Welcome to my wacky world

I am returning to a world of hallucinations. In fact, I am rather uncertain I' m not living an hallucination while I type. You know, like Seinfeld's "show within a show". I thought they had gone away; but no, they're back They are not really hallucinations, like when you see a revolutionary soldier standing at the foot of your bed as happened to a cousin in Charleston. No my hallucinations are more like feelings. I feel a tall man beside me or a girl in a checkered shirt looking over my shoulder, but when I turn to look, nothing. They are flash hallucinations and I am uncertain whether they are a result of a lack of sleep or a full frontal attack by PD. If they persist, I will have to......I was going to say "tell my doctor" but the fact is, whatever they are, I know they are not real and not particularly invasive so I will welcome them into my home as friends of the ethereal kind. Once in, I shall graciously suck the ectoplasm out of them and bury their deflated forms under a pile of law books I have stacked in the corner so they will either be crushed by the weight atop them or, if they decide to read the books, they will most certainly die from boredom.

Case closed.

All things being variable...

I read, or maybe heard, that when looking for a solution to a problem, the solver should not include variables that don't affect it. Kind of a trite notion, don't you think? But, what if there are variables that do affect the problem, but you have not taken them into account?

As I may have mentioned, I am involved in a 6.5 year study to determine if caffeine can slow the progress of PD. The two people ("medicos") conducting the research are good, knowledgeable people and I trust their thoughts and opinions, but there is a nagging doubt about whether or not all the variables that ought to be present are present. I intend to make it part of the conversation when next we meet.

The first variable I will bring up is a cousin of "white coat syndrome", usually associated with a surge in blood pressure as the result of visiting the doctor and having a sort of stage fright or even a fear of doctors. I experienced this the first time the medicos tested me. The examination was extremely thorough and physically, I think I know exactly how I am progressing against the average rate of deterioration. The medicos are looking for the symptoms of PD, including, inter alia, muscle stiffness, tremor, weakness, PD mask, sexual problems, sleep deprivation, depression and signs of dementia. To determine if dementia is, or is becoming, a problem , they utilize the Mini-mental State Examination (you can find it online) which includes questions to determine cognitive ability. The first time I took it, I had an audience of just one of the medicos and I scored 24.

The maximum MMSE score is 30 points. A score of 20 to 24 indicates mild dementia, 13 to 20 shows moderate dementia, and less than 12 - severe dementia. Was I, with my score of 24, mildly impaired? Not a chance. The problem was stage fright. The test was sprung on me suddenly and my fear of looking stupid caused me to look stupid.

Could the test have been accurate and at the very least I was declining mentally? Probably not. If I were becoming cognitively impaired, the score on my second MMSE, 6 months later, would have declined along with my mind. For example, the scores of people with Alzheimer's decline 2-4 points annually but, on my second test, my score was significantly higher. I no longer had stage fright and my score was 28. It bugs me that I don't know where I lost those 2 points but the conclusion is evident, the MMSE is affected by white coat syndrome. Stage fright during the first test had negatively affected my score, while the lack of stage fright during the second test had positively affected my results. Have the medicos dealt with the stage fright variable?

Secondly, I wonder if the medicos have taken into account that I am a exercise fanatic. Exercise is known to slow down the rate at which PD progresses. It is the one thing I have experienced in the 5 years post diagnosis. Prior to taking my melange of miracle drugs, my right hand tremored most of the time. I would start out on a one hour walk with my right hand flopping around and 15 minutes into the walk, the tremor disappeared and kept itself under control for a few hours after. If I am in the non-placebo group and the rate of my deterioration has been positively affected, can they attribute it to the caffeine or the fact that I am an exercise addict? Just one more variable to think about.

The natural design of the universe is total chaos. We can force chaos into a linear system but, given time, that linear system will devolve into chaos. As a result, there are just too many variables to accurately predict outcomes but the more variables we can define, the more we can rely on a researcher's conclusions. I hope the medicos have taken at least these two variables into account. We all want to know their results are accurate. Does Caffeine positively affect PD's attack on our brains?

But, since PD is part of the universal chaos, defining all variables in its chaotic state, is in itself chaotic. One person's variables can be another person's constants. If we cannot always totally solve a problem because we are unable to define all of its variables, perhaps the best we can do is to just to avoid variables that do not affect it, making the opening paragraph not so trite as I thought.

In the words of one William Shakespeare:

“The circumstances of the world are so variable that an irrevocable purpose or opinion is almost synonymous with a foolish one".

Short term memory loss. What is that all about?

I have heard there are three things that may signal the onset of dementia. First your long term memory survives. Second your short-term memory begins to disappear and..... I forget the third thing.

I know. You have heard that one before. I couldn't resist.

Anyway, I was reading that short term memory loss is a red flag that might be signaling the onset of dementia. "Wow!" My short term memory is suffering. I remember practically every student I taught at my first junior high in 1974, good memories; but, I only remember a few from the last students I taught in 2000, also good memories. Am I doomed to go "cuckoo" as my alzheimers-laden father first described his condition?

Quick, onto google. Check for the definition of "short-term memory" as it pertains to dementia. I can relax. "Short-term" is referring to things done or said in the previous few minutes. "Long-term" is any other memory. I think that's is why in the mini mental test they give you a list of 4 things and a few minutes later, ask you to recall those 4 things.

I can do that OK.

Then what accounts for the fact I can remember students from 40-odd years ago but have forgotten much from 15 years ago? Both schools were equally good, equally enjoyable. I think I know the answer. My wife and I had no children of our own in 1974 so we adopted my students for children. We even took two boys and two girls camping in the north, during the summer break, "In Search of the Big One" (fish). I can remember practically everything from that trip, it (they) made such a positive impression on me. Then my first child was born and there was no room for students during the summer, at least not on long trips.

So, there you are, if you can't remember something minutes after an event, you may have a problem and should see a doctor. However, chances are you won't remember reading this and you will continue to gently slip into that quiet darkness that my father described as having "gone to hell".

Fortunately, I am pretty sure I won't be joining you.

About Dementia Alzheimer's Disease (Memory)

Memory is the brain's unique ability to store and retrieve information. Generally, memory is thought of in two different forms, short term store and long term store. The brain structures that play an important role with memory are the hippocampus , the frontal lobes and the diencephalon . Long term store is the memory of past events and experiences. It is broken down into three components, procedural, semantic and episodic memory . Procedural memory is a person's ability to remember how to do certain skills such as riding a bicycle or playing a piano. A person is usually unable to describe procedural memory in words. On the other hand, semantic and episodic memories both may be expressed verbally. This is why they are often together known as declarative memory. However, the type of knowledge they refer to is different. Semantic memory is memory about the world around us. It includes things such as the knowledge that the sky is blue or the name of your mother. Episodic memory is memory for personal events such as a birthday or your wedding. Short term store is memory related to events that are presently occurring. For example, think about when you read a sentence. In order to understand what you have read, you will need to remember the first part of the sentence until you have finished. Your brain is constantly using its short term store to remember experiences and information. Often the information will move from your short term store to your long term store. Then when the information is needed again, it can be retrieved from your long term store. For example, when you meet someone for the first time, memories of their name and what they look like are moved from your short term store to your long term store. This way when you meet them again, the information about them can be pulled from the long term store back to your short term store.

Quote is from Demenia Guide

Hair today, gone tomorrow

She asks me why, I'm a hairless guy
I'm hairless noon and nighty, night, night, less hair that's a sight
I'm hairless high and low, don't ask me why, don't know
It's not for lack of bread, and I'm grateful I'm not dead, but

I'd rather a head with hair, long beautiful hair
Shining, gleaming, streaming, flaxen, waxen
Give me a little more head hair, long, short, I don't care
Just a touch, an inch of hair, where? Momma, everywhere! Daddy, daddy why am I losing my HAIR!!

OK, so I am not hairless, but I am well on my way!

One of God's little giggles is that he takes hair away from men's heads but allows it to grow rampant in his nose and ears while his eyebrows flourish. Lately, I have noticed that I seem to be losing head hair at an alarming rate. I ask myself "Why? Why me?" I get no happy answer. I expected some hair loss in the later part of my journey through life but, and it is a big "but", my latest loss is hair loss on steroids.

Is it the drugs? My first reaction is that would be unlikely. Hmmm, trust but verify. The answer must be out there in the ethernet and so I google "mirapex hair loss" and damned if I don't find a few hundred sites that answer my question. "Yes, my follically challenged friend, mirapex can be the culprit!" Well, logically, I can't stop taking that drug. I would just replace hair loss with a ridiculous tremor. I begin to swear. My throat tightens and I suppress a tear(The drugs are turning me into a drama queen, but that will be a subject of another entry); and I can't stop lovin' my lack of tremor and so I pop a mirapex and console myself with the notion we are all born bald baby (Telly Savalas) and face it, I guess it is better to have a hairless head than no head at all.

Where have all the hippies gone, long hair passing?
Where have all the hippies gone, long hairs ago?
Where have all the hippies gone?
They grew old like everyone.
Oh, when will we ever learn?
Hair, like youth, will ne'er return?

If you lived in the Sixties, you will please forgive my bastardization of our music.

On guinea pigs and Harold

While walking home from my granddaughter's nursery school Christmas concert, I realized I had not had that parkie feeling for several days. It has been 5 years since diagnosis and, except for some minor problems, I don't feel any different then when I heard the neuro say, "I am confident in my diagnosis."

Of course, a second later, that little gnat buzzed in my ear, "minor problems!! Have you forgotten you can no longer speak properly?" Yes, I had forgotten that little detail; however, any other symptoms have gone (drugs) and other than sounding deranged when I open my mouth, I feel perfectly normal. I am confident in my diagnosis that the rapidity of PD's assault on my brain is slogging through the mud of no-man's land, moving slowly. I wonder how things will be 5 years hence?

Why is PD moving so slowly? The following are 3 theories that I have come up with.

Guinea Pigs and Caffeine

I am a participant in a study of the effects of caffeine on the rate at which PD consumes the brain's dopamine producing cells. I have been on it over a year (I think), taking 2 pills of caffeine daily. The strength of the pills will increase for 6.5 years and then....well, whatever researchers do with data they have collected will be done. I wonder if the caffeine has already started slowing my PD down. It could be; although, I might be on a placebo. So who knows. Diagnosis-uncertain.

Then along came Harold

A regular reader introduced me to Harold. Harold is not really a person but rather an acronym for the phenomenon of "hemispheric asymmetry reduction in older adults". HAROLD, get it? The article was written today and can be found HERE Its thesis seems to be that exercise has a beneficial effect on the aging brain. This is something I have believed and practised over the past 5 years. On average, I exercise 5 - 6 times per week. My exercise regime includes weight training, treadmill, stationary bike and long walks. I vary the exercises from day to day so I don't get completely bored. Maybe exercise has slowed down the progress of PD. Diagnosis -I like to think so.

But then

Maybe I am just one of the lucky ones! It is a zero sum game. I got PD (bad luck) but the PD's progression is slow (good luck).

Touch wood. If you know what I mean.

Oh Bacchus, Quo Vadis?

I have come to the conclusion I am not playing with a full deck. I am at war with Bacchus, that cunning, conning, conniving god created by the Romans as an excuse to drink wine to excess. He thinks he can control me by tempting me to have a glass now and again and, dammit, he sometimes succeeds.

Now a glass of wine a couple of times a month should not be a burden and, if it weren't for a co conspirator, working undercover, such frequency would not be an issue. So, every so often, I hear a small, chilling voice in the back of my brain telling me "just one glass....it won't happen again". I hate that lousy voice because I usually succumb to it, with a disastrous result.

Bacchus lures me in and his henchman, amantadine, seals the deal. They combine to deny me sleep. Don't drink wine if you take amantadine or you will spend most, if not all, of the night wide awake with nothing to do but think deeply on the subject of linoleum and its unsolvable problems. You pay for it the next day worrying and wondering if sleep is a luxury beyond your means.

The lesson of today's lecture is if you are on amantadine, avoid the grape. I didn't last evening and now at 9AM, I am beginning to yawn, my silent shout of #%&@ you Bacchus. I will win next time.

A stiff upper lip is, for sure, necessary

I was talking to Mr X who was telling me about a man he knows who has PD and who becomes rigid when he doesn't take his meds.

That brought to mind when I was coaching at a national track meet in Quebec City. I overheard a young French athlete tell her companion,"Oh, j'ai stiff" and then went off to warm up for her race. I had to smile both at her Frenglish expression (in French, "Oh, j'ai raide" would be correct) and her youthful stiffness. Perhaps she was talking about her suppleness not being its best. Maybe shes was not as loose as she thought she should be. Maybe, but I have my doubts. You don't win races when you are stiff and she won hers! Sometimes I think that young athletes have no bones, they are so supple.

So there you have it, stiffness ranges from a lack of suppleness to absolute rigidity.

Stiffness came up in conversation in another context last year when an old friend told me he had myotonia congenita. He had had it all his life as did other members of his family. In his own words:

"We always looked upon our symptoms as comical rather than a burden.

(for example) Taking that first step up to get on a bus in winter … “Why funny” …… because your leg won’t move. Frozen solid for a few moments. Add that to grabbing the metal hand rail to assist raising yourself up and now having difficulty letting go of the hand rail. Now that’s funny. The effects only last a few seconds. It usually left the bus driver shaking his head wondering who this nut was getting on the bus."

Myotonia Congenita

Myotonia congenita is a disorder that affects muscles used for movement (skeletal muscles). Beginning in childhood, people with this condition experience bouts of sustained muscle tensing (myotonia) that prevent muscles from relaxing normally. Although myotonia can affect any skeletal muscles, including muscles of the face and tongue, it occurs most often in the legs. Myotonia causes muscle stiffness that can interfere with movement. In some people the stiffness is very mild, while in other cases it may be severe enough to interfere with walking, running, and other activities of daily life. These muscle problems are particularly noticeable during movement following a period of rest. Many affected individuals find that repeated movements can temporarily alleviate their muscle stiffness, a phenomenon known as the warm-up effect.

My friend only realized that he had myotonia when watching a TV program about fainting goats 8 years ago. It was confirmed by his neuro. He had gone through life thinking everybody had the same problems.

Of course, myotonia is another level of stiffness, far above the simple "j'ai stiff", but not that far off the level of "rigidity".

Most of us PWP may eventually fall victim to some level of stiffness. It is one of the major symptoms of PD, along with tremor and, I think, exhaustion. Of course, PD being a designer disease, not everyone will experience severe stiffness as a result of PD.

For PWP who are sufferers of stiffness, the two best things you can do are:

1. Don't be stupid, take your drugs in a timely fashion as prescribed by your medico; and,
2. Exercise, of course, at least 30 minutes per day, 4 or 5 times a week.

As JFK once opined:

"Physical fitness is not only one of the most important keys to a healthy body, it is the basis of dynamic and creative intellectual activity."

Falling: to come or drop down suddenly to a lower position, especially to leave a standing or erect position suddenly, whether voluntarily or not

I had another fall yesterday. This time it occurred in my home. I wasn't running or walking; rather, I think I was shuffling and I tripped over some wires in my closet. Oddly, I seem to recall the entire incident, like a bad film. I see myself get caught up in some discarded computer wires, and then in slow motion, falling face first into my office chair, which unfortunately has hard arms. I hit one arm with my cheek bone, one or two centimeters from my right eye. The result is a bruise/bump to pretty up my rugged good looks and and a new danger zone, a pile of wires, which I have yet to clean up. I am just too lazy. Instead, I tell myself not to shuffle and that usually works.

Anyway, falls don't bother me, it's the stopping that gives me pause.

I know I can move without shuffling. I bought a treadmill and use it about 30 minutes each day. I can get it up to 8 miles per hour - for about 16 seconds after which I drop back to 5mph. I enjoy the machine. I certainly don't shuffle and I can pat myself on the back for finally getting some real movement back. I highly recommend the treadmill but if you get one make sure it is capable of at least 10mph so that you can run on it.

Sometimes my future gets me down. I try not to dwell on it. As someone said, you don't drown by getting into the water, you down by remaining submerged. Besides, things are looking up. MJF Foundation reported on a couple of new advancements, one of which is a time release capsule for L-dopa which effectively controls the wearing off problem we suffer from now. I don't remember what the other drug does, but it is good.

Is loss of memory a symptom of PD. I don't remember that either.

I will have to look it up!

"You're not drunk if you can lie on the floor without holding on".

I have been weaving a bit lately, especially as the L-dopa wears off. It is kind of a floating feeling, light headiness, much like the times in university when I drank beer; sometimes until I couldn't walk a straight line if I tried. It is not a good feeling, as you probably know, and I avoid it now by not drinking. Any bouncing off the walls is not due to Bacchus overload, but to my constant, irritating, companion, Parkinson's Disease. If you should catch me weaving down the street, try not to label me a "no good drunk". Nothing good is usually the correct adjectives for the workings of PD, but "drunk", well that's just not me

While writing this missive, an incident popped into the part of my brain that still works.

It was 1969, my first year of teaching and I was rooming, in a 2 bedroom basement apartment, with 2 other teachers and Big Jim. For now I will call the 2 teachers the duke and the sheriff. Big Jim was halfheartedly looking for a job. He didn't have to get up in the morning, the three teachers did. This meant Big Jim could go out drinking at any hour and this particular night, he got wasted.

Before I continue, you must picture our bedrooms. Big Jim and the sheriff lived in one, and the Duke and me in the other. The rooms were identical, rectangular boxes with a window in the end wall, a rather large window which could easily be opened. The beds were placed against the long walls and between them, beneath the window, was a book case with a long necked goose lamp attached on each side. When I say "bookcase", we were nomads and did not buy good furniture so the bookcase was fashioned from cinder blocks with planks of wood for shelving. You can imagine, it was not the sturdiest of structures.

Big Jim came home late; the rest of us were sleeping. In his stupor, he crashed into a wall and woke me up. I heard him get into his bed and soon his snoring filled the apartment. I was in that twilight zone in which you are neither awake nor asleep when Big Jim yelled, loudly as if there was great danger abounding, "HEADS UP BOYS, HEADS UP. THEY ARE COMING THROUGH THE WINDOWS!!!!"and as he thrashed around, he managed to get his arm caught up in the goose lamp's electrical cord causing the bookcase to fall. This happened in a nano second and in one magnificent exit from his bed, Big Jim hurdled the debris on his way to the bathroom.....He didn't make it and his vomit splashed all over the hallway.

When Big Jim had shouted and run out of the bedroom, he had wakened the whole apartment. The sheriff immediately jumped from his bed but spent precious seconds avoiding the shelving and books on the floor. He came dashing out of his bedroom, oblivious to the mess Big Jim had made and like a figure skater out of control, landed on his bum in the slippery ejectile. He looked silly trying to get off the floor. The duke started laughing and I, well, I awarded the sheriff a 10.

When all was under control, Jim said sheepishly, "Sorry." to which the sheriff replied with a dry heave and turned on the shower. Big Jim cleaned the place up to the symphony of the sheriff's heaves. The duke went to have a cup of coffee; I went to bed committing the incident to memory so as to be able to write about someday in the future. Today that future arrived.

What's this got to do with PD. Nothing. No moral. Just a vignette; although if you weave sober and then drink too much, you may look like a fool. Just keep in mind this quote from the Bible...

“He hath swallowed down riches, and he shall vomit them up again: God shall cast them out of his belly.”

.

Invasion of the Lewy Bodies

Diagnosis confirmed, I began reading about parkinson's. It didn't seem so bad in my case because the medicine kept my life close to normal. I wasn't happy about having a degenerative brain disease, but I can't say it really bothered me. That is until a friend mentioned that her mother had died with parkinson's with lewy bodies. That was not the news I wanted to hear and so I began my research into lewy bodies. They are some sort of twisted protein moving into areas of our brains. Get enough of them in the wrong area and you have lewy body dementia. The bad news in the brains of PWP lurk these proteins. The "good" news is not everybody who has parkinson's will suffer from dementia.

Do you wonder if you have LBD or are going to get it? There is no test for lewy bodies. They can only be discovered by autopsy; therefore, you can't predict your predicament. Symptoms of the condition can vary from person to person; however, see your doctor if:

• you see things that are not there
• you can no longer concentrate
• you have parkinson's-like symptoms (tremor, stiffness, etc
• you have moments when you are lucid and other times when you are completely "out of it" and make no sense

There is a chance you have(LBD). If you do, it will proceed rapidly and there is nothing you can do about it. Scary, right. The thought of having to deal with that still lurks in the shadows of by brain but for the most part, I can ignore it.

If you want an excellent summary of dementia in general and LBD in particular, visit this blog.

Post scriptum I wrote this on the 18th and coincidentally the MJF posted an FAQ paper which is really worth READING http://parkinsonsand5htp.blogspot.ca/2011/05/what-are-odds-for-my-getting-dementia.html

Clearing away the mud

When diagnosed, I had a vague idea of the Parkinson's processes..... as I am sure all PWP did. We googled and googled, looking for answers. Afterall, it is not everyday that one joins the club of dopamine challenged people with a degenerative brain disease. We are an exclusive tribe and will only accept 1 in every 500 applicants in Canada. Once in, the candidate is encouraged to discover as much as possible about the main requirement for membership. There are thousands of articles online that can be read and studied but they are complicated and confusing or are too simplistic to be of use.

Well, some time back, I stumbled upon the KHAN ACADEMY. If you have never visited the academy, you should. One thing led to another and I searched "Parkinson's Khan" and found videos on youtube that use simple explanations to explain all that PWP need to know about their dark partner. There are several (11) that should be viewed in order starting with number 1. Where else would you start? Too logical, I started with number 10 concerning the management of parkinson's medication. I hasten to add I did watch the others, in no particular order. I highly recommend watching them

If you are a new member of the club, you should enlighten yourself immediately. The videos will ease your fear. Be optimistic, you do have a future and, wouldn't you know it, you are going to spend the rest of your life there so you might as step into it with a good outlook. Learn all you can about PD. Knowledge is power and power is.......who knows? But it feels good.

A mask of gold hides all deformities.

Remember Muhammad Ali at the Oscars, or some awards show, standing on stage with George Forman and accepting an award for "When They Were Kings"? George showed pride and confidence in accepting the award; Muhammad showed no emotion; his face a mask of indifference. Only the sparkle in his eyes betrayed his sentiments - pride and joy.

Among a multitude of symptoms, Ali has the Parkinson's mask.

Ali

A friend of mine wrote me "I heard choirs are a way to go for pd.... the singing works on air passages. One friend swears by it."

Sounded suspicious. How could singing help? I decided to research the topic, "parkinson's choir", and discovered this CBC article" Parkinson's choir may help 'masked face syndrome'and voice problems Singing appears to help people with movement disorder regain facial expression".

Interesting. I dug deeper and found this short video. It describes my situation to a "T". 8 weeks of speech therapy but neglected to practise at home. Thus my voice is going but now I can see a remedy - singing. Unfortunately it is too late for Ali. 30 or so years after diagnosis, Ali is severely disabled, has extreme difficulty speaking, and is confined to a wheelchair. His days of "float like a butterfly and sting like a bee" are long gone, but at age 73, he is still "The Greatest". President Obama described Muhammad as, "The man who believes real success comes when we rise after we fall".

Early on in my journey, my wife commented that I needed to show more emotion. She took my picture and I described myself as looking like Otzi, the mummified iceman. Fortunately, my momentary dance with the mask has passed. And singing! My singing voice could sterilize a frog at 30 feet. However, I better get that old guitar tuned up and when nobody is in the house, I will sing at the top of my voice to ward away the PD demons.

Oh, and I keep getting up after every time PD tries to put me down. Here's to Muhammad Ali.

I am the Lord of the dance said he

I first started to take a serious interest in music around the time Buddy Holly, Ritchie Valens and The Big Bopper were killed in a plane crash. I liked all kinds of music and to satisfy my hunger and that of my brother, our parents presented us with a portable record player about the size of a lawn mower (without the handle, of course). Still, it was better than the earlier version they had picked up somewhere, a veritable antique, no electricity involved; there was just a winding handle, like a crank on a Model T. On the one hand, it was good because it was chordless and could go anywhere,but on the other hand, you had to wind it up to get the turntable to spin and it always slowed down before the record ended so

All of my love, all of my kissin'
You don't know what you been a missin'

became

Awwll uff my lufff,awwww of my kissiiiin
yuh donnn knowwwwattyouuu binnn a missssssiiig

At this point you would madly wind it up again and the song would gradually go back to normal.

The new electric portable record player could play 78's, 45's and the ultimate 33 and one third formats. Do you remember stacking the records on the spindle or those little plastic things we put in the large holes of the 45's so they too could be stacked. Great times.

There was only one problem. With all of that music available, it was inevitable, a teenager had to learn to DANCE! Some guys took to it naturally. They had rhythm. Not me, I had no clue how to jive (in spite of my mother trying to teach me). The result was my poor girlfriend had to sit out the fast music and wait for a slow song. She got a respite from sitting at the side of the dance floor when Chubby Checker made the twist popular. Anybody could twist and so we were able to dance 80% of the dances. For some reason, that made her happy.

Why all the old war stories about dancing? Well, a loyal reader pointed me in the direction of an article of the benefits of dance as a strategy for dealing with PD. I love listening to music. I taught myself how to play the guitar and would sing to my children. But dance! That is the natural reaction to music. Sadly, I still have 2 left feet and I stick to my principle that you should always try something once, except maybe not murder or...... dancing.

But there it was in black and white. Dancing helps. Neurologic music therapy

Dance is a therapeutic intervention technique for motor dysfunctions. It is a rhythmic movement of the body to music, and this coordination of movement to music can be a critical part of music therapy for patients with movement dysfunctions. The combination of both music and exercise maximizes the function as therapeutic intervention.

Gait dysfunctions that are commonly noticed in Parkinson's disease are a flexed posture, shuffling steps, difficulty in stride length regulation, reduced foot clearance during swing phase, and increased cadence. Dancing can be used as a therapeutic tool to efficiently improve balance and complex gait tasks. One form of dancing is tango which incorporates numerous turns. The moves involve movement initiation, postural control, turning, dynamic balancing, random perturbation, and termination. The characteristics of these movements specifically aim for improving patients with Parkinson's disease.

God. Do I have to go back in time and learn how to dance! I would look the fool. Maybe I could "tango"!!!!Right, in your dreams! I tell you, if dance is required, I won't be a part of your therapy revolution. I would rather have tremors than dance. I would look like Elaine Benes in that Seinfeld episode. Dance! there is just no way ...well, maybe alone in my basement. In the meantime, for the rest of you:

Dance then, wherever you may be
I am the Lord of the Dance, said He!
And I will lead you all, and I can guarantee(
That we'll find a cure for that rogue PD

The chief function of the body is to carry the brain around. (Edison)

I am a proponent of using exercise as a cruise missile to slow down the advance of PD - maybe with a nuclear warhead. If the body's purpose is to carry the brain around, it is logical to conclude that the brain will function more smoothly and efficiently with a healthy body. That means "exercise". That's my opinion and I stand by it.

Now a reader has pointed me in a direction that supports my theory. He suggested this VIDEO. Yoga for the brain! Who knew? It all sounds a little weird, doesn't it? I mean pinching your ears while doing squats! Puhleeze, give me a break. But, after a bit of research, I discover it is not a scam. I am going to add Super brain yoga to my daily exercise regime. The method is explained HERE.

Our firepower grows. Our weapons of choice now include exercise combined with yoga for the brain, at least 4 - 5 times a week.

In the words of Fatboy Slim who rhythmically said:

"Don't be shocked by the tone of my voice.
Check out my new weapon of choice".

Keep the faith PWP, the future is ours.

P.S. Check out Christopher Walken's interpretation of the Fatboy Slim song.

Part of the Mystery is solved

I am alive and bored so I have to write. I am in a professorial mood so I can't predict what this entry will encompass. Let's think about the mysterious wall banging and other auditory hallucinations I have suffered lately. Living with a mystery can be an adventure in cybernetics. Is it possible to control the uncontrollable, the impossible, the unlikely? Unfortunately, at times, such a possibility can exist. Mystery is relief from ennui so why would we look for ways to control the workings of our brains?

Why not let the brain run amok and sit back and enjoy places we have never before visited?

The answer is, I don't know enough to answer my own query. The extent of my knowledge about the workings of the brain can be summed up as my brain regulates and controls me, not vice versa. The brain is in control of the subalterns of the nervous system. Maybe.

For we people with parkinson's, this problem of control is paramount. In an area of the brain there exists the substantia nigra. There is a war going on there between the brain and itself. The battlefield is becoming a ghost town as the cells that dwell there, and produce dopamine, die off for unknown reasons. Dopamine is a chemical that transmits signals within the brain to facilitate smooth movements of the muscles. The brain has lost control of that area of the brain ergo, we have lost control and we want to get it back. I am betting we will within the next 15, or so, years.

But you all know this, so what mystery was solved? Did I obtain control of the brain. Sadly, no.

You will recall that I have been having hallucinations of the auditory variety. Remember 3 knocks on the wall? Well, problem solved. For some reason, my ipad every so often, in the middle of the night, makes the sound of something, or somebody, knocking on wood. I discovered that when I stayed up later than usual a couple of days ago. Maybe I am not going insane! On the other hand, there is no explanation for the sound of breaking glass or someone calling my name. Hmmm there has to be a logical reason but at least the sound of knocking on wood has been completely cleared up (here the blogger "knocks on wood").

This entry is going nowhere but I feel better having written it. I am going to stop now, lest I lose this feeling of semi-euphoria. I must say that was a refreshing write! Kind of "other worldly", but it vanquished my ennui. I believe I will hit the treadmill.

You see, ennui and exercise are not compatible and exercise can hold the front line in the substantia negra. So get yourselves off the couch and get active. It is the only control you have over this condition.

It's too early for Santa!!!

I had the mother of all auditory hallucinations today.  I was working on my ipad when I distinctly heard footsteps.  At first I thought they were coming from our deck but I checked and nobody was there.  I thought I had just imagined it, but no, they started again.  Real footsteps coming from upstairs.  Was I going crazy?  I mean we don't have an upstairs!  We live in a bungalow.  The attic maybe?  Not much room up there.  "Relax!"  I told myself "It's just an hallucination.  It will soon go away."  Nope!  No such luck. The footsteps continued.  I was getting anxious about my sanity; that is, until I looked out of the window and saw a truck that specialized in eaves troughing.  The cleaners were on the roof. My wife had hired the company to clear the leaves out of the troughs.  I either didn't know about it or had forgotten.  No auditory hallucinations or poltergeists here.

  I wasn't GOING crazy.  I was already there.

Paracusia - bring it on

Who's that knocking on my wall? Who's that knocking on my wall?

I don't know, but I have heard it 3 times over the past two weeks. Three knocks on my wall but there is nobody there. Poltergeist? Maybe, but more likely it is the PD or the medicine at work.

"Paracusia" or "Paracusis" is a fancy word for "hearing things" or more exactly, "auditory hallucinations" and I have had a few over the past couple of weeks. All but two have occurred during the night just as I am waking (about 2AM every night, when I have to go to see a man about a horse). The first few times they occurred, I convinced myself that they were only a part of a dream that I was enjoying just prior to waking. However, in the past 4 days, I have heard glass breaking, just as I was dozing off. I looked over at my wife and it was obvious she had heard nothing. Then yesterday, I was in a small room with the door closed when someone called my name. It was so real, I answered but I got no answer in return. I opened the door to see ....Nothing.

Frightening? Nope. Intellectually I know what is happening and I just go with the flow. I can't avoid it. I expect hearing things may become part of my reality.

Not all PWP suffer (enjoy?) hearing or seeing that which is not present. PD paracusia is most frequent if one or more of the following is a part of your existence:

• you are taking dopamine agonists or anticholinergics
• you are older
• you have had PD a long time and are into advanced stages
• you have severely impaired vision
• you have a sleep disorder.

Dreams or auditory hallucinations? Which name should I give to my wayward imagination? I am not sure yet. I know I am hearing things, but I have yet to decide where I dwell on the Fujita Scale of sanity (or "insanity" as the case may be.) Until I make that decision, I shall continue on with indecision and enjoy it while it lasts.

“O! that way madness lies; let me shun that.”

Today's sermon is about smell. We who live with parkinson's cannot detect odors. Our sense of smell has disappeared or is on its way out and now; now we are saddled with a new symptom. Apparently we smell. We radiate a musky fragrance.

"Fragrance" is a noun defined as "The quality of having a pleasant odor" while "musky" is an adjective defined as "relating to, or having the odor of musk." MUSK! MUSK! That's an ox, isn't it? I have never been near one so I don't know their smell, but I reckon it isn't pleasant. They appear to be shaggy, mean looking creatures who probably stink. Surely we don't have that humiliation to go along with a voice like Phyllis Diller's and other debasing qualities!

I know,I know, you are thinking I am crazy. Nobody has mentioned that you radiate a musky smell, but it's true. Check it out. Of course, and let's hope, the lady in the video may have a super human nose. I don't want to treat her with disrespect, but come on.... "musky"?!. Maybe she has the problem? Maybe she is a smell savant .... Musky.... I don't want to smell like an ox, and isn't musky also associated with death - like *Egyptian mummies? Oh, the smell expert probably means well and there are hints that the cause of her uncanny nose will lead to a better understanding of the disease in which case I forgive the lady with the impertinent probiscis.

Here I take my leave for I must go now and scour my body with lye soap. Musky!! How nice. If we should ever meet, you had better stand downwind of me, lest you think me a corpse.

*It has been pointed out to me that mummies smell "musty" not "musky" in which case you can ignore the picture below

Heading by Shakespeare,

Failure is not an option

This week we learned (1) a cancer drug appears to have a positive effect on PD (2) Canadian researchers are having some success with stem cell therapy for PD (on mice).

Both are good news, especially if you have early onset PD. Those of us in the twilight of our years probably won't benefit. But, Mr. Scientist, don't let my whining stop your good work. Maybe you will be successful sooner than I believe, maybe not. I hope you won't let the complaints of an "older" chap or your fear of failure get you down. You are bound to fail many times before you succeed and I, for one, can wait Keep digging science people; find that cure.

In the words of Winston Churchill, "Success consists of going from failure to failure without loss of enthusiasm."

I believe success is just a step away.

Damn! Now look! I have gone and got my hopes up again.

This week's statistics

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Here be dragons

"HC SVNT DRACONES" The story goes that explorer's maps of old would warn of dragons in unexplored territory. In fact, there was only one globe that contained the phrase but, let's not drift off into academia. Trivia is not the point of this entry. The point is, unfortunately, there might really be dragons in the unknown.

So,tadaaa, it is time for a metaphor.

For PWP, the future is our unknown. There might be dragons, might not. But, things are looking up. In 2011, Dr. Oz commented on Oprah that within 8 or 9 years, there would be significant advancements toward curing parkinson's through stem cell therapy (Watch the video) But 4 years after his prediction, the future is still unknown and for some PWP, there be dragons there. To them, the future is bleak.

Not for me. I remain positive, a bit shaky, but positive that my future's so bright, I have to wear shades. That is if you don't count the fact my future has only 10 - 15 years left in it. I expect my "good before" date will arrive around age 85.

But, I don't expect to die with parkinson's. I choose to believe Dr. Oz and guess what? When the uncharted territory was finally explored, the explorers found no dragons.

Here endith the metaphor,

Old minds are like old horses.....

....you must exercise them if you wish to keep them in working order. (John Adams).

I was looking through my articles and found a couple of useful sites about exercise and parkinson's. I can't recall the location of the sites, but here are some excerpts

• Parkinson's disease is a neurological condition characterized by muscle rigidity, a lack of voluntary movements and tremors. The condition is caused by degeneration of dopamine cells in a part of the brain called the basal ganglia. By promoting the synthesis of dopamine, exercise can help to counter some of the symptoms of Parkinson's disease. A paper published in the "Journal of Neuroscience" in 2007 found results in support of this theory using mouse models. Giselle Petzinger, the principle investigator of the study, told "Science Daily" that "surviving dopamine cells in our animal models -- made to simulate what Parkinson's patients suffer with -- subjected to intensive treadmill exercise appear to work harder."
• Exercise has been receiving increasing attention as a means by which patients with Parkinson's disease can improve their functioning. Bicycling, (tango) dancing, and tai-chi are just a few examples of physical exercise that have recently been featured in the media and touted to favorably effect parkinsonian symptoms. Most clinicians would agree that, in general, exercise is important to maintain one's health and overall condition. It therefore makes perfect sense to advocate exercise therapy for patients with PD so that they can better compensate for their impaired motor function.

  The effect of exercise on motor function, however, may go beyond just that. Animal studies suggest that exercise regulates brain function to modify parkinsonian features (1-3) while there is some evidence that it also protects against neurological injury (4,5). Human studies in patients with PD also suggest a beneficial effect of exercise on motor control (2,6,7) but the optimal type of exercise remains unknown. Several studies comparing high intensity resistive exercise with less intense forms of exercise are currently ongoing. Even less clear has been the matter of how exercise would bring about changes in the nervous system that result in improved motor performance.

  The study by Marta Vuckovic et al. in this issue of Movement Disorders addresses exactly that question. The authors offer compelling animal data to suggest that high intensity exercise leads to increased dopamine D2 receptor expression.

So now I have to make my exercise more intense. I need a treadmill. I have only tried it once and the fact is, I was bored silly. With the onset of PD; however, I find my opinion is changing. I will practise the self-flagellation of running on the spot for an hour, no scenery, no wind, no noises,etc. I will, you know, probably do it, make myself do it. My tendency to OCD will overcome all that silence; that sense of aloneness, that isolation. Hmmm... an hour or so to myself. Again,hmmmmm. Sounds heavenly. Doesn't it? So, let's just hold on! Think the situation through. That doesn't sound so bad. I will be able to zone out and listen to music. Final hmmmmmmm.

Now all I need is that treadmill.

I believe in the importance of perseverance

A reader brought up the possibility that exercise might deplete the amount of available dopamine. Interesting. We certainly produce more dopamine when we exercise but I can't conclude that means we are using up a finite amount of the stuff. Well, maybe it does, but that does not fit into my vision of the future. Rather, I believe that exercise is good for the brain and the extra dopamine comes from living cells that will keep on producing until the cell dies off as a result of that mysterious force that killed the other 80% of our dopamine secreting neurons. Maybe there is an unlimited supply as long as the cell is alive. Who knows? Not me?

Now I don't have a clue if I am correct, I'm just another person with the shaking palsy; however, my experience has lead me to 2 conclusions that force me, sometimes against my will, to keep on walking and other light weight training. Here are my conclusions:

• exercise can reduce the severity of PD symptoms. If I forget my medications when I start my walk, my right hand will start with its embarrassing tremor. The PD cha cha. But, 15-20 minutes into my walk, the tremors have stopped.
• Exercise will slow the progression of the disease. That is my position on the subject, resulting from years of believing I am always right even in face of opposite evidence. I can be very stubborn. I think it is a family trait.

I am guessing the reader wants the opinion of somebody who knows what he/she is talking about. the following is an excerpt of an essay found HERE

,Although the condition can’t be cured, symptoms can be kept under control with medications, but in some patients surgery may also be required. As for natural remedies, studies suggest that one of the most affordable solutions for PD sufferers is exercise and physical therapy.

A review published in the journal of Translational Neurodegeneration in 2014 showed that various types of physical activity, including resistance and aerobic training can improve the cognitive function of PD patients. Researchers at the University of British Columbia have investigated the effects of exercise on cognition, in patients suffering from Parkinson’s disease as well as in animal models.

Although it’s still unclear how much time PD patients should spend exercising, or what form of physical activity they should perform most of the workout time, the reviewed studies have shown that exercising promotes neuronal proliferation, neurogenesis and neuroprotection.

Similar results were obtained by scientists at the Cleveland Clinic, who have found that PD patients who pedal on a stationary bike 30% faster than their regular rate can gain in aerobic fitness and improve their motor function, coordination and manual dexterity. According to scientists, the improvements were retained for a couple of weeks post workout.

A recent study conducted by researchers at the University of Southern California showed that exercise affects the brain, patients suffering from Parkinson’s disease who exercise regularly being able to move more normally than those who don’t practice physical activities.

.....it's unlikely exercise can completely reduce the symptoms of this neurodegenerative disorder, the existing research suggests that exercising can reduce the manifestations of this condition, improving the patient’s quality of life.

So I learned something today about dopamine and exercise, thanks to the reader. It's what you learn after you know it all that counts.

Did you just drop in to......

see what condition my condition is in?

Reading the last few entries, I think I am giving the impression that I am totally symptom free. Outwardly, that is the case but...

,
• when I open mouth and speak, anyone further than 5 feet from me cannot hear me; and
• If they can hear me, they probably think I am stupid as my brain freezes and I can't find the right words; ergo, I speak "unsophisticated speak", interrupted by moments when I go completely blank. "Unsophisticated speak"? Right! It is more like "moronic" speak!
• Sleep, if it really exists, is a distant memory. Last night I managed only 3 hours. Totally fatigued at the moment
• And then there is the joy of festination. The problem is, I am unable to "heal-toe" without putting my mind into it. I quickly get distracted when forcing the "heal-toe" mantra and I have suffered the strange walk/run common in PD. As you know, it ends in a face plant. Not much fun!
• sometmes when I am relaxing or just dozing off, I super-twitch. It is so violent, it awakens my wife.
• If I don't twitch, my leg may go into spasm, the likes of which defy description. I can only get rid of it by standing for a few minutes.
• Finally there are the dreams - virtual reality in high definition, in which I cry out and my wife has to make sure I am not dying.

So there you go. That is the condition my condition is in. I have symptoms. Too bad; so sad. Fortunately, I can live with them and they don't get me down. But hey, thanks for dropping by.

Pageviews to date...40,506. Comments welcome. Merci beaucoup.

I'm forever blowing bubbles; pretty bubbles in the air

When to start on drugs? I see it as a choice - quality of life when I still feel young, or endure the tremors for now and have a better life later. Tough choice, but I did it and have yet to regret it....

I have been seen by 3 neurologists. The second neuro I saw described his practice as a "ham and cheese office" meaning he didn't usually take long term patients (I was familiar with him and had requested he see me). The first neuro I had seen told me I should not take drugs until my symptoms interfered with my life. "After all," he said, looking over his glasses, "You are not a watch maker." Some attempt at humor. I would have stayed with him had I not been acquainted with the second doctor who immediately started me on mirapex and amantadine. Thank you God. I have been for the most part relatively free of noticeable symptoms. My life is approaching normalcy. The third neurologist, a well known specialist in movement disorders, added L-dopa/carbidopa, in my 4th year to join to my required "cocktail of PD drugs".

So I put normalcy now ahead of possible problems 10 years from now. I took the drugs and continue to do so 4x per day, every day. But query, when should you start your drug regime? I have no answer because, it being the nature of the beast, it naturally follows, the starting date for drugs is different for every person. I lucked out. You have to listen to your doctor and perhaps get a second opinion and then make a Hobson's choice.

Or, as Yogi Berra put it, "When you get to a fork in the road, take it."

For me, I took the horse offered. If I am wrong, I will regret it later but for now, I am riding tall, but my background music playing deep in my psyche is Dean Martin signing:

I'm forever blowing bubbles
Pretty bubbles in the air
They fly so high, nearly reach the sky
Then like my dreams they fade and die

s

The supreme art of war is to subdue the enemy without fighting. Sun Tzu

I am at war with....my blankets. Getting out of bed is easy, once we purchased a shorter bed. Prior to that purchase, getting off the bed was an adventure. Now,no more adventure in descending. After I have expended all of my energy in rising to a sitting position, I just let myself slide to the floor.

It is getting back into bed when the battle of the blankets becomes monumental. Do the blankets deliberately wrap themselves around my body as I thrash around trying to get under them?

Wait, I hasten to add that this might not be the fault of PD. It could be something else. I have a tendency to blame any ache or pain on PD and I find myself trying to avoid such conclusions in the vain attempt to believe the "disease" is not advancing.

In fact, most physical problems are more than likely caused by PD but due to the lack of typical PD symptoms, at times I wonder if I was misdiagnosed.

Not a chance! My heavy artillery, my drugs, are simply keeping the symptoms in check while underneath, PD is robbing my brain of dopamine cells. It will eventually win..... unless someone, somewhere, devises a nuclear bomb for eradicating the disease.

I am not complaining. I know I am one of the lucky ones. Five years following diagnosis, and I appear, at most times, to be "normal". But, I don't fool myself, PD is advancing. It is the shaking palsy I am at war with, not my blankets.

My blankets are the expeditionary force. The drugs are simply my weapons of choice.....for now.

October - Come she will

Summer is over and the stale smell of October is in air. Or, maybe it isn't....It is the smell of dead leaves, rain, and a paucity of newness.

I say there "maybe" a stale smell in the air, because I wouldn't know. See my earlier rants on the subject. You might remember I have lost practically all of my sense of smell. It deserted me about 10 years ago when I realized that I could not smell the odor of raw sewage in the basement of my house (that tale can be found in an ealier entry). My ability to smell drained away gradually until now, it has to be a very pungent smell for me to detect it.

Sometimes I miss that sense, you know, like the smell of turkey cooking at Christmas; other times, I find it convenient, for example when my baby grandson fills his diapers (oddly, even though I can't smell his poop, I gag at the thought of changing him.)

From the MJ Fox Foundation"SMELL LOSS"

An often overlooked symptom

While most people with a reduced sense of smell will not develop Parkinson's, the majority of Parkinson's disease patients do have reduced sense of smell. Loss of sense of smell is often overlooked by diagnosing physicians as an early sign of PD. There are of course many other reasons a person may be experiencing a loss in sense of smell.

If you believe that you may have trouble with smell, consult your doctor.

Why am I losing my sense of smell?

Little is confirmed about what causes the early, pre-motor symptoms of Parkinson’s, such as hyposmia, this loss of smell. But one prevalent theory in Parkinson's research about disease progression has to do with the protein alpha-synuclein, whose clumping is found in all people with the disease.

This theory, based on the research of Heiko Braak, MD suggests that the disease may start not in the substantia nigra (the region of the brain where loss of nerve cells leads to the dopamine deficit experienced by people with PD) but in the gastrointestinal system and the olfactory bulb, the part of the brain that controls sense of smell. Researchers have hypothesized that the alpha-synuclein clumps found in all people with Parkinson's may form in these parts of the body first, before migrating to other parts of the brain. Should this turn out to be true, and if researchers can find the clumps and break them up before they reach the brain, it may become possible to treat Parkinson's before major neurological damage occurs.

“Candy is full of taste. But so is shit, because taste is full of smell.”( Jarod Kintz, This Book Has No Title

You don't need to reach the summit to realize a mountain is high.

Man, this place, St. Joan de Mediona, was beautiful. It is in the wine-growing region of Catalonia. You know, the Catalonia that wants to separate from Spain. All I can say is bona sort. (that is Buena suerte to you Spaniards) There are only 800 people in this village living together peacefully in close quarters.

My good friend, with whom we stayed, has cancer, his prognosis is looking good, thankfully. He has a beautiful family.

Mountains, mountains, everywhere and I need a drink. My friend and I are metaphorically climbing mountains, prolonged and incomprehensible, thirsty stuff, but if and when we reach the top, we win! We are cured. His cancer vanishes; my PD becomes the stuff of legends, a sort of grand slam small-poxian victory. In the meantime, we can see the summit and know that cure awaits us - someday.

I didn't climb any mountains in Mediona, but since flat ground around Catalonia is all but non-existent, I was always ascending or descending, usually in a maze of narrow streets, but, here is the good news: I did it without the use of my trekking poles and never, not for one second, did I feel like festination would interrupt my triumphant stroll. We trudged about 4 miles everyday (4 days). A couple of times I forgot to take my medication and would start off the day with tremors that would quickly disappear as the miles went by, slowly. My God, how slowly I walk!

CONCLUSION: Exercise works. It can diminish the symptoms of PD and, I believe, the lack of symptoms means exercise is slowing the progression of the disease. So work boy, work, and the truth of my conclusion shall be revealed.

We all have the same mountains to climb.

I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made straight and the glory of the Lord shall be revealed and all flesh shall see it together. Martin Luther King, Jr.

Well, I am not so sure about that glory of the Lord stuff, but it doesn't hurt to cover all bases.

"Dream big, like the Eiffel Tower"

It is not very impressive in pictures but when you stand beside it and look up, WHOA, VERTIGO! I am talking about the Eiffel Tower rising over 980 feet, just to poke your god in the eye and remind him/her who is boss in this neighborhood. It rises in all its glory practically in our backyard, so we have gone over a few times, day and night. This thing is massive, intricate and beautiful. The crowds are a deterrent but, what the hey, it is the most popular attraction in the city.

The sight of 3 machine gun toting soldiers on patrol looking for bad guys, while initially filling me with confidence, did not fill me with confidence, if you know what I mean.

But enough of the travelogue. My purpose here is 2-fold. First to tell you another human dog story. Stories in which the owner thinks the dog is human. You might recall the guy at South Beach berating his dog for barking at another dog "Stop it. I don't even know you anymore!". This new human dog story took place at La Tour Eiffel. The owner said to the dog, "Let's go boy" and the dog ran ahead onto a side road. The owner stopped the dog and very gently said,"Now, did we stop and look for cars. No we did not...." and the rest of his lesson was lost to me as we moved further ahead. Enough to make you laugh.

Enough to make you cry.

My second purpose is to warn the PwP tribe to take their medication in a timely fashion and try not to miss a scheduled dose. If you do, for many of you (us) you will lose your voice and have "brain farts" forgetting words and speaking too softly to be heard. It makes intelligent discourse impossible. It is best to remain silent and avoid the sympathy of those around you or take your voice training more seriously than I did.

There is danger here. If you keep on low talking, you might convince someone to wear a puffy shirt on TV and become the object of ridicule in an episode of Seinfeld.

I plan to go back to my voice therapist and take the training seriously this time. I urge you to do so too.

A private message to my friend with the unused training apparatus in her basement (you know who you are). I got you a present that will conjure up my thoughtfulness in bringing a piece of Paris home for you.

If it doesn't itch, I will wear it.

I am here in Paris, the city of sights. There is a chic here that I did not know existed. My personal style is, well, maybe best described as teenage grunge.....kind of a prairie meltdown. In this city, where men wear scarfs in the summer and not to ward off the cold, I stood out like the Eiffel Tower itself. (Note to reader: The use of the past tense in the last sentence is deliberate, because I got what I needed - a crash course on style and chicness.)

Chicness: according to Collins English dictionary, a noun meaning "the condition of being stylish or elegant

Well, let's pretend "elegance" is not required. I had to be in style. To solve my condition, my wife took me shopping and upgraded my personal style with a jacket that has all the flavor of a train porter in the 1950's or a baccarat dealer in Monaco. But I like it, and I no longer appear to be a prairie bumpkin. My only fear is that I now dress so well, people might think I am gay (not that there is anything wrong with that!)and I would hate to disappoint some callow fellow.

But, enough of GQ and on to PD.

You remember that quaint joke about the handicapped guy and the TV evangelist?

Drowning with religious fervor, the evangelist places his hands on the head of the man on crutches and appeals loudly to god,"Lord heal this man" and removing his hand he adds, "The Lord has healed thee, throw away your crutches and walk." The man enthusiastically drops his crutches and......... falls flat on his face!

Not much of a joke you say? Well I tend to agree. I have included it as a preface to my story. I have thrown away my crutches (my trekking poles) and have not fallen flat on my face. In fact, I have walked at least 4 miles each of the last 3 days, sans poles, and have not felt the cruelty of festination once (here the blogger touches wood). Granted my race walking days are over; I have only one speed - glacial, but it feels good.

So, if you see a stylish slow walker passing by, wave, it might be me, or Stepin Fetchit in disguise.

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The moan zone beckons, so be strong

I believe I have the tremor dominant form of PD. I remember the first time I noticed the tremor. I had put in an hour in the swimming pool followed by some weight training and a run indoors. I left the building feeling proud of myself, thinking I had worked so hard it was causing my right hand to shake. It faded away a minute later and I thought nothing of it. For some time after, PD would only make an appearance after a good run but then, one morning while I was on vacation, the shaking started spontaneously, without the provocation of any instigator. Diagnosis: Early stage Parkinson's.

You all know that not all PWP have a tremor. About 20% are tremorless and for the other 80%, while tremor may be the most noticeable symptom; we are not immune to the other delights of the condition. Parkinson's does not follow a script; it does what it wants to do.

It turns out that if you have to have PD, tremor dominant is the type to have because it seems it is the slowest to progress. But, PD can ignore this finding and send you to its last stage as quickly as it does with non-tremor victims. You just never know. But fight the good fight. It would be easy to submit to the eccentricities of the enemy. We must think positively and avoid the alluring darkness.

Have I mentioned you should also..ah.. exercise?

Quit farting around PD. Make up your PD mind because I have made up mine. I am going to thrive in spite of you.

Page views to date 40,510. Wow! Who would have predicted that!

Mirror, Mirror, on the wall.....

Why isn't there a direct correlation between thinking and the condition of the body? Seems to me that our brain maintains our self evaluation at a youthful level while our body grows old and deteriorates. When I look into the mirror, I don't think that the 69 year old face looking back at me is the real me. That's not me. I don't feel the age of that old reprobate! I guess most of us are doomed to go to our deaths thinking "I am much to young to be at this point in my life!"

Can you hear the gods chuckling and saying to each other "There is an indirect correlation between the vanity of humans and our prime directive of 'who gives a shit'."

Well, PD is trying its best to make me grow old, both in body and in mind, but I am fighting back. My thoughts are young and as yet are not hampered by Parkinson's. I don't dwell on the future and try to keep my mind free of the annoyances of PD. However, my body....well... that is something else. When I coached track some 20 odd years ago, I would race my athletes over 200m and marvel at their suppleness and speed but I could keep up with them for the first 10 or so metres. Not now. I can't run anymore. That little dash of freedom has been stolen from me; so I walk, yesterday 15000 steps. My legs, heart and lungs are all in good shape and I am working on my upper body with a weight regime.

These exercises are not born of vanity but of a desire to slow the progress of PD. I am 5 years post diagnosis and with the help of drugs and workouts, outwardly, I am symptom free. Inwardly, I do feel changes coming, but those changes are so mild that they don't populate my thinking too much, too often.

Happily, my neurologist recently told me I was as close to being perfect, (as far as the rapidity of PD's onslaught is concerned) as anybody he has seen. Another neuro, when told about my exercise regime, commented that what I was doing was the best treatment for keeping PD at bay.

If you are a PWP, take my advice, exercise, and try to keep your body as young as your thinking. Exercise is your best medicine for achieving that equilibrium.

Oh, and avoid mirrors.

Hither, page and stand by me

You might recall the legend of Good King Wenceslas helping his page to carry on through the deep snow. Well, we people with parkinson's eventually will need a good king or queen to help them along their journey. They are referred to as "caregivers". I don't need one now but when I do, I know I will have the best. My wife already tracks my doctor's appointments, my medication, my nutrition and my general well-being. She knows that in the afternoons a wave of fatigue consumes me and I am pretty much useless for a couple of hours. It is during this time that she makes sure of my comfort - taking on tasks that were on my list of things to do. We should all be so lucky.

Anyway, I thought I would pass on these gems of wisdom for the caretaker.

1. Don't panic when you first hear the diagnosis. It is not a death sentence. It usually means that somewhere down the road, the PWP might have significant physical problems. Until that time, read and become acquainted with the condition.
2. Learn to recognize any deterioration in the PWP and attend any doctor's appointments with your charge to make sure he or she knows about any new symptoms
3. Be supportive but don't try to predict the future, you might raise false hopes and besides, believe me, the PWP knows what is in store for him.
4. Keep track of his medication but don't be a pain about it. If you are going on a trip for instance, make sure he has sufficient supplies of his drugs. Just ask, gently, "Do you have your meds?"
5. Realize and understand there will be good days and bad days for both of you. During his bad days, check for depression, it can attack at any moment.
6. Make sure he is eating well. Good nutrition is thought to play a role in slowing the progress of PD.
7. Encourage him to exercise. This is the best medicine for slowing the deterioration of the PWP.

I could go on and on but these are things that are in the arsenal of my good queen and so far we manage quite well. Five years into the "disease" and I can define PD as just an annoying inconvenience.

As Michael J. Fox once remarked, "In fact, I lead a remarkably normal life."

Me too, M.J., me too.

Thanks to my wife and the drugs!

Searching for the void

A good friend of mine suggested I should try daily meditation and offered this site by way of explanation. Here is an excerpt:

In 1995, I developed symptoms of advanced Parkinson's disease with severe tremor, festinating walk, unintelligible speech, mask-like facial expression, significant pain, constipation and urinary incontinence. During my three year journey to a symptom-free state, I utilised a number of self-help strategies and complementary remedies. Prime among my activities was daily meditation, and involvement in a weekly meditation group. I observed that, while meditating, many of my symptoms reduced in intensity and, over time, this intensity reduction lasted for some time after meditating. Other benefits I noticed were improved sleep patterns, clearer thought processes and, interestingly, improved relationships with work colleagues. If I missed my daily meditation for any reason, I found I was less able to make decisions, my tremor increased, and I felt generally less well.

I just don't think I could sit still for long and empty my brain. I see meditation as the pursuit of nothingness and I would inevitably get distracted by something shiny. I think I almost achieve a meditative state while walking. I let my mind drift to the point that I can't remember what I was thinking about a few seconds after thinking it. At these times I am aware only of my posture and the odd car that passes by and breaks up my mindlessness. If that is meditation, then I am an expert. However, I think I shall give the real thing a try. I can't do it cold turkey, I will need a little help.

A few years ago (about 40 of them that is!) my wife and I went to see a stage hypnotist, Raveen. He was very entertaining and after the show, we purchased his records (vinyl, of course) one of which involved relaxation. Soothing music with his hypnotic instructions actually did put your mind in another place. I plan to scour the net and find similar recordings and see if I can reap some of the benefits of meditation.

It is like taking chicken soup to cure a cold - it may not help, but it can't hurt.

I was a peripheral visionary. I could see the future, but only way off to the side. (Steven Wright)

You might remember early on in my PD voyage, I saw things out of the corners of my eyes. Not hallucinations because they lasted only part of a second, or less. The included an astronaut, giant man, etc. etc. Well I now have the comfort of knowing that other PWP have enjoyed the same experience due to the fact that PD affects our peripheral vision. Why? I don't know but I came across the following in a Parkison's UK Forum, and it made sense to me. I have the author's approval to reprint it here.

peripheral vision and improving pd symptoms

For the first time in years, I am sitting with my arms and legs relaxed. Usually my left arm is doing Napoleon impersonations. But right now it is calmly resting on my knee.

How has this happened?

I added opaque side shields to my glasses that block peripheral vision.

Why should that matter? This is only an amateur theory but....

1. The peripheral vision process is separate to the main focal vision processing
2. PD has a major effect on the peripheral vision which is why we see things that aren’t there out of the side of our eyes.
3. The corrupt peripheral vision has to be integrated with the main focal vision.
4. This integration with corrupt data corrupts our vision as a whole and affects other physically close areas of the brain that control movement.
5. Blocking out the corrupt peripheral signal should improve our vision’s clarity, reduce eye movements, reduce startle responses etc

By the way for the first time in years I am touch typing with two hands.

This experiment has been going only for one hour, hopefully the effects last. Side effects:
You look ridiculous
You might get run over by a bus.

This may be a placebo effect and may not have any effect on other people, but I’m feeling good right now.

Cheers
Turnip

Sounds logical, doesn't it.

By the way, I highly recommend Parkinson's UK

As an adult, I miss yielding to the temptations I dared to conquer in my youth

I was 10 or 11 and living in Truro, Nova Scotia. The Stanfield mansion and grounds were on my way home. The estate had a large swamp on its right boundary that stretched far along back, past other homes and businesses, to the main highway. Between the mansion and the swamp was the Stanfield's apple orchard.

TEMPTATION! (noun)- a desire to do something, especially something wrong or unwise.

There it was in all its magnificence. A real orchard. Apples for the taking. An orchard just waiting to be raided. And we did. Frequently. Climbing trees and grabbing as many apples as we could carry and generally covering ourselves in scratches and glory. But fate intervened. Some cruel town politicians decided that there should be a wide river of mud and, in places, quicksand, cut through the swamp from the main highway to the right edge of the Stanfield estate. We were beaten; now we were blocked by a high iron fence across the front and left boundaries of the estate and a river of what we thought was quicksand on the right. No more apples.

Yah, right. A little old river wasn't going to stop us! We were more determined than ever to yield to the temptation to get across that river to our apples.

Aside: You have to imagine the likes of a river of molasses. Our river was composed of a thick, smelly, oozing mud, with just a hint of water floating atop the bottom sludge. It had the consistency of, well, molasses, Maybe a touch denser. But, we were the sons of soldiers. We could surmount any obstacle.

It took a few weeks to get up the courage, but the temptation was just too irresistible, a force of nature in 11 year old boys. We gathered up boards and laid them on top of the putrid quagmire and ever so lightly we stepped onto them to make the crossing. No, nothing happened, the slough carried our weight easily. One boy did fall in and the rest of us almost followed, we were laughing so hard. We pulled him out (which was not easy) and continued into the orchard, but something was wrong. There were tall plants throughout the orchard. Plants that we had never noticed before but now seemed to be everywhere. We stopped. Something fishy was going on. Oh well. Were we going to let these plants stop us? Out of the question. Through the plants and up the trees, heavy with apples for the taking. And take them we did, anywhere from 5 to 10 per person. Can't stop us Mr. Stanfield.

It was on the way home that we noticed a problem, our arms and legs were covered with blisters. We never raided that plantation again. The river could not stop us but stinging nettles could. We were the victims of our temptation and we suffered greatly for it. I don't know if the nettles were planted there deliberately or whether they grew naturally and this was a bumper crop. To this day, I can't eat an apple without remembering those telltale blisters.

OK, why bring this up now? What's it got to do with PD? Everything. It has to do with temptation. Temptation and PD. For example, today I felt really good and left the house without taking my morning meds. I was feeling alive and was tempted to walk faster than usual, using the movements of a cross country (nordic) skier. It is possible with the trekking poles to emulate those athletes' motions and build up a little speed. I resisted the temptation and it proved to be the correct decision. The last half of my walk was ruined by the "feeling" in my legs of the parky gait. Had I picked up speed, I am certain I would have encountered my old friend, festination. Believe me, once it starts, it can't be stopped. You will fall. You will hurt yourself.

Then there is the "why me" temptation. Why did I get PD. I have been good.

The best answer is Why not you? What makes you special? You have PD so now do something about it. Read and learn. Exercise. Do something. Resist the temptation of the "Why me" syndrome lest you get stung by metaphorical nettles.

Say with me "I will avoid feeling sorry for myself. I will avoid ignoring my condition and do something stupid like speeding on my walk and most of all, I will live in the present and ignore the future.

Thus endeth today's responsive readings

"The beauty is in the walking – we are betrayed by destinations"

I know. I know. I know. I have brought the topic up in earlier posts. Well, if I wasn't certain before, I am now. Walking is beneficial to PWP. I think it not only slows down the progress of the disease, it also suppresses symptoms.

How do I know? I don't really. It is just a "feeling" I have, based on observation.

For example, there have been several times in the past month where I have neglected to take my medication for as much as 8 hours without any effect on my tremor, gait, balance, etc. I think these symptom-free, non-medicated, moments are directly related to my walking and 5 years since diagnosis, not much has changed for me symptom-wise. Oh, I have the occasional joy of festination- 3 bouts in 5 years, but if I concentrate on "heal toe, heal toe" I can walk a normal walk. Using trekking poles increases the benefit of walking. Poles and an ipod, that is. Without one or both, I grow bored after 45 minutes and return to the stable. Today, I made use of both, with the result that I walked over 5 miles (10,800 steps)in a little over 1.5 hours. Not a great rate, but I was day-dreaming all the way.

Often I use these walks to priorize (prioritize?) elements of my workday. My goal is 20,000 steps in one session. Kind of like wishing on a star but so what? If I can visualize it, I can do it.

Of course all my bragging can be off-putting to others. A good friend, jokingly (I hope) sent me a quote by Noel Coward: "I like long walks, especially when they are taken by people who annoy me." Well, I will continue to annoy you all by proselytising my message to the non-believers. Be aware. I can't talk, but I can still write.

Here are today's readings:

1. Could brisk walking be therapeutic for people with Parkinson's?
2. Brisk Walking May Help Curb Parkinson's Symptoms
3. Brisk Walking Improves Many Parkinson’s Symptoms

I've got to admit I'm getting older

I remember taking a class in university, long ago, in which we were asked to predict a future event that had more than an even chance of coming true. I predicted my death in the year 2030, a date so far in the future, I couldn't imagine it. Now, as that date is getting closer, I wish I had chosen a later date, even if it means living with PD. Things are just getting good.

Dr. Seuss said something to the effect that you shouldn't be sad when a death happens, you should smile that a life had ever occurred. And, I do, smile I mean. But fighting the shaking palsy makes it harder to smile and its full effect really hasn't hit me yet (5 years in). Every so often I get a hint of the future, or so I think, but then I am forced to conclude I can't blame PD for every little ache or pain. Sometimes the rogue is stupidity or carelessness or whatever, but not PD.

For example, this past weekend, I was sitting on a plastic lawn chair in the yard at our cottage. I was talking to my daughter and my wife, who was holding our sick, year old, grandson. Suddenly, without warning, my chair was tipping over sideways. My wife yelled to my daughter, "help him" and she did, laughing the whole time. It seems I had placed my chair partially on a patch of clay that had grown soft with the heat and moist with water from the pool and one of the back legs on the chair had simply buried itself in the "mud". Thank goodness that was all it was! I told my wife I had thought it was PD affecting my balance. She had thought so as well. But the ending was happy and I had another memory to make me smile.

Still, I wish I had predicted my D.O.D. as 2040 or more.

I continue the good fight against my enemy. I walk. About 5 - 6 miles a couple of times a week (minimum 11,000 steps) and less the other 5 days, but never less than 3 miles. I aim for a minimum of 10,000 steps and my success is variable. I can tell you, I get slower each time. PD will slow you down and you might as well accept that.

The best place to walk for me, is at the lake, around 6AM. All is peaceful and quiet and nature is at its best. Today, while crossing a creaky, well-used, footbridge (cross at your own risk), I stopped to watch a beaver repairing its dam and all was well with my world. At that moment, I was neither dwelling on the past nor worrying about the future, I was entirely in the present. That's life as it should be.

Still, about that prediction. 2030 is only 15 years from now!!!!!

"And it really doesn't matter if I'm wrong, I'm right. Where I belong I'm right. Where I belong"

Boundary Creek across from the marina in Winnipeg Beach, just after sunrise

Statistics - thanks for reading

Statistics for the past week

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Total to date 38,802

Fear of dementia can be a butterfly kiss

One lady on a PD forum announced that she had just been diagnosed with Dementia with lewy bodies. I decided to read up on it. Whoa! Scary! I hope it goes well with her but her future does not look bright.

Having scared the ________________(fill in the blanks)out of me, I researched types of dementia. You know. Just for fun. Seems there nine different types of dementia and some have subsets with similar, but different symptoms. Here are the top six.

1. Alzheimers
2. Vascular dementia
3. Dementia with Lewy bodies
4. Parkinson's dementia
5. Frontal-temporal dementia
6. Creutzfeldt-Jakob (you have to be really unlucky to get this 1 in a million)

Have you wet your pants yet?

Fear of the unknown is man's greatest fear. One American president (FDR?) said that we have nothing to fear but fear itself. I'm not sure what he meant because when you boil it down, it isn't possible to fear fear. How can you fear the same emotion?

But I digress. I reluctantly confess to a little trepidation of dementia, of one kind or another, occupying my future. I admit it is a distant fear but it is there nonetheless. However, fellow parkies, take heed of the words of the 3 little pigs, "Who's afraid of the big bad wolf?" Enjoy the time you are dementialess. Live life as if you were going to go crazy tomorrow. Love, laugh and be happy. You live in a straw house already. You may never get dementia but, unfortunately, the big bad wolf will eventually eat you, morcel by morcel, over time.

Unless someone kills it first.

Fortunately, there were no winged monkeys in sight!

We went up to the cottage and for the first time in awhile, I slept soundly, vivid dream free. Woke up to a beautiful sunny morning and went for a 3 mile walk, incident free. The lake was calm, without a ripple and it was too early for anyone to interrupt the stillness of the day. But the weather changed a couple of hours later. Thunder, lightning, rain. I was going to go back to the city to watch a football game and began to get ready to go when my daughter said we should all go home. Being stuck in a cottage with one 4 year old precocious child and a one year old baby was not inviting, given the weather. So it was that we came upon one of nature's little goodies. On the drive home we watched the tornado pictured below fall from a cloud just 10 or so minutes into our drive. It was very eerie watching it as it descended. Some brave (or foolish) folks stopped their cars to take pictures. We did not. I suffered a feeling right out of one of my nightmares. I just wanted to get home. Exciting? Not really. But a touch scary. We made it home, undamaged. Nothing happened to us, but this thing touched down just south of our cottage. JUST SOUTH OF OUR COTTAGE!!!. Strange that we decided to leave when we did. This is the first and, I hope, the last tornado I will ever witness. The whole thing played out with the words of Daryl Van Horne (The Witches of Eastwick) in the back of my mind.

"... What's the matter? You don't think God makes mistakes? Of course He does. We all make mistakes! Of course, when we make mistakes, they call it evil! When God makes mistakes, they call it nature!"

Who said Manitoba is boring!!

Go hang your dreams on the hanging tree

What is it now? Three? Four nights in a row? My dreams are becoming a nuisance. Last night my wife awoke me by gently rubbing my shoulder and back. Apparently, I had yelled out loud "DON'T PUT YOUR FEET ON THE STREET". In my dream I was shouting "Don't put your feet on the substitute's face!". You figure it out. It makes no sense to me.

Shakespeare said "We are such stuff as dreams are made on...." Oh, oh. That doesn't sound good. Then there is Walt Disney who claimed "Dreams are a wish your heart makes". Sounds better. God forbid I should make a wish concerning a substitute teacher with a face full of feet. But, these dreams are so vivid, so real, that they feel like reality itself.It is difficult to decide who was right, William or Walt.

Old Sigmund opined that dreams were manifestations of inner turmoil, desires or anxieties (if I remember correctly) and he probably blamed it on mothers and repressed childhoods.

I have no inner turmoil and my childhood was A-plus, so I don't reckon Freud was correct for me. The dreams don't scare me and I don't try to interpret them in connection with my own life but I do wonder "What do I care if someone puts his foot in the face of a substitute teacher?". The fact is I don't ergo, my dream was a manifestation of nothing. It was just another little gift from the PD Gods- an invitation from Morpheus (or Hypnos) "Here chap, this will make your decline more interesting. Dream a little dream with me."

If I had the ability to do so, I might decline his offer but I might worry I was missing out on something. Fortunately, I am stuck with them, so my wife and I will just have to suffer a little sleep deprivation. Or, I could stay awake all night! One thing good about dreams is that they make you wonder. Thinking is a form of dream reinvention. It keeps you on your toes and brings out the scientist or dramatist in you. If you have never had a dream, you must be a boring person. I just wish they wouldn't be so excruciatingly vivid that I waken my wife. I will get it together and continue dreaming but I will also try to adjust the content away from feet to coincide with my desires and interests. Dreaming is a necessity for me, even PD dreams.

Let's just say, "I dream; therefor, I am."

Edvard Munch pictured us perfectly

"New research by a team from the University of Toronto has just confirmed a link between Parkinson’s disease and a tendency to act out vivid dreams — a condition known as REM sleep behaviour disorder (RBD)." (see website "Health Unlocked").

Apparently, in a healthy brain the nerve to muscle path is cut off during REM sleep(rapid eye movement) when dreams occur and as a result, AYPWH (all you people with a healthy brain) are in effect paralyzed. For people with REM sleep disorder this paralysis does not occur leading to people shouting, kicking, sitting up and punching as they experience violent dreams. The researchers in Toronto estimate that 75% of people with RBD will eventually develop brain disorders such as Parkinson's.

I don't remember having violent dreams before I was diagnosed and I haven't read the Toronto study, but something tells me they have jumped to a conclusion that is not particularly supportable. Having said that, they may be right for certainly those of us with PD experience violent dreams and we have a tendency to act them out. For example, the night before last, or was it last night, I sat right up in bed and started making shooting noises. My wife woke me, again with the same question, (Are you OK?) to which I responded all was copacetic, I was just dreaming about shooting at Buddy Holly's (or was it Glen Campbell's) backup singer, trying to kill her before she killed me.

Now I don't know if either Buddy or Glen have a female backup or why I would want to kill her, or her me, but the dream was my reality for the few seconds it took to sit up and shoot. Luckily we don't keep guns in our house.

Before she went back to sleep, my wife, half jokingly said she might have to sleep in another room with the door locked for her own saftey.

Sleep is such an odd thing and dreaming even odder.