Life Continues

I am not a huge fan of PD. It is a series of comebacks. Ups and downs. Yesterday, I felt fine - even went out to a friend's for dinner - had a couple of glasses of wine - no problems. Today I feel rather parkie, slow, tired, a few leg cramps and myoclonic spasms. Tomorrow? Who knows? Who cares? I will find out soon enough. If it turns out bad, there is always the day after tomorrow. That's life with parkinson's.

On the upside, my grandchildren were over today. Three of the strangest little creatures. They can make me smile just by arriving. They bring me joy, even through the parkie fog. For the 2 hours they are here, they are the fountain of my youth, any longer and I age rapidly. They are my wife and my reward for not murdering their parents when they were teenagers.

The inexplicable; the unexplainable.

Sometimes, when I feel a tad uneasy about my condition, I stop and think of people worse off than me. Three of my childhood friends come to mind.

First there is my best friend in my youth who has an illness that renders him helpless. His mind is sharp but his body seems to be failing him and the doctors don't know why.

Next, after 40 years, I got together with another good friend, last October. He was, or appeared to be, in good health; certainly he was full of life and excited about a show he was promoting. He phoned me last week, I think to say "goodbye". His body is riddled with cancer and no treatment will help him.

Finally, a third friend from my youth, who I last saw decades ago, died recently. He had had his heart replaced a few years ago and was doing well - when he died of lung cancer.

The cruelties of life. And I have PD. Is there any comparison? I should count my blessings. I have a degenerative brain disease the symptoms of which are controllable. So, when I get a little down, I think of these three friends and others, and realize I am one of the lucky ones and get on with my life as usual, which now has a touch of sadness to it.

As for my own condition, I am doing well (touch wood). PD and sadness are not things I dwell upon, all the while knowing they linger in my mind, waiting.

I can no longer go for my walk because the sidewalks are wet and icy with a spot here and there to remind me there are some dog owners who cannot fit into the sub-category of "Responsible Owners". To make up for this, we purchased a stationary bike. We had one before, but it just became a place on which to hang our cloths. Now; however, there is incentive to get going on the new one. I am actually looking forward to exercising!

Can I see another's woe,
and not be in sorrow too?
Can I see another's grief,
and not seek for kind relief?

William Blake

The darker side of irony

My favourite American poet, Robert Frost, once remarked,

“In three words I can sum up everything I've learned about life: it goes on.”

Was he a fatalist, pessimist or optimist? I think a "fatalist". He sounds like I feel today and I am fairly fatalistic these days. Why? Well, follow closely.

Yesterday I saw my neurologist. We did a few physical tests which I passed easily. I mean, how hard can it be to wiggle your fingers! He commented on how well I was progressing. I told him about the incident when I could not control my feet and ended up, face first, in a snow bank. He said that happens with PD and added,"It might never happen again" and "make an appointment for 6 months from now." I walked out of there feeling pretty good

A definition of Irony: incongruity between the actual result of a sequence of events and the normal or expected result

Flash forward. I went for my usual walk today. About 2.5 miles into it, the muscles in my right upper side started to try and bend me sideways, to the right of course. It didn't hurt and I was able to square up my shoulders for a minute or so before the right side started up again. By the time I got home, I had to lean against the outside wall of the house to prevent myself from falling. When I walked into the house, my wife was there and had to steady me so that I would remain upright and get into a position where I was able to sit. I felt somewhat helpless. The right side struggle diminished and after only 5 or so minutes, disappeared completely. That was at 6AM. It is now 6PM and it hasn't showed itself again.

I am doomed to a life of consistent inconsistencies.

Just to lighten up this entry, here is a depiction of irony that I found on the net:

Life can be a Rubik's cube some days!

When you are diagnosed with PD, a condition that you have heard of, but never really understood, you read everything, starting with 2 books by my favourite canuck, Michael J. Fox. You devour articles on the internet and watch hours of videos on youtube. You decide PD is not going away, so you might just as well learn to live with it.

You are only fooling yourself. You hate the condition! You force it into the darkest recesses of your brain in an attempt to ignore it and, until your hand starts shaking, you are relatively successful. Then, wonder of all wonders, you are put on medication. In my case, amantadine first. It is an anti-viral drug which calms the tremor. Nobody is sure why it works, but it does, just not completely. You get a second drug, in my case mirapex, a dopamine agonist, a drug that fools the dopamine receptors into thinking they have received dopamine. No more tremors! Life returns to normal and while PD still intrudes into your thoughts, it is not the monster it once appeared to be and there is no need to ignore it; rather, we PWP just get on with the good life, with PD as our dark, but non-threatening, companion.

Pessimism, that form of insanity that insists things will go bad because currently all is good, has no place in this conversation.

To be optimistic (or for that matter, pessimistic), we need more facts to change/distort ......like these from parkinsons.ca.

About Parkinson’s disease

• Parkinson’s is a chronic degenerative neurological disease caused by a reduction of dopamine in the brain.
• Parkinson’s disease was first described by Britain’s Dr. James Parkinson as the shaking palsy in 1817.
• Most common symptoms are: tremor (shaking); slowness in movements, muscle stiffness and problems with balance.
• Other symptoms may also occur for some people, such as fatigue, difficulties with speech and writing, sleep disorders, loss of sense of sm ell, depression and cognitive changes.
• Parkinson’s will worsen over time; each person with Parkinson’s is unique and may experience different symptoms.
• Currently there is no cure for Parkinson’s disease.
• Most people manage their symptoms through medication.
• Other interventions such as exercise programs and speech therapy can also help.
• A small percentage of people with Parkinson’s may benefit from surgery (deep brain stimulation).
• Finding the right treatment as symptoms change over time is important and requires the expertise of specialized health-care professionals.
• A single cause for Parkinson’s has not been identified. Researchers are studying many theories such as the role of genetics and environmental exposure.

“Facts do not cease to exist because they are ignored.” ― Aldous Huxley

Just the facts, ma'am

If you are old enough to recognize the headline of this entry, you may have to face parkinson's at some point in what is left of your future. I ignore the facts and instead, I concentrate on the anti-facts, projecting that I will improve over time as treatments change. As Einstein said, "If the facts don't fit the theory, change the facts". The current facts don't fit my theory but I can't decide which of the facts to change. They all seem so absolute.

Here are some facts about PD in Canada. Will you be one of the unfortunate over 65'ers?

About Parkinson’s disease in Canada

• More than 100,000 Canadians are estimated to have Parkinson’s disease.
• This number is underestimated as there is no national population-based study on PD.
• Due to the aging baby boomer population, this number is expected to rise dramatically. The population aged 65 and over is predicted to rise over 30 years from 11.6% to 23.6%.
• Those diagnosed with Parkinson’s under the age of 40 are referred to as “Young Onset.”
• The average age of diagnosis is 60 years.
• The majority of those diagnosed are over the age of 65.
• Parkinson’s disease is not a normal part of aging ; but the incidence increases with age.
• Direct costs for Parkinson’s disease (hospital and physician care and drugs) total $86.8 million.

More facts next entry.

In the meantime, ponder the words of Mark Twain, "Get your facts first, then you can distort them as you please."

Ten men waiting for me at the door? Send one of them home, I'm tired. (Mae West)

I am no longer asymptomatic since our return from the tropics. The worst of it is exhaustion. I can work successfully until about 11 AM when I must take a nap. My nap.....my sanctuary.....my mind shuts down for about 1/2 hour and when I awake, I feel refreshed .....for about two hours..... and then I start getting tired again. I think that will be my life, one long process of getting tired. Oh well, no day can be all bad if I have that little nap.

My tremor has returned when I walk. It had disappeared while down south. Again, this can't be a coincidence. What factors are different between north and south? First, the obvious, it is warm down there. Second: I get more vigorous exercise when it is warm and there is an absence of snow. Finally, I am under no stress in South Beach - it is 3 weeks devoid of stress. There they are again....exercise and no stress....the two generals in the battle against PD.

I can't wait for summer so I am ordering a stationary bike so I can exert myself. I will close the door, turn the heat up high, crank up the ipod and go biking to nowhere.

Oh yes, while I am going nowhere, I will be thinking of nothing. Melancholy is incompatible with bikes going nowhere.

Sweet home Manitoba. Lord, I'm coming home to you

Lets see. I leave Miami at 4 in the morning and the temperature is already 24C. I arrive home 6 hours later to -10C and this:

The next day, I take my hour walk, in the snow. I only go a little over two miles or about 1.2 miles less than an hour long walk in Miami Beach. During my winter walk, I have the distinct feeling that I am going to fall over. Plus my right hand is dancing while hanging by my side. In other words, I have symptoms when I walk in the winter but I have few, if any, symptoms when I walk in the summer. What's up with that?

In my life's winter, I will try to find my invincible summer. What choice do I have?

Now,as I said in an earlier entry, on to exercise. I hate exercising. I always have. Whether or not to exercise is a daily decision. I started running about 30 years ago 4 - 5 times a week, 3 - 5 miles and I detested every step. Fortunately my touch of OCD (just a touch, it only affects me positively)kept me going but as I approached 65, I was determined to change my run to a daily walk of 3 miles. PD confirmed I had no choice, I would be walking, not running, and I noticed it was beneficial immediately. A half mile into the walk, my tremor would stop, even without medication. This improvement could only be the result of exercise. Recently, this hypothesis was confirmed:

"Recent research has shown that exercise seems to protect the dopamine-producing nerve cells that are lost in Parkinson's, helping them work better and survive for longer.

"This could potentially slow down the progression of Parkinson's – something no current treatment can do."More at Parkinson's UK

My daily exercise begins with 15 minutes of stretching all the muscles in my legs, my neck, chest and lower back. I then take 10 pound dumbbells and do 30 reps each of exercises designed to strengthen my chest, shoulders, arms (both bicep and tricep)and hands. Following that I use resistance bands and tubing to strengthen my inner and outer thighs. These strength exercises take another 25 minutes at the end of which (4-5 days per week), I do my walk. Apparently, my walk will be longer in mileage come the summer. The only trouble is, our summer is like an extra-marital love affair, extremely hot, a thrill a minute and gone before you can say good bye. (Not that I have ever had an affair you understand.)

But winter. Well, winter is not my favourite time of year. Robert Byrne wrote:

"Winter is nature's way of saying, 'Up yours'".

I can't argue with that, snow, cold, ice, sleet, there is nothing likeable about winter.

Thus in the winter stands the lonely tree,
Nor knows what birds have vanished one by one,
Yet knows its boughs more silent than before:
I cannot say what loves have come and gone;
I only know that summer sang in me
A little while, that in me sings no more.
(Edna St Vincent Millay)

The other side of intimacy

This place is really crowded! Not only are there thousands of the usual tourists, but 10,000 people are here or on their way for the winter party organized by the Gay and Lesbian Task Force. It is already difficult to maneuver through the crowds on Ocean Drive; it will be impossible when 10,000 more are added to the population. Fortunately, but unfortunately, we leave Wednesday, the day the party begins. We will avoid the crowds; but on the other hand, there are some unique, colorful, characters in that tribe who make the gathering interesting.

Moving on, I actually ran 2 days ago. Only 300m, that's true, but then that is 300 more than I did the day before. It was difficult because it has been almost a year since I quit running. However, I felt completely confident, but my chest began to burn with the effort, so I reverted to walking. I used the GPS on my phone to obtain the actual distance of my walking route - 3.2 miles. The walking has been easy - walking on sand and pavement always is easy. Now I have to return to winter and walking in the snow while wearing layers of clothing. I am not looking forward to that, but exercise is exercise and is beneficial to PWP, especially aerobic exercise. It will be difficult but necessary. I will detail my exercise regime in the coming days.

In the meantime, I am required to leave summer to return to winter and the trouble with walking in the winter is, now listen carefully to this, it takes place in winter.