FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

CONTENTS

From Barbara

What Internists Need to Know…

Polio Particles

Arthur C. Clarke

Align Your Mind

Girls in My Circle

DOVE Sayings

Something Funny

Focus on Eyes

Tidbits of Information

Glossary of Terms

New Olympic Event

Cut Grocery Costs

**********************************************

FROM BARBARA

Well, believe it or not, we are going into our 15th year!! This support group was started in June 1993 by Linda Richards and myself. It came about when I received a call from Linda that the leader of the North Central Florida PPSG, Carolyn Raville, suggested she call as I had just moved down to Florida and had been the leader of a PPSG on Long Island. Linda and I met and after putting blurbs into the local newspapers an on radio and TV public service announcements had our first meeting at the Library for the Blind in Daytona Beach – that first meeting had just about 100 attending. Since then there have probably been somewhere between 1,000 – 1,500 polio survivors coming through – – some just interested in getting some information and going on, others staying for awhile, coming to and taking part in our meetings, and some still members after 15 years.

We started a post-polio clinic at Halifax Medical Center back in 1994 and they have been working with us since then.

We’ve had two “international” conferences here in Daytona Beach – one in 1996 with two polio survivors from Australia attending; and another in 2000 with one from Wales, and another from Great Britain attending.

We have members around the world; we network with support groups in Canada, Australia and New Zealand, as well as those here in the States. We have a member who translates our newsletter and sends it to Japan.

We’re interested in seeing how many of our original members are still with us. If you joined us in 1993 please, let us know how you are doing and what’s been happening to you.

PLEASE note the date change for November – I’m going on a Holland America cruise from November 16 – 23, so have made the meeting for November 9th.

**********************************************

My apologies – found this article and, honestly, don’t remember where and/or when I received it. Felt it was a good article though, and, therefore, decided to put it into this newsletter. I believe it Dr. Julie Silver is the author, but am not sure.

WHAT INTERNISTS NEED TO KNOW ABOUT POST-POLIO SYNDROME

JULIE K. SILVER, MD - Medical Director, SpauldingFramingham Out-patient Center, Framingham, Mass; Assistant professor, Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, Mass

DOROTHY D. AIELLO, PT -- Senior physical therapist, Spaulding-Framingham Outpatient Center, Framingham, Mass

ABSTRACT
Decades after recovery from polio, many patients develop new muscle weakness and other symptoms that can lead to increased debility. Treatment is aimed at the most prominent symptoms. Medica-tions may help, as well as physical therapy and a carefully paced exercise program. Screening for osteopenia and osteoporosis is recommended.

KEY POINTS

Postpolio syndrome affects an estimated 60% of "paralytic" polio survivors, plus unknown numbers of patients who had subclinical polio. Postpolio syndrome is a diagnosis of exclusion. Symptoms are related to new muscle weakness and may include muscle atrophy, myalgias, fatigue, and problems with swallowing and breathing. No drugs specifically address postpolio syndrome. Pyridostigmine has had mixed results for treating weakness and fatigue, as have methylphenidate and bromocriptine. Modafinil may be helpful for fatigue. Nonsteroidal anti-inflammatory drugs are used to treat pain. Rehabilitation professionals who have expertise in treating polio survivors can be valuable resources in preserving function and preventing deconditioning.

WHEN A POLIO SURVIVOR presents with nonspecific symptoms such as weakness and fatigue, how do you determine whether they are due to postpolio syndrome or to an unrelated problem? Postpolio syndrome is a neurologic disorder defined by a collection of symptoms occurring decades after a patient has recovered from an initial infection with the poliovirus. New muscle weakness is the hallmark, but breathing or swallowing problems, fatigue, myalgias, and cold intolerance are frequently also present.

In this review, we discuss the criteria for diagnosing postpolio syndrome, guide-lines for ruling out other conditions, and treatment strategies to optimize function in postpolio patients.

1 MILLION POLIO SURVIVORS

There are probably at least 1 million polio survivors in the United States, though not all have residual effects. Worldwide, there are millions more. Polio eradication is ongoing, and it is hoped that new cases will be completely eliminated over the next few years.

ACUTE POLIOMYELITIS MAY BE SUBCLINICAL

Historically and even recently, acute poliomyelitis has been thought of as having distinct presentations:

Abortive polio, which presents as a minor illness of fever, malaise, sore throat, anorexia, myalgias, and head-ache.

Nonparalytic polio, which presents as aseptic meningitis

Paralytic polio, which presents as severe back, neck, and muscle pain, with the rapid or gradual development of paralysis.¹In fact, however, the acute viral illness is probably more of a spectrum, in which there are subclinical cases of paralysis that in the past would have been classified as nonparalytic.² This concept is important because although most patients who are at risk for postpolio syndrome had well-recognized "paralytic" polio, others who were never diagnosed with polio or were thought to have had "nonparalytic" polio may also be at risk for postpolio syndrome.
An estimated 60% of "paralytic" polio survivors are affected by postpolio syndrome.³ The prevalence in those who had sub clinical illness is unknown.

WHAT CAUSES THE LATE SYMPTOMS

Postpolio syndrome occurs in polio survivors who had injury to their central nervous system, generally the anterior horn cells in the spinal cord, during the initial infection. The cause of the late symptoms is not well understood but is believed to involve attrition of motor neurons during aging.⁴ Other theories abound, however, and the etiology is likely multifactorial.

When motor neurons are lost in acute polio, the surviving motor neurons sprout collateral fibers that reinnervate the enervated muscle fibers (FIGURE 1). The resulting motor units are larger than normal, and there are fewer of them than before. Therefore, the burden on each of these remaining motor neurons is higher than under normal conditions. With age, we all gradually lose some motor neurons.⁵Polio survivors may be more affected by this loss of motor neurons because they have fewer to begin with. Another theory is that insufficient levels of acetylcholine are released at the neuro-muscular junction, resulting in diminished muscle contraction.⁵ Maselli et al⁶ noted reduced amplitudes of miniature end plate potentials and structural abnormalities of the neuromuscular junction, such as reduced diameter of nerve terminals, but these changes were not noted in all postpolio syndrome patients. Some have found ongoing immune activation and defective viral particles in the spinal fluid,⁷ although the significance of these is unclear. General fatigue may also have a central cause — an abnormality in the reticular activating system in the brain that occurred during the acute polio episode.⁵, ⁷

HALLMARK IS NEW WEAKNESS

The hallmark symptom of postpolio syndrome is new weakness, which may occur in muscles known to be previously affected or in muscles that were thought to be normal.³ The patient may report difficulty with walking or lifting items, falls, needing more assistance with transfers (eg, moving from the bed or commode to the wheelchair), and being less able to do functional tasks. The weakness charac-teristically worsens with increased activity and is most pronounced at the end of the day. Symptoms may also include dyspnea on exertion due to respiratory muscle weakness, other breathing or swallowing problems, pain (myalgias), cold intolerance, and unaccustomed fatigue. New muscle atrophy may also be present.⁸ Pain can be due to factors related to the history of polio, but which are not classifiable as postpolio syndrome. For example, a patient may present with left leg paralysis due to the initial polio and report increased limping and pain in the right hip (ie, the "good" leg). The new symptoms may be due to osteoarthritis of the hip, which is more likely to occur in a polio survivor without good muscular support around the hip and after years of additional wear and tear. Postpolio muscle pain classically occurs in the muscles rather than in the joints. The pain is often described as aching, cramping, burning, or a "tired" feeling. It frequently occurs at night or after the person has been very active.⁸ Numbness or pares-thesias are not typical symptoms of postpolio syndrome.

DIAGNOSING POSTPOLIO SYNDROME

Postpolio syndrome is a diagnosis of exclusion and should fit specific criteria (TABLE 1). Screening for other possible diagnoses is essential.

Table 1 Criteria for diagnosing postpolio syndrome

*History of old polio, preferably with recent electrodiagnostic findings consistent with remote anterior horn cell disease.

* A period of at least partial recovery from the initial illness and then a long stable period (10–20 years or more)

*New symptoms consistent with postpolio syndrome that are not attributable to any other medical condition; these may include weakness, myalgias, fatigue, swallowing problems, breathing problems, cold intolerance, and muscle atrophy.

Evaluating weakness

In postpolio syndrome, weakness pro-gresses gradually over months to years. This muscle fatigue is associated with overuse and worsens with increased activity. Rapid loss of strength over weeks to months should suggest another diagnosis (TABLE 2).

TABLE 2

Not available for online publication. See print version of the Cleveland Clinic Journal of Medicine

Evaluating fatigue

Generalized fatigue has many possible causes (TABLE 3) that should be ruled out with screening tests (TABLE 4).

TABLE 3

Not available for online publication. See print version of the Cleveland Clinic Journal of Medicine

TABLE 4

Not available for online publication. See print version of the Cleveland Clinic Journal of Medicine.

Since sleep disorders are common in polio survivors⁹,¹⁰ referral to a sleep clinic should be considered. In our practice, we often see patients who feel tired but say they have no trouble sleeping. However, many of them test positive for sleep disturbances, including obstructive sleep apnea (characterized by morning fatigue, snoring, and difficulty sleeping supine) and random limb movement disorder (charac-terized by morning muscle pain and overall fatigue).
Depression, thyroid dysfunction, or both may be present as coexisting conditions and also contribute to fatigue.

Evaluating pain

Pain related to postpolio syndrome is due to muscle overuse or biomechanical problems, or both. Treatment of coexisting orthopedic problems is vital to alleviate pain and improve function (TABLE 5).

TABLE 5

Not available for online publication. See print version of the Cleveland Clinic Journal of Medicine.

Evaluating respiratory problems

Difficulty breathing can be life-threatening. Conditions other than postpolio syndrome should be considered (TABLE 6).

TABLE 6 Differential diagnosis for respiratory problems

* Cardiac disease

* Chronic obstructive pulmonary disease

* Asthma

* Anemia

* Deconditioning

Polio survivors with a weakened diaphragm breathe shallowly and exper-ience dyspnea on exertion. New respire-tory muscle weakness causes restrictive lung disease, which is associated with chronic alveolar hypoventilation. In obese patients, excess weight over the thoracic cage and abdominal cavity worsens the condition.
Pulmonary function tests can be used for diagnosis and to determine if supplemental oxygen is necessary. Arterial blood gas measurements and pulse oximetry can also help with the diagnosis. Referral to a pulmonologist is indicated if a patient requires a respirator. All polio survivors who undergo surgery need special pre-cautions beforehand to avoid potential problems with respiratory sequelae and ventilator weaning. These include pulmon-ary function testing and consideration of alternatives to general anesthesia when-ever possible. Even well-appearing polio survivors can have significant restrictive lung disease due to paralysis of respiratory muscles.

Evaluating swallowing difficulties

Swallowing problems can also be life-threatening. In view of the risk of choking, family members should be educated in the Heimlich maneuver. Patients presenting with difficulty swallowing may require specific testing, such as a modified barium swallow, or referral to a specialist for further evaluation and intervention.

TREATMENT RECOMMENDATIONS

Treatment of postpolio syndrome should focus on the most prominent symptoms and can include:

• Medications

• Supplemental oxygen

• Physical, occupational, and speech therapy

• An exercise program to preserve mobility and prevent deconditioning.

Medications
Drug therapy for postpolio syndrome has been generally disappointing. No medica-tions specifically address postpolio syndrome. That said, many medications may play an important role in alleviating symptoms. For weakness and fatigue, pyridostigmine (Mestinon), usually given as an oral dose of 60 mg three times a day, has had somewhat mixed results. One study of postpolio syndrome patients found that it improved upper extremity subjective strength and fatigue.¹¹ Another found no significant difference between patients taking pyridostigmine and placebo, except that very weak muscles (25% or less of baseline) were minimally stronger with pyridostigmine.¹²Methyl-phenidate hydrochloride (Ritalin) and bromocriptine (Parlodel) have been tried for postpolio patients with chronic debili-tating fatigue, also with mixed results.⁷,¹³

Modafinil (Provigil) has been used to treat Fatigue¹⁴,¹⁵ and may be useful in polio survivors. The starting dose is usually 200 mg orally in the morning and may be increased to 400 mg each morning or given in divided doses. Side effects can be a problem with these medications. Pyridostigmine’s side effects are generally dose-related and can be recalled by the acronym SLUD (increased salivation, lacrimation, urination, and defecation). Respiratory secretions may also be increased with this medication. Modafinil’s side effects include headache, nausea, and nervousness, and modafinil may increase circulating levels of diazepam, phenytoin, and propranolol. Respiratory problems often improve with continuous positive airway pressure or bi-level positive airway pressure at night. Oxygen can exacerbate chronic alveolar hypo-ventilation and should be used with caution. A physical therapist or occupational therapist skilled in treating respiratory disorders may be helpful in teaching the patient breathing and postural techniques and help the patient conserve energy to decrease respiratory demands. Pain can be treated with traditional no steroidal anti-inflammatory drugs, cyclo-oxy-genase-² inhibitors (particularly in elderly patients or those with a history of gastrointestinal problems), and nonnarcotic analgesics. Tramadol (Ultram) may be helpful in some patients but should be avoided in those with a history of seizures. Other medi-cations typically used for chronic pain may also be tried, such as tricyclic anti-depressants and anticonvulsants. Tricyclic antidepressants have cholinergic side effects; the most serious is the possibility of acute urinary retention in men, especially if underlying prostate problems are present. Injections with local anes-thetics or corticosteroids or both may be effective for specific conditions that are often associated with postpolio syndrome, such as myofascial pain, trochanteric bursitis, carpal tunnel syndrome, lateral epicondylitis, or rotator cuff tendonitis.

Physical and occupational therapy

From a quality-of-life perspective, perhaps the most important thing a physician can do is to help patients preserve mobility and avoid falls and resultant injuries. Physical and occupational therapists can be extremely helpful in treating patients with musculoskeletal pain, weakness, decreased endurance, impaired balance, and difficulty walking. They can recom-mend appropriate adaptive equipment, such as shower grab bars, a raised toilet seat, sturdy and lightweight braces, assistive devices such as canes and crutches, and footwear modifications such as heel lifts and lateral wedges. Therapists can also advise patients on how to pace themselves, which is especially important for polio survivors. Home safety, work simplification, falls prevention, and proper exercise are also strategies that can enhance function.

Exercise
One of the most common questions polio survivors ask is, "How should I exercise?" This has been much debated. General guidelines for patients:

• Maintain an active exercise program to avoid deconditioning and cardiovascular sequelae

• Avoid overly aggressive exercise (fatiguing)

• Resist the impulse to exercise through pain.

Muscle fibers of polio survivors have very limited endurance because of the loss of aerobic enzyme activity and greater reliance on anaerobic metabolic capacity.¹⁶ Cross-training programs, such as alternating cycling with swimming and walking, are a good way to involve different muscle groups, but such programs should be consistent in terms of repetitions, resistance, and time. For most people, using daily activities as a primary way to exercise is too erratic and may lead to overuse, fatigue, and further weakness.

Is a wheelchair needed?

For patients who are having difficulty with walking or who may be at risk for falls, a motorized wheelchair or scooter can be useful, either full-time or part-time. Such vehicles can improve functional mobility, decrease risk of falls, and help conserve energy. Manual wheelchairs have the advantage over motorized wheelchairs of being lighter and easily folded for transport. However, manual wheelchairs tend to promote overuse syndromes in the arms and are generally recommended only when another person will push the patient.

Ancillary health care

Referral to other appropriate health care providers can markedly improve the quality of life for polio survivors. For example, speech and language pathologists can be extremely helpful in teaching patients compensatory mechanisms for swallowing. Referral to a mental health counselor, with pharmacologic intervention if needed, should be considered for patients who are depressed or have other psychological sequelae.

AVOIDING COMPLICATIONS

Osteoporosis. Patients with significant paralysis often have associated loss of bone density. Recent studies indicate that male polio survivors are at risk for osteopenia and osteoporosis, and may be at higher risk for fracture.⁸,¹⁶,¹⁷ We recommend that all polio survivors be screened for bone density loss and be appropriately treated.

Falls. Polio survivors are also at greater risk of tripping and falling due to poor balance and weak arms or legs, and are less likely to be able to protect themselves as they fall.^18–21 Since the complications of a fall can be serious, interventions for fall prevention are crucial. Both physical and occupational therapists typically address fall prevention. Upper extremity injuries. Because polio survivors tend to overuse their arms, they are also at risk for upper extremity injuries, including carpal tunnel syndrome and ulnar neuropathy.⁸,²²^–24

REFERENCES
1. Cohen JI. Poliovirus. In: Fauci AS, Braunwald E, Isselbacher KJ, et al, editors. Harrison’s Principles of Internal Medicine. 14th ed. New York: McGraw-Hill, 1998:1120–1121.

2. Halstead LS, Silver JK. Nonparalytic polio and postpolio syndrome. Am J Phys Med Rehabil 2000; 79:13–18.

3. Gawne AC, Halstead LS. Post-polio syndrome: path physiology and clinical management. Crit Rev Phys Rehabil Med 1995; 7:147–188.

4. Dalakas MC. Pathogenetic mechanisms of post-polio syndrome: morphological, electrophysiological, virological, and immunological correlations. Ann NY Acad Sci 1995; 753:167–185.

5. Halstead LS. Managing Post-Polio: A Guide to Living Well with Post-polio Syndrome. Washington, DC: NRH Press, 1998.

6. Maselli RA, Wollmann R, Roos R. Function and ultra-structure of the neuromuscular junction in postpolio syndrome. Ann NY Acad Sci 1995; 753:129–137.
7. Dalakas MC. Pathogenetic mechanisms of post-polio syndrome: morphological, electrophyiological, virological, and immunological correlations. Ann NY Acad Sci 1995; 753:167–185.

8. Silver JK. Post-polio Syndrome: a Guide for Polio Survivors and their Families. New Haven: Yale University Press, 2001.

9. Bruno RL. Abnormal movements in sleep as post-polio sequelae. Am J Phys Med Rehabil 1998; 339–343.

10. Dean AC, Graham BA, Dalakas M, Sato S. Sleep apnea in patients with postpolio syndrome. Ann Neurol 1998; 43:661–664.

11. Seivert BP, Speier JL, Canine JK. Pyridostigmine effect on strength, endurance and fatigue in post-polio patients [abstract]. Arch Phys Med Rehabil 1994; 75:1049.

12. Trojan DA, Collet JP, Shapiro S, et al. A multi-center, randomized, double-blind trial of pyridostigmine in postpolio syndrome. Neurology 1999; 53:1225–1233.

13. Bruno RL, Zimmerman JR, Creange SJ, Lewis T, Molzen T, Frick NM. Bromocriptine in the Treatment of post-polio fatigue: a pilot study with implications for the path physiology of fatigue. Am J Phys Med Rehabil 1996; 75:340–347.

14. Kingshott RN, Vennelle M, Coleman EL, Engleman HM, Mackay TW, Douglas NJ. Randomized, double-blind, placebo-controlled crossover trial of modafinil in the treatment of residual excessive daytime sleepiness in the sleep apnea/hypopnea syndrome. Am J Respir Crit Care Med 2001; 163:918–923.

15. Mitler MM, Harsh J, Hiroshkowitz M, Guilleminault C. Long-term efficacy and safety of modafinil (PROVIGIL) for the treatment of excessive daytime sleepiness associated with narcolepsy. Sleep Med 2000; 1:231–243.

16. Silver JK, Aiello DD. Bone density and fracture risk in male polio survivors [abstract]. Arch Phys Med Rehabil 2001; 82:1329.

17. Silver JK, MacNeil JR, Aiello DD. Effect of Fosamax on bone density in a male polio survivor: a case report [abstract]. Arch Phys Med Rehabil 2001; 82:1329.

18. Silver JK, Aiello DD. Fall prevention strategies in a polio survivor: a case report [abstract]. Arch Phys Med Rehabil 2000; 81:1309.

19. Silver JK, Aiello DD. Polio survivors’ attitudes regarding falls [abstract]. Arch Phys Med Rehabil 2000; 81:1296.

20. Silver JK, Aiello DD. Risk of falls in polio survivors [abstract]. Arch Phys Med Rehabil 2000; 81:1272.

21. Silver JK, Aiello DD. Polio survivors: falls and subsequent injuries. Am J Phys Med Rehabil. In press 2002.

22. Veerendrakumar M, Taly AB, Nagaraja D. Ulnar nerve palsy due to axillary crutch. Neurol India 2001; 49:67–70.

23. Waring WP, Werner RA. Clinical management of carpal tunnel syndrome in patients with long term sequelae of poliomyelitis. J Hand Surg 1989; 14:865–869.
24. Slowman LS, Silver JK. Prevalence of median and ulnar neuropathy in post-polio patients [abstract]. Arch Phys Med Rehabil 2001; 82:1312–1313.

ADDRESS: Julie K. Silver, MD, Spaulding-Framingham Outpatient Center, 570 Worcester Road, Framingham, MA 01702; e-mail jksilver@bics.bwh.harvard.edu.

**********************************************

The following was e-mailed to us by Dr. Mary Westbrook. This is in the March 2008 issue of the Post-Polio Network (NSW) Australia, newsletter. Our thanks Dr. Westbrook.

POLIO PARTICLES

Disability in popular songs

A unique listing of songs performed or written by or about people with disabilities has been developed by Anthony Tusler on his website www.aboutdisability.com. In the Tuscaloosa News (7/10/07) Susan Swartz wrote about some of his collection. Remember the song ‘Save the last dance for m’, and how the man tells the woman to go ahead and dance as long as they leave together at the end of the night? ...It’s a romantic snapshot. She dances. He watches. And when the music’s over, they put their arms around each other and go home….The songwriter was Doc Pomus, a blues singer who had polio and used crutches and a wheelchair. His wife was a Broadway actress who liked going out on the town. Tulser, who’s been in a wheelchair since he was injured as a kid, considers the song real poetry. ‘He [Pomus] talks about something universal that men don’t usually voice. He discloses that he feels vulnerable. But the part that really gets me is how he says with complete certainty that he knows she’ll go home with him. I love his confidence’. Mention is also made of DuBose Heyward who had polio as a child and wrote Porgy, a novel about a disabled man which George Gershwin used as the basis for the opera Porgy and Bess.

Buying petrol in Delaware

Many of us face the hassles of having to drive miles to a service station which provides driveway service (and where petrol costs higher than at most service stations) or waiting until we have a friend with us in the car who can fill up. In Delaware it is law that all fuel retailers provide petrol for people with disabilities at the self-service rate. Service stations with only one worker who operates the pumps from a remote location are exempt from providing driveway service. A new law has been approved by the government which requires self-service stations to install at least one calling device that will allow disabled drivers to call for assistance. Some people say disabled drivers should just honk their horn but visits to a number of Delaware service stations showed that no one paid any attention to honks (from an article by J.L.Miller in The News Journal, 13/6/07).

Polio murder case update

Last issue we reported on the murder charge laid against American Dr Charles Mercer for murdering his wife in 1968. The death was blamed on polio despite the disease almost having been eliminated at that time and much evidence suggesting murder. However the judge trying the case has thrown it out of court ruling that the passage of almost four decades and the loss of files and evidence make it impossible to proceed. The County Prosecutor plans to challenge the ruling. (Free Press, Michigan, 6/8/07)

FECPPSG Editor’s Note:- Be interesting to see if they do open it up. Of course, post-polio was not even a twinkle in anyone’s eye back then.

Pregnancy outcomes after polio

When I was having my first child I asked the doctor if having polio could affect the pregnancy. Of course not, he replied but it seems that some of the problems I had are more frequent among mothers who had polio. ‘Pregnancy, delivery and perinatal outcomes in female survivors of polio’ has been published in the July issue of the Journal of the Neurological Sciences. Dr Gyri Veiby and colleagues examined the 2495 births by Norwegian polio survivors between 1967 and 1998 and compared them to the 1.9 million deliveries to non-polio mothers in the country. All Norwegian births since 1967 have been recorded in detail in the Medical Birth Registry. The researchers found that polio survivors had higher rates of pre-eclampsia, urinary tract infections and vaginal bleeding during pregnancy. Their deliveries were more likely to be complicated by obstruction during the birth process. Caesarean sections (both emergency and elective) were more common among polio mothers. The higher Caesarean rate is thought to be due to mechanical obstruction during labor. Bony deformities in the pelvis and spine and paralysed muscles responsible for expulsive efforts during the 2^nd stage of labor, can lead to operative delivery in polio patients. ..The increased rate also of emergency sections shows that the need for operative intervention was underestimated in these patients. Deliveries were also more likely to be induced in the polio group. Polio survivors’ babies were of lower birth-weight and the risk of death of the baby was greater. There were more presentation problems for polio mothers older than 34; mainly a higher proportion of breech deliveries. There was no difference in the length of pregnancy of the two groups of mothers. The authors argue that the research findings are relevant to the considerable number of female polio survivors of childbearing age in developing countries where information on the risks of complications in pregnancy when the mother has had polio is difficult to collect.

FECPPSG Editor’s Note:- I remember going to my orthopaedist back in 1956 when my husband and I were starting to think about having children and asking Dr. Koven, who was my polio doctor from when I was 2 years old, if I could have children – his answer to me was that “If you are able to conceive you may have a harder time carrying the baby.” Well, no problem in conceiving and the only difficult part was that my legs swelled up. About a month before my due date, my obstetrician took x-rays and told me that I might have to have a C-section as my pelvic area was narrow and, from the polio, it was tilted. Came time for delivery and, you guessed it – I had the C-section. Had two more with the delivery of my other two children. No problems have occurred with my pelvic area since then.

**********************************************

ARTHUR C. CLARKE

Science fiction author, Arthur C. Clarke died on March 18, 2008, in Sri Lanka, at 90 years of age. Among his most notable works is 2001: A Space Odyssey.

Mr. Clarke contracted polio in 1962. His apparent complete recovery allowed him to return to his favorite sport – table tennis. However, in 1984 he, like so many of us, developed post-polio syndrome, and due to progressive muscle weakness, extreme fatigue and breathing difficulties spent the last years of his life in a wheelchair.

**********************************************

Reprinted from one of the “Daily Mentor” e-mails sent each day by Lowell Merkin.

ALIGN YOUR MIND....
=================

YOU HAVE THE POWER TO CHOOSE.

While your character is formed by your circumstances, your own desires can do much to shape those circumstances.

The one thing over which you have absolute control is your own thoughts.

It is this that puts you in a position to control your own destiny.

Nature is at work around you.

Character and destiny are her handiwork.

She gives you love and hate, jealousy and reverence.

All that is yours is the power to choose which impulse you follow.

You can at any time decide to alter the course of your life.

No one can take that away from you.

You can do what you want to do.

You can be who you want to be.

All you have to do is decide on what you want.

*********

SOMETHING FUNNY

There's always a lot to be thankful for if you take time to look for it. For example, I am sitting here thinking how nice it is that wrinkles don't hurt.

When I'm feeling down, I like to whistle. It makes the neighbor's dog that barks all the time run to the end of his chain and gag himself.

If you can't be kind, at least have the decency to be vague.

A penny saved is a government oversight.

The older you get, the tougher it is to lose weight, because by then your body and your fat are really good friends.

The easiest way to find something lost around the house is to buy a replacement.

He who hesitates is probably right.

If you can smile when things go wrong, you have someone in mind to blame.

The sole purpose of a child's middle name is so he can tell when he's really in trouble.

Living on earth is expensive, but it does include a free trip around the sun.

Birthdays are good for you; the more you have, the longer you live.

How long a minute is depends on what side of the bathroom door you're on.

Ever notice that the people who are late are often much jollier than the people who have to wait for them.

Most of us go to our grave with our music still inside of us.

If Wal-Mart is lowering prices every day, how come nothing is free yet?

You may be only one person in the world, but you may also be the world to one person.

Don't cry because it's over: smile because it happened.

We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names, and all are different colors.......but they all have to learn to live in the same box.

A truly happy person is one who can enjoy the scenery on a detour.

Happiness comes through doors you didn't even know you left open.

Once over the hill, you pick up speed.

I love cooking with wine. Sometimes I even put it in the food.

If not for STRESS I'd have no energy at all.

Whatever hits the fan will not be evenly distributed.

I know God won't give me more than I can handle. I just wish He didn't trust me so much.

You don't stop laughing because you grow old. You grow old because you stop laughing.

Dogs have owners. Cats have staff.

We cannot change the direction of the wind... but we can adjust our sails.

**********************************************

The following was e-mailed to me by Lisa Haines, one of our members in Pennsylvania. Although it’s entitled “Girls in My Circle”, it could just as well have been “Boys in My Circle,”

GIRLS IN MY CIRCLE

When I was little, I used to believe in the concept of one best friend. And then I started to become a woman. And then I found out that if you allow your heart to open up, you will be shown the best in many friends.

Another friend is needed when you're going through things with your parents.

Another will sit beside you in the bleachers as you delight in your children and their activities.

Another when you want to shop, share, heal, hurt, joke, or just be.

One friend will say, "Let's cry together," another, "Let's fight together," another, "Let's walk away together."

One friend will meet your spiritual need, another your shoe fetish, another your love for movies, another will be with you in your season of confusion, another will be your clarifier, another the wind beneath your wings.

But whatever their assignment in your life, on whatever the occasion, on whatever the day, or wherever you need them to meet you with their gym shoes on and hair pulled back, or to hold you back from making a complete fool of yourself........

Those are your best friends.

It may all be wrapped up in one woman, but for many, it's wrapped up in several..... one from 6th grade, one from high school, some from the college years, a couple from old jobs.

On some days your mother. On some days your neighbor. On others, your sisters, cousins. And on some days, your daughters.

So whether they've been your friend for 20 minutes or 20 years, AND ONLY IF YOU'D LIKE TO, pass this on to the women who have been placed in your life to make a difference.

FECPPSG Editor’s Note:- I found this to be very true. I know that I still have a friend that I met in 3rd grade, another that I met my husband through 55 years ago, another that became the sister I never had when I moved to Long Island, and several “new” ones from my move to Ormond Beach. Of course, there are my many friends that I’ve met through the years who are also going through post-polio problems. Each and every one, whether a “girl” friend or a “boy” friend have made a difference in my life.

**********************************************

From Barbara –

Since they have started saying that dark chocolate was better for us than milk chocolate, I’ve taken to eating the little Dove chocolates – inside of these are some sayings that seem to make a lot of sense, soooooooo I decided to put a few of them into the newsletter. Let me know what you think…

DOVE sayings….

Laugh uncontrollably… it clears the mind.

Sometimes one smile means more than a dozen roses.

Listen to your heartbeat and dance.

Live your dreams.

Keep the promises you make to yourself.

There’s a time for compromise… it’s called “later”.

Smile. People will wonder what you’ve been up to.

Watch reruns– they replay your memories.

Laugh uncontrollably… it clears the mind.

Follow your instincts.

Sing along with the elevator music.

**********************************************

Another tidbit from the Daily Mentor e-mails….

SOMETHING FUNNY

*Academic Phrases and Meanings*

The following list of phrases and their definitions might help you understand the mysterious language of science and medicine. These special phrases are also applicable to anyone working on a Ph.D. dissertation or academic paper anywhere!

"It has long been known"... I didn't look up the original reference.

"A definite trend is evident"... These data are practically meaningless.

"While it has not been possible to provide definite answers to the questions"... An unsuccessful experiment, but I still hope to get it published.

"Three of the samples were chosen for detailed study"... The other results didn't make any sense.

"Typical results are shown"... This is the prettiest graph.

"These results will be in a subsequent report"... I might get around to this sometime, if pushed/funded.

"In my experience"... once

"In case after case"... twice

"In a series of cases"... thrice

"It is believed that"... I think.

"It is generally believed that"... A couple of others think so, too.

"Correct within an order of magnitude"... Wrong.

"According to statistical analysis"... Rumor has it.

"A statistically oriented projection of the significance of these findings"... A wild guess.

"A careful analysis of obtainable data"... Three pages of notes were obliterated when I knocked over a glass of pop.

"It is clear that much additional work will be required before a complete under-standing of this phenomenon occurs"... I don't understand it.

"After additional study by my colleagues"... They don't understand it either.

"Thanks are due to Joe Blotz for assistance with the experiment and to Cindy Adams for valuable discussions"... Mr. Blotz did the work and Ms. Adams explained to me what it meant.

"A highly significant area for exploratory study"... A totally useless topic selected by my committee.

"It is hoped that this study will stimulate further investigation in this field"... I quit.

**********************************************

Reprinted from USA Weekend’s HealthSmart column by Dr. Tedd Mitchell, May 4-6, 2007

FOCUS ON EYES

In the summertime, protect your peepers as much as you do your skin.

With summer just around the corner, we’re spending more time outside. Gardening, hiking, bike-riding and water sports all keep us active and allow us to interact with nature. Most of us understand the need to protect our skin from the harmful effects of sun, wind and chemicals (in pools), which dry out and damage the skin. But these elements also can hurt your eyes. And some other summer activities, like cutting the grass, ball sports and paintball, can involve flying objects.

Let’s consider some of the risks:

· Sunlight. Ultraviolet radiation from the sun (in the form of UVA and UVB rays) damages not only the skin but also structures in the eyes. Wearing sunglasses that provide both UVA and UVB protection helps to limit the damage. Many places sell them, including stores specializing in sunglasses, and optical stores.

· Wind. Not only does the wind carry dust particles and other objects that can scratch your cornea, but it also depletes the eyes of tears, the natural film that helps to protect and coat the eyeball. If you live in an area of low humidity and high wind, or if you plan to travel to such an area, keep handy lubricating eye drops (available at a local pharmacy). Of course, there are some people who have chronically dry eyes and, for them, over-the-counter remedies may not suffice. Fortunately, there are prescription medicines and procedures that they can discuss with their eye doctor that will help them out.

· Water. Too often, people spend too much time opening their eye under-water in pools. The same chemicals that help to keep the water clean can b very damaging to the eyes. So, invest in a face mask or pool goggles. That way, you can swim to your heart’s content without worrying about your peepers.

· Projectiles. High-speed objects can be flung accidentally when you’re mowing the lawn. And high-speed projectiles are launched quite purposefully during baseball, softball and paintball games. Either way, everyone participating in such activities must protect their eyes. Although it may seem inconvenient, wearing appropriate eye protection during these activities is an inexpensive investment in your eye health. Most sporting goods stores sell protective eyewear that is tailored to various sporting activities.

FECPPSG Editor’s Note:- I know that we don’t participate in most of these sports (if any – it’s probably the pool), however, the majority of us have children or grandchildren who do and we go to watch them. Also, even if we’re just sitting outside reading a book, playing cards with friends or some other activity we’re involved in, we need to take care of our eyes too.

**********************************************

Reprinted from Volusia County, Council on Aging newsletter, April 2008

Tidbits of Information

Keep your identity safe from the latest internet scams!

Crooks are always looking for new ways to steal your identity online. Last year, they tricked hundreds of thousands of us into sharing our personal information, netting them $1.1billion! Protect your identity by watching for the latest scams:

► If Uncle Sam wants you… ignore him! Criminals send emails pretending to be the Federal Trade Commission or IRS, wanting to alert you to a problem or unclaimed refund – but they need your social security number or bank account numbers. Don’t give them out! Federal agencies never contact people via email.

► You have to be in it – to win it! Unless you entered a contest, never open an e-mail that says you won money. Thieves use the trick to plant spyware, Trojan horses and viruses! If you did enter a contest, but get an e-mail asking for your bank or credit card information as a claim fee, it’s a scam! In real sweepstakes, all you will owe are taxes!

► Skip “fraud” alerts – If you get an e-mail from the “fraud department” of a bank or store saying you’re a victim of identity theft, and asking you to verify your account info, don’t be fooled. Banks and retailers won’t ask you for that info via e-mail.

www.snopes.com

Before passing an email something along check out its authenticity first with snopes.com. Snopes is a website that is the most widely-known resource for validating or debunking urban legends, Internet rumors, email forwards, and other such stories of uncertain or questionable origin in popular American culture.

*********

Health Care Provider

GLOSSARY
Source: Top Health

Health care today offers a diverse range of trained patient care professionals. Here’s how to tell one from another when considering your own needs:

■ MD – Medical Doctor, licensed to prac-tice medicine and surgery and prescribe medications.

■ DO – Doctor of Osteopathy, trained and licensed similarly to MDs, but often with more of a “whole person” approach, emphasizing primary care and preventive health care. Dos receive special training in the body’s system of nerves muscles and bones, helping them understand how illness or injury in one part of the body can affect another.

■ PA – Physician’s Assistant, must be supervised by an MD or DO; may perform many of the same duties as a physician as determined by the laws in each individual state.

■ NP – Nurse Practitioner, a nurse with a graduate degree in advanced practice nursing; can prescribe medications in some states.

■ RN – Registered Nurse has a college degree in nursing; may specialize in a particular condition or type of treatment.

■ LPN – Licensed Practical Nurse, a graduate of a vocational nursing school; must be supervised by an RN or physician.

**********************************************

Reprinted from Ohio Polio Network Newsletter, Spring Issue 2008

ANNOUNCING A NEW

OLYMPIC EVENT:

THE UNINTENTIONAL

TRIATHLON

This new Olympic event will be of particular interest to members of OPN. It consists of three separate events with cumulative scoring. The sports are ones in which we have much practice and superbly-honed skills, so we will possess a truly competitive edge.

The simple unintentional completion of any triathlon event earns basic points. Careful attention to the quality of an action, and its consequences, will enable the athlete to gain additional points; the maximum is not yet defined. Bonus points will result from ingenuity displayed during execution of the event. The following possibilities will serve as examples, but additional creative elaboration is encouraged.

Event 1 – DROPPING STUFF

This includes anything that slips out of your hand(s) and takes time and effort to retrieve. (2 points per drop) Bonus points:- The object bounces or rolls to a location that is out of reach or sight, requiring awkward bending, stretching , crawling or other acrobatic contortion for retrieval – 5 points. Multiple items fall and scatter – a sheaf of papers, an uncapped bottle of pills, all the screws you just sorted – 1 point per piece. The object is fragile and shatters, requiring at least 10 minutes and the rest of the day’s energy for clean-up – 10 points. Any of this effort results in pain – 5 additional points. If it is necessary that another person carries out cleanup or retrieval – 10 points. The object lands squarely and heavily on your foot and that hurts like #%*& - at least 4 points. On someone else’s foot – 8 points. You pick up the object and promptly drop it again – another 5 points.

Event 2 – KNOCKING THINGS OVER

All objects qualify and may be upset or dislodged by any part of your body. (2 points per knock) Bonus points:- You knock over an open container that spills its contents – 3 points. Whatever is knocked over contains liquid or sticky goo – 5 points. This permeates all the papers on your desk – 3 points. It spreads over the floor, making it unsafe to move in any direction – 3 points. The liquid / goo is of brilliant and saturated hue and stains instantly – another 3 points. The contents splash on your clothing – 4 points. On your companion’s clothing – 5 points. On your host’s linen tablecloth, oriental carpet, beige sofa – 6 points. Any of the above must be dry-cleaned – Bingo! – 20 points.

Event 3 – INADVERTENTLY LASSOING

THINGS

Scoring for this event depends upon defying the laws of probability; if you made an attempt to catch the belt, strap, cuff, shoelace, bag handle, cane, etc. around the button, doorknob, gear shift, wheelchair arm, scooter tiller, joy stick, etc. you would have almost no chance of succeeding. (4 points per ringer) Bonus points:- You must retrace your action to undo what is caught – 1 point per inch x 1 point per second. (Loops around very small protrusions merit 4 additional points.) The lassoing throws you off balance – 5 points, or causes a fall – 10 points. You’re lassoing results in execution of Event 1 or Event 2 – another Bingo! – 20 points. Any of these accomplished by means of unwanted adhesion of Velcro earn similar bonus points.

OPN athletes please take heart and continue to practice with dedication. The competition will be stiff because so many of us excel in these sports, but when the qualifying trials have been held, we will have one dynamite team ready for fierce competition anywhere. Please suggest any talent not noted above, should you have a particular inadvertent skill worthy of inclusion.

PPASS NEWS article by Jean Donaldson

FECPPSG Editor’s Note:- What a fantastic triathlon for us to take part in. I think or Florida East Coast PPSG should start a team. Let me know what you think – after all we may get to go to China!!!!

**********************************************

Reprinted from USA Weekend, Mar 30, 2008

Cut Grocery Costs FAST

Cereal – Stores know shoppers often choose the family-size box over the small one. Sometimes these bigger packages are more expensive! Compare per-unit prices. For the lowest deal, select bagged cereal or store brands.

Produce – Check a scale for the largest package – not all 5 lb bags of potatoes or apples weigh in evenly. Stick with in-season items. Go with what is in for the particular month. And don’t dismiss bruised discounted fruit, such as bananas – they’re ideal for baking!

Frozen Foods – Look for buy-one-get-one-free sales (called BOGO), popular in this aisle.

Meats – Boneless meat is more costly per pound, but it’s usually a wiser buy than a cut with a large portion of fat and bone. Get to know your butcher! When a whole pork loin is on sale, have it divided into chops; freeze separate portions. Also invest in a slow cooker, which softens tougher, less-expensive meat.

Snacks – Search high and low shelves for bargains. Pricier snacks are placed at eye level or slightly lower to attract kids’ attention.

Paper Products – Cheaper generic brand toilet paper and aluminum foil may not offer acceptable quality, so you waste money! Stock up with national brands on sale. Or detour to warehouse clubs, drug-stores or dollar stores.

Deli – Request that deli meats and cheeses be sliced thinly – you’ll use less per sandwich!

**********************************************

Reprinted from USA Weekend’s HealthSmart column by Dr. Tedd Mitchell, Feb 8-10, 2008

Living with bipolar disorder

It can be difficult to diagnose, but there are many treatment options.

When I was in medical school in the 1980s, the number of medicines available to treat bipolar disorder was small. Since then, our ability to treat it has improved. Formerly called manic depression, bipolar disorder is a serious illness that can be disruptive to a person’s relationships, to his or her ability to hold down a job and even to the ability to care for oneself.

A big hurdle to the treatment of bipolar disorder is identifying those people who have it. Although textbooks describe the illness as characterized by extreme mood swings, this is not what a lot of sufferers experience. In reality, folks with bipolar disorder differ widely in the nature and pattern of their symptoms, so the “classic” profile of the disorder should be more of a framework to guide diagnosis rather than a checklist.

Bipolar disorder can be difficult to diagnose in part because people who have it aren’t always fully incapable if productivity. When someone who has generally shown “normal” behavior starts acting irrationally, family members and friends often conclude that the person is behaving irresponsibly. But he or she may, in fact, need medical help.

It’s important to consider symptoms at both ends of the bipolar spectrum. On the “high” side, although we all experience periods of happiness sometimes a person with bipolar disorder has phases, lasting a week or longer, of behavior marked by a combination of symptoms that may include unusually strong happiness, boundless energy, increased sex drive, easy distrac-tibility and rapid speech. During such episodes, that person shows a shift in demeanor from euphoria to irritability and has grandiose ideas that can lead to making poor decisions, like engaging in excessive spending sprees.

At the other end of the spectrum are the “lows.” The depressive phase is displayed in acute and inappropriate feelings of loneliness, sadness and hope-lessness.

A manic phase is not necessarily followed by a depressive phase, making diagnosis even more difficult. Yet both the manic and depressive phases can be dan-gerous. People who are affected may develop a psychosis that makes it impossible for them to deal with reality. For this reason, the possibility of suicide is a real concern.

Medications are available to treat bipolar disorder, so talk with your doctor if you or a loved one experiences symptoms that may be caused by this condition.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail / Ormond Beach, FL 32174

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

DATE: Sunday, May 18th, 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:- Speaker -- Attorney Randal Schecter will talk to us about

Medicaid and other legal topics of interest to seniors.

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 May 14th, 2008

Any questions call Barbara at 386-676-2435.

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

R E S E R V A T I O N F O R M

May 18th, 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

05/2008

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

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.

***********

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.

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

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 Beach, FL 32174-4936

NAME:- __________________________________________________________

ADDRESS:- _______________________________________________________

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

TELEPHONE NO:- Home _______________________ Office ________________

Date of Birth:-_________________ Wedding Anniversary:- ________________

Name and Date of Birth of Spouse:-_____________________________________

Support Group I Belong To:-___________________________________________

05/2008