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Monday 31 August 2015

Mirror, Mirror, on the wall.....

Why isn't there a direct correlation between thinking and the condition of the body? Seems to me that our brain maintains our self evaluation at a youthful level while our body grows old and deteriorates. When I look into the mirror, I don't think that the 69 year old face looking back at me is the real me. That's not me. I don't feel the age of that old reprobate! I guess most of us are doomed to go to our deaths thinking "I am much to young to be at this point in my life!"

Can you hear the gods chuckling and saying to each other "There is an indirect correlation between the vanity of humans and our prime directive of 'who gives a shit'."

Well, PD is trying its best to make me grow old, both in body and in mind, but I am fighting back. My thoughts are young and as yet are not hampered by Parkinson's. I don't dwell on the future and try to keep my mind free of the annoyances of PD. However, my body....well... that is something else. When I coached track some 20 odd years ago, I would race my athletes over 200m and marvel at their suppleness and speed but I could keep up with them for the first 10 or so metres. Not now. I can't run anymore. That little dash of freedom has been stolen from me; so I walk, yesterday 15000 steps. My legs, heart and lungs are all in good shape and I am working on my upper body with a weight regime.

These exercises are not born of vanity but of a desire to slow the progress of PD. I am 5 years post diagnosis and with the help of drugs and workouts, outwardly, I am symptom free. Inwardly, I do feel changes coming, but those changes are so mild that they don't populate my thinking too much, too often.

Happily, my neurologist recently told me I was as close to being perfect, (as far as the rapidity of PD's onslaught is concerned) as anybody he has seen. Another neuro, when told about my exercise regime, commented that what I was doing was the best treatment for keeping PD at bay.

If you are a PWP, take my advice, exercise, and try to keep your body as young as your thinking. Exercise is your best medicine for achieving that equilibrium.

Oh, and avoid mirrors.

Sunday 23 August 2015

Hither, page and stand by me

You might recall the legend of Good King Wenceslas helping his page to carry on through the deep snow. Well, we people with parkinson's eventually will need a good king or queen to help them along their journey. They are referred to as "caregivers". I don't need one now but when I do, I know I will have the best. My wife already tracks my doctor's appointments, my medication, my nutrition and my general well-being. She knows that in the afternoons a wave of fatigue consumes me and I am pretty much useless for a couple of hours. It is during this time that she makes sure of my comfort - taking on tasks that were on my list of things to do. We should all be so lucky.

Anyway, I thought I would pass on these gems of wisdom for the caretaker.

  1. Don't panic when you first hear the diagnosis. It is not a death sentence. It usually means that somewhere down the road, the PWP might have significant physical problems. Until that time, read and become acquainted with the condition.
  2. Learn to recognize any deterioration in the PWP and attend any doctor's appointments with your charge to make sure he or she knows about any new symptoms
  3. Be supportive but don't try to predict the future, you might raise false hopes and besides, believe me, the PWP knows what is in store for him.
  4. Keep track of his medication but don't be a pain about it. If you are going on a trip for instance, make sure he has sufficient supplies of his drugs. Just ask, gently, "Do you have your meds?"
  5. Realize and understand there will be good days and bad days for both of you. During his bad days, check for depression, it can attack at any moment.
  6. Make sure he is eating well. Good nutrition is thought to play a role in slowing the progress of PD.
  7. Encourage him to exercise. This is the best medicine for slowing the deterioration of the PWP.

I could go on and on but these are things that are in the arsenal of my good queen and so far we manage quite well. Five years into the "disease" and I can define PD as just an annoying inconvenience.

As Michael J. Fox once remarked, "In fact, I lead a remarkably normal life."

Me too, M.J., me too.

Thanks to my wife and the drugs!

Wednesday 19 August 2015

Searching for the void

A good friend of mine suggested I should try daily meditation and offered this site by way of explanation. Here is an excerpt:

In 1995, I developed symptoms of advanced Parkinson's disease with severe tremor, festinating walk, unintelligible speech, mask-like facial expression, significant pain, constipation and urinary incontinence. During my three year journey to a symptom-free state, I utilised a number of self-help strategies and complementary remedies. Prime among my activities was daily meditation, and involvement in a weekly meditation group. I observed that, while meditating, many of my symptoms reduced in intensity and, over time, this intensity reduction lasted for some time after meditating. Other benefits I noticed were improved sleep patterns, clearer thought processes and, interestingly, improved relationships with work colleagues. If I missed my daily meditation for any reason, I found I was less able to make decisions, my tremor increased, and I felt generally less well.

I just don't think I could sit still for long and empty my brain. I see meditation as the pursuit of nothingness and I would inevitably get distracted by something shiny. I think I almost achieve a meditative state while walking. I let my mind drift to the point that I can't remember what I was thinking about a few seconds after thinking it. At these times I am aware only of my posture and the odd car that passes by and breaks up my mindlessness. If that is meditation, then I am an expert. However, I think I shall give the real thing a try. I can't do it cold turkey, I will need a little help.

A few years ago (about 40 of them that is!) my wife and I went to see a stage hypnotist, Raveen. He was very entertaining and after the show, we purchased his records (vinyl, of course) one of which involved relaxation. Soothing music with his hypnotic instructions actually did put your mind in another place. I plan to scour the net and find similar recordings and see if I can reap some of the benefits of meditation.

It is like taking chicken soup to cure a cold - it may not help, but it can't hurt.

Monday 17 August 2015

I was a peripheral visionary. I could see the future, but only way off to the side. (Steven Wright)

You might remember early on in my PD voyage, I saw things out of the corners of my eyes. Not hallucinations because they lasted only part of a second, or less. The included an astronaut, giant man, etc. etc. Well I now have the comfort of knowing that other PWP have enjoyed the same experience due to the fact that PD affects our peripheral vision. Why? I don't know but I came across the following in a Parkison's UK Forum, and it made sense to me. I have the author's approval to reprint it here.

peripheral vision and improving pd symptoms

For the first time in years, I am sitting with my arms and legs relaxed. Usually my left arm is doing Napoleon impersonations. But right now it is calmly resting on my knee.

How has this happened?

I added opaque side shields to my glasses that block peripheral vision.

Why should that matter? This is only an amateur theory but....

  1. The peripheral vision process is separate to the main focal vision processing
  2. PD has a major effect on the peripheral vision which is why we see things that aren’t there out of the side of our eyes.
  3. The corrupt peripheral vision has to be integrated with the main focal vision.
  4. This integration with corrupt data corrupts our vision as a whole and affects other physically close areas of the brain that control movement.
  5. Blocking out the corrupt peripheral signal should improve our vision’s clarity, reduce eye movements, reduce startle responses etc
By the way for the first time in years I am touch typing with two hands.

This experiment has been going only for one hour, hopefully the effects last. Side effects:
You look ridiculous
You might get run over by a bus.

This may be a placebo effect and may not have any effect on other people, but I’m feeling good right now.

Cheers
Turnip

Sounds logical, doesn't it.

By the way, I highly recommend Parkinson's UK

Wednesday 12 August 2015

As an adult, I miss yielding to the temptations I dared to conquer in my youth

I was 10 or 11 and living in Truro, Nova Scotia. The Stanfield mansion and grounds were on my way home. The estate had a large swamp on its right boundary that stretched far along back, past other homes and businesses, to the main highway. Between the mansion and the swamp was the Stanfield's apple orchard.

TEMPTATION! (noun)- a desire to do something, especially something wrong or unwise.

There it was in all its magnificence. A real orchard. Apples for the taking. An orchard just waiting to be raided. And we did. Frequently. Climbing trees and grabbing as many apples as we could carry and generally covering ourselves in scratches and glory. But fate intervened. Some cruel town politicians decided that there should be a wide river of mud and, in places, quicksand, cut through the swamp from the main highway to the right edge of the Stanfield estate. We were beaten; now we were blocked by a high iron fence across the front and left boundaries of the estate and a river of what we thought was quicksand on the right. No more apples.

Yah, right. A little old river wasn't going to stop us! We were more determined than ever to yield to the temptation to get across that river to our apples.

Aside: You have to imagine the likes of a river of molasses. Our river was composed of a thick, smelly, oozing mud, with just a hint of water floating atop the bottom sludge. It had the consistency of, well, molasses, Maybe a touch denser. But, we were the sons of soldiers. We could surmount any obstacle.

It took a few weeks to get up the courage, but the temptation was just too irresistible, a force of nature in 11 year old boys. We gathered up boards and laid them on top of the putrid quagmire and ever so lightly we stepped onto them to make the crossing. No, nothing happened, the slough carried our weight easily. One boy did fall in and the rest of us almost followed, we were laughing so hard. We pulled him out (which was not easy) and continued into the orchard, but something was wrong. There were tall plants throughout the orchard. Plants that we had never noticed before but now seemed to be everywhere. We stopped. Something fishy was going on. Oh well. Were we going to let these plants stop us? Out of the question. Through the plants and up the trees, heavy with apples for the taking. And take them we did, anywhere from 5 to 10 per person. Can't stop us Mr. Stanfield.

It was on the way home that we noticed a problem, our arms and legs were covered with blisters. We never raided that plantation again. The river could not stop us but stinging nettles could. We were the victims of our temptation and we suffered greatly for it. I don't know if the nettles were planted there deliberately or whether they grew naturally and this was a bumper crop. To this day, I can't eat an apple without remembering those telltale blisters.

OK, why bring this up now? What's it got to do with PD? Everything. It has to do with temptation. Temptation and PD. For example, today I felt really good and left the house without taking my morning meds. I was feeling alive and was tempted to walk faster than usual, using the movements of a cross country (nordic) skier. It is possible with the trekking poles to emulate those athletes' motions and build up a little speed. I resisted the temptation and it proved to be the correct decision. The last half of my walk was ruined by the "feeling" in my legs of the parky gait. Had I picked up speed, I am certain I would have encountered my old friend, festination. Believe me, once it starts, it can't be stopped. You will fall. You will hurt yourself.

Then there is the "why me" temptation. Why did I get PD. I have been good.

The best answer is Why not you? What makes you special? You have PD so now do something about it. Read and learn. Exercise. Do something. Resist the temptation of the "Why me" syndrome lest you get stung by metaphorical nettles.

Say with me "I will avoid feeling sorry for myself. I will avoid ignoring my condition and do something stupid like speeding on my walk and most of all, I will live in the present and ignore the future.

Thus endeth today's responsive readings

Sunday 9 August 2015

"The beauty is in the walking – we are betrayed by destinations"

I know. I know. I know. I have brought the topic up in earlier posts. Well, if I wasn't certain before, I am now. Walking is beneficial to PWP. I think it not only slows down the progress of the disease, it also suppresses symptoms.

How do I know? I don't really. It is just a "feeling" I have, based on observation.

For example, there have been several times in the past month where I have neglected to take my medication for as much as 8 hours without any effect on my tremor, gait, balance, etc. I think these symptom-free, non-medicated, moments are directly related to my walking and 5 years since diagnosis, not much has changed for me symptom-wise. Oh, I have the occasional joy of festination- 3 bouts in 5 years, but if I concentrate on "heal toe, heal toe" I can walk a normal walk. Using trekking poles increases the benefit of walking. Poles and an ipod, that is. Without one or both, I grow bored after 45 minutes and return to the stable. Today, I made use of both, with the result that I walked over 5 miles (10,800 steps)in a little over 1.5 hours. Not a great rate, but I was day-dreaming all the way.

Often I use these walks to priorize (prioritize?) elements of my workday. My goal is 20,000 steps in one session. Kind of like wishing on a star but so what? If I can visualize it, I can do it.

Of course all my bragging can be off-putting to others. A good friend, jokingly (I hope) sent me a quote by Noel Coward: "I like long walks, especially when they are taken by people who annoy me." Well, I will continue to annoy you all by proselytising my message to the non-believers. Be aware. I can't talk, but I can still write.

Here are today's readings:

  1. Could brisk walking be therapeutic for people with Parkinson's?
  2. Brisk Walking May Help Curb Parkinson's Symptoms
  3. Brisk Walking Improves Many Parkinson’s Symptoms

Tuesday 4 August 2015

I've got to admit I'm getting older

I remember taking a class in university, long ago, in which we were asked to predict a future event that had more than an even chance of coming true. I predicted my death in the year 2030, a date so far in the future, I couldn't imagine it. Now, as that date is getting closer, I wish I had chosen a later date, even if it means living with PD. Things are just getting good.

Dr. Seuss said something to the effect that you shouldn't be sad when a death happens, you should smile that a life had ever occurred. And, I do, smile I mean. But fighting the shaking palsy makes it harder to smile and its full effect really hasn't hit me yet (5 years in). Every so often I get a hint of the future, or so I think, but then I am forced to conclude I can't blame PD for every little ache or pain. Sometimes the rogue is stupidity or carelessness or whatever, but not PD.

For example, this past weekend, I was sitting on a plastic lawn chair in the yard at our cottage. I was talking to my daughter and my wife, who was holding our sick, year old, grandson. Suddenly, without warning, my chair was tipping over sideways. My wife yelled to my daughter, "help him" and she did, laughing the whole time. It seems I had placed my chair partially on a patch of clay that had grown soft with the heat and moist with water from the pool and one of the back legs on the chair had simply buried itself in the "mud". Thank goodness that was all it was! I told my wife I had thought it was PD affecting my balance. She had thought so as well. But the ending was happy and I had another memory to make me smile.

Still, I wish I had predicted my D.O.D. as 2040 or more.

I continue the good fight against my enemy. I walk. About 5 - 6 miles a couple of times a week (minimum 11,000 steps) and less the other 5 days, but never less than 3 miles. I aim for a minimum of 10,000 steps and my success is variable. I can tell you, I get slower each time. PD will slow you down and you might as well accept that.

The best place to walk for me, is at the lake, around 6AM. All is peaceful and quiet and nature is at its best. Today, while crossing a creaky, well-used, footbridge (cross at your own risk), I stopped to watch a beaver repairing its dam and all was well with my world. At that moment, I was neither dwelling on the past nor worrying about the future, I was entirely in the present. That's life as it should be.

Still, about that prediction. 2030 is only 15 years from now!!!!!

"And it really doesn't matter if I'm wrong, I'm right. Where I belong I'm right. Where I belong"

Boundary Creek across from the marina in Winnipeg Beach, just after sunrise

Monday 3 August 2015

Statistics - thanks for reading

Statistics for the past week

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Total to date 38,802