FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP   -   Vol. 15   #3

             12 Eclipse Trail  /  Ormond  Beach,  FL  32174  /  386  676-2435

        E-Mail:-  bgold@iag.net   --   Web Site:-  home.iag.net/~bgold/polio.htm

NOVEMBER/DECEMBER   2008

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WISHING  ALL OUR FRIENDS

A CORNUCOPIA WITH THANKSGIVING GOODIES

A LIGHT-FILLED CHANUKAH

and the

MERRIEST OF CHRISTMASES!!

 

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                        NEWSLETTER  &  MEETING  NOTICE

 

November 9th, 2008 – Two therapists from Florida Hospital Pt. Orange Rehab

                   Services David Manestar, Manager and Kristen Hanak, certified

                   Lymphedema Therapist.

        January 18th, 2009 – Dr. MaryAnn Keenan, head of University of PA

Orthopedic Surgery Department, will talk on both surgery and bracing. 

Michael Kossove, Professor of Microbiology at Touro College, NY, will talk

about Polio 101.

 

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         CONTENTS

 

From Barbara                                           

An Approach to the Patient with

     Suspected Post-Polio Syndrome      

Isn’t This the Truth????                          

6 Super-Healthy Snacks                          

This is Happening Right Here in

Our Own Country                                     

Various Types of Pain Defined               

A Keeper                                                  

Calendar Watch                                       

 

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                                    FROM BARBARA

 

          Please be sure to note that our meeting this month is the second Sunday – NOVEMBER 9th – the reason for this is very simple…. I am cruising from November 16th to the 23rd.  This time it’s on a Holland America ship, the Westerdam, I have not been on this line before and will let you know how it was in the next newsletter.

         

Last newsletter I told you how I knew Professor Kossove – now I’ll tell you about Dr. Keenan.  I first met Dr. Mary Ann Keenan at one of the Post-Polio International Conferences in St. Louis – if I remember correctly it was the 1989 Conference.  I met her again, and spoke with her at the Philadelphia conference in, I believe, 1992, and thought to myself it was time to go and have her do an evaluation as my polio leg was getting weaker and weaker and the attempts at bracing me were failing.  However, being a true Type A post-polio, I then decided “No, I’m OK – I don’t have to go see her.”  By 1995 my two legs were forming the letter “K” and there was no doubt that I needed help – sooooooo, to Philadelphia I went, to the Albert Einstein Medical Center where Dr. Keenan was heading up their Post-Polio Clinic.  After the clinic’s very thorough examination, Dr. Keenan told me I had two choices – I could no nothing in at some point (no telling exactly how long) my right knee would collapse on me and I would be in a wheelchair full time --- or I could have surgery to straighten out the knee and go back into a brace.  She went on to say that there would actually be two operations – it seemed that my right ankle (which had been stabilized back in 1948, so that I wouldn’t have to wear the brace I had been wearing since 1935, of course changing as I grew) was going to the right, while my knee was going to the left.  I had a 45 degree valgus.  As I knew that I definitely didn’t want to be full-time in a wheelchair, I told her I would do the surgery. 

                  

When I told my family, they immediately wanted to know if the brace that I would be given would wind up in the closet with the rest of the braces that I had tried the previous few years.  This time I told them I would have to wear it because after the surgery my leg would not be strong enough to support me without the brace.  The only time it would be off me was when I was sleeping. 

         

The surgery was done in November 1995.  The knee on November 10th and the ankle on November 21st – the delay due to the hope that maybe, somehow, after the knee was done it would line up with the ankle.  Of course, it wasn’t to be.

 

          The day after the ankle was done a brace was fitted and made for me – I’ve been wearing that brace every day since then.  I stayed at Moss Rehab (connected to Albert Einstein Medical Center) for six weeks having physical and occupational therapy twice a day, 5 days a week.

 

          Dr. Keenan was there giving me support the entire time.  I still go to Philadelphia every year for checkups – only now I go to the University of PA Hospital to see her. 

 

          We’ve had two conferences here in Daytona Beach – the first one in 1996 and the second in 2000.  Dr. MaryAnn Keenan was at both, and each time was surrounded by post-polios asking her questions and advice.  When I saw Dr. Keenan this past April, I very casually said that it was 8 years since she was down here giving a presentation – she agreed and, after consulting her schedule, said that our January 18th meeting would be a good time for her. 

 

          If you have never heard Dr. Keenan give a talk on surgery and bracing, this is the time to do so.

 

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The following article is from the Michigan Polio Network’s Polio Perspectives, Volume 23 No 2, Summer 2008.  It was very kindly e-mailed to us by their Editor, Vera Hazel.  Thank you, Vera.

AN APPROACH TO THE PATIENT WITH SUSPECTED POST POLIO SYNDROME

Polio survivors are at risk for the occurrence of certain physiologic changes in the nervous system which result in a characteristic set of symptoms now known as Post Polio Syndrome. In addition to these unexpected physiological changes there are anticipated complications such as arthritis, scoliosis, and entrapment syndromes that frequently accompany paralytic conditions. These anticipated complications are not the problems that distinguish PPS from other diseases of the nervous system. Post Polio Syndrome (PPS) is a major chronic illness and one which poses unique problems to its survivors and their physicians.

No Diagnostic test exists for PPS, so clinical criteria must be used to establish the diagnosis. Many Physicians lack training in the diagnosis and management of a syndrome only recently acknowledged as existing. Patients are often uncomfortable with physicians they feel do not understand their problems. They also fear increased disability, often at the same time they are coping with limitations of aging. Patients are often trapped in a "conquer the disease" mentality derived from the experience of recovering from the acute episode an average of 25 years earlier. This is incompatible with the lifestyle adjustments necessary for optimal results in PPS rehabilitation.

I. INTRODUCTION

A. DEFINITION OF POST POLIO SYNDROME

An otherwise unexplained constellation of symptoms which may include weakness, fatigue, pain, heat or cold intolerance, and swallowing, breathing, or sleep disturbance developing in a patient who had paralytic polio. Post Polio Muscle Atrophy (PPMA) has been used as the label for the above symptoms when they include progressive muscle atrophy.

B. SCOPE OF THE PROBLEM

1987 National Health Interview Survey estimated 1.63 million American polio survivors (=0.625% of population), 50% with some Post Polio Syndrome symptoms.

C. DIAGNOSTIC CRITERIA

1. PPS is a diagnosis of exclusion and should be based on a thorough history and physical exam.

2. Evidence of prior paralytic polio: via EMG, an appropriate history, or characteristic residual atrophy.

3. Period of apparent stability before any new symptoms. New symptoms may often be seen after an illness or injury.

4. Exclusion of other conditions (especially motor neuron diseases and overuse syndromes).

II. PATHOLOGY: PHYSIOLOGIC AND CLINICAL CONSEQUENCES

A. EXTENSIVE NEURONAL INVOLVEMENT IN THE ACUTE POLIO INFECTION

1. The extent of central nervous system infection by polio virus is not well appreciated. Infection is far more widespread than anterior horn cells alone. Often anterior horn cell infection is largely subclinical due to residual capacity of uninfected and surviving neurons. Infection outside the anterior horns is likely to be largely subclinical also, but may help to explain the disabling symptoms of fatigue and pain which are subjective and controversial (because the physiologic basis is uncertain).

2. Ninety-five percent (95%) of motor neurons are infected in an average acute infection, with a 50% neuronal fatality rate.

3. There is frequent segmental involvement, accounting for the lack of symmetry of weakness.

4. In addition to the anterior horns in the spinal cord, infection involves inter-mediolateral horns and dorsal root ganglia.

5. Infection also involves motor cortex, hypothalamus, and globus pallidus, brain-stem nuclei, reticular formation, cerebellar roof nuclei, and vermis.

B. MOTOR UNIT REMODELING IN THE POST RECOVERY PHASE

1. A normal quadriceps has, on average, 200 muscle fibers/anterior horn cell and a normal anterior horn cell can adopt as many as 1,000 orphaned muscle fibers.

2. Over 50 % of motor units may be lost without symptoms. (Normal walking uses only 15-20% of maximum muscle strength.)

3. Clinical improvement occurs acutely through recovery of mildly affected neurons, collateral sprouting, and strengthening (hypertrophy) of intact musculature.

4. Increased demand on surviving motor units results in increased firing frequency which in turn produces a change in fiber type to predominantly aerobic "slow twitch" fibers with increased vascularity.

C. DECOMPENSATION THEN PRODUCES POST POLIO SYNDROME

While a single underlying etiology for PPS has not been proven, several theories exist:

1. There is an increased metabolic burden on surviving anterior horn cells (even in asymptomatic muscles) as they direct more muscle fibers to contract, more often, to achieve the same force of contraction. This leads to anterior horn cell fatigue and can lead to premature metabolic injury, perhaps even cell loss. Fatigued neurons may be unable to continue to trophically support as many muscle fibers. The collateral sprouts to some muscle fibers will degenerate. The strength of these muscle fibers will be lost to the motor unit, and a spiral of decline may set in. This mode of decompensation augured by fatigue, may be anterior horn cell based. This appears not to be a static process and there may be dynamic denervation and reinervation.

2. Another mode of decompensation is muscle fiber based: Rapidly firing muscle fibers produce more lactic acid which may not be adequately dissipated. This is especially true with any degree of isometric contraction. Muscle fiber fatigue may, lead to muscle fiber injury, lost function, and a spiral of decline.

 

3. Any increase in mechanical load (such as would result from increased weight or increased physical activity) or decrease in force generating capacity (such as would result from inactivity following illness or injury) may trigger metabolic failure in motor units or in muscle fibers functioning close to their capacity.

4. The resulting relative weakness may lead to joint and muscle misuse and overuse. This may lead in turn to both arthritis and overuse syndromes.

5. In addition to anterior horn cell and muscle fiber modes of fatigue, central fatigue may also be a factor. Polio virus infection of the motor strip and the reticular activating system is well described. A working definition for central fatigue is: "Increased mental effort necessary to perform a fixed amount of muscle contraction". This is very much how Post Polio Syndrome patients describe their feelings of fatigue, many report hitting a "post polio wall".

III. PATIENT PRESENTATION

A. PRIME SYMPTOMS

A common presentation is a polio survivor who previously had lower extremity involvement in a well defined polio episode. The patient may have restricted ambulation from hiking or jogging, lived a sedentary life, and did not feel disabled. After a period of relatively stability he or she may begin to notice unusual fatigue and discomfort and may further restrict activity. Denial of decreased functional capacity may lead to a crisis as the patient can no longer can meet occupational, social, and family commitments. Persistence and attempts to continue at a previous activity level may lead to a downward spiral of decreasing functional capacity with resulting depression and despair. On examination, relative obesity may be present and weakness is easily demonstrated, often in the "good" leg; limbs considered unaffected are often subclinically affected with polio and may present with "new" polio. A statistical summary of the clinical characteristics of several series of PPS patients is as follows:

1. Fatigue, Pain, and Weakness are almost always present. Fatigue (89%); Pain in Muscle or Joint (86%); New weakness (83%) in previously symptomatic (69%) or asymptomatic (50%) muscles.

2. New Atrophy (28%); This equates to Post Polio Muscular Atrophy (PPMA).

3. Activities of daily living difficulties (78%) = functional loss. Walking (64%); Climbing Stairs (61%); Dressing (17%).

B. ADDITIONAL PRESENTING PROBLEMS

1. Pulmonary dysfunction:

Patients with Post Polio Syndrome may suffer from weakness of the breathing muscles, namely the diaphragm and ribcage. Occasionally, this can be severe enough to cause symptoms of dyspnea on exertion and even at rest, poor clearance of respiratory secretions increasing the risk of pneumonia, and elevations in the resting arterial CO2 level. Measurement of pulmonary function tests in these patients usually shows a significant restrictive pattern (small lung volumes) on the basis on neuromuscular weakness.

If respiratory muscle weakness is severe enough mechanical ventilation may be required. Small mechanical ventilators have been developed which deliver breaths through a comfortable plastic nose mask. This is often performed while the patient is asleep at night and results in improved daytime function.

2. Sleep Disorders:

Patients with Post Polio Syndrome have a high incidence of sleep disturbances with poor sleep quality and frequent awakenings which may be due to several factors. However, the most important etiology to rule out is central, obstructive and mixed sleep apneas. Nocturnal hypoxemia and hypercarbia can lead to worsening of daytime function of the breathing muscles. Nocturnal non invasive ventilation can be used in these patients to improve sleep quality and reduce symptoms of daytime sleepiness, and perhaps improve daytime respiratory muscle function.

3. Dysphagia:

Many PPS patients reported some new difficulty with eating or swallowing more commonly in those with bulbar polio. Video fluoroscopy has been used for evaluation and has frequently revealed pharyngeal constrictor weakness. Laryngeal penetration and loss of the cough reflex may occur without symptoms, suggesting an underestimation of the presence and severity of dysphagia in this population. Many patients have already employed compensation such as altering diet, cutting solids into small pieces, chewing it thoroughly, taking small sips of liquids, eating slowly, and using postural maneuvers. Most patients with dysphagia had also experienced some progressive speech difficulty such as increased hoarseness, weakness, or slurring.

4. Cold intolerance (29%):

Limbs may be cold and cold exposure produces weakness. This is thought to be due to intermediolateral column involve-ment resulting is vasoparesis, venous pooling, and excessive heat loss.

5. Degenerative arthritis:

A joint that is biomechanically disadvantaged may develop degenerative arthritis.

6. Social and psychological problems:

Long term disability and denial may result in social and psychological problems.

C. PAST HISTORY

1. Average age of polio onset is 7 years. Median time to maximum recovery is 8 years. Median period of stable neurologic and functional status is 25 years. Median post polio symptom duration before patient presents for evaluation is 5 years.

2. Variables associated with shorter interval to PPS: greater severity and greater age.

3. Initial symptoms are most frequent in the lower limb most affected in the acute illness. (Upper extremity weakness is easier to compensate for without overuse resulting.)

4. The onset is usually insidious but is frequently precipitated by injury, illness, bed rest, or weight gain.

IV. EVALUATION PROCESS

A.  IDENTIFY AREAS OF DYSFUNCTION

1. The history is especially useful in identifying fatigue, dysphagia, sleep disorders, and alteration in activities of daily living.

2. The Neurologic exam will identify atrophy or weakness and verify that reflexes are not increased. Pay special attention to the "good" limb as significant weakness may be present of which the patient has never been aware. With leg muscles, functional tests must be used because manual testing may not detect quadriceps weakened to 30% of normal even though this is sufficient strength for routine daily activities. Seek a mechanical advantage in manual muscle testing: Test the triceps or quadriceps with the elbow or knee flexed more than 90 degrees. Test the psoas in the supine position.

3. The general physical exam and biomechanical exam note obesity, joint deformity, overuse syndromes, and scoliosis.

4. Electromyography may be requested when needed to document previous anterior horn cell disease (especially when the previous history of polio is in doubt). EMG can also be used to rule out other neuromuscular pathologies or to identify subclinically involved muscles.

5. CK elevation may be seen in patients but may not correlate with progressive weakness.

B. FORMALIZE TREATMENT GOALS

After the diagnosis of PPS is established, a patient conference is a convenient way to formalize treatment goals and begin patient education. These areas should be addressed:

1. Lifestyle Modifications:

This item is the "sine qua non" of all attempts at successful management of PPS. At the time of formal diagnosis, patients are often desperate, yet imbued with a belief in their own ability to overcome their disability through the "no pain, no gain" approach. This approach may have served them very well after their acute attack of polio many years ago but is now actually self destructive.

Persistence in this approach of "over-coming" illness has led to a spiral of deteriorating function and frequently a parallel decline in self worth. Patients must understand the concept of "living with" PPS in order to lead the fullest life possible. An understanding of the need for lifestyle modification is rarely achieved at the first visit and is often best reintroduced by a knowledgeable Occu-pational or Physical Therapist and reinforced and monitored at subsequent physician office visits.

2. Increase Muscle Capacity:

a. Muscular capacity can be increased by achieving increased strength or endurance. Strength can be increased through isometric exercise. However, muscles must be carefully selected for isometric exercises. Some muscles will already be functioning at their maximum. Exercise may actually have a deleterious effect by forcing these muscles beyond their metabolic capacity and producing injury.

b. Endurance may be increased, susceptibility to fatigue decreased, and long term deterioration minimized through appropriate exercise supervised by a physical therapist experienced with post polio patients. Almost all patients have initial difficulties with exercise programs resulting from overdoing. They may also equate fatiguing daily activities (which challenge the weakest musculature and do not provide an effective aerobic training level) to exercise. This can be an instructive opportunity for the patient in understanding the "Lifestyle modification" and to experience its benefits. Goals in aerobic exercise are:

(1) Educate the patient to avoid potentially harmful exercise-induced fatigue. A reasonable approach would be to establish the level of peak performance by patient history. Then start at 50% of peak performance and slowly increase performance as tolerated.

(2) Select exercises which can create a training effect in the patient with weakened, atrophic musculature and overuse syndromes. Exercise intervals with intervening rests are necessary, just as is pacing of daily activities. A knowledgeable Physical Therapist can be crucial to this aspect of management.

c. Muscle capacity can also be increased by bracing, orthotics, or other aids which extend, amplify or substitute for muscles.

d. Pharmacologic treatment of fatigue: Some medications seem to raise the threshold for fatigue. These observations are, as yet, anecdotal and await confirmation from clinical trials.

(1) Amantadine: up to 100 mg BID as tolerated.

(2) Deprenyl: up to 5 mg BID as tolerated.

(3) Mestinon: up to 60 mg TID when careful monitoring is available.

Medications for the amelioration of fatigue must be understood as aids which can give a running start to the rehabilitation process. However, if they are perceived by the patient as a form of curative treatment, they will only forestall the day of reckoning.

3. Decrease Muscle Load To Less Than Muscle Capacity:

a. PACING of activity is the logical consequence of a successful LIFESTYLE MODIFICATION. Implementing of PACING requires that patients identify for each of the activities of daily living the length of time they may participate before experiencing fatigue. They must then break up their activities into smaller modules of time, each of which is of less duration than the time required to produce fatigue. A corollary concept to PACING is ENERGY BUDGETING which imagines that one has a fixed expenditure of energy for each day and that this sum should be "spent" on activities of the highest personal priority. (Exceeding this daily limit may be conceptualized as spending principle or acquiring debt but probably correlates to metabolic injury of the motor unit through overuse.)

b. Other means of decreasing muscle load are diet when overweight, use of orthotics to improve mechanical efficiency, use of wheelchairs or scooters to save energy expenditure, and treatment of chronic overuse syndromes.

4. Treat Specific Complications:

a. Attention to specific complications such as dysphagia, pulmonary dysfunction and sleep disturbances may require specific referrals. The goals of these referrals can be addressed with the patient at this first conference.

b. Functional consequences also result from overuse syndromes which can lead to joint deformity. Physiatry consultation can be helpful here and orthopedic intervention is occasionally required. Evaluate need for orthotic prescriptions (i.e., splints, braces, AFO's)

c. Somatization, depression, anxiety, and self worth problems may occur as capacity decreases. Referral for counseling should be considered (MSW, psychologist) or polio support group (see reference section).

d. Evaluate and/or modify work duties through referral to occupational therapist or vocational counselor.

C. PROGNOSIS

Patients often present during a period of decompensation. Decompensation may be caused by even slight embarrassment in strength due to inactivity or injury superimposed upon aging. It may also result from slight increase in muscular work resulting from weight gain or increase in activities. In either case, a spiral of deterioration may result from potential overuse injury to the motor unit and subsequent decrease in functional capacity can result. Patients may easily become fearful and depressed at this ominous decline in their previously stable, if compromised, neuromuscular status.

It is important to clarify for the patient the difference between deterioration in function and deterioration from disease progression. In fact, there is little evidence that any loss of function experienced by PPS patients is due to progression or recurrence of polio virus infection. If patients can understand that opposing forces of muscle strength versus muscle load are acting near a capacity threshold, they will be quicker to accept PACING concepts, to employ an appropriate exercise program, and to utilize other elements of rehabilitation. In most cases, this will allow the patient to return to or approach the previous functional baseline. It is not difficult for patients to then minimize deterioration in function over the years by:

1. Achieving an optimal balance between muscle strength and endurance (achieved and maintained by exercise) versus muscle burden (resulting from body weight, mechanical inefficiencies, and activity level).

2. Utilizing PACING and restriction of activities after the point of fatigue so that muscle work is kept within the limits of muscle capacity and decompensation does not occur.

3. Gradually decreasing total daily energy expenditure over the years much as a non PPS individual might do. This rarely results in much loss of individual activities or functions, only in the amount of each that is performed each day.

V. RESOURCES IN PATIENT MANAGE-MENT

The patient with PPS is best served by having a physician who has experience evaluating post polio symptoms, formalizing treatment goals, and making the appropriate referrals such as those listed below:

A. NEUROLOGY CONSULTATION

When the Diagnosis is in question.

B. PHYSIATRY (PHYSICAL MEDICINE AND REHABILITATION)

A Physiatrist is a physician with expertise in the orchestration of the rehabilitation process. Especially when disability is severe, complex, or when biomechanical problems are prominent, physiatry consultation can help with the initial planning and selection of specific exercise programs, physical therapy, orthotics, and adaptive equipment.

C. PHYSICAL THERAPY

A Physical Therapist who is experienced regarding PPS will be of tremendous value in introducing and customizing the lifestyle modifications and in introducing the useful concepts of pacing and energy budgeting. Physical Therapists can also screen for inefficiency in movement resulting from deformity or weakness, assist in establishing your patient on a safe exercise program, and monitor for the almost inevitable initial over indulgence in that program.

D. OCCUPATIONAL THERAPY

Occupational Therapists are trained to assess the home environment and the patient's daily activities in order to restructure tasks, introduce mechanical aids like grab bars, and provide devices such as sock lifters which make possible physical activities otherwise compromised by disability. Instruction in PACING of routine daily activities and associated lifestyle modification can also be provided by an Occupational Therapist.

E. SPEECH PATHOLOGY

A speech pathologist can help in the evaluation and treatment of swallowing and speech problems.

F. PULMONOLOGY

A Pulmonologist can evaluate and manage respiratory dysfunction and sleep dysfunction.

G. PSYCHOLOGY

A psychologist or MSW can evaluate and counsel regarding reactive depression, coping strategies, pain management and life style adjustment. This is especially important to help the post-polio survivor deal with the "reemergence" of a neuromuscular disorder they thought had been previously conquered.

H. SUPPORT GROUPS

Local education/support groups meet on a monthly basis in various locales, offering education, support, and social opportunities for polio survivors and their families.

I. OTHER

Orthopedics, nutrition, and social work referrals for evaluation will occasionally be useful in specific circumstances.

VI. BIBLIOGRAPHY

Dalakas, et al. A Long Term Followup Study of Patients with Post Poliomyelitis Neuromuscular Symptoms. NEJM 1986; 314:949-63.

Klingman, et al. Functional Recovery: A Major Risk Factor for the Development of PPMA. Arch Neurol '88; 45:645- 7.

Pezeshkpour & Dalakas. Long Term Changes in the Spinal Cords of Patients with Old Polio. Arch Neurol '88; 45:505-8.

Sonies and Dalakas. Dysphagia in Patients with the Post-Polio Syndrome. NEJM 1991; 324:1162-7.

Steljes, et al. Sleep in Postpolio Syndrome. Chest 1990; 98:133-139.

Jones, et al. Cardiorespiratory Responses to Aerobic Training by Patients with Polio Sequelae. JAMA '89; 261:3255- 8.

Agre, et al. Late Effects of Polio: Critical Review of the Literature on NM Fxn. Arch Phys Med Rehab '91;72:923- 31.

Munsat, ed. Post-Polio Syndrome. Butterworth-Heinemann, 1990.

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 This too, was e-mailed to me by another one of our members.  Thanks, Caryle.

ISN'T THIS THE TRUTH??????
You may need to stop at the women's restroom . . . be prepared!

 

When you have to visit a public bathroom, you usually find a line of women, so you smile politely and take your place. Once it's your turn, you check for feet under the stall doors. Every stall is occupied.

 

Finally, a door opens and you dash in, nearly knocking down the woman leaving the stall.

 

You get in to find the door won't latch. It doesn't matter, the wait has been so long you are about to wet your pants! The dispenser for the modern 'seat covers' (invented by someone's Mom, no doubt) is handy, but empty. You would hang your purse on the door hook, if there was one, but there isn't - so you carefully, but quickly drape it around your neck, (Mom would turn over in her grave if you put it on the FLOOR!) yank down your pants, and assume 'The Stance.'

 

In this position your aging, toneless thigh muscles begin to shake. You'd love to sit down, but you certainly hadn't taken time to wipe the seat or lay toilet paper on it, so you hold 'The Stance.'

 

To take your mind off your trembling thighs, you reach for what you discover to be the empty toilet paper dispenser. In your mind, you can hear your mother's voice saying, 'Honey, if you had tried to clean the seat, you would have KNOWN there was no toilet paper!' Your thighs shake more.

 

You remember the tiny tissue that you blew your nose on yesterday - the one that's still in your purse. (Oh yeah, the purse around your neck, that now, you have to hold up trying not to strangle yourself at the same time). That would have to do. You crumple it in the puffiest way possible. It's still smaller than your thumbnail.

 

Someone pushes your door open because the latch doesn't work. The door hits your purse, which is hanging around your neck in front of your chest, and you and your purse topple backward against the tank of the toilet. 'Occupied!' you scream, as you reach for the door, dropping your precious, tiny, crumpled tissue in a puddle on the floor, lose your footing altogether, and slide down directly onto the TOILET SEAT. It is wet of course.


You bolt up, knowing all too well that it's too late. Your bare bottom has made contact with every imaginable germ and life form on the uncovered seat because YOU never laid down toilet paper - not that there was any, even if you had taken time to try. You know that your mother would be utterly appalled if she knew, because, you're certain her bare bottom never touched a public toilet seat because, frankly, dear, 'You just don't KNOW what kind of diseases you could get.'

 

By this time, the automatic sensor on the back of the toilet is so confused that it flushes, propelling a stream of water like a fire hose against the inside of the bowl that sprays a fine mist of water that covers your butt and runs down your legs and into your shoes. The flush somehow sucks everything down with such force that you grab onto the empty toilet paper dispenser for fear of being dragged in too.

 

At this point, you give up. You're soaked by the spewing water and the wet toilet seat.  You're exhausted. You try to wipe with a gum wrapper you found in your pocket and then slink out incon-spicuously to the sinks.

 

You can't figure out how to operate the faucets with the automatic sensors, so you wipe your hands with spit and a dry paper towel and walk past the line of women still waiting.

 

You are no longer able to smile politely to them. A kind soul at the very end of the line points out a piece of toilet paper trailing from your shoe. (Where was that when you NEEDED it??) You yank the paper from your shoe, plunk it in the woman's hand and tell her warmly, 'Here, you just might need this.'

 

As you exit, you spot your hubby, who has long since entered, used, and left the men's restroom. Annoyed, he asks, 'What took you so long, and why is your purse hanging around your neck?'

 

This is dedicated to women everywhere who deal with a public restrooms (rest??? you've GOT to be kidding!!). It finally explains to the men what really does take us so long. It also answers their other commonly asked questions about why women go to the restroom in pairs. It's so the other gal can hold the door, hang onto your purse and hand you Kleenex under the door!

 

This HAD to be written by a woman! No one else could describe it so accurately!

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The following is reprinted from the EatSmart column by Jean Carper in the Daytona Beach News Journal.

6 Super-Healthy Snacks

          Eating the wrong kind of snacks is a major cause of obesity in children and adults.  My favorite good ones:

Popcorn:  It’s whole grain, fiber rich and low glycemic (less likely to spike blood sugar and cause hunger and weight gain).  Whole grains help fight heart disease, diabetes and cancer.  When air-popped, three cups of popcorn has only 93 calories.

Dark Chocolate:  It’s rich in antioxidants, can lower blood pressure and might help protect your heart.  Surprise:  It does not spike blood sugar.  My choice – three pieces of Dove dark chocolate (about an ounce has 126 calories).

Prunes:  Sugary, yes, but low among dried fruits in boosting blood sugar (at half the rate of raisins, for example).  New evidence suggests that prunes might help fight colon cancer.  Three prunes have 69 calories.

Hard-Boiled Egg:  A nutritional bargain at 80 calories each, eggs are packed with filling protein and are rich in choline for optimal brain functioning.

Almonds:  A handful with antioxidant-rich skins is filling and rich in fiber and protein.  Almonds are good for cholesterol and might cut risk of lung cancer in smokers and heart disease.

Peanut Butter:  High in fat, yes, but studies show that snacking on peanuts and peanut butter helps to suppress appetite.  I like a couple of tablespoons on an apple.

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The following was e-mailed to me by one of our members, Marion Schoeller.  Thanks, Marion

THIS IS HAPPENING RIGHT HERE IN OUR  OWN COUNTRY!

We Must Stop This Immediately!


Have you noticed that stairs are getting steeper.  Groceries are heavier .  And, everything is farther away.  Yesterday I walked to the corner and I was dumbfounded to discover how long    our street had become! 

And, you know, people are less considerate now, especially the young ones. They speak in whispers all the time!  If you ask them to speak up they just keep repeating themselves, endlessly mouthing the same silent message until they're red in the face!  What do they think I am, a lip reader?

I also think they are much younger than I was at the same age.  On the other hand, people my own age are so much older than I am.  I ran into an old friend the other day and she has aged so much that she didn't even recognize me! 

I got to thinking about the poor dear while I was combing my hair this morning, and in doing so, I glanced at my own reflection. Well, REALLY NOW – even mirrors are not made the way they used to be! 

Another thing, everyone drives so fast these days!  You're risking life and limb if you happen to pull onto the freeway in front of them.  All I can say is, their brakes must wear out awfully fast, the way I see them screech and swerve in my rear view mirror.

Clothing manufacturers are less civilized these days.  Why else would they suddenly start labeling a size 10 or 12 dress as 18 or 20?  Do they think no one notices? The people who make bathroom scales are pulling the same prank.  Do they think I actually 'believe' the number I see on that dial?  HA!  I would never let myself weigh that much!  Just who do these people think they're fooling? 

I'd like to call up someone in authority to report what's going on--but the telephone company is in on the conspiracy too: they've printed the phone books in such small  type that no one could ever find a number in there! 

All I can do is pass along this warning: 

WE ARE UNDER ATTACK!

Unless something drastic happens, pretty soon everyone will have to suffer these awful indignities.

PS: I am sending this to you in a larger font size, because something has happened to my computer's fonts – they are smaller than they once were.

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Reprinted from San Joaquin CFIDS/ME/FMS Support Group, August, September 2008 newsletter.

Various Types of Pain Defined

Pain:

The International Association for the Study of Pain describes pain as, “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”.  Pain is a subjec-tive condition which includes personal experiences and emotions.  Therefore, no one patient with pain can be treated with exactly the same methods or medications as another patient.

 

Acute Pain:   This usually has a sudden onset and a foreseeable end.  It is most often associated with trauma or acute disease such as a broken limb or, for example, appendicitis.

 

Chronic Pain:  This is usually described as pain which has lasted for 3 or more months.  However, it also applies to pain which has lasted longer than the expected normal healing time.

 

Pain terminologies and definitions that you may have read about or heard from your doctor are listed below.

 

Allodynia:  Pain caused by a stimulus which does not normally provoke pain.  Eg. Lightly touching uninjured skin causing pain.

 

Analgesia:  Absence of pain in response to stimulation which would normally be painful.  Eg – Not feeling a pin prick to the skin.

 

Dysaesthesia:   An unpleasant abnormal sensation, whether spontaneous or evoked.

 

Hyperaesthesia:  An increased sensitivity to stimulation.  Eg – A light touch is per-ceived as strong.

 

Hyperalgesia:  An increased response to a stimulus which is normally painful.  Eg – A pin prick is felt more painful than is normal.

 

Hyperpathia:  A painful syndrome characterized by an abnormally painful reaction to a stimulus, especially a repetitive stimulus, as well as an increased threshold.

 

Hypoalgesia:  Reduced feeling of pain to normally painful stimulus.

 

Hypoaesthesia:  Decreased sensitivity to stimulation, excluding the special senses.

 

Causalgia:  A syndrome of sustained burning pain, allodynia and hyperpathia after traumatic nerve lesion, often combined with vasomotor dysfunction.

 

Central Pain:  Pain initiated or caused by a primary lesion or dysfunction in the central nervous system.  (Brain and spinal cord).

 

Neuralgia:  Pain in the distribution of a nerve or nerves.

 

Neuritis:  Inflammation of a nerve or nerves.

 

Neuropathic pain:  Pain initiated or caused by a primary lesion or dysfunction in the nervous system.

 

Neuropathy:  A disturbance of function or pathological change in a nerve.  Mononeuropathy = in one nerve.  Mono-neuropathy Multiplex = in several nerves.  Polyneuropathy = diffuse and bilateral.

 

Complex Regional Pain Syndrome I:  CPRS I was formerly known as reflex sympathetic dystrophy, it consists of continuous pain (allodynia or hyper-algesia) in part of an extremity after a trauma.  However the pain does not correspond to the distribution of a single peripheral nerve.  The pain is worse with movement and associated with sympathetic hyperactivity.

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Balance of this article in next newsletter.

 

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Another e-mail to me by one of our members, Barbara Kidd – Thanks, Barbara…  If you agree with it, please send it on to those who you believe are “Keepers.”                               

A Keeper

Their marriage was good, their dreams focused. Their best friends lived barely a wave away.  I can see them now, Dad in trousers, work shirt and a hat; and Mom in a house dress, lawn mower in one hand, and dish-towel in the other.  It was the time for fixing things: a curtain rod, the kitchen radio, screen door, the oven door, the hem in a dress. Things we keep.


It was a way of life, and sometimes it made me crazy.  All that re-fixing, re-heating leftovers, renewing; I wanted just once to be wasteful.  Waste meant affluence. Throwing things away meant you knew there'd always be more.


But when my mother died, and I was standing in that clear morning light in the warmth of the hospital room, I was struck with the pain of learning that sometimes there isn't any more.

 

Sometimes, what we care about most gets all used up and goes away... never to return. Sooo, while we have it, it's best we love it... And care for it... And fix it when it's broken... And heal it when it's sick.

 

This is true: For marriage.... And old cars.... And children with bad report cards. Dogs and cats with bad hips...  And aging parents... And grandparents. We keep them because they are worth it...  because we are worth it. Some things we keep, like a best friend that moved away or a classmate we grew up with.
There are just some things that make life important, like people we know who are special.... And so, we keep them close!


I received this from someone who thinks I am a 'keeper,' so I've sent it to the people I think of in the same way...  Now it's your turn to send this to those people that are 'keepers' in your life.  Good friends are like stars... You don't always see them, but you know they are always there!

 

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CALENDAR WATCH

 

January 18, 2009 – Our very own 1 day seminar with Dr. Mary Ann Keenan, head of Univ of PA Orthopedic Surgery Dept, will be talking on surgery and bracing.  Also, Michael Kossove, a Professor of Microbiology at Touro College in NY, will give a talk on Polio 101.  Seminar will be held at the Hampton Inn, on Intl Speedway Blvd, Daytona Beach, Registration and Lunch $20.  A block of rooms have been held at $99. per night.  See Registration Form enclosed for more info.

 

April 23 - 25, 2009 – Post-Polio Health International’s 10th International Confer-ence, Living with Polio in the 21st Century, will be hosted by the Roosevelt Warm Springs Institute for Rehabilitation in Warm Springs, GA.  Warm Springs is located 70 miles southwest of Atlanta on 940 acres.  Program and Registration Form now at www.post-polio.org or click on Complete Program (14 pages total).  For those without a computer and wanting more info, please give Barbara a call – 386-676-2435.

 

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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 ECLIPSE TRAIL - ORMOND BEACH, FL 32174-4936

386  676-2435            e-mail:- bgold@iag.net

 

SEMINAR MEETING FORM

 

DATE:                Sunday, January 18th, 2009

TIME:                 10:00 AM - Registration  --  5:00 PM

PLACE:              Daytona Beach Hampton Inn

                                      1715 W International Speedway

                                       Daytona Beach, FL  32114

                                      386-257-4030

 

SPEAKERS:      MICHAEL KOSSOVE, Professor of Microbiology at Touro

         College, NY, will talk about Polio 101.

 

         DR. MARY ANN KEENAN, Chief Neuro-Orthopedic Department

of University of PA Hospital, Philadelphia, PA.

                                      Dr. Keenan will be speaking on surgery and bracing.

 

EARLY REGISTRATION:  $20.00 includes meeting material and lunch.

LATE REGISTRATION:     $25.00

 

For Early Registration please send in by December 15, 2008.

 

Please feel free to make copies of this form to give to others.

Any questions, call Barbara at 386-676-2435.

 

==============================

 

The Hampton Inn, 386-257-4030, has put aside a block of 8 handicapped rooms for us, in addition to 10 non-handicap rooms at the special rate of $99.00 per night (that includes their Continental Breakfast).  When calling to reserve a room, make sure to tell them that you will be attending the Post-Polio Conference so that you will get the special rate.

 

 

This Hampton Inn is right outside of the Daytona Beach Airport for those that may be flying in, and approximately 5 miles east of Exit 261 of I-95.  It is also just across the road from Volusia Mall (Macy’s, Dillard’s, Sears and J.C. Penney), and next door to the Olive Garden.

 

 In order to make it easy for you to choose your lunch, here is a description of the various choices:-

 

Chicken Cordon Bleu:-  Grilled chicken breast with baked ham and melted Swiss

              cheese.  Served open face with lettuce, tomato, and pickle spear.

 

Mediterranean Wrap:-    Vegetarian with Hummus or Albacore Tuna with feta

              cheese, lettuce, chopped tomatoes, Greek olives and roasted peppers.

              With a light lemon yogurt and cucumber dressing served on the side.

 

Chicken Ranch Salad:-   Grilled chicken breast over garden greens with crispy

              bacon, shredded Monterrey Jack cheese, hard boiled eggs, tomato

              wedges and cucumbers, served with Ranch dressing.

 

Chef Salad:-   Strips of tender turkey breast, baked ham, Swiss and cheddar

              cheese, garnished with carrot strips, ripe tomatoes and hard boiled

              eggs.  Served over fresh greens with our own House Vinaigrette, Ranch

              or Bleu Cheese.

 

 

 

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January 18, 2009 Seminar Registration

 

Name: _______________________________  Phone No.: _________________

 

Address: __________________________________________________________

 

Number of People Attending: ______            Number in Wheelchair(s):- _______

 

Lunch Choice:  Chicken Cordon Bleu ___    Mediterranean Wrap ___

                         Chicken Ranch Salad ___   Chef Salad ___

 

Please make check payable to FL East Coast PPSG and send to:

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail  -  Ormond Beach, FL  32174

11/2008

 

 

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                               FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP

12  Eclipse  Trail  /  Ormond  BeachFL  32174

 386-676-2435  /  e-mail  address:  bgold@iag.net

 

DATE:                Sunday, November 9th, 2008

TIME:                 1:00 – 4:00 PM

PLACE:              Red Lobster Restaurant

                                      International Speedway Boulevard

                                     Right off I-95 – Exit 261– Daytona Beach, FL

                                      (head EAST for about 1/4 mile)

  

 

PROGRAM:      Two therapists from Florida Hospital Pt. Orange Rehab Services

David Manestar, Manager and Kristen Hanak, certified

                   Lymphedema Therapist.

 

                                                                     

Cost of the Luncheon is $13.00 all inclusive.   As usual we will have a choice of several different menu items.

 

Please send in your reservation tear sheet and check

no later than November 5th, 2008

 

 

Any questions call Barbara at 386-676-2435.

 

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R E S E R V A T I O N   F O R M

November 9th, 2008 Luncheon Meeting

  

Name:- _______________________________  Phone No.:- _________________

 

Number of People Coming:- _________ Number in Wheelchair(s):-  ___________

 

Amount of Check Enclosed:-  ________________  @ $10.00 per person

 

Make check payable to and mail same to:

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail  --  Ormond Beach, FL  32174

11/2008

 

 

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The World Congress on Disabilities will be having a two day Expo in Jacksonville, FL on November 21-22, 2008, at the Prime F. Osborn III Convention Center.  They have many different topics, e.g. – Test Drive Products to Find Right Fit For You – Job Fair and Career Workshops – Assistive Technology Pavilion – Interactive Sports and Recreation Demonstrations – General Session.  Stem Cell and Regenerative Medicine Therapies for Treating Neurological Disorders in Children ==  Keynote speaker:  Lance Block, Chairman of the Governor’s Commission on Disabilities.

 

This sounds like a great opportunity to see what’s happening in some of the new technology today.  Unfortunately, I’ll be on my cruise and won’t be able to attend.  For further information you can go to their website:-                         www.wcdexpo.com

 

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DUES FOR 2008-  Please take a look at your mailing label  -  on it you’ll see the month and year we received your 2007 dues, i.e., 01/2007 means it was received in January 2007, so your 2008 dues was due in January 2008.  If your mailing label has the year first and then the month, i.e., 2007/01 it means that you indicated to us in January 2007 that you wanted to receive the newsletter but paid no dues.  That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked.

            Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (25) newsletters that we send out.  We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 450 newsletters sent out within the United States.  We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters.  We receive as many dues checks from our out-of-state members as we do from our Florida members.  So, please check your mailing label and return the tear sheet if your date is due.  We really need your support now more than ever.  Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to England, France, Germany, Israel, Panama, Portugal, Lebanon, South Africa, Sweden, Taiwan and Wales.

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WHEN YOU MOVE  PLEASE be sure to send us your new address.  Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it.  SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address.

 

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2008 DUES/MAILING LIST

____ Dues Enclosed                                                            ____ Keep me on mailing list

 

If sending dues, please make Check ($5.00) Payable to and Mail to:-

 

FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP

12  Eclipse Trail,  Ormond  BeachFL  32174-4936

 

NAME:- _____________________________________________________________

 

ADDRESS:- _________________________________________________________

 

E-MAIL ADDRESS:-__________________________ FAX #:- ___________________

 

TELEPHONE NO:- Home _______________________ Office ___________________

 

Date of Birth:-_________________   Wedding  Anniversary:- _____________________

 

Support Group I belong to:- ______________________________________________

 

 

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