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.

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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.

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.

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.

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.

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.