the way they always have. Keep her light alive and she can still guide us boldly into the future; just like the shine of a distant star in some faraway galaxy can still guide ships to safety in unfamiliar waters.

You taught us well Sharron so please don't worry about us. We will all BE OK, just not today.

drugs drugs & more you-know-what

WINNIPEG FREE PRESS (online)

Doctors warn seniors about multiple meds Treatments for a wide variety of conditions can open the door to negative drug interactions

By: Joel Schlesinger Posted: 10/15/2019 3:00 AM

Rick Simpson needs his drugs.

His medication for Parkinson’s disease, that is.

Without taking it to boost levels of the neurotransmitter dopamine in his brain, the 67-year-old retired public servant struggles to move.

His muscles become rigid, his balance wobbly and his limbs often cold to the touch.

"Especially first thing in the morning, it takes him five minutes to get out of bed because his feet don’t move," says his wife and caregiver, Bette Palmquist, 63.

His medication is beneficial, but it is also time-sensitive.

If he misses a dose, the symptoms quickly return.

What’s more, the Parkinson’s medication, levodopa, is often taken several times daily.

So missing a dose can happen easily, particularly when the responsibility falls on patients who often experience clouded thinking, one of the illness’s common symptoms.

That’s one reason why Parkinson Canada launched a campaign called Act on Time — a resource for patients, caregivers and health-care providers to better manage medication needs.

Lorri Apps, managing director of Parkinson Canada in Manitoba, says timely doses of levodopa greatly reduce symptoms and improve quality of life.

But the campaign addresses other equally important issues, including one extending beyond patients with the illness.

And that’s the challenge of drug management, or more precisely polypharmacy — taking multiple drugs for multiple conditions. "We’ve long recognized this as an issue and spent two years developing this program so people with Parkinson’s aren’t running into issues with... contradictory medications."

This problem, however, applies to more Canadians than the approximately 55,000 who live with Parkinson’s.

A 2018 study by Canadian Institute for Health Information found two in three Canadians age 65 and older take at least five different medications, while one in four take at least 10, putting them at higher risk for negative drug interactions and other unwanted side effects.

"There’s a lot of polypharmacy going on," says Dr. Barry Campbell, medical director of the geriatric psychiatry program at St. Boniface Hospital.

"Elderly people represent about 15 percent of the population, and yet they’re taking about 30 percent of the medication."

Campbell, a geriatric psychiatrist who treats dementia patients, says many individuals he works with suffer from multiple health problems and consequently may take many different medications.

That can lead to patients and caregivers struggling to manage medications, ensuring they are taken at the right time, as well as understanding how one drug can potentially negatively affect another.

Although Campbell is quick to note prescription drugs are beneficial, as meds are layered on top of one another, doctors and patients must ask whether more is indeed better.

Jamie Falk, a clinical pharmacist and an assistant professor of clinical family medicine at the University of Manitoba, also has concerns about rising polypharmacy among seniors.

Falk is among many health-care experts who belong to the Canadian Deprescribing Network, which aims to ensure Canadians take only medications they truly need.

He notes individuals most at risk of over-medication are those with serious illnesses — such as Parkinson’s or dementia — who are often of advanced age and have other conditions treated with medications. "Part of the problem is we have different clinical practice guidelines for each condition," he says, adding these protocols are often developed "in silos."

Consequently, patients might receive a drug for Parkinson’s, which they need, along with medications to prevent heart attack and stroke, for example.

Yet science supporting preventive medication often pertains to long-term health problems, and these drugs may be less beneficial for an elderly patient facing a shorter lifespan compared with the general population, Falk says.

But the potential negative side effects from these meds — which may include dangerously low blood pressure and blood glucose — may be more concerning, he argues.

That’s because these conditions cause dizziness, which can lead to falls, and among seniors falls are the leading reason for hospitalization, according to the Canadian Deprescribing Network.

And the prognosis is often dire. As many as 30 percent of people who fracture a hip — the most common break from a fall — die within a year, the organization says.

Falling is indeed a going concern for patients of Dr. Sean Udow, co-director of the Movement Disorder Clinic, which treats Manitobans with Parkinson’s.

"People with Parkinson’s are naturally prone to low blood pressure when they stand, and if you don’t get enough blood to the brain, you faint."

Additionally, levodopa lowers blood pressure while, at the same time, patients may be taking blood pressure-lowering medications, prescribed by another doctor long before the Parkinson’s diagnosis.

Udow says eChart Manitoba helps eliminate the problem of contraindicating medications, an online database of prescribed medications for every Manitoban.

But information is limited. "All you know is the prescription has been filled."

Consequently, a discussion with patients about medications is critical, Udow says, adding he frequently deprescribes drugs treating high blood pressure for Parkinson’s patients.

He further notes much of the "quarterbacking of care" is done by family doctors, often challenged for time and resources to get the full picture of patients’ treatment plans.

Recognizing this, the health region and the province have moved toward a multidisciplinary approach for individuals with chronic illness. Over the past few years, for instance, the Winnipeg Regional Health Authority’s My Health Teams initiative has brought together family doctors, occupational therapists, nurse practitioners, social workers and specialists to provide multidisciplinary care for about 261,000 people.

Among their roles is a drug review assessing affordability, dosage and even whether to deprescribe, writes Doug Thidrickson, clinical pharmacist with My Health Team in an email to the Free Press.

Under care of a team or not, Udow and others advise patients and their families to be proactive.

"Stay informed, ask your doctors questions, bring lists of the medications... and concerns, and bring a family member or friend," he says.

Certainly, Simpson and Palmquist abide by that advice now more than ever after Simpson recently fell, broke his hip and spent many weeks in hospital.

"After he got out, his family doctor looked at his medications and canceled everything except the Parkinson’s medication," Palmquist says, adding among those prescriptions was blood pressure medication.

"She said, ‘It just gets too complicated, and you probably don’t even need this stuff anymore.’ So our life is much, much simpler nowadays."

joelschles@gmail.com

Managing medication

• Keep an undated list of prescription drugs you take as well as over-the-counter medications.
• Stick to one pharmacy; this way, a pharmacist can help you check for negative interactions.
• Don’t start a new drug alone in case of a severe allergic reaction.
• Be aware of prescription cascade, in which you might be given a new drug to treat symptoms such as stomach upset caused by another medication.

The tune of a different drummer

I once taught a young Aspergers boy, Brett. My class was at the National War Museum and a military fellow was describing warfare in the first world war. He was a good speaker and he used his voice to emphasize the dark parts of the battles and the class hung on his every word. Silence reigned in the darkened room as the presenter professionally kept 130 14-year-olds ensconced in his or her own mental version of no-man's-land.

Then the speaker described how in the darkest night the Germans, for example, would crawl across no-mans-land and kill their unsuspecting enemy. Here the speaker paused for effect but the silence and solemnity, the majesty of the moment, was broken.

"YOU MEAN THEY CHEATED!?!" Brett's innocent voice echoed off the walls of the armory.

His dignity shattered and now faced with 130 restless teenagers competing to see who could laugh the loudest, the speaker very wisely cut his presentation short and turned the rostrum over to the teachers to restore order.

What has that got to with PD?

Nothing, but....

I rolled out of bed yesterday and lying prone on the floor, I discovered that my left arm was too weak to support my efforts to get back on the bed. Too high! I realized that a stool in the living room was the correct height to enable the use of my right arm to leverage me to a standing position. I cannot tell you how I was able to get to that stool.

The arm was too weak to assume the traditional crawl but somehow, I made it and ended up with carpet burn on my forehead. I think I must have "squirmed" my way to my objective.

For some reason Brett's cheating Germans came to mind and I had to smile.

That's all. Except for a lesson learned, Get a Victoria Lifeline. I did.

Oh, I am back to "normal" (my definition).

For those in high places

I am grateful to all who turned out for the funeral during a blizzard - about 80 of you, but I would like to mention a few and why they are special to me:

• Gale M- a very special close friend who is nothing, if not absolutely loyal. Through happy times (water pistol fights) to sad times (onset of PD and, obviously today), she has always been the best.
• Cindy and Wayne in spirit. Wayne died last October. We knew each other for 56 years and were the best of friends. From a '57 Chevy, through "Mert & Toads" we managed to survive to become a teacher/principal (Wayne) and teacher/lawyer/teacher (your scribe). Cindy was Wayne's wife and good friend also, with a slightly Texas accent (my American "cousin")
• Dr. Craig- a former grade 8 student of mine who went on to become a top psychiatrist and did wonderful things for an associate of mine.
• These people who supported Sharron through the tough times and were the reason Sharron maintained a state of Grace until leaving us (if I miss some from RCC and Cross-fit forgive me): Marsha Katz & Jane Daniels - two selfless, caring people, Patricia Hadad, Gerri Weigle, Bev Bristow, Chrystal, Linda Keiback
• Gayle and Ken Pember and family - I hope you found some comfort in my eulogy
• From Mississauga, my sister and her husband & From Vancouver, my brother and his wife. We relive old memories every time we meet.

Saying "goodbye" troubles in my heart and my sanity so I will just say "jusqu'à ce que nous nous revoyions" (till we meet again).

VADE AD DEUM

When a Loss Becomes a Gain

The death of a spouse sure takes the wind out of your sails. You flounder about stopping every so often to burst into tears. It has been 2 weeks now with the funeral held on the 11th; hence, the lack of entries. I tried to raise money for boxing (a registered charity in Canada) and received some, but not enough. There is still time to donate, in memory of Sharron Jordan, at

www.uturnparkinsons.org

A ll will be explained on that website. I shall write more anon. Thanks to all who emailed their condolences, or attended the service and a special thanks to those who donated.

AtremoPlus

Snake Oil is an expression that originally referred to fraudulent health products or unproven medicine but has come to refer to any product with questionable or unverifiable quality. Perhaps you have seen the message popup on your screen: your computer has been infected with a virus. To Clean your computer all ________ or words to that effect. I know a scam. I had these questions:

• who is making this stuff
  
• why did it take so long to announce this Magnificat drug?
  
• where are the newspapers this is big stuff?

We don't need any more faith healers and snake oil salesmen. sWe need some doctors to take the bullets out.

I yam what I yam, but I yam getting better - a note about thinking positively

I have a memory of a childish joke about a crippled man, supported by his crutches, before a faith healer asking for the healer's help.

The healer places his hand on the forehead of the man before him

"Do you have faith and in my power and that of the creator," the healer crones.

"Yes preacher, I have faith in your healing power and that of my creator.""

"Well then, throw away those crutches and walk," the holy man bellows.

A silence falls over the congregation as one crutch is discarded; then, amidst a chorus of Hallelujahs rising from the believers, the man throws away his other crutch and....... falls flat on his face to the floor.

Not funny is it? I agree, but it does serve as a convenient segue into the power of positive thinking.

Lots of people with Parkinson's tell us it's helpful to look for the positives and focus on what you can do, rather than what you can't.

Yeh, not so easy is it? Being positive 24 hours a day is unreasonable and annoying. You would end up like the Cheshire cat; all smile but no substance. The brain controls your well-being both physically and mentally. I think if your brain is looking for good things to happen, your body will react accordingly,

I know, I know, it feels as if you are being fed a crock of unattainable pablum.

You are not! Studies of the effect positive thinking has on diseases indicate it can:

1. increase lifespan
2. lower the effects of depression,
3. increase self-confidence and,
4. if we are lucky, help slow the progress of PD.

Good things are coming. I know it! I believe it!I can't cite sources, but I can feel it and anyway, I read allot, so trust me and maybe you might discard your metaphorical crutches and walk boldly into the future.

So endeth this sermon.

I might a bird in a rusted cage

I have been tongue-tied for several days now. Writer's block. I just can't conjure up an appropriate topic. After 20 minutes of staring at a blank screen, I decided that a 10-year veteran of PD would have plenty of wisdom to impart to PWP, right? You would be wrong. Today, I am unable to disburse such valuable information, but I can always write about the things about PD that bug me. If you have some time (to waste?), here is a list of my complaints relating to PD so far:

1. I am sick of having to say the same thing twice. I realize it is necessary because people can't hear me, even though I think I am shouting.
2. why does my already loudness-impaired, formerly dulcet and serene sound, almost disappear when I am in large groups?
3. I know voice therapy helps; but, practicing every day is a drag.
4. why can't I smell the drosesd. In fact, why am I /nable to smell anyathing?
5. I have left the previous observation as it was typed, errors and all. Why? To illustrate a problem that makes me want to quit writing as a hobby; the problem being the rogue twitchy finger conundrum. My right hand, in particular, seems to have an affinity for the "A" and "D" buttons. They independently twitch on a key, and insert themselves into my writing; consequently, I am compelled to take time to go back to make corrections. Thus I went from a 50wpm (wothput mistakes) to about 20wpm (plenty of mistakes).
6. I am using the biggest screen for an iMac. Why then, then does Apple make such a small keyboard to go with it? Very difficult to use for a PWP.
7. I get angry at myself and my brain when I stumble through a sentence. I sound like a moron. The condition has been described as The most common language problem in Parkinson’s Disease is finding the “right” words. People with Parkinson’s Disease also tend to speak less overall (in addition to softer voice) and use simpler speech. This can be an area of frustration for both the patient and caregiver because verbal communication is such an important part of human behavior. It is frustrating, tres frustrant. Why do the words flow so swimmingly when I write, but jump ship when I speak?

I heard a joke concerning a sign that read, "FALLING ROCKS, so I tried my best moves and it doesn't." I have had several falls and have suffered bruised and bloody faces, a cracked tooth, a lost tooth and ugly, red shredded knees, elbows and hands. I am here to attest to the fact that falling never rocks!

I now have 2 speeds, slow and glacial, both were unheard of in my youth when people used to say, "slow down, it's not a race"

Finally, what's with the leg cramps just before falling asleep?!

I feel free now. Try it, a ripe, almost cathartic, recognition that these things are rudely sent to try us is good for the soul.

And, it is also a cure for writer's block.

Can you grok that?

Slip sliding away

"You should have a colonoscopy."

"What is that exactly?"

"It sounds worse than it is. We use an instrument called a colonoscope, a long, flexible, tubular instrument about 1/2-inch in diameter that transmits an image of the lining of the colon so the doctor can examine it for any abnormalities. Such as hemorrhoids, cancer.... The colonoscope is inserted through the rectum."

"Whoa! hold on there. Up my bum!"

"Yes, but you are given drugs to relax you. It doesn't hurt. You will just feel the pressure."

Hmmm, drugs. Sounds good and so I agreed.

He was right. The procedure itself was all but painless; but, the preparation! The preparation is cruel. For two full days you cannot eat.....well, you can eat jello. Hardly as an interesting substitute for a big mac. I can handle 2 days of starvation. What disturbed my well being was having to drink a concoction every 15 minutes for an hour each day. The result is your rectum allows your poop to pass like Niagara Falls.

God! It is awful.

Would I go through it again? Probably. Reluctantly. As I told my doctor, I would rather have my nose hairs trimmed by a weed wacker

I was just kidding.

One beneficial thing came as a result.

None of that good old PD constipation for a few days.

Could this be you ?

New clinic treats patients with reversible condition often mistaken for dementia
CTV National News: Parkinson's imposter

Avis Favaro , Medical Correspondent, CTV National News
Elizabeth St. Philip , CTV News @LizTV Graham Slaughter , CTVNews.ca Writer @grahamslaughter Published Sunday, July 28, 2019 10:00PM EDT

Thousands of people are being misdiagnosed with Parkinson’s disease and dementia and doctors are warning the public.

After multiple misdiagnoses, John Searle tells us how he was able to overcome normal pressure hydrocephalus. CTVNews.ca: 'We got a second chance at life'

Barbara Gaal, wife of John Searle, describes how a revolutionary medical innovation change her and her husband's life.

Thousands of Canadians who have been diagnosed with Parkinson’s disease and dementia may actually have a rare “impostor” syndrome that can be reversed with surgery, and a new clinic in Toronto is hoping to identify and treat those patients.

The condition is called normal pressure hydrocephalus, or NPH, and it comes with symptoms deceptively similar to dementia and Parkinson’s: memory impairment, a shuffling gait, difficulty standing and walking.

In some cases, patients with NPH are misdiagnosed and never receive the treatment they need – a devastating and costly oversight for the healthcare system, according to Dr. Alfonso Fasano, staff neurologist with the Movement Disorders Clinic at Toronto Western Hospital.

READ the full article. It is well worth the read.

Also worth reading is this article.

It really doesn't matter if I'm wrong, I'm right, where I belong, I'm right where I belong,

I don't know how accurate this is, but it appears to be legit and if so, I have reached stage 3 and slowly creeping into 4.

Yes, it appears logically I have traversed the line between 2 and 3 on my way to 4.

Well fuck logic. I am almost 10 years into our condition. I have slowed it down. I have worked hard with positive thinking. I have exercised and then I have exercised some more. I have kept the faith my friends and I intend to continue to do so in spite of a few little hitches along the way.

Bumps on the road, if you will.

Unfortunate incidents.

Bad Luck.

Bad luck! Nonsense.

If I had only been a touch more vigilant, I would not have suffered any hurt or indignity.

I believe I told you about falling into the metal trestle, damaging my nose. I was just not paying attention! That is stupidity, not bad luck.

This stupidity can be costly. What I didn't realize was that fall loosened one of my molars that promptly broke. After studying the filling in the missing tooth (it was more metal than enamel) the dentist informed me, "This tooth cannot be saved." and I agreed to extraction, a hard one. It took about an hour. I felt no pain at all! Whoopy! My whoopiness was muted when I saw the bill. This PD is a bottomless money pit. To avoid going broke, check the symptoms in the chart and try to deal with them. Of course, if I had looked at the within chart, I might have taken care not to fall in Stage 3.

Take heed: Sooner or later, all parkies will fall. Be prepared and don't let it get you down.

Remember you have to first fall in order to learn how to fly.

i get by with a little help from my friends

In response  to "Bloody Gravity", one reader, Graham left this comment:


Graham has left a new comment on your post "Bloody Gravity": 

The following techniques may help boost some body control by tricking the neural pathways.

Ultimate Parkinson's Tips - YouTube Playlist:
https://www.youtube.com/watch?v=q_yYS_caPFc&list=PLA6OMZ8dRKTgUHVjwALkvdwreFfuc1CkW&index=1 

IT IS WELL WORTH WATCHING

Thank you Graham

Bloody Gravity

I have come to the conclusion that I have to stop trying to defy gravity.

Why?

Because gravity always wins.

I used to love running in all seasons with summer the best time and the higher the temperature, the better. I would run for miles, actually hating every step, but loving the feeling of accomplishment. I usually ran 5 days a week for a minimum of 3 miles each day. But, then the falls started. I could trip over the smallest crack or twig. After 4 serious falls, I had to give up running. My feet dragged on the ground. I was shuffling, not running.

Well, I thought, you were the provincial champion in the indoor 1500m race walk, so do that. Ha! I could barely hold the required form for about a mile but soon tired of it and besides, try race walking in the winter! Not possible.

What to do? Forget speed, I decided. Just walk a good distance. I succeeded in doing that for more than a year but then, festination! I found myself plunging forward, involuntarily, and landing face first into whatever landscape I encountered. It only happened three times, once into a snowbank, once into a cement sidewalk and once into the middle of a busy city street (fortunately it was 4 in the morning on a Sunday, not a car in sight). A feeling of falling forward haunted my every walk and I soon threw in the towel.

Finally, I began using nordic ski poles to help keep me steady. They were great, offering a difficult exercise without fear. I still noticed my balance was deteriorating but I felt secure with the poles

I should have known it would not last. This morning I stopped using the sticks at the conclusion of the exercise, carrying them in one hand up the sidewalk to my front door. Big mistake! My forward motion surged and to stop my body (and head) from hitting the cement steps, I reached out and grabbed hold of the metallic, decorative trellis that supports the roof over the steps. My forward motion checked out and diverted it into a sideways motion, slamming my face full into the metal trellis. I knew I would be damaged and I was, cuts to the bridge of my nose and longitudinally down my nose. Not a pretty sight. What exercise can I do now?

Did someone say use a bike, fool. No can do: I cannot balance a bike.

I have had to admit to myself that the reclining bike and the treadmill are the only sane answers, to which I offer the parkie's often,nagging question, "why me"?

Why not you!

A pitiful answer that makes most of us sad. But, at least we won't get hurt and maybe the following quote will cheer up some of you. It doesn't fit into the theme of this essay, but it is worth a laugh.

Ned Flanders: “You were bicycling two abreast?”
Homer Simpson: “I wish. We were bicycling to a lake.”
The Simpsons, ‘Dangerous Curves’ (Episode 2005),

Once upon a time.....

I used to be able to                                                       Now however

1.  smell - roses, coffee, excrement, whatever               Nothing, nada, rein - get the picture?
2.  run - fast and far                                                        Nope - not into suicide!
3. walk - fast                                                                   still can walk - at glacial speed
4.  Jump                                                                          Honestly cannot - I am frozen to the ground
5.  type fast, error free                                                    Nopesd -finagers njump to wkrong kehs
6.  speak with authority                                                  No more - sound like peewee herman
7.  speak without pausing                                               I wish - now I sound like a moron


Just some of the problems I have encountered.  See what you have to look forward to?

Statistics - Russia is back!

Last 7 days

Entry
1. Russia 101
   
2. Canada 34
   
3. United Kingdom 32
   
4. United States 30
   
5. Kenya 3
   
6. South Korea 2
   
7. Portugal 2
   
8. Unknown Region 1
   
9. United Arab Emirates 1
   
10. Germany 1
    

total to date 106,700

She's a lady

I have been somebody else's coach most of my adult life, whether it be grade school teams all the way through to elite high jumpers and heptathletes. During that time I have met some good coaches from all over North America, but one the best is my current boxing coach (JC). Not because she is well known; nor has she world record achievers to brag about. In fact, that makes her an even better coach. Coaches of elite athletes find talented people and make them better, wallowing in their athlete's success and reveling in the coach's contribution. The coach becomes famous as a result of his/her athlete's success.

Remember however, the elite coaches look for athletes with the talent to become elite. They turn away those who "don't have it."

JC doesn't have that luxury.

Let me describe our Rock Steady boxing club. We are men and woman, most of whom are at or over middle age and only a few have a modicum of athletic ability. We are a regular potpourri of ordinary people who have one thing in common....we all have Parkinson's. We have read the countless online articles about PD and we have taken to heart that exercise has the effect of slowing the progress of the disease. JC is a volunteer coach with considerable knowledge of PD and the exercises needed to combat the swiftness of the progress of the disease. Everyone who takes her "classes" benefits from them. She gets no fame or fortune; she does it because she is one of those special people. I needn't say more. You know what I am talking about, a kind heart with a desire to help.

We would be lost without her.

Thank you JC.

I said slow lifting. This isn't a race!!

Sorry. That's just not possible.

It's true! I can't make this stuff up. I'm the star of this story and I wouldn't lie. Sometimes, I might embellish the truth; not often, but sometimes. But not this time. You may think that I sound ridiculous and I would have to agree with that perceived notion, except that the following is the absolute truth.

I can't jump, but I can skip rope.

Do you understand what I am saying? If I stand still and try to hop into the air.......Nothing. My brain is telling my body to jump up, even just a few millimeters, but I remain glued to the ground. There just doesn't seem to be a connection between my brain and whatever muscles I would use if I could jump. It is an odd but somewhat frightening feeling. I can no longer jump! But wait!

I can skip rope.

This is not a joke. If I use a skipping rope in my exercise regime, I am quite successful in jumping. It's true that I usually max out at 20 jumps but hey, that's 20 more than anyone else I know who is at, or near, my age. And the jump is a double jump as the rope passes over my body. (It is a great exercise by the way).

I am baffled. I have no explanation for why I can't jump but I can skip rope. If you have one, I would appreciate hearing it.

A laugh a day can help keep PD.....

People with Parkinson's can get so severely depressed that they want to kill themselves but fortunately, apathy is another key feature of the disease so.... they just can't be f@#%ing bothered!!

Humor at the expense of parkies. I love it; just as I love jokes about Canadians and lawyers. What if there were a joke about a Canadian lawyer with PD, such as:

He watched the two men, one with what appeared to be a small briefcase, deplane and shuffle across the tarmac.
"Is it him?" The rich lady asked anxiously. "Does his right-hand shake uncontrollably?"
"Yes"
"And has he brought an Uzi to kill me?"
The two men were easily visible. A big man, talking on a cell phone, bumped viciously into briefcase man.
"I am so terribly sorry," Briefcase man said to the bumper who openly slipped him the bird.
"Do you see any weapons at all?" the rich lady asked
"No ma'am. It is worse than that. He appears to have brought his Canadian lawyer.

All right, all right, so it isn't very funny, but you can see my attitude. Some of my symptoms make me laugh. Check it out.

• Why can't I smell anything? Not even a dirty diaper and yet I would need oxygen to change the baby?
• When I am standing up and I instruct my brain to make me jump, I can't get off the ground but I can skip rope easily?
• Why has my voice all but disappeared? It leads to humorous situations since my wife is hard of hearing

Laughter makes living with PD easier and have you noticed tremors stop when you have a good belly-laugh and don't reappear until some time later.

It's all part of being positive which, along with exercise, will slow the rate of advancement of PD.

Trust me. It's all good. I am about to enter my 10th year.

Sappho - She's not all Greek to me

I can't understand the rage of the haters. Those people who cannot deal with sapphic ladies. I overheard a couple of young guys disparaging a group of lesbians. The guys said nasty things that could only be heard by those nearby. The lesbians were not within their range and gleefully went on their way but I thought I should say something. I did not; after all, they were younger and far stronger than I.

I have a good friend who is a daughter of Bilitis and a more loyal and sympathetic friend you will never find. She will be reading this and to her, I apologize for not saying something to the haters but, in my own defence, I didn't sign up for a suicide mission.

Another one bites the dust

"Alright, Almighty one. Enough is enough! I sent in colon cancer screening kit and they found blood in my feces. Of course, it doesn't mean cancer. In fact, I console myself with the knowledge that PD causes me constipation and the effort to expel the "you know what" causes me great stress and blood. I think I may have hemorrhoids. One can only hope.

Did I hear God giggle?

On Being Born and Growing Older

Like you, I have no memories from my first year of life. In fact, my memories prior to age 15 are pretty tenuous and consist of a name here or there and scattered incidents, really foggy incidents in scattered places. I think the same can be said about the next 6 decades, only those names and places come to me in high definition colour, some good, some bad, but all interesting enough that I have chosen to remember them. When I think of the past, there is very little negative energy emanating from my youth.

I am in a place where I am very happy and if it were not for a serious illness that has invaded my wife, I would be very content with our family of 3 adults, their spouses, and their children. I have only missed one thing, the passage of time.

I turn 73 this month!

Gone are the days of wine and roses, the excitement of a new girlfriend, the joy of marriage, the first teaching job, my life as a teacher and so on and so on. I am proud of my stint as a student activist and the true life-long friendships of Wayne and Bill who joined me in my exploits. I miss my friends who have gone to the great unknown. I miss growing up on an army base. Yes, I am an army brat and proud of it.

Where did those days go. (not a question. No question mark required.)

In our youth, it was not within our reality to grok that we all have an expiry date. We looked forward to our birthdays, Christmas and New Years. Now, many of us are members of the golden age club,and we are faced with our mortality which, for some of us includes an attack on our brains by the devil PD. This is unfortunate because, as in my case, one feels no different than when we were in our twenties except our bodies won't comply with our brain's commands. So, on top of old age, we have a persistent brain problem. What to do? (question mark required).

I can suggest you take heed of the following to slow down the pace of PD. Trust me. I have been there, done that. At least consider the possibility I am right.

• Get yourself out of the wretched doldrums of inactivity. Science has all but proven that exercise slows the rate of advancing PD
  
• Eat nutritious meals
  
• think positively and confidently. Assume your muscles will do their assigned job, even if they don't.
• Take your meds as precribed
  
• Do not accept claims that seem too good to be true, natural remedies don't work!

We did not ask for the "disease" to continue into our declining years but it came anyway. We just have to put a little more effort into life to enjoy ourselves.

Facing eternity came as a complete surprise to me but I believe I am handling the notion well.

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

The Masque of the Headless

For a long time now I have tried simply to write the best I can. Sometimes I have good luck and write better than I can.

Ernest Hemingway

Yup. That is "the Greatest". Muhammad Ali, well into his 30 year battle with Parkinson's. This photo gives me the creeps. He wears the PD mask.

Some PLWP develop another of PD's special gifts, a mask-like expression like Ali's. This condition is called Hypomimia, which is science-speak for "that guy can't smile."

It's a fact! Some PLWP can't smile or indeed, are unable to show any facial expression.

Why is that you ask?

Well, my optometrist has informed me that eyesight is not affected by PD. She is wrong but it shows how little even some competent specialists know about PD. The disease affects the nerves controlling muscles wherever they might be found. I am told there are 43 muscles in the face. A veritable arcade for a PD feeding frenzy. The 43 muscles act together to form facial expressions. The degree to which you develop the mask depends on (I think) how many of the muscles succumb to our common enemy.

If you have followed this blog, you might remember that I had an earlier encounter with the mask. I don't remember the date of the entry, but it doesn't matter since it has never reoccurred. Not all PLWP develop the mask. I have not and, touch wood, it's not going to get me in the future but if it does, I shall wear that mask proudly.

Remembering a short walk

Parkinson's is mostly a shaking disease. Not true. There are many more symptoms. For me, when I look back, the complete loss of smell was my first symptom, followed by terrible spasms in my right leg, excessive saliva and then the nastiest, an inability to speak properly due to a word-finding problem. Now, after 9.5 years, I have suffered attacks of two of the worst PD symptoms, balance problems and stiff legs.

I went to my grandson's soccer game and when a slight wind blew in, I had to put one foot behind me to avoid being blown over. I left just before half-time and, moving at glacial speed, I walked toward my car. I was so stiff, I could only take baby steps, almost coming to a stop. I could feel the crowd watching me as I forced myself to move. I was saved when my son ran to help me. We were successful in getting to my car. I drove home and went to bed. I am certain my brain was contemplating a serious bout of distress!

How dreary!

In the near future would I be looking for a walker, or a wheelchair?

I mean no disrespect to people who currently need either appliance, but I don't want to join your ranks.

The next day I awoke full of positive energy and the incident, with its negative energy, was forgotten, assigned to my catalog of woes.

Until now that is. Why did I choose to write about this? The memory of that short walk is weakening my stiff upper lip.

I will spend the next couple of hours, trying not to remember. Happily I will move on to more beneficial thoughts......... eventually

From the book "Changeless"

“Lady Maccon stopped suddenly. Her husband got four long strides ahead before he realized she had paused. She was staring thoughtfully up into the aether, twirling the deadly parasol about her head.

"I have just remembered something," Alexia said when he returned to her side.

"Oh, that explains everything. How foolish of me to think you could walk and remember at the same time.”

― Gail Carriger

It's a long way to go.

Johns Hopkins researchers say they have developed an experimental drug, similar to compounds used to treat diabetes, that slows the progression of Parkinson's disease itself—as well as its symptoms—in mice. In experiments performed with cultures of human brain cells and live mouse models, they report the drug blocked the degradation of brain cells that is the hallmark of Parkinson's disease. The drug is expected to move to clinical trials this year. (Medical Express, July 2, 2018)

And then there is this from Irishcentral.

Inflazome has developed a drug that cures Parkinson’s in mice and now plan to start human clinical trials.

Good news? It certainly is, if you are a mouse, but what about humans? Well, I see it as a positive step forward but I have my spidey sense nagging me in the undamaged part of my brain. Only 10% of experimental drugs make it through the last stage of clinical trials. Here are the 4 stages of a clinical trial:

Human Clinical Trial Phases

Phase I studies assess the safety of a drug or device. This initial phase of testing, which can take several months to complete, usually includes a small number of healthy volunteers (20 to 100), who are generally paid for participating in the study. The study is designed to determine the effects of the drug or device on humans including how it is absorbed, metabolized, and excreted. This phase also investigates the side effects that occur as dosage levels are increased. About 70% of experimental drugs pass this phase of testing.

Phase II studies test the efficacy of a drug or device. This second phase of testing can last from several months to two years, and involves up to several hundred patients. Most phase II studies are randomized trials where one group of patients receives the experimental drug, while a second "control" group receives a standard treatment or placebo. Often these studies are "blinded" which means that neither the patients nor the researchers know who has received the experimental drug. This allows investigators to provide the pharmaceutical company and the FDA with comparative information about the relative safety and effectiveness of the new drug. About one-third of experimental drugs successfully complete both Phase I and Phase II studies

. Phase III studies involve randomized and blind testing in several hundred to several thousand patients. This large-scale testing, which can last several years, provides the pharmaceutical company and the FDA with a more thorough understanding of the effectiveness of the drug or device, the benefits and the range of possible adverse reactions. 70% to 90% of drugs that enter Phase III studies successfully complete this phase of testing. Once Phase III is complete, a pharmaceutical company can request FDA approval for marketing the drug.

Phase IV studies, often called Post Marketing Surveillance Trials, are conducted after a drug or device has been approved for consumer sale. Pharmaceutical companies have several objectives at this stage: (1) to compare a drug with other drugs already in the market; (2) to monitor a drug's long-term effectiveness and impact on a patient's quality of life; and (3) to determine the cost-effectiveness of a drug therapy relative to other traditional and new therapies. Phase IV studies can result in a drug or device being taken off the market or restrictions of use could be placed on the product depending on the findings in the study.

The problem is there no typical length of time for an experimental drug to pass through the 4 stages. It can take around 10 - 15 years before it becomes available for human use. That is a long time for somebody, like me, with one foot in the grave.

Don't give up hope. Check out new drugs being tested Parkinson's News Today Lots of research being done all for the benefit of Parkies,

Who knew?

They are forever blowing bubbles

Am I a cynic when I question whether people looking for cures for Alzheimer's, cancer, PD and the like are not highly motivated? After all, if they find a cure, they are out of a job.

Yes, that is totally cynical...or is it? Progress is being made but slowly so it is hard not to be a cynic. The "disease" has been around a long time. It was given the name "The Shaking Palsy" in 1817 by Dr. James Parkinson who fervently believed a cure was possible if not probable.

Sorry Doc. It is now 202 years later and, guess what? No cures.

However, there is highly regarded research being done and advancements are being made. Dr. Oz's prognostication that "It will be cured within 10 years" may well come true. The problem is, he said that 10 years ago! Still, I remain somewhat optimistic and here a few things I have learned:

1. Currently there is no cure and there is no magic bullet that will slow the progression of PD.
2. It seems to me that luck, exercise and diet might possibly slow its progression.
   
3. Symptoms can be controlled by recognized drugs such as Levodopa/carbidopa and various dopamine agonists. Sometimes, unexpectedly, a drug such as amantadine will make itself useful
4. DBS can also control PD symptoms, if you don't mind a neurologist messing with your brain.
5. "Control" does not mean "cure" or "slow down". PD will be ever-present, attacking and killing off dopamine-producing cells.
6. Forget about supplements. They most likely can't hurt, but they can't help either.
7. "Cures" keep popping up on the Net making outrageous claims
8. I hope this will be a possibility.... and maybe lead to a cure.

Cheer up newbies. I am into my 9th year and the only visible signs of my dark friend is the occasional loss of balance. The secret to my success is luck and exercise. Oh, a good support group helps too. I am grateful for Rock Steady Boxing. Never heard of it? Google can help.

A friend of mine once told me, “Exercise is wonderful. I could sit and watch it all day.”

I Get it. I once held the same opinion but, he is not a PLWP.

I am!