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Wednesday 30 November 2016

Step right up folks, I have liquid happiness in this little bottle

Let's face it we are sitting ducks for a confidence man. We tend to look twice at the newest claim about treating PD and wonder if there is any truth to it. Are we in danger of becoming marks to someone we trust, who has gained our confidence, who is selling snake oil like those frauds at old time fairs?

The truth is, we will try anything.

There is another approach, get the facts folks, nothing but the facts, before shovelling out your savings for the latest book or the latest remedy. Ask yourself questions or seek answers from others - you know veterns of PD's assault on our bodies. Try these out, for example:

  1. Ask yourself, Does it seem too good to be true? If it does, it probably is too good to be true, just another con on a vulnerable audience .
  2. I look to who did the research? I am contented with the content/claims in an advertisement, if an medical expert in the field, or a drug researcher, wrote the book or discovered the medication.
  3. I am sceptical about claims of cures or treatment made by chiropractors who are obsessed with spinal manipulation. (Sorry practitioners, just part of my philosophy)
  4. How much does it cost? If it seems to be too much, don't buy it. In fact, don't buy anything that makes grand announcements about PD.
  5. I get very wary if an advertisement contains the words, "all natural", "cure", "buy one and we will send you a second free" "free delivery", and "virtually". Words like these tingle my spidy sense; they are designed to lure me into making a purchase.
  6. Finally, anything advertised on social media I avoid. That's easy for me as I rarely go beyond Facebook.

In the words of Arron B. Powell

“Sometimes we want to believe something so badly that we allow ourselves to be taken advantage of.”

Initially, post diagnosis, I would try anything. I spent a fortune on Coenzyme Q10, which might have been good for something, but not for PD. I ate fava bean soup by the gallons and got nothing in return. I put on several pounds by chowing down on chocolate bars (said to be helpful at a Minimum 75% cacao). I tried Mucuna Pruriens (an herb that actually does contain dopamine)to no positive effect. Finally I gave up with natural remedies and turned to exercise and a cocktail of parkinson's drugs prescribed by my neurologist. The drugs have taken dominion over my symptoms and I hope the exercise is slowing its progress. I am entering my 7th year since a murderer of some kind decided my dopamine producing brain cells should be wasted and still nobody who sees me knows I have PD and are genuinely surprised when I tell them.

My advice is to avoid any natural remedy. Regular exercise and nutrition are all that is necessary and follow your neuro's advice if it is different than mine.

Next blog will deal with AtraMorine, the newest miracle drug...sure!

Thursday 24 November 2016

We are not alone.

"I discovered that I was part of a Parkinson's community with similar experiences and similar questions that I'd been dealing with alone." (MJF)

Keep the faith fellow PWP, you are not alone. Parkinson's is global wide.

It is a small consolation knowing victims of parkinson's can be found in every country. But, the more sufferers, the more likely someone, somewhere will find a cure (I don't know the logic in that statement, but it helps me somewhat).

Currently, more than 10,000,000 worldwide have been introduced to PD. There must be a common denominator among us. Look at these statistics. What is going on? There has to be a reason for their existence. Find the cause, find the cure.

In the meantime we wait. As John Glenn remarked "There is still no cure for the common birthday." Unfortunately, some of us may be like Poor Otis, dead and gone before the scientists answer my question

  • Albania has the highest rate of PD at 800 per 100,000
  • Egypt comes in a distant second at 557 per 100,000
  • Nebraska, with a score of 329 per 100,000, has the highest rate in North America
  • Ethiopia has the lowest rate at 7 per 100,000
  • Over 100,000 Canadians live with the condition with about 6,600 new PWP diagnosed annually
  • In the UK, 127,000 are victims
  • The USA has at least 500,000 people suffering from our dark passenger
  • Native americans have a high rate at 355 per 100,000
To sum up, here is a graph of the prevalence of PD in various countries. You can find it online (I forget where) and it might be clearer. The predictions are somewhat disturbing.







 


Sunday 20 November 2016

PD - Unwelcome, yet welcome

Alzheimer's is the gradual eroding of imagination and intellect.  I know, because I watched my father's brain wither slowly away until it was only when there were flashes of memory that he knew who I was.  These flashes grew weaker and weaker but I think he recognized me, if only for a second, a few days before his death.  He was  a brave man.  He knew he had alzheimer's yet he walked boldly into his future.  Will I stroll boldly into mine?

PD and Alzheimers are both degenerative neurologic conditions, but they are different.  With PD, I stand a 75 -80% chance of dying a semi-dignified death with my brain intact, though my body be beaten.  There was no such dignity to my father's death.  He died with his body in the shape of a typical 86 year old but his brain was fried.  

I wonder if PD will turn into Alzheimers.  I dunno, but I think not.  They affect 2 different areas of the brain.

From what I have read, PD involves the substantia nigra, that part of the brain that affects movement; Alzheimers involves the hippocampus and the entorhinal cortex, that part of the brain that controls intellect and memory.  Someday, I might not be able to walk, but I will still be able to think and remember.  My father could walk fairly well (the walk of a 86 year old man), but he could no longer think.  Nope, his memory was kaput.

All things considered, if I had to choose, I would rather have PD.

I guess it might be possible for PD and Alzheimer's to co-exist, but I don't want to think about that.

In fact, I am through thinking for today.  The hockey game is on TV at 4pm and I plan to "veg out" until that time.

                 "It occurred to me that at one point it was like I had two diseases - 
                  one was Alzheimer's, and the other was knowing I had Alzheimer's." 
                  (Terry Pratchett)

Saturday 19 November 2016

Statistics - pushing 59,000

Statistics for past 7 days total to date 58,911.  Thanks to all.

Canada
92
United States
57
United Kingdom
23
India
12
France
10
Switzerland
3
Spain
3
Portugal
3
Australia
2
Ecuador
2

Friday 18 November 2016

We can slip the surley bonds of PD

Did I ever think I might get a degenerative neurological problem? Not at all. It came as quite an unpleasant surprise. Do I think I will lose my ability to walk? Nope.

The plane! The Plane!

I like flying, particularly when I get a chance to go business class (about 5 times in total) but it can have its moments and if you have read earlier posts, you will know about at least one annoying trip but, here is another that occurred around 20 years ago and should have scared the bejeezus out of me. I am trying here to create a metaphor for my fight with PD. To make it easier for me, I will write in the present tense.

We are on a plane flying to Houston. I am a track coach and along with another couple of coaches, we are taking around 20 athletes to Texas to train and compete. We are looking forward to the heat (-10C to +25C in 4/5 hours). I am sitting and quietly looking out the window at this huge city. We will land shortly. I see a small two seater heading toward the plane. I think it will hit us. Just at the last minute, the pilot veers away. I can see his face, sort of. He is shaking his head.

"Geez," I say to the coach next to me, "I thought he was going to hit us."

We change places so he can look out the window. Across the aisle is a young female athlete (I think she is 16). I look past her and, in her window, I see another small plane, maybe the same one, fly close to us. A few minutes pass and finally our pilot announces something to the fact that a light on the dashboard (or whatever it is called in a plane) had led the crew to believe that the nose gear had not come down.

"We just had a flyby and that small plane you might have noticed has confirmed that the gear has come down but not all the way. It is in a kind of "bent knee" configuration and could collapse when we hit the runway. Just to be safe, the cabin staff will show you the crash position and I will tell you when to assume it, just to be safe." his voice showed no fear. He was kind of matter of fact about the problem.

Just to be safe! We could crash and be dead in a couple of minutes. I try getting into the crash position but I am too stiff to assume anything. I look across the aisle to the young girl who is practising the proper position. She sees me sitting up.

"Has this ever happened to you?" she asks, the fear flaring in her eyes."

"Once before. Don't worry it will be all right," I answer.

She seems to relax, but keeps the position. The cabin crew announces we are about to land and everyone should be in the "position". The chatter in the cabin gives way to silence as the plane starts to fall. I am sitting up and I can see firetrucks heading toward us as we hit the runway. I think they will prove to be useless if we catch on fire. We stop quickly, some distance from the terminal. The nose gear holds and after the ground crew does something to that now infamous gear, we go on our way. We are safe. Funny thing is, as we leave the plane, the young athlete asks the female flight attendant if this has happened to her before. "Not in 30 years!". She smiles at me and we say goodbye.

So, where is the metaphor?

Alone in my hotel room I thought about why I was so calm during the event. I had sat straight the whole time. I came to 2 conclusions

  1. Bad things don't happen to me.
  2. when they do happen, I handle them.
I realized that throughout the ordeal, my brain had simply told my body that everything would be alright and, if not, I would never realize it because I would have been dead.

Get my metaphor? OK, OK, forget about the "dead" part. I don't think about bad things. As I look to my future, I know everything will be alright.

Tuesday 15 November 2016

A populist dream

Another virtual reality dream last night but I can only remember one scene.

I was in bed and Donald Trump was sitting on the edge of my window well?????

He assured me that up to now his speeches were all just bluster designed to win the election. He promised that now that he has won, he would be all presidential.

That's all. I forget the rest of the dream. I didn't know I had such interest in the election of a USA commander-in-chief. I thought (hoped?) Hillary would win but, if I were an American citizen, I think I would give DT a second chance.

Barack Obama said it best:

If the people cannot trust their government to do the job for which it exists - to protect them and to promote their common welfare - all else is lost.

Yup. I would give him that second chance to be presidential. After all, he promised me.

The "window well" might have something to do with my psychology. It must be a metaphor for something.

Maybe I need a shrink.

Monday 14 November 2016

Not by the hair of my chinny chin chin

I am feeling old. When I am trying to make a point (vocally), often times my chin will tremble and my teeth chatter as if I were in the initial stages of hypothermia. Naturally, it can be embarrassing. Combined with my word finding problems, this chin dance makes discourse even harder. It doesn't happen all the time, just when I am attempting to be socratic. It is very annoying.

I think both of parents, my dad in his 80's, my mother in her 90's, had some form of chin shaking and tremors in their hands. Maybe it was parkinson's but I doubt it. If anything, they might have had essential tremor.

Essential tremor is the most common form of tremor. It can affect the hands, arms, head, and voice. It mimics parkinson's in that it doesn't affect life expectancy, and can affect fine motor skills and ability to swallow. It is often misdiagnosed as parkinson's.

Here are some differences/similarities between the two conditions.

  • parkinson's is a resting tremor. Essential tremor appears when there is purposeful movement. My parent's trembled when, for example, they lifted a glass to their mouth. The tremor did not appear when their hand was at rest.
  • You have seen the head nodders. Head nodding is associated with ET and not with PD. Usually only the chin is affected in PD, not the entire head.
  • In ET, the tremor is more likely to be apparent on both sides of the body early in its onset; while in PD, it usually starts on one side and progresses over time to include both sides.
  • The tremor of ET is faster than that of PD.
  • PD includes several symptoms that we know so well. ET has only one symptom - tremor.
There are other differences/similarities but who wants to dwell on them!

When first diagnosed, my doctor asked if either of my parents had tremors. I replied, "You know, only the kind that really old people get." He looked at me askance, with a droll little smile. He said nothing, but I knew I had said something silly.

Apparently people don't shake just because they have got old. There has to be a reason for their condition, usually PD or ET.

Who knew? I thought all old people got the shakes; after all, that had been my experience.

I just thought about something. I had better conclude this entry. I don't want to upset my siblings who I know read this new age missal. They don't know my diagnosis about our parents' problem. Now they know. Relax siblings; less than 7% (if that) of PWP seem to be the victims of heredity. It is not all in your genes. You probably just did not run through the mosquito killing DDT clouds as often as I did.

I have run out of things to say except, avoid clouds of DDT.

Monday 7 November 2016

Life and Death as a person with parkinson's

CNN's website reported "Janet Reno dies after a long battle with parkinson's".  Makes it sound like PD killed her, does it not?  If that was CNN's intent, they were wrong.

You die with Parkinson's disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson's patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. (MJF foundation)

It is a tiny detail and I might be the subject of scorn; but, it matters to me. I don't want to live with an acquired terminal disease. You know, knowing you have no chance. I can live knowing there is (for me) the slight possibility that in 15 years I won't be in great shape due to PD but I don't think so. I plan to die an ordinary death, made ordinary by keeping my mind and body well exercised during my journey.

Consider the following concerning life expectancy for PWP.

Oct. 4, 2010 -- Parkinson’s disease is not considered fatal, but people with Parkinson’s have a shorter life expectancy than the general population.

Now new research provides clues as to why some patients die sooner than others.

Researchers in Denmark closely followed the disease progression of more than 200 patients diagnosed with Parkinson’s.

They found that being diagnosed later in life, scoring poorly on movement tests, experiencing psychotic symptoms, and developing dementia were all associated with a shorter life expectancy.

And men with Parkinson’s were more likely to die early than women. Figures! Any way, it goes on:
“There was a remarkable variability in time to death, ranging from 2 to 37 years after (motor symptoms began),” the researchers write in the October issue of the journal Neurology. “Our findings suggest that early prevention of motor progression, psychotic symptoms, and dementia might be the most promising strategies to increase life expectancy in Parkinson’s disease.(WebMD”)
The study also calculated the average age of death to be 81. Contrast that with the Stats Canada report that the average life expectancy, in Canada, of men in 2002 was 77 and women 82 and by 2013 they project those averages will increase to 81.9 and 86 respectively. We PWP are not out of line on average.

Quality of life in the final years is what makes us different. The key to keeping as healthy a life as possible is exercise, as you may have noticed is of special interest to me. I'm guessing I will die in my mid 80's, an ordinary death and not from PD.

Predicting my own death - that's rather morbid. Yes it is, but the joke is on me. Think about Mother Nature's truth....... all life is a terminal disease.

I will just have to live with that.

Sunday 6 November 2016

Last week's statistics


Poland

234
Canada
90
United States
37
United Kingdom
30
Spain
12
Australia
9
France
7
Germany
3
India
3
Portugal
3

Thank you Poland.  I hope you become (a) regular reader(s)

Friday 4 November 2016

Defying Gravity

While travelling with my younger son, the topic of my future came up and I opined that I might lose all control of my body, but I was going to try hard to stay healthy.

"I will be there for you, I promise," he said.

To say I was choked up would be an understatement.

Over the next few days I began to see the possibility of that bleak future but I have rejected it outright.  I will be one of the lucky ones.  I will defy expectations and PD will advance slowly.  I might hit stage four, but I doubt it.  I will probably be dead before that unthinkable outcome And, if I do get into four and five, I will have support.

What stage am I at now?  Good question.  Every victim is different, so I can't count on the averages of the amount of time spent in each stage set out below.  I can only guess at my own position.

Here is a summary of what I know of the condition. I go over it occasionally to see how I am doing.

Early Stage Parkinson’s  (stage one perhaps)

  • ----Movement problems are noticeable to the victim but he/she can handle them.  They can be inconvenient and sometimes embarrassing but do not present an obstacle to daily living.
  • For example, my movement problems first presented on the right side of my body as a tremor in my right hand and impossible contortions of my right leg and foot that left me aghast at the pain brought on by hideous and sustained cramps.  A condition known as dystonia (see 2011 posts).  
  • ----Parkinson's drugs work well to suppress these symptoms completely - if you remember to take them regularly, something that is easily missed, to one's detriment, for which I can vouch.
  • ----Regular exercise helps suppress the symptoms and is believed to be the one thing that can slow the progression of the disease.  If you are a long time reader, you will know all about my exercise regime and are probably sick of hearing about it. I won't burden you with it until a later date.
Early Moderate Parkinson’s  (stages two and three maybe)

          ----Oh, no! Movement problems appear on the other side of the body.   I can sometimes feel
          them as a tremor in my left hand, but they are insignifican



            ----Oh, oh!  Movement problems appear on the other side of the body.  I can sometimes feel them as  a tremor in my left hand; but, they are so insignificant that I cannot say for certain I have darkened the door step of stage two.  The thing is, the drugs are so efficient at keeping my  symptoms at bay that I might be on the porch.

  •     ----Movements slow down.  Aye, there's the rub.  My body move movements are the speed of the tortoise.              
  •     ----First signs of lack of co-ordination appear.  I have to admit, I am having slight problems with balance but PD does not yet affect my daily routines.
  •      ----They tell me that“Freezing” episodes may occur in the later part of these stages.  Kind of an interesting condition, but not one I wish to experience.  Or, maybe I do.  I am just not sure.
  •      ----You may encounter "wearing off" of the drugs in your cycle - i.e., the drugs are not as effective and their protective duties are weakened before you take your next pill.
  •      ----Some PWP will develop dyskinesia from the use of drugs.  Dyskinesia is involuntary movements sure to cause problems.  It is important to note that not all victims will be subject to this annoying facet.
My Situation Today
  • I think that after approximately 7 years post DX, I must be in the early part of stage 2.
  • Right now I could live independently without any problems and I think I will probably remain in stages 2 and 3 for awhile.
Advanced Parkinson’s (stages 4 and 5, no doubt)
  • ----A PWP cannot lead an independent life.  The body may have deteriorated to the point of requiring a wheel chair.  Assistance will be required toward the end of stage 4 and into 5.
  • ----This is when real hallucinations occur, as opposed to my nano second, early morning visions.  
  • ----About 20% of PWP will develop cognitive problems.
  • ----Medication will be less effective and side effects will become more prominent.
  • Sounds pretty devastating, doesn't it?  Check out this study at www.viartis.net/parkinsons.disease/news/100312.htm, a study that concluded that while lengths of time in each stage are not predictable, the average time spent by their subjects in the study was:
  •      1.   stage one to two = 1 year 8 months
  •      2.   stage two to three = 7 years 3 months
  •      3.   stage three to four= 2 years
  •      4.    stage four to five = 2 years 2 months
  • The writer hastens to add,"Progression is not inevitable.  Some people with PD have either:  stayed the same for decades, reduced their symptoms, rid their symptoms, or worsened at a rapid rate."
  • Let's all plan to defy the "worsened at a rapid rate" portion and vow to stay the same for decades.  
  • Positive thinking is a required treatment.  I think I have written about positive thinking in earlier posts.  If not, I shall burden myself on you down the road.
  • Say with me:  "I'm through with playing by the rules of someone else's game." and get on with life without the dark cloud of despair hanging over our heads.
  • Before I forget, "Everyone deserves a chance to fly."
  • Got it? 
  • Yes?
  • Then lecture completed.

Tuesday 1 November 2016

"J'ai steef"

I was at a track meet in Quebec City some 20 years ago, and I heard a young female athlete moan to her friends, "J'ai steef" (I am pretty sure she meant "stiff").  Frenglish? or is "steef" part of the French-Canadian language now?

But I digress.  Pour moi, je suis raide (or maybe "rigide".  I am not sure which is correct.)

Yup, I am"raide" all over.  Perhaps you are too, especially if you have PD. I have read that stiffness is another curse sent to us by our pesky condition.

Getting out of bed after a night's sleep, or what slightly resembles a sleep, is a chore.  Legs don't bend that easily.  From the bed to the toilet, I am a perfect Frankenstein.  You know, stiff arms, stiff legs.  After less than a minute, I reach the point where I can bend my limbs.  So what now?  I do some stretching, followed by 30 - 60 minute workout.  Et voila!  Movement becomes easier - an easier stiffness.

Foxfeed did an article with recommendations to help ease PD stiffness.  The following is a summation:

1.  Move - don't stay in one place too long.  I ignore this because I am at my computer for hours on end and guess what?  J'ai steef!

2.  Develop and maintain an exercise regime.  I did and do.  I credit it with slowing the advancement of my PD.

3.  Have a hot bath to relax your muscles.  I do this almost daily and almost daily, I fall asleep in the tub.  It does help relieve some stiffness; but, one caution.  Don't try to read a book.  You may never learn what happens in the end.  I speak from experience.

4.  Try weight lifting - not sure if that doesn't add to the stiffness, but I do it anyway as part of my exercise plan.

5.  Try Yoga - I will do so as soon as it has been reliably ascertained that hell has frozen over.  Those yoga contortions are impossible.  I am sure yoga is beneficial, but I can't do it.  Just not in the ballpark.

Maybe if I could do yoga, my circumstances would change but until then, or until I do at least 4 of the 5 regularly, the following will be my history and my future:

 I was steef, I still am steef and I will be steef until I am a steef.