Health and Fitness

A Message to the Post-Polio Generation

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A Message to the Post-Polio Generation

Hello.  My name is Danna G. Hallmark.  For nearly three decades (from 1980–2007) I developed and ran federally recognized alternative medical labs and clinics throughout the US and into Canada, where my own methodology was used to restore and/or maintain the health of thousands of individuals.  My quest to find workable and viable alternative methods resulted from the inability of mainstream medical thinking to rectify, understand, or even to consider what was happening to my own body.

As I successfully worked through the health problems of thousands of patients, one goal escaped me – my own comfort and well-being.  Nothing I did prevented my own slow deterioration.

Dr. Bruno’s Book

In 2004 I had occasion to read the book, The Polio Paradox, by Dr. Richard L. Bruno, MD, PhD.  (Dr. Bruno is known as the foremost authority on Post-Polio and Director of the Post Polio Institute.)  After a nearly 50 year struggle with my health, at nearly 60 years of age, I opened Dr. Bruno’s book to read the story of my life – and it was quite a shock!

I’m writing this article as a patient, not a professional.  I am presenting information from Dr. Bruno’s book; however, this is not intended to be a paraphrase of his work.  Indeed, I ask that he overlook any writer’s etiquette I breach in my attempt to demonstrate to you from my personal examples how real what he writes is – in hopes that what I write might trigger your own investigation of his book if you are one of the twenty million who are unaware of their situation.

The first astounding fact I learned is that there are around 20,000,000 polio survivors out there who might not be aware that their progressing health problems are the result of the virus they had contact with decades ago – THEY MIGHT NOT KNOW THEY EVEN HAVE POLIO.

You’ve probably never considered what I’m about to tell you –

I hadn’t either.

Who thinks about polio unless a loved one suffered from the disease, died or was crippled with it?  Who considers the disease?  Vague memories of “poster children”, President Roosevelt, “iron lungs”, vaccine, and cautions from our parents to stay out of the hot sun might come to mind.  But that was decades ago.  That threat is gone.  No.  Actually, that threat is more real than ever for those who are suffering from the on-going effects of polio and aren’t aware of it.

As I read Dr. Bruno’s book I was shocked to see that I might as well be a poster child for Post-Polio Syndrome (PPS) ALTHOUGH I NEVER WAS AWARE THAT I HAD EVEN HAD CONTACT WITH THE

DISEASE.  I attended elementary school through the “polio scare” of the 50s and was a normal, rambunctious kid of that era, running, playing, enjoying life with a very good home life and a family that was supportive in the fashion of the day.  However, sometime between my fifth and sixth year of grade school I changed into a caricature of my worst self, with wildly fluctuating weight, swelling and water retention, a need to be alone, and aches and pains, as a veil of melancholy settled across my life.

I remember in the fifth grade being a normal kid, full of energy and life, you know, running just because I could.  However, by the time I was into the sixth grade, when I ran and played I would experience pains, burning and soreness in my legs and arms.  I also seemed to lose my stamina – I became winded with just a short run.  But my habit of playing or practicing a sport for hours at a time – shooting hoops or bouncing a tennis ball off of the garage door for hours at a time (much to my mother’s discomfort, I might imagine) belied my actual problem.  At the time I had no one to compare these phenomena with and quietly dealt with them as just part of life.  I thought I was no different than other people who had mentioned being sore and stiff after exercise.  I thought that what I experienced is what they were talking about.  But it wasn’t.

I struggled through home, school, and social activities in an uncomfortable, unhappy purgatory.  I had no reason to believe I was experiencing things that others weren’t.  I took it as part of life.  At the various stages of my health decline, what I experienced was attributed to overeating, over-training, fibromyalgia, nervous condition, arthritis, injuries, and a myriad of other maladies that seemed to reflect my symptoms.  I had various diagnoses to no avail.  I had early on decided it was just my life and I would have to deal with it – that is, until I read Dr. Bruno’s book.

The intention of this writing is not to educate you on physical science; but I feel a sketch of what occurred when you might have unknowingly come in contact with polio is essential in helping you to see how it could be affecting you without your knowledge.

Polio is NOT What We Typically Think It Is –

  • There is more than one type of Polio virus. The Type II virus was typically experienced as only a summer cold/flu-like illness for a few days and was largely ignored by people who were thinking of polio in terms of paralysis and death.  Because many Polio victims didn’t have the devastating conditions that were associated with the disease, Dr. Bruno’s research indicates that there is a hidden epidemic of post-polio breakdown in the Boomer Generation – a generation that is possibly being medicated for “diseases” they don’t have and, in the meantime, is unaware of information and advice essential to living their lives the best they can.
  • Polio is not a disease of the muscles or joints; it is a disease of the brain stem and the neurons. It seeks out and destroys the neurons that “activate” a person – motor neurons.
  • Motor neurons transmit information through electrochemical signals, called synapses, by which they connect to each other to form networks that run throughout the body and turn muscles on and off as the need arises in daily activities.

Although we have billions of neurons, a bout with even Type II polio can destroy up to 50% of our supply.  Although the virus may not still be active after the initial attack, the very activities that a person engages in to survive result in new overuse and die-off of more neurons as they go about their life.

  • The good news is: neurons are able to branch out and do double-time, many times adopting “orphaned” muscles, enabling the victim to recover a semblance of or mimic a lost movement. This enabled many paralyzed polio victims to regain the ability to use the affected limbs and, seemingly to “recover”.
  • The bad news is: this ability to recreate movement convinces persons that recovery is possible and drives them forward with false hopes, while the neurons doing double duty begin to wear out and eventually also die of overload. Who Knew?

This is my message.  Through Dr. Bruno’s book I learned that I am literally killing myself by my misuse and abuse of my neurons.  By pushing myself, because I think it’s my fault (I should work harder, eat less, exercise more, worry less, and so forth) I am literally doing the exact opposite of what I must do to save my own life.  And you may be also.

The book, The Polio Paradox, may tell your life’s story or that of someone you know as it did mine.  I’m not connected with Dr. Bruno or his organization.  His book is on the market for you to buy and read.  This is not intended to be a medical or scientific volume or the story of my life’s struggles.  My hope in writing this article is to alert you to possible danger.  I will, however, for the remainder of space I have here, pick out some of the evidence of post-polio symptoms that I dealt with for much of my life unknowingly, until I read the book.

Neuron Die-Off

This PPS phenomenon is how all else comes about.  It is a detrimental and dangerous syndrome we adapt out of our ignorance of the fact that over achieving can and will destroy another group of over-used neurons.  I call it “Crash and Rebuild”.  It occurs when PP Survivors’ typical Type A personality (their will) is stronger than their physical abilities.  It happens as a result of their marvelous brain’s attempt to keep pace with their will by using the resources the body has left after earlier neuron die-off.

We go about our lives unknowingly running on fewer neurons than other folks.  Lack of knowledge results in pushing ourselves until we burn out even more of our limited supply.  I distinctly remember crashing at least four times in my life where I actually had to teach myself how to walk again.  At these times I had no idea that, instead of recuperating as one normally does after any other type of health episode; I had actually called on the remainder of my over-worked neurons to do double time in order to drive my body to act in a way that appeared to have normal movement and abilities.  In doing so, I destroyed even more of the remainder of my hard-working neurons.

When and How Die-off Happens:  In my case it comes at my peak performance — when I have trained, studied, worked and conducted my life where I am at my best, mentally, physically and emotionally – Flying High!  An event or events (physical and/or emotional) will trigger the crash.  One time it was over-training in the gym.  Another time it was the deaths of seven individuals (close family, close friends) within a six month period.  Here’s what happens to me each time:

  1. I gain much weight and size very quickly (20-25 pounds in a matter of two months or so) and most of it is around the mid section (solar plexus area). I experience swelling across my back and ribs with soreness to the touch that becomes more noticeable with fatigue.
  2. I realize extra pain in my legs. (In later life, this extra pain also occurred in my neck and shoulders.)
  3. Walking becomes extremely difficult and I have to resort to watching my feet take steps and using some type of a balancing help like a cane. Typically, I manage to take walks, monitoring my leg and arm movements and eventually establish a sort of rhythm to my gait.  The pain in walking increases with each crash and doesn’t tend to diminish when I rebuild.
  4. In recent years, I find that my hand-eye coordination “crashes” with my other abilities and has to be monitored and rebuilt along with my walking ability.

 

Dr. Bruno’s book taught me that this pain and syndrome is a result of my inability (through die-off of neurons) to mentally connect with certain muscles in the fashion I developed after an earlier crash.  When my brain connects orphaned muscles with live neurons that substitute for those I had been using for a certain movement like flexing my leg, this causes me to use muscles in foreign ways to what they are accustomed to and causes spasms, Charlie horses, and muscle knots.  Of course each of these is very painful.  This is why polio survivors describe pains as burning.

How Burnout Feels: This is a very interesting phenomenon.  I can imagine this is why it appears that people tend to “deny” that they have this problem.  It’s a little surreal, actually.  When I revisit my life it seems really freaky how these things could have happened to me time after time and it’s like I dreamed it.  Folks, this is weird.  This is what it looks and feels like to me from the inside:

  1. It is like it is happening in slow motion as in a dream. It doesn’t feel real at the time it is happening or in retrospect – like I thought it or dreamed it.
  2. I learned early to go through it alone. Although I didn’t know how or what happened to me, I learned that no one else knew either and I couldn’t explain it to them.  “Just three months ago I was that way and now I’m this way.  I don’t know what happened.”
  3. After the crash I can’t think of some normal movement such as how to move my knee or transfer an object like a pencil from between two fingers to two others. My brain simply won’t “think” of my knee or of my fingers.  But my body finds some other neurons that will take on the task of connecting with the orphaned muscles and/or firing other muscles in close vicinity to mimic the movement I had before.
  4. After my body rebuilds each time, I tended to forget what happened (really!) and press on with my Type A activities until it happens again.

How Burnout Looks: When I crash, I appear to other people to have “let myself go”.  I “gain weight” very rapidly, my clothes don’t fit anymore, I move into my leisure wardrobe because waistbands hurt my sore ribs and back, my discomfort prevents me from participating in social activities or going shopping.

  • To others it appears I have simply gotten lazy and let myself go. How can I tell them what has happened to me when I don’t know myself?
  • With no support or respect, I go through it alone, try to figure out how to do things again, and move on with my life, vowing that the next time I’m going to see what triggers my slow-moving nightmare. However, it always comes as a surprise.
  • Others will support me if I diet or exercise. That is what it appears that I need to do.  How can they properly support me when I can’t tell them what is happening to me because I don’t know myself?
  • The saddest thing is when I begin to build a semblance of my life back, and start to get out more, others are so happy that I am losing weight and looking so much better – like it’s that simple. That’s a tough one to take.

 As I get older I crash easier and quicker and come back slower and less “normal”.  I realize I have fewer neurons to expend and try to take it easy and keep these things in mind.  Well, part of me does try to keep this in mind, but another part of me begins almost immediately to plot out how I can put in a new flower bed or paint the carport ceiling – “Let’s see – if I just get the ladder and paint out one day, then I’ll rest a day, and just paint a little bit the next day….”  See how my mind works?  One part of me knows I do not have the neurons to blow on painting the carport ceiling.  But another part of me can’t remember that.  It’s not denial as such, but it certainly can appear that way.  And you may be no different.

I have found that one of the most noticeable results of my own neuron die-off syndrome is what Dr. Bruno describes as occurring after the neurons that activate a muscle or muscles to contract are more active than those that relax the same muscle or muscles.

How Bracing Looks:  Bracing is easier to detect in others than in self.  When someone seems to sit on the edge of their seat all the time, appears to be ready to spring into action of some kind, and has what might even seem to be intimidating body language, they may be bracing.  When they can’t seem to sit comfortably with their hands in their lap, but may be holding their hands at odd angles to their wrist in a half-claw, or configured in some other unnatural pattern such as fingers extended outward in an exaggerated fashion, they may be bracing.  Actually, at times bracing can appear to be an elegant movement, sort of like sipping tea with the pinky up.  Bracing can also occur in arms and shoulders, legs and hips.

What Bracing Feels Like:  Bracing is actually an unconscious, ongoing isometric exercise.  People who brace because of neuron die-off aren’t generally aware of it until they learn to take stock.  One way is to stop right where you are and detect those muscle groups that aren’t relaxed.  I find my tongue pushed to the roof of my mouth and my teeth set or clinched.  Sitting in my easy chair I typically find that, although I think I’m relaxing with my elbows on the over-stuffed arms, I am actually pushing down with my elbows and tensing my shoulders, like I’m ready to pounce.  If I pause while reading a book, close it and lay it in my lap with my index finger marking the place in the book, I might realize in a minute or two that I haven’t placed the book in my lap at all, but I’m still supporting the book with my wrist and forearm.  That is bracing.  It’s a totally unnecessary activity and tires the person out over the day as well as wears out remaining neurons from subconscious overwork and overuse.  It is an ongoing process to “detect and correct” bracing.

In my limited space here, I have chosen to give four examples, two of a general nature and two very personal, extremely spot-on and a little spooky, if you will.  In many cases, while reading Dr. Bruno’s book, I found PPS symptoms listed that are so bazaar and that fit my life so perfectly, I wondered who had been watching me and reading my thoughts all these years.

Now, this isn’t Alzheimer’s. This isn’t dementia as you might think of it. It is specific to PPS survivors and is a directional brownout – and is so prevalent that Dr. Bruno devoted an entire section to it.

It’s a little disconcerting when someone writes that I have trouble finding my way back home when I drive — not all the time, only on occasion and when I’m very fatigued.  I was very surprised when he called the portion of his book “My kingdom for a map”.  You see, I can find my way anywhere with a map, either one that is folded beside me or that I have seen and is in my head.  BUT, if you give me verbal directions, I lose you at the first turn.  I have referred to myself often in my life, jokingly, as “geographically dumb”.

The more stressed and fatigued I am the more I am liable to get lost.  Driving an hour to the big-box store I visit 2-3 times a year is no problem, but, after walking the aisles for two hours and muscling heavy boxes and bags of groceries, I have a 50-50 chance of turning the wrong way when I leave the parking lot.  And then I may circle and circle for 30 minutes to an hour before I see something familiar and get my bearings.  It’s a strange phenomenon.  I’ll drive to the entrance onto the street, start to turn, and think, “I don’t recognize this street.  I must be getting ready to turn the wrong way”,  And then I’ll turn the other way (the wrong way) and spend sometimes an hour circling around trying to find something familiar.  At moments like this I don’t feel afraid or confused – I just don’t see anything familiar.

I spent the night with my sister in Arkansas several years ago and not only contacted the flu, but was nearly snowed in the next morning.  Knowing I had to get home (7 hour drive) Jeanette led me onto the interstate in her car.  Even watching her car in front of me, I made a wrong turn and had to do a U turn to get back behind her.  And, after all of that, when I stopped later for gas I turned wrong out of the gas station and took the “scenic tour” of some little town for a half hour or so.

  • The fact that this odd behavior is prevalent with PPS survivors shocks me.
  • The fact that Dr. Bruno has studied this enough to have imparted that information to me through his book is a god-send.
  • The fact that I know this about myself helps me to take precautions.

I’ve had trouble walking for decades.  It gets worse with fatigue, stress, schedule clutter and so forth.  I’m never without pain and every day is different.  I’ll have “shin splints” one day and have pain like a tooth pick under my knee caps the next.    The polio virus targets the motor neurons, but also is somewhat specific which motor

neurons it effects.  The knees are a prime target, it seems.  And the more we walk and the older we get, the more we are apt to kill off many motor neurons that fire the muscles that enable us to walk.

You’ve seen us – by the hundreds — The unknown and unheralded 21st Century Middle-Aged Post Polio Poster Child.  We’re the ones who hang on the grocery cart with our elbows.  We hurt, and we’re unsure of our knee movements.  We are using the grocery cart as a walker.
But, here’s the interesting point Dr. Bruno makes that mirrors my attempts to walk when I’m fatigued.  He writes that, later on in the breakdown of the ability to walk, a PPS survivor will begin to rely on their hip and back muscles to walk.  This creates a rocking side-to-side movement like a windup toy.  When I stop and consider what I’m doing, I realize I am walking like I’m on stilts– with no knee movement, but relying on hip and back muscles to move forward.

 A Last Word

I’ve shared with you only four of the symptoms I found in Dr. Bruno’s book that mirror what has occurred in my life.  There are dozens more he describes from his research that may fit your condition better than those I’ve shared.  Each individual is different.  If you are one of the twenty million post-polio survivors who are maturing under the condition, with guidance from the book you may be more able to live your life the best you can.

This is my gift to the Post-Polio generation.  I wish you all the best.

____________
Editor’s Notes:

Danna Hallmark

Danna G. Hallmark

Danna G. Hallmark is a business concept and training materials developer, philosopher, author, and writer, who has had a long career of “out of the box” thinking, guiding, and counseling in many venues. More of her writings can be found at http://www.dannagrace.com, http://www.yourjewelryguide.com, http://www.t-FOH.com. Danna is also published by Academia.edu and has several books on the market, both in digital and hard copy. You can reach Danna by asking to connect on Skype dannagrace1, or at danna@dannagrace.com. Copyright 2015 DannaGrace, LLC

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