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

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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.