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Thursday 29 October 2015

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.

Tuesday 27 October 2015

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.

Friday 23 October 2015

“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,

Wednesday 21 October 2015

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

All time 42,060

  • Russia 122
  • Canada 76
  • United States 40
  • Japan 35
  • United Kingdom 28
  • Ukraine 12
  • Thailand 5
  • Germany 2
  • Singapore 2
  • Australia 1

Saturday 17 October 2015

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,

Wednesday 14 October 2015

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.

Tuesday 13 October 2015

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.

Thursday 8 October 2015

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.

Wednesday 7 October 2015

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

Tuesday 6 October 2015

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.

Friday 2 October 2015

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