WHOA! Russia and the USA help to exceed 90,000

December 29 Total now 90,305 page views





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WH0 IS SO DARN FUNNY?

BIG DADDY TAZZ, THAT'S  WHO!

Support PWP.  We need it, literally and figuratively.  A cure is just a shot away and boxing is a method of slowing down the progress of PD until we find the knockout punch - just ask any PWP at the gym.

U-Turn Parkinson's,  the organization that sponsors the Parkinson's program where I box is, unfortunately, growing as the Parkinson's tribe expands, and it needs your help, so join us for a chuckle or two with Big Daddy Tazz and help to delay, delay, delay, the progress of our dark parasite.

Tickets available at.....TBA

Statistics

	Mon	Tues	Wed	Thur	Fri	Sat	Sun	Total	Avg
Pageloads	17	40	17	11	22	26	12	145	21
Unique Visits	14	11	14	11	18	12	8	88	13
First Time Visits	4	5	5	1	6	2	2	25	4
Returning Visits	10	6	9	10	12	10	6	63	9

ABOVE  Dec 17 - 24

BELOW  top 10 in last 7 days Dec 20 -27  total now 89,467

Canada 70 United States 55 United Kingdom 25 Australia 13 Argentina 4 France 3 Spain 2 India 2 Paraguay 2 Germany 1

Do not go gently into that dark night

I got bad news today. An acquaintance of mine died from complications due to PD and Parkinson's Dementia. He was hit hard, right from the beginning several years ago. Every man's death diminishes me, but especially the loss of the active, athletic man I knew in our younger days.

Reliable reports I have read state that 20% of PWP will suffer from dementia. Not bad odds. I have decided I will be among the 80% who don't have, and won't get, dementia.

There is Parkinson's dementia and then there is Lewy body dementia which is related to PD. Lewy bodies! That is PD on steroids. Avoid at all costs.

Parkinson's with Lewy bodies (probably the cause of Robin William's losing battle) differ from Parkinson's dementia. Lewy body dementia is usually diagnosed when the victim is first defined as a PWP, while Parkinson's dementia will be the diagnosis after the PWP has suffered from Parkinson's for several years (although it can show itself in as little as a year after PD symptoms arise.) To put it more succinctly, with Lewy body Parkinson's, the PD symptoms arise after dementia shows up, while with Parkinson's dementia, the PD symptoms arise before the dementia is diagnosed.

Personally, I don't deal with the future much, except to acknowledge the possibility that I might go into the blackness of dementia sometime down the road.

But my brain immediately rules out any talk of dementia. Don't be ridiculous! I tell myself. It will never happen. I mean, after 7 years, nobody notices I have PD, especially if I don't talk. The only other way PD has hit me is that it has made life more difficult. I can live with that. It is true that I move at glacial speed but my mind, well I think I am still quite _______ (you fill in the adjective).

Maybe I am delusional

But clouds got in my way

It was sad and depressing. I got depressed.

"The National" had a feature on a woman who, a decade ago, was diagnosed with PD. Now she was bedridden, in pain and tired of living. She found a doctor willing to assist her in helping her to die and he did and so did she. I can't begin to imagine what she was going through. I am not sure I would even have the courage to follow her path.

My fear is that I will have to make the same decision someday.

"The National" concluded and I went to bed feeling sad and a little afraid. That feature was an ink blot on what so far had been a calm and positive journey. While lying there, thinking, unable to sleep, I realized that poor woman was only one story out of hundreds of thousands. Some, if not most, PWP never get to that stage on the PD ladder and some, if not most, lead a semi-normal life and die with dignity when their time comes.

Television tends toward the spectacular, the most extreme stories. You might recall the old saying: if a dog bites a man, that is of no interest to all but the victim, but if a man bites dog, that becomes a headline on TV news. We live in a frightened society. We fear irrational dangers. We can't help it. Television is full of violent death, robbery and mayham. The vast majority of people will go through life safely without biting a dog. The story of the poor lady who sought, and received, doctor assisted suicide was sensational, worthy of telling. It scared me, but then I realized, I am not going to have to make that decision. I began to think rationally. PD is a designer disease and no two cases are exactly the same. Some PWP may have to make the choice, but I brushed away any thoughts of such an outcome and gradually, peacefully fell into a deep sleep unhindered by ink blots.

I awoke full of energy, believing in a cure. I knew I would never have to choose an unnatural death. I worked out for about an hour and happily pulled my granddaughter in her sled to school. As they say, I don't fear death, I fear not being alive.

I choose life.

Let me make myself perfectly clear

I received the following comment (since removed) on the entry "A word to the wise from people who know":

I have been diagnosed with Parkinson's disease even though I don't have the DaTscan until may 22. I was being tested for multiple sclerosis and have been displaying symptoms for around 3 years, shaking, twitching, rigidity, neck pain and anxiety. I am a 61 year old female. I started falling a lot when losing my balance and had a hard time walking normal,for the past few years my life hasn't remain the same,i almost spent all my money on medical treatment not until i found totalcureherbalfoundation@gmail.com online who helped me get rid of this deadliest disease,i then started using a Total cure herbal foundation herbal remedies.i start to use their herbal formula which was the best i ever had,i used this herbal remedies for weeks and i can proudly say i fully cure of Parkinson (PD) disease. totalcureherbalfoundation@gmail.com

Sounds genuine, doesn't it?

It is not.

Once and for all, repeat after me, "AT THIS MOMENT, THERE IS NO CURE FOR PD!" Don't be taken in by claims of a cure. It is pure "snake oil". The world will know when the cure is found. The shouts of joy from those of us in the PD tribe will be deafening.

They call me the newlife gambler

The quandary: When should I start medication? Opinions vary. Some say start immediately to enjoy the time you have left; others say wait as long as you can because the lepodopa might cause possible side effects, most notably dyskinesia.

In my case, the first neuro told me he would not give me medication yet. He said I should wait until it affected my work. "If you were a watch maker or other occupation that involved intricate movements, I would give it to you now."

To which I responded, "But I don't enjoy it when my hand is jumping around all the time."

He would not budge and I, .....being as sharp as a bowling ball at the time,... I meekly acquiesced.

Some time later, I decided to get a new neurologist. This time, after explaining the risks to me, he prescribed the agonist mirapex and an antiviral drug called amantadine. My tremor was gone 2 days later and I decided to stay with the medication and risk the troubles that I thought would haunt my future.

One of the knocks against levodopa is that after continued usage and higher dosages, it can cause dyskinesia. I have no sign of it yet, but I have sentries on the lookout for its appearance. Odds are it won't affect me. I ain't afraid of no dyskinesia. But, let's take a closer look. From M.J. Fox Foundation

Dyskinesia is an abnormal, uncontrolled, involuntary movement. It can affect one body part, such as an arm, leg or the head, or it can spread over the entire body. Dyskinesia can look like fidgeting, writhing, wriggling, head bobbing or body swaying. It doesn't happen in everyone with Parkinson's, and in those who do have it, it occurs to different degrees of severity. In some people, dyskinesia may be painful or bothersome to the point that it interferes with exercise, social life or other daily activities. Many people, though, say they prefer having dyskinesia to being rigid or less mobile due to Parkinson's. Dyskinesia tends to occur most often during times when other Parkinson's symptoms, such as tremor, slowness and stiffness, are well controlled. (This is what doctors and researchers call "on" with dyskinesia.) Stress or excitement can exacerbate dyskinesia.

I don't like any of those options. At the moment I am OK and I know I am more fortunate than most PWP. My symptoms appear to be under control. I wish the drugs that have taken me through 7 years would work for all PWP; but, because PD is a designer condition, what works for one person, may not help others at all. My cocktail worked. When diagnosed (65), I still considered myself to be young and I wanted my quality of life to continue as long as possible and to date, any of my symptoms can be classified under the heading, "nuisance"

You and your doctor will have to make a decision as to what drugs you need and when to take them.

So far, it has been 7 years post diagnosis and although I have had to make adjustments, I am still cruising along, somewhat oblivious to any changes to my body and wishing for the day when I will not have to go war with my blankets when I get out of bed each morning.

We will call that day the "CURE"and it is not far off.

"I was the Elvis of boxing" (Muhammad Ali)

Boxing! Who knew it would be beneficial for me?  It has been very beneficial for me....but why? How can I claim to be  the Aged Elvis of Boxing*. For explanation, let me burden you with my situation.  I had never boxed in my pre PD days, so I was a complete, somewhat sceptical neophyte.  I quickly got into the sport.  I am learning a) boxing is not a primitive sport.  It is slow, with rather unexpectedly fast moments.  It is simply a difficult, complicated, intricate dance b)  the people taking the class are a welcoming, encouraging group and I enjoy their company, more so, since it is a non-contact version of pugulism c) boxing is beneficial for any person with PD.  

What makes hitting a bag good for PwP, you ask?

Here is the theory; to which I am a believer. Any form of exercise that is brand new to you, (such as boxing is for me and for probably nearly all PwP,)  challenges your brain, forcing it to adapt to the new stress put upon it.  New pathways and connections are created leading to an active brain, a "dynamic" brain if you will.  PwP should keep their brains as dynamic as possible.   You can keep it  dynamic by imposing new things on it.  Regular exercise, and in particular, new sports such as boxing,  keep the brain active and has been shown to slow down the progress of the "disease".

In Winnipeg, "Rock Steady" boxing operates under the auspices of "U-Turn Parkinson's".  If you are a PWP, do yourself a favour, visit their website at http://www.uturnparkinsons.org or call them at

Phone: (204) 510-4869.  You won't regret it.

*I can claim that title because nobody else has claimed it!

statistics

top ten page views from last week

1. Canada 90
   
2. United Kingdom 42
   
3. United States 36
   
4. South Korea 22
   
5. Germany 11
   
6. Australia 5
   
7. Ireland 4
   
8. Spain 3
   
9. India 3
   
10. Portugal 2

Total page views to date 89,161

For the race of my head and my face is moving much faster

My PD is progressing; after 7 years that comes as no surprise. Physically, I am probably in better shape than I think I am. I keep testing myself, my balance, to be precise. Every morning my balance both physically and mentally varies, but for the most part, I am OK. Last week, I had a few problems but today, I did 15 pushups on an inverted bosu ball.

So, what is going on in my head? Is the dopamine leaching out of my brain? More likely, less and less is being produced. I am so stiff in the morning, I have trouble getting out of bed, but still, I believe my attitude is positive. What is the alternative, to go negative and give in to the devil? That, my friends, is not an option. No, every new day brings new determination and illumination.

I shall live until I die.

On the upside, I apparently do not look my age, still. Starting from my first year in college, people would be aghast at my youthful visage. I had to show my ID when going into pubs, etc, 90% of the time. Now, when I look in the mirror, I see an old follically-challenged stranger haunting the glass. There is nobody else in the room, so the stranger must be me.

Just a couple of days ago, a fellow boxer said, "You sure don't look 70. I never would have guessed."

I appreciated the remark.

"Appreciated"...... Hell, I loved the compliment. May I remain faux young until I have one foot on the platform; the other foot on the train. You know, that metaphorical train that will take me on my journey to the other side. Until that day, I shall use all of my weapons to keep the devil away. I shall delight in boxing, gi gong and regular exercise while waiting patiently for that elusive cure which waits for us out there.

Colour me confident.

mea culpa

I keep missing comments and therefore, I don't respond when I would like to. Sorry. I have had 88,650 page views. It keeps me busy, but keep your comments coming. I enjoy reading them.

Will my lucky little star really shine, really shine?

I seem to have recovered somewhat. My balance has improved. I know this because I test myself each morning and anyway, I feel better walking. I feel lucky again. It was time for some kind of luck, preferably not bad; although, when you think about it, does "bad luck" really exist at all. A person is either lucky or unlucky. Bad luck is simply a lack of luck.

So endith the philisophical portion of this lecture.

Sorry, I just thought of more. Maybe people create luck when they plan for it. For example, I am trying to do everything in my power to keep my PD under control. If I succeed, I will deserve the sobriquet, "lucky guy". I am feeling lucky and plan to stay that way.

As you might be aware, Rock Steady Boxing is my latest weapon. At the age of 71, I am learning how to punch with power. I can do 20 pushups fairly easily and have achieved other heights of madness I hadn't embraced for eons. I can even skip rope; something I couldn't accomplish in my 20's. This is all thanks to the careful planning of the folks at the gym.

The most important gift I have received from boxing, is the creation of new pathways in my brain. I know them to be there, because I encounter them daily. I can feel the growth of my timing which leads to a better walking stride and less stress. I have a heavy bag at home and every so often, I smack that bag with all my new prowess, releasing any stress or distress and parking it there. Ten minutes of beating up the bag renders me stress free for a time and every PWP knows, less stress is good for the soul and lessens the power of PD.

Boxing is not the only solution. Try any form of exercise. Exercise. Exercise. Then exercise some more.

If you are distressed by anything external, the pain is not due to the thing itself but to your own estimate of it; and this you have the power to revoke at any moment. (Marcus Aurelius)

No thanks. I've made other plans....

I still feel LUCKY.  I have the ability and determination to conquer bad luck.

But then:

“If everything seems to be going well, you have obviously overlooked something.” 

― Steven Wright

I have seen the future. It is murder!

Ok.  It is 10AM.  I don't feel like I am going to fall over every step.  That's good, because yesterday I felt, at times, as if I had had too much to drink, displaying the steadiness of one who imbibes while walking the decks of the doomed Titanic.  What was it that made yesterday a shipwreck while today, I have no problems?  I think it was pulling my granddaughter in a sled to her school, over 1/2 of a mile, through new snow.  It was hard slogging for sure.  I was forced to bend forward with both hands behind my back to pull the sled at a decent speed.  When I dropped her off and started walking the half mile home, I felt a familiar feeling in my legs.  I was walking like a statue, clopping along, club footing.  Forget heel-toe, I had to concentrate on remaining upright.  I had felt this unease before yesterday's follies,  3 times to be precise  I was beginning to lean forward, awkwardly.  My steps were getting shorter and I felt like running.  I knew what was happening.  

Festination is an alteration in gait pattern characterised by a quickening and shortening of normal strides. This phenomenon is most commonly observed in patients with Parkinson's, and is sometimes known as Parkinsonian gait.

Parkinsonian gait indeed!  I was 30 meters from home when I knew I was going to fall.  Not a good feeling.  I stumbled across my lawn, through the snow. I was falling in a pinwheel rush, trying to stop the inevitable crash, when  I managed a death-like grasp at the stair-railing,  and saved face by pulling myself up.  My body was still moving forward even as I slowly entered the house.  My mind kept telling my legs to stop moving and eventually, I was able to sit down and rest.

It took a while to recover but eventually, I finally felt stable.  The rest of the day had me practically bouncing off walls and tipping over the lines in the floor pattern.  I had had a taste of my future.  I metaphorically spit it out and I  will no longer spend time dwelling on that future.  I know it won't be great.  Instead, I shall live the present content on the knowledge that I am doing my best to avoid "things" on the horizon.

Anyway, it is my day for boxing, so "things" are looking better, for now.

Statistics - Good week - 32 first time visitors

Total pageviews since 2011 -  83,320

	Mon	Tues	Wed	Thur	Fri	Sat	Sun	Total	Avg
Pageloads	19	16	22	20	22	36	22	157	22
Unique Visits	12	13	15	11	13	16	18	98	14
First Time Visits	3	2	5	3	4	7	8	32	5
Returning Visits	9	11	10	8	9	9	10	66	9

November 6 - 12,   2017

Countries participating last week

Even fools might be right on occasion

You don't miss water until the well runs dry and you don't miss your balance until it says goodbye.

I offer this observation, right or wrong, on one of PD's little offerings. I am having problems with a lack of balance.

Don't get me wrong, I can still walk, but when I turn a corner or try to navigate even a small hill, I get wobbly. It is an unnatural state of affairs. Life should be in balance. Movement without PD was all a matter of internal, automatic maintaining of balance but now, not often, but often enough, it becomes a conscious correcting of balance in order to stay upright. It is particularly prominent in the half hour to hour prior to taking medication. Touch wood the condition does not take a sudden upsurge in progress for I have things to do this summer (more about that later) and I would prefer to do them unassisted.

At times my lack of control, provides a sly laugh to strangers and that can be rather humiliating; however, I subconsciously admit that my prodigious entries in this blog were born of the need to make sure people understood the vagaries of PD and their causal effect on the victim's feeling of humiliation and to help PWP realize they are not alone and should feel free from any indignity brought on by their condition.

“Many of those who are humiliated are not humble. Some react to humiliation with anger, others with patience, and others with freedom. The first are culpable, the next harmless, the last just.” ― Bernard of Clairvaux

I suffer from introspection and can easily conjure up problems that don't exist. It is at once my strength and my weakness. This entry is one or the other.

You choose.

What does an Assyrian have to do with PD?

Parkinson's, I think, has hit me hard; this time gifting me a pain in my back that has kept me from any kind of exercise. I have even missed my favourite exercise - boxing - 3 out of the last 4 sessions.

The trouble is, I tend to credit PD with every little ache and pain that might arise. I confess to a touch of Convergent Hypochondria (Don't look it up, it's mine). This time however, I might have blamed the wrong condition. This pain is so persistent, I am beginning to believe it is related to my back bones, much like the time I had a spinal stenosis. Hence I am going to my doctor next week.

Otherwise, how are you doing? Somebody asked. Just let me say:

* The Assyrian came down like a wolf on the fold
And his cohorts were gleaming in purple and gold.

That is an example of a Netafore (new to the English language - again, it's mine). A Netafore is a figure of speech in which the author uses the net, some would say unsuccessfully, to whine about the state of his health by comparing his medical condition to an aging, raging, warrior full of lust for the kill and a passion for pain, attacking his body. A cold wind of speculation follows after.

Here endith the netafore......Get it?

Some good news is my old friend, who went under the knife a few entries back, survived the surgery with his sense of humour intact.

It seems to me that all of my childhood and historic friends have somehow aged, a lot! I thought I had not grown old until my granddaughter pointed out I was almost bald, whereupon I looked in the mirror but I couldn't see myself, blocked as I was by this old man starring at me from the other side of the mirror.

*from Lord Byron "The Destruction of Sennacherib"

25C to 0C with a bullet

It is true.  Last week the temperature on one day was 25C (77F) and within 24 hours it had fallen to a daytime high of 0C (32F) where it has remained these past 4 or 5 days. If that wasn't bad enough, during that period I noticed a distinct deterioration in my balance.  At my wife's urging, I applied for a parking pass.   Here is the physiotherapist's report in support of my application:

".....presents with the typical Parkinson's shuffling gait pattern.  His walking speed and stride length is compromised as is his balance; thus, he is more prone to tripping and falling.  He has had several falls and snow and ice increase the possibility of injury"

Sadly, all is true.  I remain optimistic.  If I did no talking, people I meet would have no clue of my condition.

I have deferred any rendezvous I might have with a deteriorating body until sometime after my death.

The high today is +1C. I ain't scared of no snow and ice, got me a parking pass.

Audience for the past week

The total to date is 87, 868 page views and I continue to get an average of 3 to 12 first time visitors on  a daily basis.  Thanks to all.  I hope I have in some way helped to make your journey a little easier. And now back to me (see next entry).

Mon	Tues	Wed	Thur	Fri	Sat	Sun	Total	Avg
Pageloads	21	40	25	19	17	12	12	146	21
Unique Visits	14	13	13	15	12	11	11	89	13
First Time Visits	4	2	5	2	4	3	3	23	3
Returning Visits	10	11	8	13	8	8	8	66	9

A discourse on ladybugs and balance

Raise your hand if you saw the movie "Papillon", with Paul Newman. Great movie! Remember the scene when Papillon is put in solitary confinement and is bitten by a vampire bat? Did it leave you feeling squeamish? Well, that's nothing! We have been invaded by ladybugs. They are not the friendly ladybugs that stay hidden under the leaves; rather, they are hell-bound, vampire, attack machines. Kamikazes, they are, as they end up squashed when their mission has been completed.

Now, don't get me wrong; their bite is inconsequential. That is not the issue. The problem is their bite is sudden and disturbing to this PWP. The surprise of being bitten and the reaction of swatting the demon bug causes me to stumble. My balance, already precarious, is rocked and I am in danger of falling. For example, today I mowed the lawn and I was bending over, adding gas, when one of at them nipped my neck causing me to stumble forward onto the mower. No damage done, except I had an audience of two passing by and could hear them whispering "what's with him?" I quickly downed my medication and, after a few minutes, I continued mowing.

This isn't really about vicious alien lady bugs, it is about me and others in the same condition. In the descriptions of the 5 stages of PD, have I hit stage 3 yet?

Let's do a quick overview of PD for those who have just tuned in:

• It is a progressive debilitating movement or more severely "an incurable, degenerative brain disease".
• It affects 1-2% of people over 65 but there is a possibility of early onset. For example, Michael Fox was 29 when diagnosed.
• Symptoms include slow movements, tremors, rigidity, speech problems and instability. There are others, but these are the most talked about.
• As mentioned, practitioners have developed a simple table outlining the 5 stages of PD.
• Not everyone agrees with this method and more extensive descriptions have been authored.

I will stick to the simple table and in particular, the first three stages.

1. Stage one is the mildest form wherein tremors and other related problems are usually found on one side of he body.
2. Stage two is the moderate stage. Symptoms are bilateral. Muscles stiffen and movement difficulties occur. Balance should not be a prominent issue.
3. Going from 2 - 3 can take months or even years.
4. Stage three symptoms resemble stage 2 but the PWP now has difficulties with balance and reflexes. Slowness is a complication, falls are more common but the victim is still able to live independently.

So where am I? Let's see

• tremors - one side only
• some rigidity and stiff muscles
• slowing down
• some bother with balance

Unfortunately by this description of the stages, I am in late 2 stage or early stage 3. When a tiny nip from a lady bug can cause me to lose balance well, I must be__________(you fill in the adjectival phrase). I am confident however, that through exercise I will not graduate to the next level no matter what. I promise myself to stay where I am.

By the way.... things may not be as disastrous as they appear. When Papillon is bitten by the vampire bat, the movie shows his wound - two little holes where the bat bit. The problem is, vampire bats do not have fangs and therefore cannot make two perfect blood-draining holes; rather, they make tiny cuts in the victim's skin and bathe the cuts with saliva that contains an ant-coagulant. The blood flows freely and the bat dines.

Some analogy, isn't it? I just had to mention those fiendish ladybugs.

Dinner with Woe Chi Grin

Had dinner with an old friend I had not seen in 15 years or so. In fact, I thought he may have died, it had been so long.  He is very much alive but he is falling apart.  I believe he has at least one shoulder replaced along with two knees.  He is so hard of hearing that it becomes necessary to almost shout into his ear.  To top it all off, he has diabetes.  Yet, through it all he has maintained a positive outlook and a grand sense of humour, laughing at his disabilities and loving the fact that he can't hear and  I can't speak.  Our wives had to tell him everything that I was saying, even though I thought I was shouting.  It was a fun time at a Chinese restaurant.

I forgot to tell you, he is undergoing hernia surgery today. Be better soon old fella, I don't want to go to the hospital to visit you.

I think I need a reason for telling this story. Well, I have one. The use of humour is therapeutic . Laughter is a natural medicine. We were born to laugh. Why? Cancer treatment Centers of America reports that researchers have found that a good laugh can:

• enhance oxygen intake
• stimulate the heart and lungs
• relax muscles through the body
• trigger the release of endorphins
• ease digestion/soothe stomach aches
• relieve pain
• balance blood pressure
• improve mental functions

Laughter therapy may also help to:

• improve overall attitude
• reduce stress/tension,
• promote relaxation
• improve sleep
• enhance quality of life
• strengthen social bonds and relationships
• produce a general sense of well-being

I don't know about you, but I will take PD over all the ills my friend has had to put up with. While you think that over, go to Youtube and watch Tim Conway and the elephant story (both the rehearsal and the live) and Tim Conway the Dentist. If those skits, in which Tim Conway ad libs unknown to his other cast members, don't make you laugh, will laugh therapy help?

statistics for last week

	Mon	Tues	Wed	Thur	Fri	Sat	Sun	Total	Avg
Pageloads	17	9	12	20	52	19	22	151	22
Unique Visits	12	9	11	12	19	13	14	90	13
First Time Visits	5	3	3	5	5	6	6	33	5
Returning Visits	7	6	8	7	14	7	8	57	8

Shakin' all over

It wasn't enough to take away my voice and make me sound moronic at those times when I should be showing off any quick-witted intelligence that, I think, once controlled my brain, but now, for a few minutes each day (when the medicine is wearing off) I get inner shaking in my limbs. That old familiar feeling!

What and interesting but insidious condition is PD!

Personally, I look forward to the day, we wipe it off the face of the world, ala small pox and polio. I hold out hope we will arrive at that conclusion sooner than later. I want to be able to smell flowers again, sign my name the same way each time, and hold out my hand with a steady grip. You know, the little things that PD has robbed us of.

There must be a way out of here
said the victim to the pope
Can religion bring a cure to me
Right now it's hard to cope

Can your amens take away
This shaking haunting me
Look toward the holy faith
His truth can set you free

I shake my head as if to say
The Allmighty is a fraud
No sense to start in praying
I doubt there is a god

No reason to be dubious
I've seen it work before
I think his words are flimflam
I wish to hear no more

All upon the jump tower
Where people go to pray
Facing the horizon
With thoughts enclosed by clay
Their prayers are filled with confidence
I've heard the people say
The Lord will fix the problem
And send that fix my way

What is all this nonsense
But the moment's finally broke
Their prayers are never answered
And then the victim spoke

I know that with a certainty
A cure will come some day
Your prayers are not hurting me
So go ahead and pray.

It's true, the cure will not be discovered by the religious, but it is a good plan to cover all possibilities, even if we believe it will be at the hands of a science nerd that PD will finally be dealt with - forever. So support your local nerds. The geeks of the world must be treated with love and care; after all, they are the only ones intently interested in the details of PD. It is in the details that the cure is lurking. You have my permission to carry on.

There is a difference between geeks and nerds:

1. Geek: May the force be with you
2. Nerd: May the force be equal to the mass times acceleration.

A little bit of sugar helps the medicine go down

I had breakfast with an old friend yesterday. He is one of those interesting people who tells interesting stories about interesting, albeit, eccentric topics, usually concerning his family. I still chuckle to myself at the time he solved his oldest daughter's impertinence when she asserted herself by shouting and slamming her bedroom door. My friend solved that problem by removing the door.

Stories like that. They come out of left field. They are particularly humorous and he is able to laugh at himself and the image he must have presented, for example, when driving to the lake and insistently telling his children in the back seat of his old truck to stop whatever it was they were doing. When he was unsuccessful, he stopped the truck and proceeded to attempt to rip off the locked rear door in order to deal with his kids, much to their amusement.

He has slowed down now, as he should have for he is 70 and dealing with diabetes II and other physical problems. Sometimes I am glad that I only have PD as my struggle.

We must have made quite a show for the other patrons of the restaurant. He is pretty much deaf and my voice is like the voice of the low talking woman in the Seinfeld show. The discussion was peppered with "what's that again", "pardon" "what did you say?", etc. Still it was good seeing him. He still has the ability to make me laugh with his comments about his hearing problem and my speaking voice, or lack thereof. He is not perfect, but that's what makes him perfect.

The good thing about this meeting was my ability to converse without my word finding disability. When I am completely at ease, my disability is not present. Why does the problem disappear when I am not feeling rushed or I am not in a teaching or scholarly mode? I found the following inThe Journal of Parkinson's disease, March 18, 2017:

“Around 70 per cent of people with Parkinson’s have problems with speech and communication, which can really impact their quality of life.

“Researchers and clinicians have in the past focused on the physical problems patients have with making their speech clear. But patients themselves say the problems are more complex and are more to do with cognitive impairment – for example not being able to think quickly enough to keep up with conversations or not being able to find the right words.

“They say that this has the biggest impact on their ability to communicate in everyday life. “We wanted to really prioritise the problems that patients experience – and to find out whether it is clarity of speech, or these more cognitive issues, that have the most impact on everyday communication.”

The research team undertook the first systematic review to look at whether cognitive issues or physical speech problems create the biggest barriers to communication. They sifted through nearly 5,000 studies in search of helpful data, and found 12 relevant studies involving 222 patients.

They found that both cognitive status and physical speech problems are associated with everyday communication problems among people with Parkinson’s. However patients who had greater cognitive difficulties, had more problems communicating.

And while patients with less clear speech also had trouble communicating, this factor had less of an impact on everyday communication."

Cognitively, I think I am fine. It must be some other factor causing my problem. Interesting. You can read more at http://www.journalofparkinsonsdisease.com/slow-thinking-conversation-stopper-people-parkinsons. But, in the meantime, pick low stress situations in which to converse. Your conversation will flow and you might find out you are an "interesting" person too. You have waited too long to unleash those interesting stories that you have secreted away because PD often made you sound stupid whenever you opened you mouth but, in the words of Ralph Waldo Emerson,

"It is one of the blessings of old friends that you can afford to be stupid with them.

I look forward to our next meeting.

Eat what you don't like to maintain your health. Sure!

J'ai mal a la dos. Really bad! I decided I should see a chiropractor even though I don't believe in much of the claims they make. I found one on the internet and got in right away. He seemed to know what he is doing. He used a couple of programs to map my back, shoulders and neck and those programs were very accurate in showing where the muscles are in distress. He is a very talkative, likeable guy and he helped, a bit, so I will see him again; although, at times I felt like George Costanza in that episode with the healer whose remedy turns George purple.

Anyway, he gave me dietary advice which really amounted to "don't eat anything that tastes good".

With that in mind I turned to the web. Here is what I found:

• nothing you eat will in any way cure PD
• eat healthy
• Certain foods can relieve some of the symptoms, for example eating fruits may help with easing constipation
• eat foods high in antioxidants
• 6 - 8 ounces of water each day to stay hydrated
• If you have swallowing problems, eat smaller portions, chew well and drink up
• eating yellow mustard can ease cramps
• if you are on L-dopa, don't bother with fava beans (thank God!) or mecuna puriens. Although both contain levodopa, there is no way of telling what concentrations of the drug are present in them and, like other supplements, they won't do you much good
• take medication on an empty stomach, 30 minutes prior to eating or 60 minutes after
• avoid eating proteins while taking L-dopa. Protein can reduce the effectiveness of levodopa.

That is it in a nutshell. Eat a balanced meal, even the stuff that tastes good.

One last dollop of advice: being healthy is the slowest way to die!

Pop goes the weasel

I will admit I am a bit of a hypochondriac when it comes to PD. I have to be logical and not attribute every little pain to parkinson's.

Well, that's not going to happen! I am too involved with the condition. For example, check out these symptoms:

1. stiffness - I seem to be stiff all the time, especially my lower back
2. My lower back can be quite painful at times.
3. leg muscle cramps are making more frequent visits
4. I am slow - my god, I move at a turtle's speed
5. I have lost confidence in my ability to walk more than a half mile without feeling dizzy

   WHAT'S HAPPENING?

   I turn to the internet for answers and find from Western Australia Parkinson's the following:

   1. In the beginning
      When you first start taking levodopa, you feel a noticeable improvement in your Parkinson’s symptoms that is maintained throughout the day. Your medicine effectively tops up dopamine levels within your brain for several hours, so most people get effective symptom control with three doses per day.
   2. Why things change
      Parkinson’s is a slowly progressive condition, so the symptoms you experience will change and evolve over time. The dopamine level in your brain gradually declines, which makes it harder for each dose of levodopa to prevent symptoms re-emerging. Doses of levodopa are effective for a shorter time. When this happens, most people start to experience fluctuations in symptom control throughout the day.
   3. What is wearing-off?
      Wearing-off is the term used when the effects of levodopa ‘wear off’ or diminish before it is time for the next dose. Symptoms of Parkinson’s return or worsen before your next dose of levodopa is due, and improve after you take your next dose. Many people refer to themselves as ‘on’ during the time when their medication is working, and ‘off’ when the medication has worn off.
   4. What you experience
      For some people, wearing-off can begin within one to two years of starting levodopa therapy; for others, levodopa may remain effective for five years or more. Everyone’s experience of Parkinson’s is different, so the wearing-off symptoms you notice are individual to you. Many people find that problems with movement (motor symptoms) return during wearing-off, but other symptoms (non-motor) can also occur...
   5. Diagnosing wearing-off Because people with Parkinson’s usually visit their doctor when they are ‘on’ (i.e. medication working), your doctor may not realise that your symptoms return between doses of medication. Don’t wait for your doctor to ask about wearing-off – tell them how long each dose of medication is working for and what happens when it wears off.
   6. What can be done?
      Your doctor can help you manage wearing-off by adding to or changing your medication, dose or schedule. There are several ways to increase the time you spend ‘on’ and decrease your ‘off’ periods. These include:

   • Changing your dose, dose frequency or timing of medication
     
   • Changing your medication to include drug(s) that prevent breakdown of levodopa within your body (these can extend the duration of benefit of levodopa, and may be combined with levodopa in a single tablet or taken separately).
   • Changing the formulation of your levodopa to provide controlled release
   • Adding another class of drug, such as a dopamine agonist, to your medication.
6. Am I experiencing wearing-off? A wearing off question card has been developed by Parkinson’s specialists to help you recognise whether you experience wearing-off. Each question asks whether you experience a certain symptom during a normal day, and whether this symptom improves after taking your next dose of medication. If one or more of these symptoms develop during a normal day, and improve after you take your medication, you may be experiencing wearing-off.

HOW ABOUT ME

Who knows what our dark shadows have planned? We are all different. I started off this epistle by recognizing my hypochondria and so I believe I may be in the early stages of wearing off as my symptoms are a little (tiny) bit worse about a half hour before my mediation is due, but every problem described above in the opening paragraphs can be explained,

• stiffness - I don't do enough stretching and sitting at a computer for hours on end does not help
• Lower back pain - I have had back problems since I was 16; although they have been on hiatus for a few years prior to a couple of months ago.
• Leg cramps are more frequent but not nearly as painful as when they first appeared
• walking ability - first gear speed is persistent but is probably just an indication of the advancement of PD, rather than a wearing down feature.

I hate this condition. I will continue exercising daily to slow it down but I know it will get me in the end - unless of course cures postulated in the media prove to be true, but then, there is that whole "Fake News" kerfuffle in the USA

A parable within a treatise on pigs and peeing

Okay, my dreams are getting particularly weird these days. Last night's was a doozy. Also unbelievable... but nevertheless...real

It starts with me and some friends stalking a wild pig as he goes to a meeting of - I forget its name, but it is something to do with pigs. Unknown to us, the pig has "made" us and is reporting our presence to the chief hog.

Now there is no way I can describe the chief hog and his minion hogs (where did they come from?) that will adequately give you an idea of their appearance, except to say they are evil incarnate, with bold flashing tusks, curled at the tips, dripping with blood. The chief hog catches a glimpse of us and bellows an order causing all of the hogs to turn in our direction.

"RUN!", I yell,"To my house."

Somehow we beat the hogs to my house and we close and lock all doors and windows. The chief circles the house, snorting and bellowing and looking for blood, our blood. Finally he gives" instructions, in pig language I have yet to conquer, and the hogs all run at the door, their tusks penetrating the wooden door and pulling it free.

"UPSTAIRS", I scream, "To my bedroom. Close and lock the door" I can now see there are five of us sitting in or on various spaces, their shadows dancing on the walls.

The hogs are battering my bedroom door, the points of their tusks start to poke through the wood. Soon the door will be destroyed.

"GET UNDER THE COVERS. Maybe they won't see us." We all get under the covers just as the hogs storm into the room.

Sorry folks. That is when I wake up. I had to "pee" for the fourth time that night. It is very unsocial of PD to interrupt my dream with the need to make a bathroom stop. Apparently this need to pee is rather common in our tribe.

From the National Parkinson's Foundation:

Urinary incontinence (involuntary loss of urine) is a common symptom in Parkinson's disease (PD).

Why do problems occur in PD?

The bladder is a muscle which gradually expands as urine collects. At the opening, there is a muscle called the sphincter. This muscle is usually closed except when urinating. Both muscles are controlled by the brain. When 1-2 cups of urine have collected in the bladder, the bladder may begin to have small contractions that signal the brain that the bladder is filling up. The brain can suppress the contractions until it is convenient for the person to go to the bathroom. When ready, the brain allows the bladder to contract while the sphincter relaxes. This allows the urine to leave the bladder.

Difficulty holding urine is the most common problem.

In PD, the brain’s control of the sphincter is disturbed. The bladder becomes overactive and wants to empty even when there is just a small amount of urine present. This results in following symptoms

• urgency
• frequency
• incontinence
• repeated nighttime urination.

Drugs are available (e.g. Ditropan®, Detrol®, Vesicare®, Hytrin®, Probanthine®) to help. These medications relax the bladder muscle.

If I ever dream the conclusion of the pig story, you all will be the first to know. Until then, I am left with a quandary, i.e. why did the pigs waste all that time battering down the front door when they could have easily come through a window? They can jump, you know.

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Everything is Relative

I was awakened last night, just after midnight, by a bone curdling cramp in my left foot. I haven't had one that bad for a few years and it came without warning. You know the kind, the kind that grips your foot and tries to turn it up. Probably caused by a time zone change when I flew to BC and I screwed up my medicine schedule. It can only be cured by standing. I did so and sure enough, it receded and I was able to sleep.

Before dozing off, I heard on the radio that North Korea launched another missile over Japan. The interviewer was certain that the regime would eventually toss a big one toward the USA. It would be a mistake. North Korea would cease to exist. There is always hope for the future that mutually assured destruction will keep us in peace.

Oh, did I tell you I had a foot cramp last night?

From Locksley Hall (Tennyson 1809 -1892)

For I dipped into the future, far as human eye could see
Saw the vision of the world, all the wonder that would be;
Saw the heavens fill with commerce, argosies of magic sails
Pilots of the purple twilight, dropping down with costly bales;
Heard the heavens fill with shouting, and there rained a ghastly dew
From the nations' airy navies grappling in the central blue;
Far along the world-wide whisper of the south wind rushing warm,
With the standards of the peoples plunging through the thunder-storm;
Till the war drum throbbed no longer, and the battle flags were furled
In the Parliament of man, the Federation of the world.
There the common sense of most shall hold a fretful realm in awe,
And the kindly earth shall slumber, lapped in universal law.

By the way, I had a cramp in my foot last night.

Nightmares are the shadows of the dreamer's reality

My wife was sleeping when I got into bed. I lay down, fortunately facing away from her. I started to drift off but was awakened by a sudden straight arm punch. I was about to throw a second jab when I woke up and the punch became a familiar muscle contraction. Had I been facing my wife, she would have been my first knock out of my boxing career.

She slept through the whole event.

This is the first time that PD has caused a violent incident. Usually my PD dreams are quite vivid and some can be rather creepy, interesting but almost spine-tingling.

What causes these dreams. I don't know. I have yet to research the cause, but my action in throwing a punch probably comes from my boxing practice. The club founder gave me a heavy bag. I set it up and trained for an hour. The words "jab, cross, etc" have become a normal part of my vocabulary. I say them over and over as I hit the bag. I don't know why, but boxing is good for me. It makes me feel loose, free from PD and for the few minutes I devote to it daily will help to slow down my PD. Maybe. Maybe not. How can boxing be a boon to PWP?

We all have a lazy brain

The Chicago Tribune (Dec 21, 2016) contains a short op-ed with one explanation as to why boxing is good for PWP.

Trying a brand-new type of exercise taxes your brain because it forces it to figure out how to do something for the first time. This can help with Parkinson's, the neurological disease affecting movement.

Exercises — such as boxing, which most people haven't attempted — are effective for Parkinson's patients, he said.

"The brain is a lazy organ," Schmidt* explained. "It has figured out a way to do the things you do routinely with the lowest possible energy."

So when you try something new, it requires the brain to find a new, high-energy maneuver. With boxing, the brain would have to work its way toward the jabs, hooks and uppercuts.

Rather simplistic, but it sounds plausible. I have made it part of my exercise regime, hoping it will tax my mind. I have a long way to go before my brain has entrenched the actions that accompany "jab, cross, etc". In the meantime, I will practise and practise some more. Hell, I will even practise in my sleep!

* Dr. Pete Schmidt from the National Parkinson Foundation

Pugilism! Who knew?

As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives.

I don't know if Thoreau's quote is applicable here, I am not that much (if any) of a scholar. However, when I read this quote, it brought to mind something my boxing guru said to me, "We keep repeating the combination in order to create new pathways in our brain. You will be stronger for it."

I have never dwelled on my PD, probably because (touch wood) the drugs work so well on me that outwardly, I am symptom free, but at the boxing club that I joined, I see people in far worse shape than I, and my diagnosis was long before some of their diagnoses.

In spite of their diagnoses, each person is not consumed by PD; rather, they see the good things in their lives as they happily bash away at the heavy bag. I was surprised to realize, my life became brighter as I got further into the sport.

Yes, I called it a "sport". At one time, I thought of boxing as two brutes try to destroy each other. Primitive. Man, was I wrong. The punching combinations are challenging. Saying "jab, cross, hook, hook, uppercut" is easy to say, but try doing that over and over! After, about 10 sessions, I am actually able to do it about 5 times in a row before my brain turns off. I can understand now why my father, a former champion in the Canadian army long ago, would sit in his chair in front of the TV and bob and weave as if he were one of the pugilists on the screen.

It is going to take me awhile before the pathways are cemented into my consciousness, but on the way, I have met some fabulous people who have reinforced some aspect of my future, I have discovered I am not alone, and I have a new sport to add to my catalogue of righteousness.

To my instructor, who was the founder of the local chapter of "Rock Steady", thanks for the insight and the chance to box my way to a freer life.

After that catharsis, I think Thoreau's comment is bang on ("bang"? Do you get it?)

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