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Saturday 29 December 2012

The Boy in the Bubble

Sometimes, while on my morning walk, I can feel that my legs are not working properly. They move OK and my wife tells me I look normal, but there is a strange, indescribable feeling that something is not quite right and if it were not so early and dark, and there was an audience, they would be staring at me and wondering if I was drunk.

I can also feel quite a little uncertain when I stand or turn suddenly. It is as if my sense of balance has taken a holiday. I haven't fallen and I am trying to make sure that doesn't happen

Some good news - I haven't had problems swallowing since just before diagnosis. I haven't had a repeat of too much saliva affecting my speech. Any ruddiness from the amantadine has gone. I am able to stay up until 10:30 (as opposed to 8:30 early on). So far as I know, the tremor is not in my right leg and is totally absent from the left side of my body (although, it might be there, but the drugs are masking it). Maybe it is progressing very slowly. One can only hope.

As for those indefinite feelings when I am walking, etc, they are merely stumbling blocks that I will turn into stepping stones to a reasonably dignified future and as Abe Lincoln said, "the best thing about the future is it comes one day at a time."

My new year's resolution will be to live one day at a time and ignore the future beyond the next day.

Happy New Year to all.

Tuesday 25 December 2012

That's what friends are for

Thanks to all who have read my blog. I have had readers from all over the world, from countries too many to name but I think they are representative of every continent.

I would like to give special thanks to the following:

  • Ron F - an old friend from Shilo who has offered me spiritual guidance. Thanks RF, I don't need it now but you never know.
  • Gale M - a good friend with OCD who keeps me grounded and makes me laugh.
  • Zoe F - my short-lived teenage girlfriend who likes to keep in touch.
  • Edith W - another old friend who first brought my blog to the attention of our teenage friends
  • Faye H - another Shilo and internet friend
  • Bill B who communicates with me regularly.
  • Bruce H & Brian H - like a second family growing up and especially thanks to Bruce who reads regularly and keeps me up-to-date on Brian
  • my brother, Don, who is concerned enough about my health that he went out of his way to get me an herbal remedy and who selflessly gives me legal advice on labour problems
  • Tim K who helped ease my mind when he told me of his essential tremor and the fact he liked King Biscuit Boy
  • Doug J who defended me in a minor internet crisis. We were right DJ, our antagonist was wrong
  • my sister, Yvonne, who I know reads and re-reads my blog daily
  • my nieces and nephews who, I know are concerned
  • my children who worry about me. Don't fret, I am good and will continue to be so
  • Brownian Movement who encouraged me to keep writing
  • and finally my wife, Sharron. Where would I be without her? She's the best.

If I forgot anyone, forgive me. It is Christmas morning and I have a half-hour to get ready before the children and grandchildren arrive. To all the Shilobrats and my 18 or so "followers", have a happy and healthy new year.

Monday 24 December 2012

So this is Christmas

Christmas - that time of year when there is nothing of interest on TV or the radio. Once you've seen It's a Wonderful Life, Miracle on 34th Street and the various versions of A Christmas Carol, there is no need to see them every year. To counteract this, I buy cheap movies to watch, especially on Christmas eve.

Around here, my wife makes Christmas special. She starts looking for presents for the next Christmas on boxing day of this Christmas. She and my daughter get together a couple of days prior to Christmas day and wrap presents. I would help, but I have always found it difficult and now, with PD, it is impossible. Even though the drugs hide the tremor, when I am under stress, it reappears. And stressful it is, trying to wrap a present without using up all of the scotch tape. Why is it that men are unable to do what women find so easy and enjoyable?

I am not a Scrooge....Christmas does become the most wonderful time of the year, on Christmas day when all our children and their children come to our house to open presents. Even the youngest, 17 months, has some interest in Santa, so there is always much excitement. Christmas really is a time for children and thank goodness for grandchildren.

This Christmas, I am thinking about being mortal and how fast the past 36 Christmases have gone by since my oldest boy was born. And now, I have PD to intrude into my thoughts, adding to my joy. What will the next 20 years be like? Will I deteriorate quickly? Will the drugs keep working? Will I ever have to have deep brain stimulation as a last resort? and many more uncertainties. Fortunately, they are fleeting intrusions and I mostly don't think of the future and I live life as I always have, day-to-day and free of the shadow of PD.

That being said, Santa, all I want for Christmas is a cure or a life with dignity.

I have to go now. There is yet another Christmas TV special for me to avoid. Where is my copy of Silence of the Lambs?

Merry Christmas.

Monday 17 December 2012

That silly scent Willy sent Millicent

A metaphor: a figure of speech in which a term or phrase is applied to something to which it is not literally applicable in order to suggest a resemblance.

In other words,some things are not what they seem.

Sunday morning, at 5 AM, I went for my usual walk. At that time of the morning, at this time of year, it is very dark. I turn a corner and sort of see a couple of figures coming toward me (I didn't wear my glasses, ergo, "sort of see"). I continued toward them. I have no fear. I am not even sure they are there. I see things in the shadows when I am not wearing my glasses. The specters kept coming and I, quite stupidly, continued toward them. Still no fear. We live in a very good neighbourhood. The only exciting law-breakers here are mothers picking their children up from school and getting a ticket for blocking the fire hydrant across the road from me.

But it is 5 AM; who goes out at 5AM? Usually only me and the dog walkers who do not want anyone to see their dogs doing their business without the owner picking it up.

Oh yes, I forgot, and bad guys!

When I was about a block away I could see they were two rather large fellows. I debated avoiding them by going down a back lane. For some reason, I did not. We continued our mutual mission. They were quite imposing. I was getting nervous and fear was taking over. I wondered if I should step into the snow bank to let them pass, but no, I kept going straight. We were only a few steps away from each other, when the larger of the two stepped behind the smaller, to let me pass, and both of them said, quite gently, "Good Morning".

Two men in their early twenties (if I had to guess). I think they must have had a rockin' good time Saturday evening and were just going home.

Some things are just not what they seem.

End metaphor.

Hallucinations still startle me. It is usually early in the morning, after my walk, when I am alone and concentrating on the crossword. Out of the corner of an eye, I see things. For example, the other day I saw a small boy playing with cards on the side table. Now usually, I don't bother looking at them and the illusions do not upset me, but this one was so real, I actually turned to see......nothing. I think they must be caused by the medication, or maybe a result of the laser eye surgery I underwent some time ago.

There doesn't seem to be any boundary between reality and hallucination these days. I almost look forward to them.

Thursday 13 December 2012

All Life is an Experiment

I think that old age must arrive suddenly and unexpectedly. I have always held on to the notion that old age is always 10 years beyond my age. But then life reminds you of your mortality and your expiry date.

We had a death in the family. My mother-in-law. But, shed no tears; she was 98 years old, almost blind and confined to a wheelchair that she could not move by herself. So, she sat in the same place until somebody could move her. I think she must have welcomed death. Five years ago, she could operate an electric wheelchair joystick like a professional gamer but then she got shipwrecked and life only became a nuisance.

I was thinking about life and death on my walk this morning. I had this mental picture of my oldest child. He is about 4 years old and we are fishing. His eyes are big and his mouth wide open. He is staring at the minnow I am threading onto the hook. He thinks I have caught a fish. Now 32 years later, he is a success as a man, husband and father and I am wondering where the time went. I think to myself, you have only 15 to 20 years left, if you're lucky. I have never been afraid of death, only of not living but now, I am afraid of an undignified death. I don't want to end up like Ali, a shell of his former self. Not only can he not float like a butterfly, he can no longer walk. That thought makes me walk faster and further because exercise is the only known thing that can slow down the PD process. I am training for my date with death. At the moment, I think I am winning and things are looking up.

This optimism brings to mind a poem by Langston Hughes and when I arrive home, I look it up on the internet:

“Life is for the living.
Death is for the dead.
Let life be like music.
And death a note unsaid.

My mother-in-law died peacefully, asleep, sitting in her wheelchair. What a great way to go into the next stage of her journey!

Enough of this. Some good news. Today, I had a feeling that I was going to start the walk that causes me to fall down so I tried the marching tip I was given and, it worked. Instead of leaning forward, I stood straight and increased my stride and after 20 yards or so, I was walking normally - so that little deficiency has been defeated. If you are a PWP, try this technique to keep from falling while walking.

People are still reading. Thank you. Here are the statistics for last week:

  1. Canada 59
  2. Spain 11
  3. United Kingdom 7
  4. United States 7
  5. Poland 2
  6. Germany 1
  7. Egypt 1
  8. Ukraine 1
The total from the commencement of this blog is 8,568!

Tuesday 4 December 2012

If you worried about falling off the bike, you'd never get on.

The title is a quote from Lance Armstrong, the drug induced cycling mavin and the winner of 7 consecutive Tours de France. He must have been off the juice at the time he said it because it is quite sensible and I have taken it to heart. If I worried about walking, I would never walk. However, I have kept walking since my fall, without incident and exercise is the only known method that might slow the progression of PD so I have to do it. It has become an obsession and I can't imagine quitting.

I finally got an explanation of the phenomena. For awhile there, I thought it must have been an attack of hypochondria, but yesterday, after seeing the dermatologist, I went to my GP and in passing, I mentioned the weird walk and demonic jog that resulted in a fall.

"That is a symptom of PD,"he said. "PD causes your body to try to catch up with your center of gravity, so you bend forward and have to walk faster and faster until you fall".

OK, why didn't my 2 neurologists tell me that? In fact, one of them told me that PD doesn't present like that and I should see my family doctor. He had me scared that something else might be present in addition to the PD.

Anyway, I went on a PD forum and got the following advice:

  1. Keep saying in your mind 1-2,1-2. Or a stick might help you.
  2. Walk like you are marching.
  3. Stop walking, turn around and face the direction you want go in, then make the first step a big step.
  4. count while walking

I don't know where I would be without the internet. Just knowing other people around the world who have PD, brings me some solace and the fact I can get advice from PWP who have been there, done that, is invaluable.

"The Internet has always been, and always will be, a magic box." Marc Andreesson, a founder of Netscape.

Life would be so much easier if God would just give us the source code!

Monday 3 December 2012

Happiness is health and a short memory.

It's been a few days since my disastrous walk and fall. Since then I have walked 3 times, 2 of which have been in the 2.5 mile range, without incident. The fall will now fade from my memory until the next time.

Today, I am feeling good. The pills are working and I had a good evening. Yesterday was tree day. All my children and their children came over to raise our Christmas tree. The two little boys were out of their minds with excitement and with 22 days left before the big day, I pity their parents. On the other hand, as their grandfather, I loved it. As I told my daughter, "diaper is just repaid backwards". Her "ha, ha" response was satisfying. She has a girl and she doesn't quite understand what is waiting for her when her daughter reaches her teens. As Shakespeare said (I think, maybe someone else) "I wish there were no age twixt twelve and one and twenty".

I just got back from the dermatologist who went a little crazy with the liquid nitrogen, attacking every age spot or sun damaged spot from the waist up. I now look like a walking wounded, burned in several places. I can put up with it a few days, he is only looking out for me but he needn't have pronounced that he'd better spray some spots on the top of my head because "your hair is obviously thinning."

He doesn't realize that I am not balding, I am just a little taller than my hair so my scalp peeks through.

Thursday 29 November 2012

No No Keshagesh - That's Me.

Recognize the title? It is a song written by Buffy Stainte Marie.

What's that got to do with anything? You may be asking yourself. The answer is, I want everything. I want to be rid of this condition (I avoid using "disease"). There has been a lot of promising research but any possible cure is at least 5 years away. I can't wait that long! Get on with it.

I went for a short walk this morning, about a half mile, with no problems. My legs have felt fine for the past 2 days. I hope it is a long time before I have another fall because, frankly, I don't enjoy being nervous about walking.

So find us a cure or at least a drug that slows the progression of the condition.

"We're gonna sing it and pray it and live it then say it"

This keshagesh won't take "No" for an answer.

Tuesday 27 November 2012

"Well, I always run the risk of falling on my face, which has in fact happened."

It happened again! Second time. I could not control my walking. I started out at 4:30 AM and decided to take a different route. After 20 minutes, I felt like I was leaning forward and my footsteps were just enough to counter a possible fall.

Now, I know walking (running) is just a form of controlled forward falling, but normally one can stop whenever one wants to, but this, this was alltogether different. In spite of my desire to try to walk upright, I continued to bend forward and my feet began to act on their own. My strides became shorter and shorter and I had to walk faster and faster to keep from falling forward.

At one point, I had to break into an ugly little jog to remain on my feet. I grabbed at a pole, the kind of plastic pole that sticks up from a fire hydrant, but I couldn't stop moving as I circled the hydrant like a man possessed. Fortunately, there were no spectators, it being so early in the morning, for they'd have thought me a drunk.

When I finally stopped my orbit of the hydrant, I rested for a couple of minutes and began a slow walk home, without success. Again I was bent forward and my walking steps turned into the devil's jog until finally, after crossing a road, I pitched forward into the snow, where I remained for several minutes before getting up and going to a nearby bus stop where there was a bench to give me some relief. Again, fortunately there was no audience. I was still a half mile from home, I'd forgotten my cell phone; otherwise, I would have called my wife (who was home sick) or one of my kids, to pick me up. Alas, that could not be.

With maximum effort and determination, I chose a slow shuffle to the next bus stop and its welcoming bench, rested and then made the way home without incident. However, the effort required to prevent falling while removing my heavy winter clothing made balancing on a bosu ball seem simple - a piece of cake - as "they" say.

I was fine after a few minutes of relaxation reading the morning paper. Nobody was awake to see me, which was good, because I must have looked like Bram Stoker's description of the Count.... deathly pale, just like a waxen image, and the red eyes glared with the horrible vindictive look which I knew so well....

And vindictive I must have looked, for I have an aversion to not being in control, not being able to walk properly and I tend to blame it on PD.

I remember a saying by Confucius to the effect that our greatest accomplishment is not in our falling but in our getting up every time we fall, or something like that. You get the picture.

I don't!!

Monday 26 November 2012

May you have warm words on a cold morning

Up at 5AM, short workout with dumbbells, followed by 2.5 mile walk. The problem is, today the cold finally came, -21C (6 below F) but if you dress properly, a cold, dark morning provides an atmosphere that can permit a person like me to wallow in a bad mood.

And wallow I did. I took 2 amantadine less than 2 hours apart, just before going to bed last night. The result? I was wide awake. I tried falling asleep to the radio but no luck. I tried watching "Vegas" on the PVR but even that couldn't make be tired. I took a second Zopoclone without success. Finally, around 2AM, I dropped off, only to awaken at 4:30AM. But, I am happy to say I got in my exercise and at the end, my bad mood slowly dissapated into surliness.

It is trite to say that exercise is good for everybody, but for PWP, it is essential. Research has shown that physical exercise may protect dopamine cells.

Exercise causes the release of neurotrophic factors which help the brain resist degeneration.

Studies concentrating on exercise and Parkinson's have shown that exercise improves physical functions, strength, balance and walking speed/stride along with mental abilities.

The best exercise is aerobic - walking, running, swimming, etc. I have added simple weight training, about 15 minutes every second day. I will not become another Charles Atlas, but I might keep my body from falling apart.

Of course there is that other reason for exercising. I saw it on a shirt at the swimming pool....."I don't care about being big and strong, I just want to look good naked".

Seems like a good enough reason to me. .

Saturday 24 November 2012

Some statistics

Readership over the past month:

Canada 227
United Kingdom 121
United States 41
France 5
Chile 3
Germany 3
Malaysia 3
United Arab Emirates 2
Australia 1
Belgium 1

Thank you to all readers. I hope any information contained in this blog is some help to PWP and is of interest to others. Knowing that people are reading me helps.

Thursday 22 November 2012

On acheve bien les chevaux* & the sound of silence.

Before he was diagnosed with Altzheimer's, my father and I were talking about aging when he said to me, "It's funny; the body wears out but you don't think differently."

Well, he eventually did think differently. He lost his ability to think and his last year or two were without dignity and this for a very dignified man. We were able to care for him for awhile, but eventually he had to go to a care home. It was all very depressing; although, there were a couple of humorous incidents. Here's one I can still chuckle at. My father wore glasses and they kept falling off. A volunteer optician came to the care facility and offered to fix the glasses. He took out a little kit and eventually fixed them. While working on them, he turned to my brother and me and said, "He just has a little screw loose." Then realizing where we were and my father's condition, he turned red and embarrassingly added, "You know I mean the glasses, don't you?"

We laughed and told him we knew what he meant. Both of us thought that his turn of phrase was very funny, but that poor optician only gave us an embarrassed smile and, flustered, he silently returned to his work.

My father never wanted to be a burden on his family and fortunately, as a vet, he was able to be placed in the best care facility in the city, so he was only a burden on my mother for a few months. He would have dropped dead on the spot if he had realized the effect of his condition on his family.

That is my greatest fear - that I will become a burden. I am fairly certain it won't happen but if it does, just stand me against a wall and shoot me. After all, they shoot horses, don't they?

On a happier note, I read today that tremor dominant PD progresses very slowly in most cases but it is harder to control with drugs. I am lucky on two fronts. First, I have tremor dominant PD and it appears that it is progressing slowly and second, the drugs work wonders. As long as I am taking them, I have no tremor and outwardly I appear entirely normal....that is until I open my mouth, which can't keep up with my brain.Oh well, that symptom is easy to control. My silence is becoming deafening.

*What's with the French?

Tuesday 13 November 2012

Pain is temporary & some other stuff.

Did you know (or have I said so in an earlier entry)

1. The youngest person to suffer from Parkinson's symptoms was 3 years old?

2. There is a high incidence of PD on Guam and among Gypsies in Bulgaria?

3. That an early treatment for PD was the ingestion of worms and ants?

4. That more women than men are afflicted with PD in Japan? This is the only country where this is true.

5. Another early (medieval) treatment was myrrh, frankincense and frogs.

These strange facts and more can be found here

As for me, I continue to evade PD symptoms; however, the other shoe fell yesterday, a Colorado Low dumped about 10 inches of snow on us, making my morning walk a little difficult. In addition, the 2 hours I spent shoveling (plus another hour after the grader piled snow on the area I had just cleaned off)means that I have pain everywhere in my body. However, unlike PD symptoms, this pain will eventually get better.

Without pain, there would be no suffering, without suffering we would never learn from our mistakes. To make it right, pain and suffering is the key to all windows, without it, there is no way of life. (Angelina Jolie)

What a load of crap!

Thursday 8 November 2012

Wonderin' where the lions are......

Now three days without any wild symptoms. Things are going great. My walk this morning was chilly but a reasonable pace. My gait was fine; my arm swing natural on both sides. My right foot tended to shuffle a bit, but using the advice I was given by a fellow from England, I consciously heel-toed it and that slew the shuffle (by the way, if that fellow reads this, you changed the URL for the forum. Can you get it for me, I miss reading it)

Getting back to my non-symptoms. No toe curling - leg straightening - knot forming cramps. That's a relief! Furthermore, my tremor cannot get out to do its dance as the drugs are keeping it a wallflower. It wants out; I can feel it moving around in my right arm. It needs to be released but I have had enough of that embarrassment. It is staying where it is!

I am not totally symptom free, I still have those myoclonic spasms (to the nth degree) when I am resting and about to fall asleep but, in an odd sort of twisted way, I don't mind them. You never know what part of the body will be hit or what intensity it will be hit with. And, when they come, they come in bunches (4 or 5) which is another facet I shamelessly enjoy.

My voice remains quiet and with a sultry, cold-induced quality to it. This after 8 weeks of voice training. My failure to practise what my therapist told me is the reason for my quiet rasp. I have just decided to remain silent. You can't get in trouble if you remain silent and yet, silence can be a powerful weapon.

Mentally, I remain quite positive about my future. As someone said to my brother and me, a long time ago, "you guys could fall in a bucket of shit and come out smelling like roses." It is true, we seem to be lucky that way (here the author touches wood).

It's a new day; suns up; no rain; snow on hold and chilly but not real cold. Today I am slowing down and taking the day off to just doing nothing.

A kind of euphoria has me in its grasp. I am feeling real good.

But.........I keep wondering where the lions are.

Tuesday 6 November 2012

Quand le soleil dit bonjour aux montagnes....

Today is going to be a good day. Is that so? You might ask, why? Because yesterday I saw my first neurologist for the third time

Yes, I have two neurologists. One is an acquaintance from an earlier life and he was the first one I went to see for treatment. He is a good caring man but unfortunately, he is near my age and retirement can't be too far away. He referred me to my second neurologist, a specialist in movement disorders. Also a good guy and about half my age, so he will be around when I die. I asked the first neuro if it was OK if I was seeing another one. His response was, "You don't need to but if you want to that's fine." I didn't know the two doctors were already communicating about me. I am sticking with both.

Of course that is not the whole reason this is going to be a good day. When I walked into his office, the doctor remarked that I was looking pretty good. We settled into the doctor/patient positions. You know those positions, doctor sits at his desk reading from files on a computer, patient sits beside his desk wondering what the files say.

"Have you had any serious tremors?"

"Only when the drugs are wearing off?

"Is your walking affected? Shortened gait? Shuffle?"

"No, nothing like that"

"Trouble when you rise from a chair?"

"Not really. Not at the moment. I had some minor problems awhile back."

"Any repeat of that incident where you couldn't walk properly and had to crawl onto your lower deck?"

"Not at all."

"Really, that's interesting" I can see he is going to be thinking about this when I leave, trying to find an answer.

"Any trouble rolling over in bed?"

"No."

"You mentioned last time that your hands and feet get extremely cold to the point of being painful. Do you still have that?

"Yes. It is worse than ever." He holds my hands and gives them a quick massage asking a few questions. Finally....

"Hmmm....." Another puzzle to keep him awake at night.

"Do you need anything from me?"

"Amantadine"

"I will give you a prescription for a year's worth," He writes out the script and hands it to me. "I don't need to see you for another 6 months.

I leave his office feeling very positive about my future. He is the second neurologist not to exhibit any concerns about my present condition.

I know that when PD first presents itself as an intermittent tremor, the likelihood is that the condition will be slow to progress.

It has been almost two years since my diagnosis and although I have suffered bouts of strange symptoms that I self diagnosed being PD related (the internet is a dangerous thing), my cramping, my myoclonic spasms and my tremor have only progressed slowly, if at all.

Maybe I will be one of the lucky ones (touch wood). Maybe I will be dead before the disease puts me into a wheel chair.

Got no deeds to do,
No promises to keep.
I'm dappled and drowsy and ready to sleep.
Let the morning time drop all its petals on me.
Life, I love you,
All is groovy.

Monday 29 October 2012

The Bells of Hell go Ting-aling-aling

I am sitting with my father in the care home. He is trying to tell me something but it isn't coming out. It is all nonsense, no real words, no structure, his hand waving in the air as if that will help. I pretend to know what he is talking about. He stops abruptly and says the first intelligible thing in a long time, "Ah, Doug," he sighs, "I have gone to Hell." He had momentarily looked out of his lost world and caught a glimpse of reality. But, it went away as quickly as it had arrived.

Altzheimers is like that. A life in hell with the occasional taste of reality.

I don't have Altzheimers, and I am glad of that. I doubt I ever will come down with it. I also doubt that I will ever come down with Pd related dementia. But still, I have my own personal hell.

Medications make my day relatively normal, but all PD medications are cloaking the fact that parkinson's continues to attack. Eventually the medication does not do a thorough job and the symptoms begin to return. You go along with your life, confident that the medication will keep the symptoms away (especially "the beast" found in my earliest entries)but you know there will come a time when a voice will say They're here . That voice has awakened me the past two nights.

The first night, I suffered a painful cramp in my right calf. It woke me up but I was able to ignore it and fall asleep. Not to be outdone, it attacked my left calf. This was the first time my left side has been victimized. I stood and the cramp left me. I had won.

The second night, my right leg shot straight out. The tibialis muscle, or whatever the muscle on the exterior of the leg is called, became rock-rigid and my toes began to curl down as my foot was in the process of curling inward and upward. The beast was back! I cursed and jumped out of bed. I stood for about 5 minutes until it let go of me. I got back into bed, still cursing and then, ironically, I remembered what somebody said, "you can talk all you want about your religion, but if it does not teach you to love the beast as well as mankind, your religion is a sham".

Well kids, I sure ain't lovin' that beast and nor am I too fond of old time religions that offer no explanations for the existence of the dainty hells found on earth.

Heathen: "If I did not know about God and sin, would I go to hell?"
Priest: "No, not if you did not know."
Heathen: "Then why did you tell me?"

Thursday 25 October 2012

Situation Tolerable

I work out of my home and when clients come to see me, they sit on a couch and I sit in front of them on a stool and hand them the papers they need to sign. It was no different last night - 3 clients, husband, wife and wife's father.

I was not expecting them that night (mix up, probably my fault)so when the doorbell rang, I was slow to answer in case it was somebody trying to convince me that Jesus walked among North American Indians. I took my time getting out of my pyjamas (pajamas), and puling on some "sweats." Looking all disheveled, I answered the door to find my clients patiently waiting for me. Fortunately, they were courteous and didn't react to my appearance and equally fortunately, all the papers they had to sign were ready. I invited them in. The husband and wife sat on one sofa and the father sat in another one across the room. I sat on the stool between them.

When I say I "sat", I did so only after having PD momentarily hit me. As I was going down to sit on the stool, I lost my balance. The feeling of helplessness lasted only a nanosecond, but it was enough, and I fell backward onto the floor.

"Are you OK," the wife asked, genuinely concerned.

"Yes," I replied and I explained to them that I have PD and lately have had some balance problems. The situation was embarrassing, but tolerable.

The PD forums are full of people who won't divulge they have the condition for one reason or another, but embarrassment is prominent among those reasons. I tell anyone & everyone (obviously - anyone can read this blog) and I ask you, if your lawyer fell off a stool, creating a scene, would you, as his client, be more comfortable with a diagnosis of PD as opposed to alcoholism or worse, plain stupidity?

At least now, I have an excuse, one that everybody sympathizes with, when I act foolish

Drinking makes such fools of people, and people are such fools to begin with, that it's compounding a felony. ~Robert Benchley

Sunday 21 October 2012

This & That & The Other Thing

I haven't much to write about and I guess that is a good thing. I do get the occasional cramp in my right leg. They're not so bad. I just stand up and, for a few minutes, I go to my happy place until the cramp decides to leave me be. Where is my happy place? I don't remember. It is different every time. I wouldn't want my imagination to get into a rut.

When I am resting, my body can jerk around like a marionette that is being manipulated by a drunken puppeteer, but, in some twisted way, I enjoy those. Some times, they can be brutal and for a moment, I feel like how that girl in The Exorcist must have felt, a part of me momentarily suspended in the air. It is only for a nano second, but it is an experience. Most of the time, the twitches are just gentle reminders that all is not well with my brain. Either that or I am possessed.

One possible foreshadow - I get a little off balance when I stand. So far, I control it but, in the future, who knows?

Finally, the one symptom that bothers me is my mouth can't keep up with my brain. My wife says I speak quietly and don't enunciate. Problem is, I can do neither and so at times, I sound stupid - at least to myself; therefore, I figure the same perception goes to the recipient of my stunted mutterings. Thank God for the computer and the fact that I took typing as an option in high school, no doubt to avoid a more onerous subject. It has served me well.

Time to watch the American election news. It fascinates me. For one of the candidates, (two if you count his VP), Napolean's remark, that in politics, stupidity is not a handicap is highly appropriate. To avoid insulting any American friends,I won't say which candidate(s).

Good night and good news.

Thursday 11 October 2012

Walk Like a Man

Researchers speculate there might be a connection between a person's gait and the possibility of dementia at some point in his life. The shorter the gait, the greater the possibility of dementia. So naturally, being the hypochondriac that I am, I took notice of my gait on this morning's walk. I concluded that my gait was normal, if not better than it has been, following a few months of strolling around the neighbourhood at 5 in the morning. No dementia for me! I should have known, as I can still perform fairly complicated math in my head and crosswords are not particularly challenging; however, when I speak, my mouth can't keep up with my brain and I sometimes think I sound like I am not playing with a full deck. Can't be helped and anyway, the noise level, in any group in which I am a participant, is seriously lessened by my silence. That must be a good thing, right?

Speaking of gait, I was downtown yesterday at about 1pm to go to the Land Titles Office. This can be a real adventure as there are some fairly exotic(?) people who lurk in the shadows of the office buildings. I have been accosted many times and have survived. My technique is to keep my eyes wide open, look straight ahead, don't respond to the ravings of these denizens and above all, increase my stride and the speed of my walk. Perhaps fear is what is causing my gait to exceed normalcy!?

{At this point in my writing I was interrupted by the Fed Ex guy with a Blackberry Playbook I got off ebay}

Excuse me. Where was I? OK.....Right.....I was talking about going downtown yesterday.

All right then, to continue with the story. It was midday and cool enough that I wished that I had worn gloves, so I was hurrying along (good gait, nice pace). I came out of the parking lot and there in front of me was a drunk, weaving down the side walk. Great! Now what? I slowed down, stayed behind him and watched as he staggered along, but I knew that I would have to pass him at some point. I took a deep breath, eyes straight ahead, determined not to answer if he said anything, increased my gait and hence, my speed, and passed him without incident. My gait was great, well above my usual and relative to the drunk, I was moving at light speed. I was the Flash in plain clothes, my speed blindingly fast and hiding my PD. No dementia here!

On the other hand, the drunk may have had more brain power than I thought. You see he was staggering in a perfect sine curve. I guess he must have been practising his trigonometry. At least, I hope that was the case because nobody should be that close to unconsciousness at 1 o'clock in the afternoon, or maybe, looking at his gait, he may have been entering the mindlessness of dementia. Who knows and coldly, who cares?

On my return he was still there, stumbling along with another street creature, not nearly so drunk, who said to him, "C'mon. Hurry up. Walk like a man."

I prefer to think he knew he as marching in a Sine curve with visions of trig functions in his addled brain!

Just another little chapter in the saga of our downtown jungle.

Tuesday 9 October 2012

The Man from U.N.C.L.E.

U.N.C.L.E. - the union of newbies ceasing to live effortlessly.

Do you know that feeling you get when you have had a little too much to drink, (or for all you tea totallers out there, when you spin around a few times), and then you rise from where you were sitting or try to walk a straight line, and you kind of stumble?

Of course you do! We have all experienced that uncertainty a few times in our lives. We always recovered without any effort and went on our way.

Well, my life contract has been amended to add a clause requiring me to occasionally go through the experience and to have to exert some effort in the recovery phase. When I arise from sitting, I momentarily stumble about 25% of the time, without having been drinking or spinning. I always catch myself so I don't consider it a problem.....yet. If it does become a problem, hopefully L-dopa will keep it in check. I am avoiding L-dopa as long as possible because, it is thought that after prolonged use, L-dopa loses its effectiveness. Some experts deny this is the case. I figure, why take the chance? So I will continue on dopamine agonists until they no longer work. It is just the way things are - bad today, worse tomorrow.

Sounds depressing, so lets change the topic. Let's chat about dyskinesia!

The simplest definition of dyskinesia is "the inablility to control movements, characterized by spasmodic or repetitive motions or lack of coordination." Well, late last night, I experienced the mother of all spasmodic episodes. I was on my bed, in the gloamin of just drifting off, while listening to the BBC on the satellite radio, and was just entering sleep mode, when I was rudely awakened when all the muscles of my entire upper body decided it was time to release any pent up aggression they possessed toward me in one simultaneous giant twitch, shudder, tremor (one or all of them). A myoclonic spasm of the nth degree.

I have to conclude these twitches I have been experiencing are not the run-of-the-mill myoclonic spasms we all have visit us from time to time, but rather; I have been introduced to a form of dyskinesia. It is becoming a nightly event. I knew it might come at some point along my journey but I would have preferred not to have to welcome it so soon. Nothing is quite so sure as change in PD. That is the rule, but it is not my ruler.

Friday 5 October 2012

There's just no point to it!

I no longer point to things with my right hand. It is too embarrassing. Not only does my hand shake, but my pointing finger gets into the act as well, vibrating up and down at lightning speed. I can usually hit a target I am aiming for, such as the touch screen in my vehicle, but it takes a few seconds. Fortunately, I have voice command for the radio stations I know the call letters to, but otherwise it is a waste of time, and dangerous (I take my eyes off the road), to try to use the menu while driving with one hand while the other hand gets its exercise.

The result is, I no longer point because there is just no point to it.

My pointing finger also operates the left hand button on my mouse. While my finger doesn't have a continuous vibration when it is on the mouse, it does have a way of clicking the button without my input, or hitting a letter twice when I want it to strike only once. These little joys can be quite frustrating. For example, one time I was writing a long report and about 3/4 of the way through, my finger hit the button 3 times. The report disappeared and I don't know where it went or what caused to go away. I don't know what happened, but whatever it was, it happened very quickly. I need to find a way to harness that energy!!

The body continues its inexorable journey of deterioration. But, today, I feel good and who cares what tomorrow may bring. To paraphrase Mark Twain I can easily endure adversity.......... Another man's, I mean.

Sunday 30 September 2012

The truth is you don't know what is going to happen tomorrow. Life is a crazy ride, and nothing is guaranteed. (Eminem)

So here I am, going happily through life. Retired(well,sort of), great family, nice home & cottage, annual trip to South Miami Beach. Had it all and then, out of the blue, my right hand starts doing the cha cha on its own volition and the next thing I know, an old doctor tells me he is confident I am in the early stage of Parkinson's. My life continues as before, I still have it all, but now it is all under the cloud of PD.

Anyway, I wanted to learn about PD so I went to work and found some interesting facts:

  1. Body movements are controlled by a part of the brain called the basil ganglia.For proper body movements, there must be a balance between dopamine and acetylcholine. Both substances are neurotransmitters. Parkinson's begins when the cells that produce the dopamine begin to die and the balance between the two substances deteriorates. When about 80% of the dopamine-producing cells have died, parkinson's symptoms begin.
  2. The risk of developing PD is directly proportional to age. Most symptoms appear over the age of 50; although, 1 in 20 people are diagnosed under the age of 40.
  3. In the USA, a person is diagnosed with PD every 9 minutes and as the population continues to age, so will the incidence of parkinson's.
  4. PD is second only to Alzheimer's as a degenerative, neurological condition. In North America, the number of people with PD outnumbers the combined total of the victims of MS, MD and ALS.
  5. There is no cure for PD however, drugs have been found that can control the symptoms, giving the PWP a better quality of life (mine is usually completely normal, on the outside). Meanwhile, researchers continue to look for better drugs and a possible cure.
  6. About 100,000 Canadians have PD. Those are long odds. PWP should not waste their money on lotteries. For us, the odds of any of us winning are bad; it would just be a tax on stupidity
  7. PD is a designer disease. It is different for everyone. Progression can be rapid or glacial paced. Not all of the symptoms appear in each case. Sometimes, only one side of the body is affected, etc, etc. That is why it is no use comparing yourself to a vetern of the disease.

I remain optimistic. Things are going well for me............ I must have overlooked something!!!

Wednesday 26 September 2012

Of Trials and Tribulations

The trial has been cancelled and a settlement reached! I no longer have to worry about being the chief witness. The lawyer for the winning side interviewed me and, even though he is a friend, my mouth dried up and I couldn't think straight. I told him later that we PWP might sound stupid, but our brain works just fine. He said I didn't sound stupid, I just took my time answering his questions. The odd thing is, I wasn't stressed then and I would not have been particularly stressed at the trial, but that wouldn't stop the PD symptoms making me looked stressed, or worse, distressed. Anyway, I am thankful that it was settled, I didn't want to spend 10 days in a courtroom. As a lawyer myself, I try to avoid those places. Too stern and baroque

I once took some teenagers to watch the trial of a man accused of attempted murder. We were mulling around in the hallway, waiting for the courtroom to open, when the victim came up and spoke to me. I told him what we were doing and he offered to talk to the kids. He told them that the accused had stabbed him 27 times. I sort of scoffed at that. I mean he was still alive. Who lives after being stabbed 27 times? He opened his shirt and showed us the scars. I don't know if there were 27, but there were alot. I thanked him and he left us just as the sheriffs were bringing in the accused.

Now you have to get the picture. Thirty 14 year olds, not paying attention, talking in loud voices about the victim and occupying the entire hallway. One sheriff said, "Excuse us" and the kids all looked toward him and saw the prisoner being escorted by two, rather large sheriffs, each of whom was holding one arm of accused. He was about 6'2", long black greasy hair, scruffy, handcuffed and had a cross carved into his forehead (copying Charlie Manson maybe?). Although he appeared to be a white man, he reminded me of Injun Joe from Tom Sawyer (Or Huck Finn - not sure which). The sight of this man made the students move. It was like the parting of the sea as they quickly and uncharacteristically silently, moved to one side or the other of the hallway. The accused passed through with a smirk on his face and one of the sheriffs winked at me.

That was thirty years ago and unfortunately, my memory of the event ends with that smirk. I have no idea what happened. Maybe I have blocked it out because I really don't like courtrooms!

In another world, I made and drank chaga mushroom tea. I have to say, it tasted really good so I will keep on drinking it, even if I don't notice any changes. It is like chicken noodle soup for a cold. Can't help. Can't hurt.

Saturday 22 September 2012

HEEERRREES JOHNNY!!!!!

PD keeps knocking at my door and I just don't answer. I am too busy building stronger weapons - ie - getting more drugs to battle the invader. Now a new supplement has come my way, one that comes with a story behind it.

You see, my younger brother, the free spirit who,at 63 or 64 (I forget) is pushing his luck trekking up mountains once each year somewhere in the world; Mountains like the first base camp on Mount Everest, Machu Pichu, some mountain in Venezuela........ you get the picture. This year however, he decided to stay at home and hit the wilderness of the Rockies, which he described as "beyond my comfort zone". While on his trek he met a Native healer picking chaga mushrooms who went by the name Sequoyah Trueblood. My sibling didn't know it at the time, but Sequoyah Trueblood is quite famous as a healer and teacher. My brother asked Sequoyah what he was going to do with the mushrooms and got the reply that he was taking them to a place in Calgary where they would be turned into chaga mushroom tea which,he said, was good for people with parkinson's.

What a serenddipitous meeting!

My brother is sending me some, looking out for me (It's a family thing). I will give the tea a shot and let you know the results.

Let's hope it is another weapon in my arsenal to keep Johnny at bay.

By the way, throughout this narrative could you hear my brother's theme song, "The Happy Wanderer"?



I love to go a-wandering,
Along the mountain track,
And as I go, I love to sing,
My knapsack on my back.

Chorus:
Val-deri,Val-dera,
Val-deri,
Val-dera-ha-ha-ha-ha-ha
Val-deri,Val-dera.
My knapsack on my back.

Thursday 13 September 2012

This post contains language that may not be suitable for children. Reader discretion is advised.

As a person who has suffered from the ravages of the Aztec Two-step (aka "Montezuma's Revenge") for most of his life (a real problem when running a marathon), one of the good things about PD, for me, is that it causes constipation. I can walk or run as far or as long as I want without any worries, but, on the 3rd day, I have to "go" and, oh my god, it is an adventure - probably approaching the agony of child birth. So, to ease the pain, I must take pills that help make it less scarring, both physically and mentally. The other two days are delightful.

The problem is, I know it can only get worse as PD weakens my muscles. For the time being, I shall enjoy my new-found freedom, with the exception of that third day.

As someone once said, constipation is a sign of good health for pomeranians, or something like that.

Cheers!

Thursday 6 September 2012

Standing Sixes

It is late at night. I am sixteen and with my friend who is the same age. We are basically good boys but, it is dark; we are bored and looking for trouble. We are about to steal a transistor radio from a car. This goes against my upbringing and my morals. I try not to look nervous, but I am and I do. My friend notices my hands shaking and he offers to do the deed while I stand in the shadows and look out for anyone coming. My voice quivers and my chin trembles as I mumble a soft "OK".

It all goes well until the meatheads (military police) show up. I yell to my friend who has opened the car door and is reaching inside. "Meatheads," I sputter. "RUN".

My fiend drops his booty and takes off in one direction while I head out at full speed into the dark prairie. I run until my chest hurts. Finally, I stop and look back. Nothing. I start walking home but my foot sinks into a gopher hole and twists. The pain arrives as my right leg goes into spasm and I wake up.

It was only a dream! A fantasy! But, the pain is real. My leg has spasmed again. It seems to be happening more frequenty this past month and let me tell you, on a pain scale (where ten is that exquisite pain that I have only suffered through once in my life, while waiting for surgery for a spinal stenosis), the pain in my leg is right up there at the 7 - 8 spot in the catalogue of human woes.

There is only one good thing about the leg pain. When I stand for a couple of minutes the pain goes away, leaving only a mild throbbing that can last a day or more. So, all I need is a warning system, some omen or signal, (something standing sixes as I had done in my dream), and can tell me to get up and get to attention before the muscle has a chance to contract, or whatever it is doing to cause me grief for those few minutes of excruciating pain.

Oh, and I would prefer if it didn't happen at 3:30 in the morning.

Sunday 2 September 2012

I hate that drum's discordant sound

Went to see the Neurologist on Thursday. He said I looked real good. Few more questions, few answers and the session closed with "You are definitely one of the ones I don't need to see for 6 months."

Good news, right? Well sorta....... I mean it sounds like I am progressing slowly and should be happy with that and, don't me wrong, I am.

But you know those old movies where the hunting party gets lost in the jungle? You know, the old black and white movies where there is always a man with a rifle and pith helmet, a beautiful woman who spends her time nervously sighing, with the back of her hand against her brow, and a faithful black servent, who talks in mono syllables.

Will they make it out alive???

It is looking good when, suddenly, a distant sound makes them stop. Pith-helmet man brings up his rifle, ever ready for action. Pretty lady swoons, and puts her hand to her forehead. The much too faithful servent explains, in mono-syllabic english, that it is native drummers sending messages. The drummers are looking for a man, a woman, and a faithful black servent. What will happen to our heroic three when the bad guys capture them?.....Who knows?

It is a moot point. Usually, if not always, they are rescued.

PD is like that. I am feeling pretty good at the moment but off in the distance I hear those PD tom-toms. The drummer is coming to get me, the jungle is impenetrable; and there does not appear to be any rescurer coming to save this poor old star-crossed, erztz-warrior.

While I am waiting to be rescued, I will try to be as optimistic as my doctor seems to be.

By the way, the doctor gave me a drug to settle me down when I give evidence at the upcoming trial. Should help calm the stress induced tremors.

Oh, and he had never heard of gou teng!!!

Wednesday 22 August 2012

Gou Teng might be a Good Ting

Ever heard of "Gou Teng"? Me neither until today. Then I had to research it on the net and here is what I found.

Traditional Chinese medicine might offer relief to PWP - maybe. Read this

Sounds Good, right? Well, read this. Maybe not so great.

What to do? What to do?

Well, at the moment, my yang is overpowering my yin. So I ordered four bottles of the stuff.

What have I got to lose?

$58.00, that's what.

I will keep you apprised.

Tuesday 14 August 2012

Don't Think I WIll Try It!!!

Weighed myself today. Down 8 pounds and I eat like a you know what. It's the result of walking every day for an hour, at 4:30AM?

Why walk? It's enjoyable, even in winter. Plus, exercise is thought to contribute significantly to a slowing down of the progression of PD.

Why 4:30 AM? Why not? There's nothing on TV and insomnia is a symptom of PD. I don't have insomnia but the number of hours I can sleep is about 5-6 and I always wake up at 4AM. So I walk and weight loss is just a happy side effect of that which I must do to help my brain.

But wait! there is another method of slowing the progression of PD while at the same time losing weight. It is fasting. Read an interesting article in The Guardian. Scientists have apparently found that fasting can help protect against brain diseases such as Altzheimer's and PD.

Who knew? Who cares!

Monday 13 August 2012

All's Well that Starts Well

I haven't posted in a couple of weeks because I have had nothing to say. Everything seems to be fine. My only noticeable symptoms are a shaking finger, if I point to something, occasional difficulty in expressing myself, and difficulty in handwriting (good excuse to get Dragon Naturally Speak). I can't explain the rush of symptoms following diagnosis. Some may well have been all in my head (of course they are, it a brain problem, idiot, but you know what I mean). However most were absolutely real, I just happen to be in a lull. Let's hope the "lull" lasts a long time. I am feeling optimistic. At present I don't know how fast the condition is progressing because the drugs control the symptoms so well.

Keep checking back. You never know when I have something further to say.

Tuesday 31 July 2012

Feelings, nothing more than feelings

Let's see I feel:

  • good to very good some days
  • tired most days
  • Stiff often
  • sore now and then
  • thirsty always
  • annoyed with myself off and on
  • optimistic every so often
  • lucky not often

Why is that? You might ask

I will tell you:

  • Medication helps. I would hate to think how I would be if there were no medications
  • Exhaustion: PD makes me tired and so do the medications
  • Stiffness - Just one of PD's little jokes
  • When I get a PD cramp, the after effects can last a few hours to a couple of days
  • the medication dries my mouth out and makes my lips sore, so I drink a lot of water and soda to keep them hydrated
  • I get annoyed with myself because some days I am negative about the future, not often, but it does happen, and, I worry about what I will look like to my children and grandchildren as the condition progresses.
  • I am optimistic when I read the experiences of some "old pros" who have had it 10 or 20 years and still live a full life, it raises my hopes as does the research I have read about (see below)
  • I am lucky. The condition seems to be progressing slowly and I am not suffering from MS or ALS, both of which are worse neurological conditions.

Overall, I am doing quite well.

<

Russia develops new medicine for Parkinson’s disease

Moscow, Sep 17, 2010 (IANS/RIA Novosti) Russian scientists claimed to have successfully tested a medicine which could be a breakthrough in treating patients of Parkinson’s disease.

“We have synthesised a compound which completely removes all symptoms of Parkinson’s disease in animals,” said Konstantin Volcho, a spokesman of Vorozhtsov Institute of Organic Chemistry in the southwestern Siberian city of Novosibirsk.

He said the tests conducted on animals with Parkinson’s disease “demonstrated that the medicine returns all parameters back to normal and does not require additional medication”.

“It has also been proven by long-term experiments,” he added.

The scientists believe the clinical trials of the drug could take at least two years, after which it will be tested on humans.

Researchers have already filed a patent application for the compound.

Though the medicine will not cure the patients completely but it allows patients to live a normal, healthy life for a longer period, the institute spokesman said.

“Currently there is no cure for Parkinson’s disease, the main target of PD treatment is to give patients the maximum quality of life for as long as possible,” he said.

To paraphrase Jack Layton, Hope and Optimism define my future now.

Friday 20 July 2012

Distant constellation, dying in the corner of the sky

Let's see: My dx (diagnosis) with PD was a year and a half ago. Initially, I had problems with my dancing hand, severe cramps, difficulty swallowing, too much saliva, stumbling over words, exhaustion, etc.

Then came the day of miracles and wonder when my neuro put me on amantadine (max dosage) and mirapex (Pramipexole). There was an immediate cessation of my right hand tremor and as time went by, most of the other symptoms were held in check. They have not been cured; I can almost feel them, just below the surface, banging on their bars, trying to get out; but, their escape is blocked by the drug combination.

Amantadine is a "dodgy drug" as one person put it. It is unknown why it is effective in some cases, but it works for me to calm my tremor. Mirapex is a dopamine agonist, a class of drugs that act like dopamine to stimulate nerves. It is lack of dopamine that causes PD.

All good things must come to an end, and eventually, I will probably have to increase the dosage of mirapex for it to continue to work, prior to its losing all of its effectiveness. But cheer up, once the DA stops working, there are other drugs, most notably, levadopa (L-dopa) a drug which is converted to dopamine in the brain. I hope it takes some years before I have to use that drug. I am in no hurry to get there

In the meantime, if you were to meet me, you wouldn't know I had the condition. Outwardly, there is no sign that I am dopamine-challenged. Inwardly, I still get the occasional cramp, dry mouth (likely caused by the drug) and, under stress, I sometimes stumble over words. All-in-all I feel very good and PD is that distant constellation, dying in corner of the sky.

Wednesday 18 July 2012

Sneak Attack!!!

Everything has been going quite swimmingly. There have been a few gliches here and there, but nothing I can't handle. Then came the attack.

My daughter was over and she and her mother were chatting in the living room. I decided to join them and as I crossed the room, it hit me. PD cramp down the side of my right leg, below the knee. I fell into the sofa and waited for it to go away. It took some time to do so.

Someone once said there is a thin line between laughter and pain. I bet they never suffered a PD cramp. The pain is a long way from laughter. It feels like someone has smacked you with a baseball bat and it is unrelenting. You try to massage it, without success. It just goes deeper into your leg. I have found the only way to defeat it is to stand up and stay in that position until it dissipates. Finally, relief, albeit relative relief. My leg still hurts somewhat 20 hours later. You never learn to curse until you have a PD cramp.

My daughter tells me she gets the same cramps and pain. Her physiotherapist told her that the cause of pain on the side of the leg (as opposed to the back of the leg) is neurological. In her case, it is the result of nerve damage after a couple of operations to repair a disc in her spine. Mine is because my brain is refusing to do its job!

It was with some trepidation that I took my usual long walk at 5 in the morning. Afterall, I could be a mile from home and if a PD cramp hit me then, I would have a problem. The solution I came up with was to take my cell phone, hoping my wife would hear the house phone ring. It never came to that. The walk went without incident except I saw a gang of racoons in a back lane. We live in a suburban neighbourhood (far from being rural) and have had the occassional racoon come up from the river, but nothing like this. There must have been 8 of them walking up the back lane in a group. Kind of following the leader into someone's backyard. I didn't stop, afraid that I would be no match for that many racoons. As I said, the walk was without incident, feeling good to be alive.

Monday 9 July 2012

WHOA - the sun will come up tomorrow

Just re read my last post. It sure sounds depressing. Trust me, it wasn't that bad. By the time I got back to the cottage and had a rest, I was fine.

Today, I am tired, but optimistic.

THESE MAGIC MOMENTS

The time is 5AM. I am at the lake and have decided to take my daughter's dog for a walk. It is going to be sunny and hot today, over 30C. The lake is perfectly still and there is only one other person on the boardwalk, a jogger who quickly passes me and acknowledges me with a stiff nod of his head. I smirk to myself, "I could run faster than that at his age!" But, no more.

We have been invaded by fish flies. Thousands upon thousands. Their corpses mat the boardwalk and crunch as you walk over them. The sides of buildings are covered with them, so thick you can barely make out the colour of the paint. They fly from out of the grass, in swarms, and I start picking them off the dog, my hat, my glasses, shirt and legs.

It's a typical July day at Winnipeg Beach. I stop walking and lean on the rail of the sea wall that protects the land from the huge storms that sometimes develop. But, not today. Today, everything is perfect, still water, the horizon bearing streaks of colour, the sounds of birds and fish flies and nobody else around. This day is magical and belongs to me and the dog. I feel optimistic and content.

And then, it hits me. I have parkinson's. I have an incurable degenerative brain disease. It will only get worse. I might end up in a wheel chair, like Muhammad Ali. Wait. Maybe this year, there will be a cure.

Magic can sometimes just be an illusion.

Monday 2 July 2012

SHAKING ALL OVER

SHAKING PALSY

NOUN: a degenerative disorder of the central nervous system characterized by Tremor and impaired muscular coordination.

The Shaking Palsy was first scientifically written about by James Parkinson in 19th century London. But the written history of Parkinson's dates back further.

From the essay "What Triggers the Shaking Palsy" by Donald Calne, the following:

The first known recognition of what we now call Parkinson’s disease was by one of the greatest original minds of all time, Leonardo da Vinci. Fascinated by the structure and functioning of the human body, Leonardo noted in about 1500 that some people experienced abnormal, involuntary movements and, simultaneously, difficulty in performing the movements they did wish to make. “This appears clearly in paralytics—whose trembling limbs move...without permission of the soul; which soul with all its power cannot prevent these limbs from trembling.”

Some two centuries later, the famous British surgeon John Hunter was probably referring to Parkinson’s disease when he commented on an odd phenomenon: Patients with severe tremor did not complain about tiredness in the muscles that produced the incessant shaking. “For instance,” said Hunter, “Lord L’s hands are almost perpetually in motion, and he never feels the sensation of them being tired. When he is asleep his hands, etc., are perfectly at rest; but when he wakes, in a little while they begin to move.” When Hunter made this point in a London lecture in 1776, his audience may have included a bright, 21-year-old student named James Parkinson, who later published his classic “An Essay on the Shaking Palsy”.

Today, most of us have heard of Parkinson’s disease, but surveys suggest that many people think it is a relatively trivial disorder, the cause of a bit of tremor in elderly folks. In reality, Parkinson’s disease is both common and disabling, a disease attended by major difficulties in balance, speech, and swallowing, and ultimately leading to near total immobility and even death. Well-known figures who have been afflicted include the current pope, former heavyweight champion Muhammad Ali, former attorney general Janet Reno, U.S. Senator Morris Udall, Canadian Prime Minister Pierre Trudeau, press photographer Margaret Bourke-White, and actors Michael J. Fox, Sir Michael Redgrave, and Sir Ralph Richardson.

. Fortunately, drugs control the visual symptoms of my shaking palsy, but inwardly, I feel a slight tremor in both arms and legs. It is hardly noticeable, but it is enough to cause me to sway sometimes, especially when I first stand up. However, this internal tremor does not stop me from doing anything and I wage war by (1) exercise (2) eating the right foods, (3) avoiding stress (4) trying to remember my medication.

Hopefully these will slow down the time until the armies of PD finally achieve their objective. It took 30 years for it to get Muhammed Ali into a wheel chair. Fortunately, I should be long dead in 30 years.

Death is the last of our great enemies, but once we lose that battle, I think everything will be alright.

Friday 29 June 2012

"Abstainer: a weak person who yields to the temptation of denying himself a pleasure." (Ambrose Bierce)

Right.

Now then.

I am afraid I may have to brand myself a moron. It's not like I haven't experienced the effects of missing a dose of drugs, or the effects of combining alcohol with amantadine. I have written about both before. There is nothing positive about either. So what do I do? Well yesterday, I neglected to take any medication between 3:30AM and 5PM and was somewhat perplexed that while watching "Being Human" (British version) on Netflix, my right hand started jumping around like it had a mind of its own.

You would think one should be able to control the movement of one's hand by issuing the "stoppit!" command from one's brain.

Unfortunately, the brain itself is the problem and no amount of thinking or issuing demands will overcome the lack of control the brain has over itself. My hand continued to vibrate and dance for at least 2 hours after I took my medicine (mirapex and amantandine) at which time, I decided a small glass of wine would not hurt me. Guess what! It did. Insomnia and only 2 hours of sleep.

Everybody makes mistakes from time to time, but only an idiot insists on repeating them.

I highly recommend the British version of "Being Human", if you can accept the premise of a ghost, a vampire and a werewolf living together and trying to act human.

Only a dreamer, a thinker and a philosopher would appreciate this show. Or, as my wife says, "an idiot".

Ok, I can accept that title today.

Wednesday 20 June 2012

I"'m sure hurting (whooo, oh, oh, ooooh) Yeah hurting (whooo, oh, oh, ooooh)" Roy Orbison

It's been 10 days since my last entry and things are good. Well, if you don't count myoclonic spasm symphony and the muscle spasm that has inserted itself in my back.

I believe I mentioned the myoclonic spasms. They occur in bunches anytime my body relaxes. For example, at bed time, or lying down watching TV, or reading a book sitting up. Some can be quite violent, lifting my head off the bed a couple of millimeters when the spasm occurs in my neck. Others are just rather amusing. They cause an arm or a leg or, as I said, my neck, to suddenly twitch as if I have received an electric shock and they occur without warning. I have between 3 and 7 per session. They never occur when I am doing something, only when I am relaxing. Everybody has had one at some time, usually just as you are falling asleep and you are literally jerked out of your reverie.

The muscle spasm has been around for 4 days now. I can't remember hurting myself and from what I have read, muscle spasms can occur anywhere on the body of a PwP. It is very bothersome and can really hurt at times. Its severity is the same today as when it first occurred so I think that cancels out an injury. Heat helps and fortunately, we are suffering from a mini ice age here, so I do not get too hot lying on a heating pad. It certainly curtails my activities.

I also have a slight pull in my groin, but it is the result of activity. Whenever that happens it reminds me of watching Rita Rudner on TV. She is a funny lady. She said,"I got kicked out of ballet school because I pulled a groin muscle. It wasn't mine."

page reads to date: 6072

Monday 11 June 2012

Dreaming men are haunted men

(stephen vincent benet)

While sitting in the waiting room at the optometrist's office, I chanced upon an article in Reader's Digest about Professor Tore Nielsen of Universite de Montreal. He is the director of the university's Dream and Nightmare Laboratory. It is his thesis that dreams and health are related and the type of dreams you have may be symptoms of your health. The article is hardly scholarly, but it is interesting.

In my case, Professor Nielson might be right on the mark. In a nutshell, he says that violent, action-packed dreams that may or may not be accompanied by attempts to act out the dream, are a symptom of parkinson's. Now, re-read the post from April 21st, "Am I from a Different Planet...." and previous posts about my dreams.

Enough said?????

Thursday 7 June 2012

“The strongest symptom of wisdom in man is his being sensible of his own follies

Bradykinesia - I had it yesterday and a few weeks prior - or at least I thought I did. Today, however, while on my walk, I decided not to listen to Afghanada, a radio drama about the troops in Afghanistan, but rather I would listen to George Thorogood and the Destroyers, billed as the world's greatest bar band. Their music is hard driving rock 'n roll. It is amazing how music can control movement. For example, all of my grandchildren would stand and bounce up and down to any sort of lively music, quite naturally, at 10 months or so. For me, the beat of the Destroyer's music caused me to speed up my walk. I finished 10 minutes earlier than yesterday. What relief! My bradykinesia was all in my head (I hope). I just needed some help. I continue my descent into hypochondria.

In fact, I have self diagnosed myself as having paranoid hypochondria....but....I may be faking.

Wednesday 6 June 2012

Slow Down You're Moving Too Fast

Another little gem resulting from the loss of dopamine-producing cells is bradykinesia, a fancy word for slowness of movement. It is one of the "cardinal manifestations" of parkinson's. In a scholarly article about bradykinesia, a professor Alfredo Baradelli wrote

We argue that bradykinesia results from a failure of basal ganglia output to reinforce the cortical mechanisms that prepare and execute the commands to move. The cortical deficit is most apparent in midline motor areas. This leads to particular difficulty with self-paced movements, prolonged reaction times and abnormal pre-movement EEG activity.

And blah, blah, blah, blah. Who needs it! All I know is I am slowing down. Not seriously yet, but definitely slower. My morning walk takes about 5 minutes longer these days. I try to speed up, make my stride longer, but I usually give up after a block and just settle into what I consider to be glacial movement. I will keep on trying, but I am guessing I will continue to slow down.

By the way, slow or fast, I am shedding weight from all that exercise. Ten pounds so far. Walking has been a better weight-taker-offer than running ever was. Good thing too because I am becoming addicted to chocolate. I am going to have a bar before I go to bed. Sounds like a plan.

Feelin' groovy, dah, dah, dah, dah, da da dah.

Sunday 27 May 2012

Just Call Me Lazarus

For the past two days, I have felt very parkie. Tired and slow. I also experienced tremors for the first time in a long time, in both hands and both legs. Not a good sign. When a second side, in my case the left side, starts to experience tremors, the PWP is probably entering the second stage of the condition and there are only 5 stages, the last stage being very unattractive.

Today however, I feel good. No tremors on either side. I took a 2.5 mile walk at 5AM and felt good with a lively step. It was raining and I could have taken a day off, but I felt good enough to ignore the rain and get the exercise.

Of course, I am not completely without symptoms. I was changing a light bulb on the bottom of the microwave oven over the stove top, one of those tiny bulbs that resemble the smallest flash bulbs from the 70's, and to get to it, I had to unscrew the cover that protects the light from grease. Unscrewing the cover was easy. My hands were shaking but I managed. However, screwing it back in was impossible. The object was to hold a tiny screw still while inserting the screw driver into it. I might as well have been trying to thread a needle, blindfolded. I could not stop my hands shaking and so, the screw now lies atop the stove, the cover is hanging down, and I have admitted defeat. The problem will be solved by someone else.

Frankly my dear, I don't give a damn!

Now, that sounded petty, didn't it? The fact is, I have been very unsettled for the past two days and today I feel good, very good, and no stubborn little screw is going to screw up my mood. At least, that is the plan.

Saturday 26 May 2012

You Didn't Know You Were a Shrink, Did You?

Statistics for May

  • Canada 364
  • United States 38,
  • United Kingdom 34
  • Russia 25
  • Ireland 19
  • Germany 5
  • Ukraine 5
  • India 4
  • United Arab Emirates 2
  • Finland 2

Some other countries: Brazil, Moldova, Singapore, Estonia, Philippines, France, Spain, Egypt

Total page views to date = 5,693


Thanks to all readers. You make living with PD much easier because I am able to unload my troubles on you.

Thursday 24 May 2012

The Eyes Have It.

PD, or the medication I take to control it, dry out my eyes, mouth and lips. Consequently I have to:

(1). put drops in each eye three times daily to keep them moist. The first time I did it, I put on my glasses to watch TV and the people on the screen turned into grotesque monsters. I realized later that it was probably because the liquid covering my eyeball gave me an extra lens. It was like looking through 2 powerful lenses on each eye!

(2).spray the inside of my mouth with some liquid that acts as a sort of artificial saliva and coat my lips with lip balm. Unfortunately, neither lasts too long so I have to keep drinking a liquid and licking my lips. When I am stressed, the dryness increases incrementally and my constant licking and troubled speech are not at all attractive. I always have to explain my dilemma and the listeners always empathize and understand why I seem to be addicted to coke.

Unfortunately, my addiction to coke (the drink, not the drug) is all too real and generally marks an arrested development of my journey into old age. Thank goodness it now serves another useful purpose.

Monday 21 May 2012

" Everywhere is within walking distance if you have the time." Steven Wright

James Joyce once said, "Shakespeare is the happy hunting ground of all minds that have lost their balance". Well, if that is true, I may get back to reading Shakespeare one day (I last read him when we were forced fed his plays in high school.) You see, my balance just ain't what it used to be. I am not falling or anything like that, not yet. I just feel a little more unstable from time to time; but, it is possible I may be taking my first steps toward becoming an aficionado of the Bard. This weekend was one of those times.

I spent the Victoria day weekend at the cabin with my wife, daughter, son-in-law and my 11 month old granddaughter. Five of us, plus 2 big dogs, in a cottage that can be no more than 700 square feet. The two dogs and scattered baby toys created an obstacle course though which I meandered amazingly well, but I also felt unsteady on my feet, like I had had a drink or two.

I earlier called it "wobbly legs" and I was certain I was walking oddly. I asked my wife if she noticed that my walk was a little odd. She said "not at all". Do I seem unsteady? "Not that I noticed."

What is it then?

I may have addressed this issue earlier, but it feels exactly like it did when we crossed the ocean on an ocean liner. For the first couple of days, you have wobbly legs and kind of bounce from wall to wall in the corridors. Then you get your "sea legs" as you adjust to the movement of the ship, and can navigate quite well, albeit rather stiffly.

The only thing I can conclude is that the feeling that I have of wobbly legs, versus the fact that my walk looks normal, is that I am having internal tremors in my legs. The feeling will pass, but as I watch my granddaughter, who only learned to walk about a month ago, I can't escape the feeling that someday my walk will resemble hers.

Some famous person was quoted as saying that he/she learned to walk as a baby and hadn't had a lesson since. Me too, but the future is a little iffy.

By the way, in spite of my small difficulties, I really enjoyed the weekend. I can't get enough of my grandchildren!

Sunday 13 May 2012

I've Never Met an Astronaut...until..

Hands up all those people in the viewing audience who have seen an astronaut floating in space. I don't mean on TV but in space, so close you feel you can reach out and touch him. Hmmm. I see no raised hands so nobody has had that exhilarating experience. Well, too bad, I have had it and, while it was fascinating, it was also a touch unnerving.

Yesterday I awoke and there, right beside my bed, bent at the waist and floating, was a fully equipped astronaut, seemingly unaware of me. I think he was dead but before I could find out, he disappeared.

Hallucinations! Just another PD mystery. These things last no more than a second but during that second, they seem real. Once you understand they are just your brain having its little joke, you relax and enjoy them and wonder what will be next. Maybe it will be Michelle Pfeiffer. One an only hope.

Friday 11 May 2012

A Trifecta of Treats

I went to the neurologist yesterday and told him my new big 3 symptoms, (1)dry eyes, (2) cold, painful hands and feet and (3)the incident where I lost control of my equilibrium. He sympathized but said they were all symptoms of PD and there was not much he could do for me. He was surprised at the loss of control and added that he was quite sure it was an isolated incident and I should get out and "push" myself when I next go on my walk and I would see that another such incident was unlikely.

That is exactly what I did this morning. I took a faster-than-usual walk over 3 miles with no problems at all. Of the neurologists I go to, this is the one I trust the most. If he says it is an isolated incident, then it is; so, I will continue my morning walk.

He also assured me of my biggest concern. I do not have multiple system atrophy. When I got home, I googled the condition, just to make sure, and found it "is a rare condition that causes symptoms similar to Parkinson's disease. However, patients with MSA have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating."

Trust, but verify.

I sweat like a pig when I run. My blood pressure is good and my heart is in great shape, so I guess he is right. Thank God! I will just keep on exercising. This seems like the best way to keep PD at bay.

Exercising is a form of flagellation but, because I have a touch of OCD, I have to keep doing it, as I have done over the past 40 years, hating every step; but now, knowing it is necessary, I will have to learn to love it.

Nope, can't see that happening.

Sunday 6 May 2012

I am beginning to confuse reality with Illusion / Delusion?

Since both eyes are now suffering from vitreous detachment........ (here I hasten to add that you should try not to be smug, the vitreous shrinks and pulls away from the retina as we age).......I have gained a mess of silent sidekicks.

You see, as the shrinking of the vitreous continues and pulls away from the retina, parts of the vitreous can remain attached by slender strands. Naturally, you can see these strands and other debris in the form of floaters - those little black dots and web-like lines that appear in your field of vision. In my case, these strands present as curved lines in the sides of my eye and intricate webs in front. If I sit still, the side lines blur shapes and my parkie brain constructs bodies out of those shapes. For example, right now, if I hold my head still and look straight ahead, I can "see" a little boy standing beside me when in reality, it is a round fan and the radiator. Nothing too spectacular.

All this can be fun (like being on LSD, I guess), but it can also be dangerous. On the way home from the lake, after 2 hours of sleep..... (I had a little bout of medicine induced insomnia last night)...at 7am, I saw 3 deer on the road, 2 bicyclists and a semi-trailer pulling onto the highway. These formed when my floaters combined with the background to form these illusions, which disappeared as I got closer. But, if you see them, and they always appear to be shapes with no solid bodies, with no colours, much like that invisible plane that wonder woman flew, you blink and hold closed for a second or or two; if you do that, the floaters will move to another spot and the delusion will disappear.

They tell me the floaters will also disappear with time. If that is the case, it will be the only thing to improve as I grow older and deteriorate.

Through parkinson's I have discovered illusion is often a welcome sidekick of reality.

As Steve Martin once said, “Through the years, I have learned there is no harm in charging oneself up with delusions between moments of valid inspiration.”

Saturday 5 May 2012

Cry Havoc and let loose the cats of war.

After my brush with the realities of parkinson's on my last walk, I have been loathe to leave the house, fearing a repeat. I have been feeling fine, no tremor or balance problems so, I decided this morning to take a short walk (about .5 miles). I also decided to do it early to avoid meeting anyone. At 4:45,I left the house. I would have left earlier, but someone has hidden my idpod (no, I didn't misplace it, so who is the culprit???).

The thing I have noticed on these early walks is that our neighbourhood is overrun by rabbits and squirrels. Their influx has a Genghis Khan quality about it. These vile creatures sweep in and plunder our gardens, killing our plants that we (and by that I mean my wife) have worked hard to cultivate. Squirrels have even chewed parts of one of our cedar deck chairs. And, forget about having lighting in the trees, the squirrels will eat the wires.

Why is this happening? We are an urban area afterall.

Cats....or the lack of cats... is the reason. Citizens complained about the number of cats running loose, so owners started keeping them off the street. The result. Rabbits and squirrels.

But, I digress.

About my walk. I have decided to take baby steps and work my way back up to 3 miles. Thus, my walk was less than a mile. I felt a bit wobbly but I am chalking that up to an overactive imagination. I felt good. I met nobody. My gait was fine and arm swing normal. Totally uneventful. I was actually greatful my ipod was missing; otherwise, I might have gotten into my favourite radio drama, "Afghanada", (I have it recorded) which takes about a half hour to finish and I no doubt would have stayed walking for the duration and ruined my "baby step" plan.

The upshot of all this is, at present I remain optimistic; although, I am standing on the event horizon of the dark side and could easily be swamped by its negative forces. How am I going to fight that when I know chances are I will lose?

Perhaps I should buy a cat.

Thursday 3 May 2012

You think you've had an "Annus horribilis"!!!!

I turned off the light and headed for bed. It was dark, so I could easily see the small bursts of light in my left eye.

Now, you might remember I had laser surgery on my right eye in January or February. Well, guess what! That experience had all started with small bursts of light in my right eye.

I call up the optometrist and she fits me in later in the day.

Diagnosis? That's easy. It is back! My left eye has decided to join in the war against me.

I never saw it coming.

Wednesday 2 May 2012

Walk like a man, fast as you can...

Parkinson's raised its ugly head yesterday. I was out for my walk at 5AM and after about 2 miles, my legs started to feel, well, odd.

"Go home," I said to myself. But no, I am nothing if I am not obsessive. I had to finish that last mile. Every step was getting smaller and required more effort, but I kept on. Then, when I was a half a block from home, it hit me. I couldn't walk a straight line. I would go forward, get off balance, and go backward. I couldn't even avoid the puddles that seemed to surround me.

Now usually, at that time of day, I see nobody in this lane where I am trying to walk; but, on this day, there is a guy loading a half-ton truck. He sees me staggering around, like a serious alcoholic and pretends not to see me, Every so often he is compelled to look. I get up to the truck and he gives that "look" that people give to drunks. I tell him I have parkinson's. He introduces himself and asks if he can drive me anywhere. I tell him I live about 5 houses away and apologize to him because I feel that if I stop to chat, I will not get moving again. I leave, weaving from side to side, and struggle up the lane. By the time I reach my back yard, I am having trouble remaining erect. I try to steady myself against my wife's car. I turn and, wouldn't you know it, a man and a woman are there walking their dog. They give me that "look", so I tell them I have parkinson's in case they thought I was drunk. "Oh, OK," the man says and his wife utters a nervous laugh. I open the gate. I have about 10 meters to go, but I am really rocky, so I sit on the garage steps to recover. I sit there a few minutes and then stand up. I head toward our wooden deck which has 2 levels. The first level is about 8 inches off the ground. I try to put my foot on it, but it might as well be Mt. Everest. I almost fall backward. I sit on the ground for a moment and then crawl the rest of the way. I immediately take my drugs but in doing so, I realize I have missed yesterday evening's dose. 12 hours without medication!

Today, I feel OK.

Tomorrow I will feel better.

I will never miss another dose.

I just looked at the clock. I am an hour late for my afternoon dose.

So long.

Wednesday 25 April 2012

EVERYTHING IS ALL RIGHT, UPTIGHT, OUTA SIGHT!

Some time ago, I read a column in the local newspaper about four men deciding how they wished to die. One of them answered "with dignity". Apparently he was a person with parkinson's.

Thirteen months ago, I was diagnosed with parkinson's.

About 20 years ago, I was in a plane about to land in Houston when we were told the nose wheel had not come down completely and we should assume the crash position.

As the airplane began its descent, I just assumed everything would be OK, even when I looked out the window and saw fire trucks racing toward us. Obviously, I was correct. Everything turned out OK. The nose wheel came down enough and we landed safely.

I am having the same reaction to parkinson's as I did with the potential plane crash. Everything will be OK and so far, so good. Nothing has changed in my life, now that the medication has taken away my tremor. Well, other than my pre-pubescent voice. I am working on that.

I hope the person who wishes to die "with dignity" achieves his desired goal; as for me, I intend to live lacking pessimism. I refuse to "go gentle into that good night".

When I do die, I want to be cremated and have my ashes spread on Michelle Pfeiffer.

5150 and counting - this weeks stats

Canada 119

United States 16

Russia 13

United Kingdom 11

Ireland 3

Germany 2

Bulgaria 1

France 1

Gabon 1

Indonesia 1

Saturday 21 April 2012

Despotism of the Ether Lords

You have noticed the change in the appearance of my blog. I didn't do it. Blogger did. They took off my old format and gave me some "classic" templates to choose from. This is what I chose.

The cybergods have gone on an ether binge.

Am I from a different planet? No, seriously.....am I?

This condition and/or the medication can cause some strange things to happen. One or both can lead to vivid dreams - a type of virtual reality. Unfortunately, all mine are eerie and rather disturbing. Two recent dreams;

1. I am walking through a forest. I can feel a cool breeze and it makes me shiver. Just past the entrance to the forest, green leaves begin to turn yellow and, as I continue my journey, the leaves change to orange and back to green. This pattern continues until the trees are leafless. Tall trees with stout limbs. In the distance I can see things hanging from the trees and suddenly, I find myself among the hanging things. I look at them. They are humans, hanging by their necks. All dead. As I walk, the hanging humans become more numerous and soon I am bumping into them and then....I wake up!

2. I, and somebody else, are being pursued by a man in a black car. We are in a small "very smart" car. I am driving. We head out of town and in the distance is the "forest reserve" (Shilo brats will know whereof I speak). We take a dirt road that runs along the north side of the forest. We careen down the road, dust flying everywhere, with the black car catching up when I realize I am no longer able to steer and my legs are too short to reach the peddles. My companion says nothing he/she (not sure which) just stares ahead. "Don't worry" I say, "I will turn on the automatic drive and GPS and the car will know where to go". The car turns to the right onto another dirt road and then....then I am in a dank basement, with my companion, who now is most assuredly a female dressed in blue velvet. There is a terrible odour. We are frightened. A presence in the room is forcing us toward a steel door. The smell is getting stronger. The door opens and we step inside. The presence is no longer with us and we relax. The odour is overpowering. I turn on the light and piled up on the floor are - I don't know, but whatever they were, they were things that stank. Anyway, my companion turns to me and I take her hand and we run toward the steel door but the presence is back and is chasing us. We pass through the doorway and I reach back to pull the door handle and close the door to keep me (the female is gone now) safe from the presence. Then......... I wake up to reality, sort of, with my right hand stretched out of the bed, reaching for that door! Only a dream! Kind of interesting. Even wide awake I try to imagine endings to the story but I get bored and start exercising before leaving for my daily walk.

All kinds of lunacy happens in dreams, all kinds. Or, maybe I am just a lunatic!

Monday 16 April 2012

Zonin' in the Gloamin'

What follows could be attributed to one or all of the following:

1. PD
2. Mirapex
3. Mad Cow disease
4. The Twilight Zone

I am lying in our queen-sized bed in that state where you appear to be sleeping but you are aware of your surroundings and the people in it. I am lying on my side when I feel a child walking on the bed beside me. His footfalls are real to me. I can feel each one. I will myself to ignore the sensation because there are no children in the house and I must be dreaming. The phantom child continues to jump and then, as mysteriously as it had commenced, the child disappears. I return to trying to get to sleep when I "feel" a presence at the foot of the bed. It's not a child this time. It is an adult. She just stands there. I immediately sit up, my neck hairs bristling to attention. Nothing. Nobody is there. My heart is pounding and I now know the uncertainty felt by Poe's character in The Raven...Deep into the darkness peering. Long I stood there wondering, fearing; doubting, dreaming dreams no mortal ever dared to dream before..............

Probably just an overactive imagination in the twilight zone of sleep. But, I don't enjoy the results. I would rather trim my nose hairs with a weed whacker!!

Friday 13 April 2012

And the hits just keep on coming!

Two new developments:

1. While I was lying down on the bed, the big toe on my right foot started jumping around.

2. I can feel a periodic, slight tremor starting in my left hand. It is nowhere near as bad as the right hand tremor but it does indicate a progression of the condition.

I had another voice therapy session today. It was quite enjoyable. One exercise involves making the "aaawww" sound into a microphone connected to a computer. The computer shows you the loudness of your voice and the quality of your voice as moving graphs across the screen.

The therapist is trying to get me to speak louder. I feel like she is having me shout, but a sound measuring gadget shows me that I am speaking too softly; my decibel range is well below the range of 65 to 75 decibels, the normal speaking range. With work and encouragement, she had me speaking normally. I had my doubts, so she turned the gadget toward herself and she spoke into it, in her usual conversation voice, and I could see she was in that normal range. That gives me a clue as to how I should sound (internally) to achieve normal loudness in my everyday speaking. I am actively trying to do that now, even though I still think I am shouting.

Oh well.....what's next?

Wednesday 11 April 2012

The Internet is becoming the town square for the global village of tomorrow (Bill Gates)

This past week's page views:

Canada 64
United States 12
Ireland 8
United Kingdom 6
United Arab Emirates 2
Taiwan 2
South Korea 1
Latvia 1
Malaysia 1
Germany 1
Kuwait 1

Total to date 4,812

Thank you.

Tuesday 10 April 2012

Inside Information!

23andMe is an organization that uses DNA to aid in the research of certain diseases/conditions, including parkinson's. They have a world-full of potential donors. If you contact them, they will send you a kit to collect your DNA and when returned and analyzed, they give you your DNA profile with respect to your health and future health possibilities. In the case of parkinson's, if you have the condition, the entire process, including shipping charges, is free; otherwise, there is a small fee.

I think 23andMe is a useful organization and will help in finding cures for several health problems. The organization recently published some odd associations between parkinson's and certain traits.

(from: https://www.23andme.com/about/factoid/pd_phewas_personality/)


We found that the disease is associated with certain personality traits including being more agreeable, more neurotic and anxious, and being less extroverted. Based on survey results, researchers also found that those with Parkinson's were less likely to have sky-dived or had liposuction, but more likely to prefer sweet foods over salty ones.

Oscar Wilde once remarked that it was quite sad that there was so little useless information. Hmmmm.

Monday 9 April 2012

I am starting to prefer the history of the past over my dreams of the future.

I watched Muhammad Ali toss the first pitch in a baseball game. He was diagnosed with parkinson's in 1984 and now is all crippled up and shaky and unable to throw the ball. It looks as if he is totally dependent on others. That is a scary future; however it has been 28 years since his diagnosis. 28 years from now I hope to be pushing up daisies.

It is hard to believe that the most well-known person in the world can go from a brash Cassius Clay to a totally disabled shadow of a man. I remember him at the Oscars with George Foreman when the film, "When We Were Kings", won best documentary in 1997. He was expressionless (PD mask) and shaky but still able to walk, climb stairs and generally come off as being independent. So maybe I will get a good 15 - 20 years in before the game is over.

With ever more effective drugs, I hope to lead a fairly normal life. Things can change. 8 months ago my right hand had a mind of its own, today, thanks to drugs, it is so calm I wonder if I have PD, and in the future....who knows? I try not to dream about the future.

Although Ali has described his PD as his life's greatest fight, he has also brought a touch of humor to his condition.......

"I always liked to chase the girls. Parkinson's stops all that. Now I might have a chance to go to heaven." (Muhammad Ali)

Parkinson's has Ali on the ropes, but he continues to fight and is still the "Greatest".

Friday 6 April 2012

I am so clever that sometimes I don't understand a single word of what I am saying. (Oscar Wilde)

You ask me how I am doing. Take a seat, and I will try to tell you. It is a tale of quiet optimism, occasional pessimism but rarely, if ever, fatalism

I am fairly lucky. The only noticeable PD symptom these days is my voice, or lack thereof. It seems to almost disappear at times. Thank goodness for speech therapy; although, I have a very sore throat and can't practise like I should.

So, you say, you are losing your voice! What's the big deal?

Well, sit back and I will tell you. The British Geriatric Society did a study in 2005 in which it asked PWP about how speech problems affected them. Here are some of their findings:

Central concerns were not that voice was monopitch, particular sound contrasts difficult, or similar. Except in the most severely affected speakers these restrictions could in extremis be modified, at least for brief stretches. Rather individuals focused on the impact changes exerted on ability to communicate, their view of themselves, and the detrimental effects of the effort required to overcome physical and mental limitations for anything beyond short periods.

Further difficulties with conversations linked to changes such as distractibility, diminished attention span, problems initiating speech movements, difficulty finding words and formulating ideas. These rendered it difficult to get into conversations and hold one’s place there, led to feelings of frustration at not being able to make one’s needs known and depression or annoyance at being neglected by others. A frequent consequence was withdrawal


You can see there is an effect. For a PWP, including me, the speech problems can be annoying, frustrating and embarrassing.

I am learning to cope with the problem, usually by remaining silent, but other times just going with the flow. But, as I said, it can be frustrating. It is like I am waiting for the tulips to bloom but I forgot to plant the bulbs.

You will have to excuse me, I am being called to dinner. Ever onward and upward and always on a full stomach.