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.

"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!!

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. .

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.

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?

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!

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.

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.