Could not have said it better myself

FITNESS
GET FIT WITH NORDIC WALKING
If you're looking to increase your fitness level (slow the progress of PD), Nordic walking just might be the perfect activity. It's a great form of exercise that works your entire body, combining the simplicity and accessibility of walking with the many fitness benefits of cross-country skiing. Nordic walking is guaranteed to give you a great – and easy – workout.

Often called urban poling, Nordic walking was developed in Europe as a method of off-season training for skiers. "It is as simple as walking, but you use poles to propel your body forward," says Gerry Faderbaue, founder of the Canadian Nordic Walking Association.

Nordic walking provides great exercise for just about anyone – from a conditioned athlete to someone who only walks to the refrigerator.

"The best thing about Nordic walking is that it can be done almost anywhere, at any time," says Faderbaue. The activity, which is not limited to any specific season, can be done as long as you have the right equipment and technique.

Nordic walking poles are generally shorter than those used for cross-country skiing. They feature grips with special straps, which provide comfort by eliminating the need to squeeze. They're made from lightweight materials and usually have rubber tips for use on hard surfaces. Average pole prices range from $50 - $150. You can purchase poles on Faderbaue's site here, at www.urbanpoling.com or at www.mec.ca. As for shoes, Faderbaue says that you can "use regular shoes, running shoes or training shoes, depending on the terrain and your desired intensity."

Once you have all the gear, go ahead and get Nordic walking! Here's how and why

• Adjust your poles. They should be set at about 65-70 per cent of your body height. When holding them correctly, your elbow should be at a 90-degree angle. Grab a hold. To hold your poles properly, place the loop attached to the handle over your hands and tighten the straps. Grab the middle of the handle so that your palm is facing you.
• Practice walking without the poles first to develop a rhythm that works for you.
• Use your arms to propel you forward. Poles should always remain behind you, as if you are cross-country skiing.
• "The technique is easy to learn because it mimics the natural body movements performed during regular walking," says Faderbaue.
• "Nordic walking is the most natural and healthy way to train yourself," says Faderbaue.
• There are numerous physical benefits to the activity, explains Faderbaue, including increased calorie burning and upper body conditioning. It is an excellent alternative for those who do not like to run or who have been advised not to due to injury, but it is a much better workout than simple walking. Here are some of the additional benefits:
• Nordic walking involves using the upper body to apply force to the poles, therefore building stimulation in the chest, abdominals, arms and back.
• Faderbaue says it's one of the best cardio exercises for weight loss and management. "Because your upper body is engaged, the muscle involvement leads to a higher number of burned calories," he says. While regular walking burns about 280 calories per hour, Nordic walking burns 400.
• Nordic walking puts significantly less pressure on your hips, knees and ankles than regular walking or running.
• "The swinging motion is a natural motion when we walk to keep balance," says Faderbaue. He says this balance in Nordic walking makes it much easier to get your heart rate up by going up steep hills or walking at a quicker pace.

  The article (which I have changed only slightly) was written by Jaime Eisen and can be found here

italics are mine

Angels listen to people who go for long walks and they give you all the angles

Went for a couple of long walks in the past few days- uneventful. That is the problem with PD, you can't predict really anything about its tactics. You can only predict its end game; look at the great Ali in his final days. A future I wish to avoid.

I think I have been very patient with the scientists. They should have produced a cure by now! Well, Lords of Science, I am growing increasingly impatient, so get on with it. Cure me (and, of course the other members of the tribe). I don't need no dementia; I already am crazy enough!

Anyway, back to the walk, my time to think. Some thoughts are good; others not so good. Yesterday my thoughts were in the "why did I read that?" mode. I had read a Fox Foundation piece on lewy bodies and lewy body dementia. You can read it on the Fox site, if you have self-flagellation tendencies. I have never worried about lewy body dementia, or any other kind. I understood that about 1 in 4 PWP will suffer some sort of dementia, from mild to severe (Parkinson's Canada says dementia is common in the later stages). Not terrible odds in favour of sanity. My mind was occupied, satisfactorily, by those odds. Then I read "the vast majority of people with parkinson's have lewy bodies in their brains". The article went on to assure the reader that "not everybody with Parkinson's will get LBD". I have decided I am too old to make it to the later stages. I will be one of the 75% of PWP who will not have their brains betray them.

You're worried? I'm not. Let's forget I ever brought up the subject, except to note that Robin Williams was a victim of LBD.

On that "sunny" note, let me leave you with a suggestion. I don't know if it is true but I live my life as if it were true - I firmly believe in it. "Exercise" that is. Exercise can not only slow the progress of PD, but also the development of LBD, if you are one of the unfortunate 25% who have to contend with it.

Walking is the best exercise. but it is boring. I take the same route every walk. Talk about a mindless hour that permits thoughts like... Well...you-know-what.... to creep in!

One way to prevent those little doses of doubt is to make your walk more interesting, more challenging so that you have to think about the mechanics of the walk .....Try nordic walking.

RATS!!!

I had a whole half page on nordic walking, but my fingers have an annoying habit of jumping and hitting letters on the keyboard without my input or assistance, and this time, my fingers somehow wiped out that half page. Probably a good thing. You might have been bored to death. I will try to write about it in a later dispatch. Until then I leave you with the wisdom of Nietzsche:

"All truly great thoughts are conceived while walking."

If it doesn't challenge you, it won't change you.

31C or 88F! No humidity. A perfect summer day for a 5 mile run; but, I can no longer run outdoors. I gave that up a few years ago after two disastrous falls. My right foot does not get completely off the ground and any anomaly in the pavement, the slightest bump, can send me directly to a meeting with Mother Earth. Now that I believe the symptoms of second stage PD are starting to make an appearance, I am quite sure I would trip over a crack in the sidewalk. So, when I finish this entry, I am off to the treadmill. I hate it, but thank God for the treadmill. Without it, I would have problem exceeding a snail's pace.

So, no running outdoors; but, you ask, why not walk? I would, but lately, even with trekking poles, walking is not enjoyable. I start off smoothly and easily but half way through, I begin to get the feeling that I can't stop. When I arrive home after the full walk (about 45 minutes), I have trouble getting the key into the lock because my body wants to keep going. I end up with my head against the door with my legs spread out as if I am about to be patted down by a cop. When I am successful with the key, and I open the door, I sort of fall into the house and must grab at a wall to stay upright. This miserable feeling disappears after 5 or so minutes and I am back to my form of "normal". Consequently, I have reduced the frequency of walking to once every three days.

My Exercise Regime

• Monday - stretch followed by 30 minutes on the treadmill, followed by a warm down of various times on the stationary bike.
• Tuesday - stretch and then workout using dumbbells, bosu ball, bull worker and medicine ball (one hour) warm down by eating breakfast
• Wednesday - walk 2 miles using trekking poles only if I have a mind to; otherwise repeat Monday
• Thursday, Friday, Saturday - repeat previous 3 day cycle.
• Sunday - day of rest

Does it help?

Who knows if it helps! I think it does. Experts think it does. It has been 6 years since my diagnosis and I am not even sure if I am in stage 2, and even if I am, it has taken some time to arrive at this stage. I believe exercise has slowed the progress of the disease. I hate every second of exercise, but I know it is beneficial and I never regret the time I spend exercising but I suffer from guilt and regret if skip it. It's a hardship but, I do it, over and over. You understand that I am at war with PD and this is the only weapon I possess.

"Give it to me straight doctor; I can take it"

I believe I am somewhere in the initial stage of stage 2*. It has crept up on me, not unexpectedly, I have known all along stage 2 is just part of my journey with my bete noir. Let's see: I have a definite tremor in both hands. I walk at glacial speed. I get dizzy, not really "dizzy", but something akin to it - a feeling of unease when I stand and walk and to top it all off, a final indignity, I have to eat my peas with a spoon!. The medication keeps the obvious symptoms under control, but it wears off more rapidly than before.

Yep, that's stage 2 for sure, Oddly, it doesn't really bother me much. I am such an optimist. I have a "feeling" everything will be OK and if it isn't, well, c'est la vie.

A friend of of mine in the music business remarked that the most optimistic people are musicians. They don't care too much about money, they just want to play their music and are optimistic that someone, somewhere, will hear it and want to hear more. They see a sunny future. There is something to learn in that sort of optimism.

But when the future is fading to darkness, how can someone in my condition, knowing the inevitable, remain optimistic. Well, consider the alternative, I could be a pessimist and brood about the future, but that would make me weak and deprive me of a good, and almost normal, life. My optimism gives me strength and the knowledge that a cure will be found, sooner not later

I am pretty sure it was Abe Lincoln who said that we can complain that rose bushes have thorns or we can rejoice that thorn bushes have roses. I can't add anything to that. Join me in my reckless optimism; You will find that it feels better.

"My life has been a series of well-orchestrated accidents; I've always suffered from hallucinogenic optimism."

*Stage two: In the second stage of Parkinson's disease, the person's symptoms are bilateral, affecting both limbs and both sides of the body. The person usually encounters problems walking or maintaining balance, and the inability to complete normal physical tasks becomes more apparent. WebMD

quote by successful internet entrepreneur, Evan Williams

OOPS - A TINY ERROR

SORRY. NOT SAFARI'S FAULT. I INPUTED THE WRONG ADDRESS.

WHAT IS LSVT CAN BE FOUND HERE

Men of Few Words are the Best Men

"I am sorry, I didn't hear you," the court clerk said. She looked up from her files and added, "it's just that you speak so softly.

I had never been labeled a "soft speaker" before; sure people would often ask me to repeat myself and I would accommodate them, secure in the knowledge that the background noises obscured my voice, not PD.

But this condition continued, even in quiet quarters. I had to admit to myself parkinson's was robbing me of my voice. What to do? What should I do? My neurologist had the answer, get some "voice therapy!" He offered a scant definition of the process and I felt a touch humiliated but, when I balanced that with future humiliation of speaking and nobody is listening because they cannot hear me, I decided therapy would be my next stop.

The therapist was an outgoing, friendly lady who quickly took down the details of my health and referred me to an ENT doctor to make sure my vocal chords were not damaged (see earlier post - January 11, 2012). Once the all clear was given, she explained LSVT Loud as being a method of using voice exercises, spoken loudly, to stimulate the muscles in the voice box. Exercises consisted of making odd noises and loud speaking. Much of each session (4 sessions per week for 4 weeks) I sounded like an Inuit throat singer - a not unpleasant sound for a few minutes but longer.....

Anyway, I didn't practise and all her work came to naught. Fortunately, she is a gracious lady and is giving me a second chance. Starting in September I will devote the required hour of daily instruction, followed by a life time of a few minutes practice each day, making Felix Unger snorts and throat-clearing noises, and recover my voice. Not only will my voice improve,I hope my lost word-finding skill will also improve.

Be assured, the process works. If you have this problem, find a LSVT-loud practitioner and don't avoid practising. You won't regret it.

Once I have recovered my voice, I will need to practise another lost skill. I must re-learn how to speak at the right time and keep my thoughts to myself at the wrong time, no matter how tempting it is to input my opinion with my new found voice. Or maybe I will loudly insert myself in any argument, at any time, for any reason. It will be nice to be heard again; that's all I have to say.

I will keep you updated after each week of therapy.

Note: links appear not to work on Safari but do work on other browsers. The link for LSVT Loud is lsvtglobal.com

The mysterious case of Montezuma’s Revenge

The first to go was my sense of smell. I could not even smell raw sewage! Not a nice way to go through life, but manageable. Then came symptom #2. Both of these symptoms are common in the PD tribe and both are wearisome symptoms. The second is not spoken of in a civilized societies. But, before I elaborate on #2, I must tell you a story.

For more than 25 years, I ran 2 - 3 miles daily. During my runs, I was frequently the victim of runner's diarrhea. I knew every public washroom on my route, especially in South Miami Beach where there are five clean pit stops from 14th street to South Point Park (one every 5 blocks - a runner’s paradise). In 2011, I noticed that when I consumed cough syrup, I would not have trouble with my bowels. I would become constipated, a favourable condition I attributed to the syrup. And so it came to pass that I would take a couple of swigs of cough syrup before each run. This went on for a couple of months, until I ran out of the syrup. I had been running carefree and the syrup slipped my mind. After 4 or 5 days, my need for the medicine had disappeared. Still, I had no more runners’ problems. I remained clogged. My case of runner’s diarrhea had disappeared. The cough elixir had had no effect on my plumbing. It was something else ..little did I know!

Then the bomb dropped, “You have early stage parkinson’s." I learned that the respite from the bowel problem, referred to politely in upper circles as, "the Aztec Two-Step", is almost certainly a part of parkinson's catalogue of woes. Most of us have mild to severe constipation and most don’t want it. I decided to live with it and I have done so for six years. I no longer need a map of public washrooms. That’s the upside. The downside is that occasionally I feel like I might be passing an alien through my anus. It's worth it! I run/walk without trepidation.

If you suffer from constipation, and you don’t like it, try a combination of these:

• get a stool softener from your doctor
• Drink plenty of fluids 6 - 8 glasses each day
• eat lots of vegetables and high fibre fruit (plums are good) and cereal (shredded wheat,etc), and,
• exercise regularly.

Oh..but...be forewarned, you will pass gas (fart), lots of it, enough energy to light up a house.

So what? No matter how noxious you make the local environment, it will not be of consequence to you; afterall, .....you have lost your sense of smell; haven’t you?

Hmmm, this hell does not seem so bad - yet

Welcome to our nightmare

So you have just been introduced to our dark companion and you wonder, what's next? I will assume you have not read my earlier entries. That's OK. I rarely re-read them and consequently, I don't know if I am repeating myself. If I am, I hope veteran readers will forgive me.

What's next?

First of all, don't panic. It is an upsetting diagnosis for most, but surprisingly you will be able to live with being a victim for a goodly time. I was diagnosed in 2011, having had the symptoms for a year or two prior to diagnosis. I am progressing but, touch wood, at a relatively slow rate. It has gotten a little worse the past few months, but I still lead a normal life. One reader has remained at an even slower rate, 16 or 17 years to reach where I am now. So try to relax, accept your situation and enjoy life. PD will not kill you and anyway, I am certain a cure or a stabilizing drug to stop the disease, will become a fact in my lifetime.

Take drugs or don't take drugs

The debate rages on. On the one side PWP put off taking drugs on the basis that if you start l-dopa too early (Carbidopa-levadopa or simply "l-dopa") you may get too much dopamine in your body. Too much dopamine may cause dyskinesia (abnormal, involuntary body movements) in the future which would interfere with life in later years. (see MJF on Letterman, 2015/4/15 - youtube) These PWP are willing to endure their symptoms to ensure a better future. The other side promotes taking the drugs immediately to stop the symptoms (they don't stop the progression, that continues unhindered), in the belief that you should enjoy life when you are younger and to hell with the future. I took the drugs immediately. Make a decision and try to live with it. (If you start with sinemet, and want to change sides and discontinue, you have to wean your body, so do not stop suddenly.)

Drugs, drugs, and more drugs

In a way, we PWP, are lucky. There are a plethora of drugs that can be used to control symptoms. For example, I take a dopamine agonist (look it up), l-dopa and amantadine 4x a day and they have put a halt to my tremor. It's not all good, I still suffer from:

• occasional festinate gait
• difficulty with word finding (dysarthria)
• dry mouth
• back pain
• exhaustion
• constipation

I can live with these. They are not with me constantly and at least one, constipation, is helpful. It offsets the "aztec two-step" that I suffered from prior to diagnosis.

I am growing weary. I shall continue in later entries. For now, keep in mind you are part of an exclusive community. There are only 5 million of us in the entire world!

The future rewards those who press on. I don't have time to feel sorry for myself. I don't have time to complain. I am going to press on." - Barak Obama

Turn Around Jump Start

I played, and later coached, basketball. I was Ok – about 6 on a scale of 10. I remember one glory game played against the army apprentices when I couldn’t miss. I got 12 baskets where normally, I would get 5 or less. Even in my early 60’s, I could play. Just prior to diagnosis, I tried a layup and could hardly get off the ground. I was bewildered. I knew as I grew older, I would have to slow down; that’s nature, but to this degree! Anyway in this, my final game, I was content to pass the ball. The one shot I took hit the rim and bounced off to the opposing team. I was later to discover I had PD and staying on the ground was my future.

With apologies to Paul Simon, I have memorialized the day I learned that PwP can’t jump.

Took a turn-around rim shot
PD had a head-start
I couldn't make the jump chart
Jump balls are magical and magical is heart
But I am rooted to the ground floor
With no games left to start

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The Parkie Depression i.e. Sadness and depression are not synonyms

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I may have been depressed once. I took a pill (I can't remember what it was for). I was supposed to take it just before bedtime but, real men don't obey the doctor's orders, I took it around 10:30 AM. I suffered all day. I could not have cared about anything. I was exhausted and unhappy. Drug induced depression, I guess - a 24 hour depression. A total opposite mood from the mood(s) I generally display.

About 20% - 25% of PWP will suffer depression and that begs the question: Does PD cause the depression or is it caused by the drugs?

Unfortunately, like all things PD, who knows? No doubt the answer is probably both PD and drugs or a combination are capable of being the culprit(s). Another "who knows" answer. Don't despair, caught early enough, a professional mind disrupter -ie - psychiatrist or psychologist, can help lead you out of your darkness.

I have discussed depression in earlier entries. They were generic sessions. This entry will deal with the scary stuff, the characteristics of PD depression that will drive you deeper into your black shadow. Keep in mind that sadness alone is not PD depression. No. What follows is a list of "all that misery's hand bestows to fill your catalogue of parkie woes"*. If you experience some, or all of these, see your doctor because depression may cause our sick passenger to pick up its pace and worsen your current symptoms.

Behold my list that I compiled from the literature.

If you have Sadness plus

• you are indifferent to things you used to enjoy.
• you are exhausted all the time
• you don't get enough sleep or you get too much sleep.
• Your appetite suffers
• you can't concentrate
• you don't like yourself
• you would rather lie around all day and brood
• you have thoughts of killing yourself

.

Sadness alone will probably cure itself, but if any of the things in this list, let's say four or more, accompany your sadness, get thee to a medico and get some help.

Depression is akin to a war between your body and your brain. Your body urges you to live, but the brain wants to die. This is one battle we can win if we attack quickly.

*apologies to John Scott of Amwell and his anti-war poem, The Drum

The Last Post less one

Not that "last post", I mean the entry before the last entry in which Michael asked, You have commented on this before. Does it come and go for you? Does sinemet or the other drugs seem to have any impact on ability to speak, think, or voice for you?

I will expand on my emailed answer to him.

As designer disease, nobody can predict the future of PD (other than the eventual outcome) Symptoms do seem to come and go. For Example, prior to taking drugs I suffered some of the following symptoms of PD.

• the first one was a gradual complete loss of smell. It is never going to return.
• Next, for a period of 3 weeks, I could not swallow anything but soup and soggy, crustless bread and that problem has not returned.
• I moaned aloud when set upon by a vicious cramp in my leg. It returns periodically, but not with the same intensity.
• I drooled as my mouth worked overtime to produce saliva. Haven't seen it since taking drugs.
• A face with no emotions which didn't last long, again cured by the drugs
• Vivid dreams - so far I haven't lashed out and hope not to. The dreams are still with me.
• Sleep deprivation and momentary hallucinations brought on by that deprivation. I no longer see things.
• And let's not forget the mother of them all - tremors.

Now I have developed, and keep on developing a speech impediment and I doubt it will leave me. The drugs I take are amantadine, mirapex and L-dopa The drugs are beneficial, in that they hide the symptoms and gave me back my life. They have no negative effect on my thinking just on getting my thoughts out of my mouth. That and the loss of smell are the only serious side effects.

We won't mention the loss of libido.

The child is father of the man (Wordsworth*)

I think Wordsworth was saying that the character of a man / woman is shaped from the events and influences of his / her childhood.

If that is the case, my wife and I have produced 3 good people. Braggadocio? I think not. Witness the events of the past 5 days.

Six days ago, my 67 year old wife deadlifted 160 lbs. The next day she had a hysterectomy (uterine cancer). For the four days following, she was bedridden. Who took charge? Not me. Between the 3 of them, our children took over, making a schedule for which of them would be in the house at all times, making notes of the doctor's instructions, setting up a timetable for taking medication and ensuring it was taken. In short, they did everything necessary to see her through the tough times while also being solicitous of my well being. My conclusion was that it was "time to let go."

Now 70 years old, I am used to being in charge, being the strong one, the disciplinarian, the solver of problems. Now I fear I am no longer that person and maybe I never was; you'd have to ask my children. Whatever was the case, I now see the competence of each of them and I am ready to stand aside and let a new generation take up the cause. I can look forward to my golden years with my wife, who came through the operation with flying colours and with a new goal, a deadlift of 200 lbs. I am certain she will make it, after all, in reality, she was the backbone of our home. Our children are the recipients of her determination and other desirable qualities. They may have got some from me but, who knows? Again, you'd have to ask them..

Why all this personal stuff? I hear you ask.

Life throws curve balls our way and we want to hit each one out of the ballpark. It isn't always possible. Age and/or parkinson's robs us of our strength. We have to let go and let another assume the throne. We should not be embarrassed about our "disease" and nor should we disparage our fall in status.

That's life folks. Live it!

Someone, I don't remember who, said something to the effect that the hardest part of letting go, is learning to start over. We have no choice but to accept our time with PD and let our children take charge while we learn a new role in the universe.

The child is becoming the father.

* from the poem, "The Rainbow"