The changing times

Just a short note. Today, I am having a good day. Christmas was fabulous. Boxing Day is for doing nada. My kind of day. A little quieter than Christmas morning for sure when, as a present,I bought each of the grandchildren a nerf shotgun and eye protection goggles. The children's ages are 2k, 5d, 8m, and 10n. (the numeral is the child's age; the letter is ID). The boys immediately started a war, with a touch of bedlam thrown in, and all of which included 2K. It didn't matter to any of them that 2k didn't have clue what was happening. He got into it, running and helping create chaos. He held his gun upside down, with the barrels pointed toward his own body. The other boys, 8m and 10n, tenderly pretended being shot by 2n all done with laughter, loud laughter. More noise, more laughter. Of course, because it was a war, there was collateral damage. One of the adults, took a projectile to the chest. In spite of the shooting and yelling, the war ended peacefully. It was time to go home, to bed for a nap probably, having been awake since around 3:30 AM or so, waiting to see if Santa had made his annual visit. He had. Alls well that ends well.

Oh, and by the way, the little girl, 5d, tried in vain to be a shooter with the boys. She lacked the "play-in-the mud" attitude of the opposite sex. About 2 minutes into the rumble, she put down her weapon and announced she was going to look at her clothes again (that ol' Venus - Mars thing).

I was happy Xmas morning even though my acquaintance with balance issues was omnipresent, I am happy today because of my balance issues -ie - I have none. Figure that one out.Other symptoms were at large too, but that is another entry

No PD insights today, it is just that my life is passing too quickly, that every so often I have to document my good days and ignore the bad.

Little boy blue come.....

To where the air smells sweet

I am generally optimistic about my PD but today, I see some darkness in the future. What did I expect--- to see a perfect future in my crystal ball? If that was the case, I should look up the definition of "perfect"......."Imperfect" and I have met---Perfection remains elusive. Still overall I remain confident. I just attribute that murky future to a dirty crystal ball. However, yesterday arrived and PD was no longer a fly buzzing my ear. Yesterday PD crept out with some artillery. It was evident on both sides of my body and I had a tendency to veer into furniture in order to keep my balance. I will cede victory in that instance. It was like being drunk without the benefits. All I could deal with was a POOR ME infatuation. Then I read an email from J of Grey Cottage who was diagnosed almost 2 decades ago. J's battle with PD is ongoing but, good news, it has been bilateral for 7 or more years and J is still active and fighting the good fight. From J's small victories, I began to cheer up and now am back to my old self, alive and learning (or is that "leaning"??). Thanks J, I needed that small, yet significant, boost.

At some point in a dark day, I wrote a poem which I was going to post yesterday but, I forgot. It is a sad and depressing bit of nonsense and that is not me. I don't bring a cloud to the party. For family historical significance, I include the poem now in this post. Love it or leave it, I am just glad to be rid of it.

On losing ones patience

I've had you for a long time now
It's been a real ordeal
I don't know what I did wrong
And I hate the way I feel
It's a tremor in my bindle
A judgment I'll reveal
A cruel iteration
There ain't no cure for me

I am writing with my finger nails
My back is racked by pain
I keep my wounds within a thought
Protruding from my brain
They've made a little progress
But it's nothing I will see
A raging repetition
There ain't no cure for me

No cure for pure exhaustion
Or shaking in both hands
Walking like a bindlestiff
Trying to understand
Why my legs are made of clay
While my feet are made of sand
My anger disappoints me
Can't I just be ordinary
The ins and outs my symmetry
But Discordant drummers calls my name
My eyes are crossed I hear no sound
There ain't no cure for me

The promise of their victory
Keeps me in the passing lane
Hoping that this biway
Won't bring me here again
I can't find it in the bible
Or in the empty pews
> I guess I'll shake foever
As I sanitize the news
Looking for whatever
A clue to set me free
I genuflect to darkness
The only cure for me

I hear the owl, in the distance, calling my name

It is with a touch of morose - just a little touch mind you, and sweetened with a drop of helplessness, I must report that my PD has picked up its velocity. I now feel the tremor in both sides of my body and have had to deal with some innovative attacks by my enemy.

For example - a couple of days ago, just in the moment I was drifting off to sleep, WHAM, someone or something hit me with significant force between my neck and upper chest. I jumped out of bed, ready to take the offensive against the King of Shades, except there was nobody present to take issue with. No King. Nothing. Darkness only. My opponent's offensive had been just a short foray into "no man's land" to evaluate my defences, but it left a small, psychological scar.

HOWEVER.....

I continue to exercise 6 days a week to slow down PD and actively await its cure. Be patient, I mutter to PwP, exercise comes highly recommended as an enemy of PD.

There are those in the Tribe who are sceptical of the exercise claims. To them I caution, PD cannot be defeated; but, we can slow it down only by exercise, of course. That is my weapon of choice; do not spurn the exercise option.

I have a duty to myself to fight this enemy as hard as I can, even though I know, at this time anyway, that I cannot win, My end game is now a little clearer. I urge you to give exercise a chance.

Even if exercise is not as effective as the medicos claim, your body will thank you

After all, we all want to be looking' good and be in the best possible shape when we dance on the devil's grave.

nota bene - the devil is PD. Get it?

60,041 pageviews to date - much appreciated

Something's happening here? What it is, ain't exactly clear.

Have you ever had one of those days? Weeks? You know them; where you feel like being in a basket ball game and the ref yells :strike three, yer out. Do ye ken what I mean? Do you grok me? Feel me?

It is pure frustration. A philosophical conundrum akin to "what is the sound of one hand clapping?"

I don't see my neuro too often, haven't had to, my PD is (was?) progressing slowly. About 3 months ago he examined me and during the conversation he remarked "We are at maximum dosage for mirapex and we are pretty near it in Amantadine." He then handed me the prescription, which I folded and put in pocket. On the way home, I stopped in at the Pharmacy and registered the prescription for use when the current prescription ran out.

I had not even looked at the contents of the new prescription.

Imagine my surprise when I received 2 bottles of pills, L-dopa and amantadine - but not mirapex. I requested of the pharmacist to call my doctor and see if his prescription was correct and see of I could get mirapex. No response. I will call him tomorrow and keep you posted.

The problem stems from misunderstanding. When the doc spoke of maximum dosage for Mirapix, I thought he was speaking about "daily dosage". Apparently I was mistaken. We'll see. In the meantime(1) doctors be clearer in your speech; (2)patients don't be morons, read the prescription before you leave the office and then, if necessary, ask questions.

Et non sinebat ut carborundum illegitimi

PD has made a few forays into my space and I am slightly nervous.

In the past few days, I have encountered:

• trouble swallowing - could be a nuisance; but hey, at this time of year that could be a bonus. I eat less and lose weight.  Now, if it weren't for eggnog,  I would make a plan to get me back to the thin me.
• balance problems - when I turn corners, I can feel the loss of balance and at times,  I have to grab onto the nearest person or piece of furniture.  It is not bad now, but it is an omen.
• lack of arm swing.  I was walking to my granddaughter's school to pick her up when I noticed my left arm was kind of hanging by my side.  I corrected it, but it took me by surprise.

These conditions account for any melancholy you might detect in this entry and if the first two hadn't been present in 2011, I would be upset; but they did take place early on in my diagnosis and then disappeared until now so I am still upbeat where they are concerned.

On the upside (I am reaching here) lack of arm swing is not particularly disturbing as it is usually one of the initial symptoms doctors use to diagnose PD. I am content to label the lack of arm swing as an indication that I have not gone to far into the clutches of our pernicious bastard (lack of arm swing = early parkinson's).

Sure. Right!

footnote -this is supposedly the correct latin for "don't let the bastards grind you down.

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Parkie Virtual Reality Dreams.

As you know, PWP are subject to strange dreams that feel real.

Very real!

There are actual times when I think my dreams and reality are one and the same. Here is scenario from last summer. I say "scenario" because I am still not sure I was dreaming or if I really did do the deed.

Summer is hot here my town and the heat can bring out all kinds if weird looking insects that haunt the grass. One pass with a lawn mower and I can be shrouded in mosquitos. In my dream/reality, I am mowing the lawn. I see slight movement under the oak tree. I think it is tissue moving in a breeze. As I get closer, I realize it is something alive. The best I can describe it is, a white opaque, sausage-like object about a half three inches long, and two in height, pliable, with the shape of a small cube inside at either end of the white sausage. Both ends are moving. Each cube is twitching independently. It is in my way, so I push the mower over it, thinking I can puree the thing but, when I look back, it is untouched but the twitching is more pronounced. Some force makes me run over it a second time. I push hard as I pass over it. I look back and I can see raw meat on the top of the front cube. I had cut the front cube open and now it was no longer moving. I must have killed it. I continue cutting the grass and when I reach the spot where the thing was supposed to be, it is gone! Disappeared. With a shrug, I continue my task. After some thought, I decide it must have something to do with the rabbits that run wild in our neighbourhood. Maybe a parent rabbit pulled it under the house. I keep on cutting, my spirit growing weary with a touch of melancholy. I don't do things like that. I don't kill things. Sure, I squash mosquitos but that's their fault. I'm not into death. I certainly don't go around killing cubes.

I had a quantifiable dosage of guilt for a day or two and confessed to my wife. Her response was an undramatic. "Just a dream."

Eureka!

Of course it was.

Just a real life, virtual reality, 3d-PD dream!

Why not?

I know it sounds crazy but I think it might have been real. I satisfy that little dream daemon with the impertinent thought it had all been a nightmare.

The trouble is, Freud said dreams are only real when they are really crazy (or something like that). My "dream" was crazy. Does that make it real?

Or does it just make me crazy????

Danger - sales person flogging snake oil on this blog in "Comments"

Danger, Danger, Read this

In my opinion a comment that has appeared on my site 6 times is someone preying on our desire to get rid of our PD, or at least make it less of a distraction. Here is a part of that quote

..... At first i was skeptical but i just gave it a try..I was on this herbal Medication for 4 weeks and i used the herbs according to the prescription..i decided to visit my doctor for another test..Honestly speaking, i never believe all he was saying until after the test when my doctor mention the statement that am Parkinson disease negative and my doctor was shocked as well....If you are out there suffering from this deadly disease you can also contact them via email: Healthherbalclinic@gmail.com or website on www.Healthherbalclinic.weebly.com

Try it if you want, but the writer sounds too "honestly speaking" and the website promises a cure within 4 weeks. Come on buddy. How stupid do you think we are? I try to remove any such comments within few hours but I might miss one so don't be taken in by charlatans. Talk to your doctor first. They all seem to know what they are doing.

Keep the faith!

Reality in a snow globe

November was the hottest November on the records. It was so warm,people were out in shorts. No snow, no mosquitos, warm breezes and astounding temperatures- a veritable Eden, without the snake.

Alas and alack, the snake appeared in the form of winter, which struck with a gusto. Heavy, wet snow made roads almost impassible and visibility in the city was by my estimate, 50 feet. I think about 6" of the stuff filled my driveway, so my exercise today included shovelling. Surprisingly, I enjoy the task.

I was able to get my car out and had to travel down the back lane at about 30kph, just to get through the snow to the main road. The rest of my trip was an adventure. Ironically, I have an appointment in the morning to have my snow tires put on the car.

All things considered, it could could have been worse, I could live in Montreal. Winter is not the friend of cities that have hills.

What is the effect of all this on PD. PD slows you down, you become a turtle compared to your old persona. I used to like to run in blizzards because the fallen snow would make my workout that much more difficult. No more. Firstly, I no longer run and secondly slogging through the snow just multiples my slow, parkinson's movements exponentially (or so it seems). It is like walking through deep sand with flippers on one's feet; although, it is good exercise for PWP.

Frankly, who cares?

After slowly negotiating my way through the snow packed streets (in a car) to pick up my granddaughter, I now choose to ignore the PD workout that snow walking gives me and will remain indoors next to the fireplace, with book of the mystery genre and glass of wine, white of course, and hope that I can make it to the car dealership at 7:30AM to get those snow tires.

"A lot of people like snow. I find it to be an unnecessary freezing of water." (Carl Reiner)

It's a sign of the times

Montreal, 1967

In April, 1967, My girlfriend and I started to work on La Ronde, the island amusement park at Expo 67. We were working in a french restaurant, even though neither of us could speak french. Every morning, when we got to the island, at a precise time, like an alarm clock, we were bombarded with sound from every speaker at the Expo. "Un jour, un jour, quand tu viendras...." a lively little song to start the day. That little ditty cleaved itself into my brain where it lives to this day, awaking every so often to drive me crazy.

The job was OK, but I wasn't going to make enough money to pay for my trip home and my next semester at school. I was sitting on a box outside the restaurant, brooding over my situation and not paying attention. When I stood up, my head was pierced by a metal part of an ornate speaker box. Blood was everywhere. Fortunately, the managers of the restaurant knew that head wounds bleed a lot. They bound the wound and told me to go to the hospital. I have no recollection of how I got there, but I did, and was stitched up and made it home, albeit missing a large spot of hair.

Yes, yes, we all feel sorry for you but get to the point. What's all this got to do with PD?

Bear with me. I will find one as I continue. I have a vague point in mind.

Returning from the hospital, I had to pass by two old buildings that were being demolished and there on a wall, in bright red paint, was written in tall letters, "Juden Raus". Even with my limited german, I knew what it meant. I began to write a mental poem as I stood transfixed. My daydream was shattered when one of those balls they use to demolish buildings crashed into the offending wall, turning it into rubble. I was shaken. It was my first realization that antisemitism was alive in Canada. I turned away and headed home. On the metro, I was thinking about the sign and signs in general and the power their messages have, positive and, as in the case, ugly negative. Sheer evil hatred.

But that was long ago and I have stopped thinking about signs. Billboards are less common, Burma Shave signs have disappeared and graffiti is more of an art form than a bearer of messages. Over the past 40 years, society has cleaned itself up and has no patience with hate messages that are removed quickly and their authors prosecuted.

This past week, I saw a hand written sign in bright red, "FIGHT PD". I was in gang territory so it might have meant "Fight the Police Department", but I choose to believe some good samaritan was reaching out and telling people to "Fight Parkinson's Disease. Maybe? Why not? To me, it is enough to know that there are actual serious people, researchers, fighting Parkinson's, looking for a cure. We applaud them all and we should do our part and contribute to their battle; so, here's a sign for today:

"Fight PD. Find a cure. Donate Now."

Your donation is welcome, whatever the amount. Every dollar helps and you will be serving yourself and all PWP. If you don't have a local organization (I contribute to Parkinson's Canada) try donating to the MJFox foundation.

Yes, think of this as the return of the Burma Shave formula (if you don't remember, google "Burma Shave"),

1. there are fewer Signs,
2. no Signs,
3. maybe just a token sign,
4. blending with the scenery,
5. blowing your mind.
6. Just this.
7. Find bliss.
8. Won't you read my sign!
9. Donate online.

Ok, Ok, so I stretched to find a point, but you get the picture, don't you?

A word to the wise from people who know.

The following is wise advice from parkinsons.org.uk, a site I recommend to all PWP.

Hi all, AtreMorine is a supplement made from broad beans (Vicia faba). Broad beans can provide a natural source of levodopa, the chemical building-block that your body converts into dopamine and the 'active ingredient' found in some conventional Parkinson's medications. Essentially, natural sources of levodopa, such as AtreMorine work in the same way as Parkinson’s medications, which work to replace dopamine and help ease symptoms. However unlike with Parkinson’s medications which are of known doses, it’s hard to control the amount of levodopa you receive with natural sources.

We would encourage anyone with Parkinson’s who is thinking about trying supplements to speak to their specialist or Parkinson’s nurse. We also urge people to be cautious when buying supplements over the internet and be aware that they are not subjected to the same careful safety testing and monitoring as approved medical treatments.

At the moment, there is no treatment available that is able to slow, stop or reverse the progression of Parkinson’s. Our new research strategy strives to bring new and better treatments to people with the condition and we are funding many projects looking into treatments that could potentially stop, slow or reverse the progression of Parkinson’s. You can find out more information about our research here.

Best Wishes,
The Research team

Need I say more?

Of course I will. On to Gou Teng.

Traditional Chinese medicine can be very useful and beneficial, but be aware of charlatans preying on our weakness.

An herb called Cat’s Claw, also known as Gou Teng, became popular a few years ago, as a result of the research of Dr. Li Min, a TCM practitioner from Hong Kong Baptist University, in which she proposed that the combination of Cat’s Claws and other Chinese herbs could be the cure for Parkinson’s. Gou Teng herb has been used to help victims of “the shakes” for more than 2,000 years. Dr. li is no charlatan, she specializes in neurodegenerative diseases but I still advise caution when trying it out.

In my first year with our dark passenger, I ordered some gou teng from China. It came neatly packaged and official looking but I never opened it, having heard on the radio the danger that supplements from China were not always as they were advertised. Some supplements appeared to have been contaminated with material from the floor.

That was enough to put me off.

In the 6 years since I heard that gou teng was promoted as a possible cure, I have heard nothing more. It is still found on the internet, but there is no international hype describing gou teng as the next cure. I guess it didn't work. I think cat's claws must be like mucuna pruriens and AtreMorine - a natural source of levodopa; but, as parkinson's.org.uk advised it’s hard to control the amount of levodopa you receive with natural sources and the purity of the supplement might be questionable.

I continue to take a sit and watch approach to natural remedies; otherwise, I might go broke trying to keep pace with the appearance of the next all-natural cure.

By the way, I understand Dr. Li Min continues to study Cat's claw and its use in neurological problems. I wish her well.

Note - any comment from Theresa And, or anyone else with a similar story is a scam but I cannot delete it