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Tuesday 24 November 2015

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!

Sunday 22 November 2015

"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.”

.

Thursday 19 November 2015

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

Friday 13 November 2015

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.

Tuesday 10 November 2015

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.

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.

Monday 9 November 2015

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

Thursday 5 November 2015

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.

Monday 2 November 2015

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.