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."