counter

Tuesday 28 February 2017

Suffering. Is it part of the human condition? Or, is it just me?

Every year for the past 16 years we have gone to South Beach, Florida, just to escape winter for 3 weeks. This year, we couldn't go, due to my wife's health problems (she has regained her health, but has to get tested and see doctors several times over the next 3 months). So I sit here and look at the cold lurking outside my window, dreaming about palm trees and beaches.

I miss Sobe. There are good people there and, more importantly, heat. However, our disappointment in missing the trip was ameliorated because we did have a 10 day heatwave here.Yes folks, we consider +4C (40F) to be a better than average warm spell in February. The problem is, the snow started to melt and it was so nice outside, for some stupid reason, I decided to shovel off the deck. Wet, heavy snow! The result? Damage to the rotator and/or pectorals. It has been about 10 days of agony and I am just starting to recover.

But, if I whine too much, please bear with me, just a little longer.

During my suffering, I wondered if PD was the agent of my agony. I have to be careful of ascribing every little ache and pain to my condition, lest I miss a "big" one. I searched Google and found an article written by Jackie Hun Christensen for the National Parkinson Foundation. She seems to answer my question when she writes:

"While many family doctors and even some neurologists will tell you that Parkinson’s disease does not hurt, most people with the disease will probably disagree. In fact, pain might have been one of the early symptoms that, when combined with other signs, first compelled you to see a doctor. Chances are, if you did not experience pain as an early symptom, it will show up later, as your disease progresses. Usually it occurs or is worse on the side of the body that is most affected by Parkinson's

"The types of pain associated with Parkinson’s include: aching or burning pain from musclesor skeleton, sharp pain from a nerve or nerve root, numbness or “pins and needles” pain also radiating from a nerve or nerve root, pulsing or aching pain that results from tightness or ongoing twisting and writhing movements (dyskinesia), restlessness caused from akathisia, and sudden, sharp burning pain that occurs for no known reason."

The adjectives used in the last paragraph, all apply to me, except the dyskinesia or akathisia. The sudden, sharp pain has rocked me a few times this month. It is short-lived, but is malevolent in its rapidity and certainly makes me sit up and take notice. So maybe my suffering is due to PD and not to shovelling 2 feet of wet snow off an 80 square foot deck. Or maybe a coincidence is involved. What do you think?

Either way, I suffer. It's like I try to pick roses and forget about the thorns, but missing thorns is unusual for me. It is not in my nature. Today, I am like that guy Joe Btfsplk in Li'l Abner, with a constant raincloud over my head. I have tried suffering in silence but now I would rather lose perspective and shout out my sorrows because, as they say, misery loves company.

Sunday 26 February 2017

STATS for the past 7 days - W0W!

Grand total 64,636


United States
1209
Canada
132
United Kingdom
61
Ireland
12
Germany
11
Netherlands
4
Russia
4
France
2
Latvia
2
Taiwan
2


Thursday 23 February 2017

The future, is it a promise or a threat?

There are few conditions which bring out the humility of medical researchers as does PD. In 2011, Dr. Oz predicted on Oprah that significant progress would probably be forthcoming in PD within "single digit" years. I have read a lot of "fake news" regarding cures, but as yet no real news concerning improvements that would make life better for PWP.

Come on Dr. Oz, give it to me straight. I can take it.

I am 7 years post diagnosis and these past few weeks have not been good to me. I feel like I grow weaker by the hour and balance is starting to escape me. I am planning 2 plane trips this summer and today, I mulled over cancelling them. Can you imagine being off balance in the airport lines, going to the bathroom on the plane (that picture is almost laughable), and just to add a touch of excitement to that adventure, getting off the plane.!?

I am in agony at the moment and I am supposed to have breakfast with an old friend in the morning, but that is looking shaky too. February has been prairie-tropical, but the cold has returned, leaving streets and side walks covered in ice. Therefore I am pretty much house bound . It's a good thing I like TV. My daughter gave me equipment designed to be strapped onto shoes and with the help of the metal, spike-like protrusions on the bottom, make walking easier. But what do I do when I get to the restaurant?

It is not all bad news because fortunately, the drugs control my other symptoms, but, of course I fear that may change too.

The future? I try not to waste my time on the future. I appreciate my past; I can put up with my present, but the future is blurry at best.

With that, I conclude my therapeutic rant for today.

Wait a minute, one more thing. I would like scientists to use the future perfect tense when making their predictions. Certainty is what I require.

PS - I should have explained, my "agony" was not caused by PD but shovelling snow - wet snow.

Wednesday 15 February 2017

I humbly suggest


LSVT BIG EXERCISES FOR PD PATIENTS

You know how I go on about exercise. Sorry. I believe exercise has helped me to slow down the advance of the condition (I hate the name Parkinson's DISEASE) and has helped me to obtain the fitness level of a younger man.

Some research has shown that PWP who exercise a minimum of 2.5 hours every 7 days will experience a better quality of life perhaps slowing the condition's progress. I highly recommend the LSVT BIG exercise program above (click on writing under the picture.) Why?

  • It is a good warmup because it doesn't take long and can also be used as a daily exercise, if the PWP detests full on exercising.
  • It involves stretching, which apparently, is a necessity.

The elements missing from this short program are aerobic training and resistance training. I accomplish the first through the treadmill and the stationary bike. I also include mixed aerobic and weight training with an emphasis on weights.

Many types of exercise will help PWP such as biking, running, tai chi, yoga, Pilates, dance, weight training, non-contact boxing, qigong all of which have been shown to have positive effects on symptoms for people with parkinson’s. The problems with these are snow (too deep and slippery and cost (over time it adds up). Home training is easier to maintain a regime and the fear of burn out is minimized.

LSVT Big Part two can be found here and should prove useful to you as well. Combine it with Part One for a more complete full exercise (as opposed to using Part One as a warmup).
Parkinson's Canada has a good booklet on exercises for PWPhere

Firmness in enduring and exertion is a character I always wish to possess. I have always despised the whining yelp of complaint and cowardly resolve. Robert Burns

Success is dependent upon the glands - sweat glands. (unknown)

Tuesday 14 February 2017

Mistakes in Exercising

I think I must have exercised all of my life, except for a few misguided, beer tsunamis in university (men's residence. I think you understand). For the first several years I ran, competing against myself, trying for a new PB, but there is a limit for PB's and I reached it quite quickly. I then turned to racewalking and became a provincial champion at age 41, setting a new record in the sport only to have it soundly defeated by a 21 year old the following year. Both running and race walking were good to me, I lost weight and remained healthy.

If only 1996 could have been avoided. That year, my legs were stricken with a terrible pain. I could not be diagnosed. I believe now it was the first tinges of PD even though I was not diagnosed until 14 years later. Now I could neither run nor race walk so I turned to swimming.

At first, I struggled to make 25 meters but by the end (when it got too expensive), I had reached one mile. One mile! Holy crap that is a long swim!

Throughout my somewhat amateur career, I made mistakes that limited my becoming very good. As Marlon Brando says to Rod Steiger in ON THE WATERFRONT, "I coulda been a contender. I could have been someone". Well maybe never a contender, but I could have been a lot better if I hadn't made the following mistakes

  1. Warm up - like me you avoid it. The most I did were 3 OR 4 Stretches and that was on a good day. Had I warmed up, I might still be a champion race walker or a distance swimmer. My muscles remained too tight for any real glory. I forget how long it took to swim one mile, but I could have gone further with a warmup. So don't skip the warm up. I confess that these days, I find a warmup a little tedious, hence my many injuries. I stretch and that helps. I stupidly still avoid a warmup, save for those few stretches.

  2. No stretching- if you are a person who avoids stretching, you are not taking advantage of a necessary part of your workout. You must at least be semi-flexible to compete. When I stretch, I do static stretching which I understand is not all that good for you but I am too old to change. Active stretching is now the chose du jour. Read about it on the net. It sounds interesting (search Aaron Mattes & Active isolated stretching)

  3. You try to do too much, too soon. You think the longer and more frequent use of the treadmill, the sooner you will lose weight. I say work on muscle groups every second day interspersed with the treadmill. The object of exercise is to strengthen the muscle by first breaking it down and then having it recover even stronger. That process takes at least 24 hours. Overdoing it will cause injury and at some point will lead to burn out. It is only necessary to do 2.5 hours per week and give yourself break from exercise. The treadmill is great but I only ever use it every second day to allow my legs to"heal" stronger. Alternate days, I work on the upper body and take 1-2 days off for complete recovery.

  4. You Avoid Strength Training. I don't want to be a muscleman/lady and strength training is hard. But you need it, A regular strength training program helps you reduce body fat and burn calories more efficiently, which can result in healthy weight loss. Strength training helps preserve and enhance your muscle mass and bone mass, regardless of your age. Sounds good, but what a pain. I was determined not to lift weights and looked for an answer to the question,"How can I strength train without heavy barbells and after much reading, I found that you can accomplish the same thing with rubber resistance bands. I now use a combination of light weights (10,12,&15 lbs) and resistance bands. Here are the benefits of strength training as set out by the CDC

    2011 opinion poll reported by the Centers for Disease Control and Prevention (CDC), less than 20 percent of women contacted said they accomplished the CDC’s recommendations for 2 1/2 hours of aerobic exercise and two periods of strength training weekly. Yet the benefits speak for themselves. Inactive adults experience a 3 to 8 percent loss of muscle mass per decade. Resistance training may increase resting metabolism by about 7 percent and help minimize muscle loss.

  5. You think distance running is the best for your heart. I certainly thought so but not true. Short bursts of intensity with short periods of rest are more beneficial for weight loss, general health and overall fitness.
PS CHECK WITH YOUR DOCTOR - I am only offering my advice as a former runner and multiple events coach

addendum. I just was on the treadmill for half an hour averaging 3.1mph. Hardly in the same boat as my usual 4.5mph. What me worry? You have to give yourself permission to take it easy when you are not in the mood for speed. Besides, I probably lost more weight at the slow speed. Heart rate never exceeded 126.

Sunday 5 February 2017

I might be a living, breathing, hallucination. Who knows for sure?

Alright, I have mentioned this before, the wonderful world of hallucinations and I am going to talk about them again.  But first, let's make a distinction between delusions and hallucinations.  While we can find humor in hallucinations, there is nothing funny about delusions.

A delusion is a belief that is obviously false. The false belief is not the result of the person's cultural or religious background or his or her level of intelligence.  The person is absolutely sure the belief is true and will hold on to that belief even in the face of contrary evidence. 

We will restrict this lesson to hallucinations, which are defined as sensations that appear real but are "all in your head". They can affect all five of your senses. For example, you might hear a voice that no one else in the room can hear or see an image that isn’t real.  If you hear a voice, and nobody is there, you are having an auditory hallucination.  If it scares you and repeats itself, take thee to a medico and consider what might be causing your problem.

The causes of hallucinations 

Mental illnesses 

Mental illnesses is one of the most common causes of hallucinations. Schizophrenia, dementia, and lewy body dementia are a few examples.   I am fairly certain I do not suffer from a mental illness; although, there are some people who might disagree.

Drugs - illegal

Substance abuse is another fairly common cause of hallucinations. Drink too much or get into the hallucinogens, like LSD, and you are going to see things that are not there, or hear or smell the absent voice or odor.

Drugs - legal

Certain medications can also cause hallucinations. Parkinson’s diseased medication may trigger hallucination symptoms.  None of my drugs do, darn it.

Lack of sleep

6 - 8 hours are required but how many PWP sleep that long at night?  For example, I get 4 to 5 hours and frequently have fleeting hallucinations, usually in the form of a "feeling" such as feeling that fellow who, at this very moment, is looking over my shoulder as I type.  I just looked.  Nobody there.  The more sleep you  miss, the more likely you will encounter these hallucinations . Be not afraid, enjoy their company. 

In my earlier blogs I mentioned some of the interesting people, things, sounds I have experienced.  At various times, I have seen an astronaut floating by my bed.  I have heard a non-existent dog, barking at my door.  I have felt somebody running or bouncing on the bed but there was no such athlete.  I have seen 2 little girls playing cards, tall men, short men - all kinds of men.  I have no fear of them as they last only nano seconds and all occur when I have had little sleep.  They make life slightly more interesting.  God forbid they should last longer than they do because then I would have to own up to my own craziness.

  But take heed, we all may be living in an hallucination right now; after all, isn't cyberspace the ultimate illusion?  Are you really reading this somewhere else on this planet?

postscriptum

As the disease progresses, you might experience real hallucinations that are no laughing matter and which can be quite frightening. I do not mean to belittle those experiences and hope to avoid them in my future.

STATISTICS FOR PAST WEEK
(page views) to date 62,160
Thanks to all who read.


United States                        81

Canada                                 62

Hong Kong                            9

France                                    5

South Africa                          4

Australia                                3

India                                      3

 Portugal                               3

Switzerland                          2

Saturday 4 February 2017

Just a little advice

Let me correct one mistake from the last blog. The assist pole cost me $259.00CDN not $159.00CDN

Now onto the sad news. My balance has been bad (5 on a scale of 10). Yesterday, while on my haunches, cleaning a spill on the kitchen floor, I had a feeling that I was going to fall backward. It was a self fulfilling prophecy . As I fell back, in an attempt to stop the fall, I grabbed the handle of drawer full of cutlery. Alas and alack, I was unsuccessful in my attempt to remain stable and the entire drawer came out and I was covered in cutlery. I cleaned up the cutlery, but out of spite, I left the original spill where it was.

That will show them!

Now that I seem to have balance problems, I took to researching "balance & parkinson's" and found this on WebMD:

Tips for Maintaining Balance With Parkinson's Disease
  • Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. ,
  • Never carry objects in both hands when walking as this interferes with balance.
  • Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson's disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
  • Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
  • Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
  • Do one thing at a time! Don't try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
  • Do not wear rubber or gripping soled shoes, they may "catch" on the floor and cause tripping.
  • Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
  • If you become "frozen," visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion "pull" you, this may throw you off balance and even prolong the episode.
  • If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you've mastered walking with help, you may be ready to try it on your own again!

    Really good advice; although, even though I know it to be excellent advice, I doubt I will stick to it. Do you know how hard it is to concentrate on consciously lifting your feet and/or swinging your arms! I am good for about 10 paces, when I fall back into my usual routine.

    As Oscar Wilde one remarked, " The only thing to do with good advice is to pass it on. It is never of any use to oneself."

    So true. I offer this WebMD advice in good spirits knowing I will not be able to follow most of it on a regular basis.

    And I damn my restless mind and my inability to concentrate for more than a few minutes; ergo, I shall keep on falling.

  • Wednesday 1 February 2017

    Common sense is just the values ingrained in you since birth

    Went to see the neuro a couple of days ago. The appointment lasted 5 or so minutes and consisted of my tale about falling downstairs (the large cuts on my head should have alerted him to the fact this was no ordinary fall)and him asking me some questions about medication. My wife brought up the topic of the tax deduction for PD sufferers (or something along those lines. She is the financial expert in the family.)

    "Not yet" was pretty much what he said. I had to agree with him on that one. It will wait until I am more disabled. We ended the appointment with him telling me that medication did not help lack of balance and gave me a shot of advice, I should use common sense when walking down stairs.

    True that!

    The fact is, I fell down the stairs because my hands were full so I was not using the bannister and it was 4:30AM,

    Common Sense indeed!

    I doubt the fall had anything to do with PD. I have chalked it up to "stupidity". I was careless, when most of the time, I take care. For example, when I get into or out of the tub, or into or out of bed, I use an assist pole like the one pictured here:

    These assist poles just make life easier. They are inexpensive (the picture is from eBay at a price of $150 USD. I paid $159CDN). They give you a sense of security and I highly recommend them.

    If you are experiencing falls, then:

    1. when walking, use a cane or better, trekking poles
    2. when getting into or out of a tub or bed, use assist poles
    3. when walking down stairs, use common sense. The bannister is there for a reason.

    "Common sense is the most fairly distributed thing in the world, for each one thinks he is so well-endowed with it that even those who are hardest to satisfy in all other matters are not in the habit of desiring more of it than they already have".
    Rene Descartes