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NO MEETINGS IN JULY AND AUGUST
September 19th, 2004 -- Speaker:- Dave Clark – a polio survivor who played minor
league baseball while wearing braces on both legs and
using crutches. A motivational speaker worth listening to.
November 21st, 2004 --
January 16th, 2005 -- NEW YEAR’S LUNCHEON
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CONTENTS
Polio Word Search 1
Eat Smart –
10 Nutrition Moves 3
Eat Smart –
D, definitely 4
To My Friends 5
Post-Polio Update – May 2003 6
Anesthesia – Considerations for
Patients with Post-Polio Syndrome 11
Issues to Discuss With Your
Anesthesiologist 13
Stem Cell Therapy for
Post-Polio Syndrome 14
Strokes 17
Salonpas 18
Upcoming Conferences 19
Dues 19
African Polio Groups Brace
To fight Menace 20
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Reprinted from the Post Polio Awareness & Support Society of British Columbia, PPASS News, May/June 2004; reprinted from GLEANINGS, January/February 2003, Nebraska Polio Survivors Association.
POLIO WORD SEARCH
by Millie Malone
If you are expecting a grid to appear and a list of words, I am truly sorry. The polio word search is a totally different game. A polio survivor can be rattling along (chatterboxitis is a well-known polio residual) when all of a sudden… what was the word I was going to use? This leads to a fun game played by all polio survivors. Sometimes we play via e-mail, sometimes in person.
Polio survivor 1: “…and then I saw this really remarkable… ummmmm, you know, that thing. I think it starts with an “r.” Maybe not.”
Polio survivor 2: “Is it bigger than a… oh, shoot… you know, you keep that sliced stuff in it so it won’t get all dried out?”
Polio survivor 1: “Breadbox? Is what bigger than a breadbox?”
Polio survivor 2: The really remarkable thing you saw… remember? Is bigger than a breadbox?”
Polio survivor 1: I have no idea. I can’t even remember what it was I saw now!”
This scenario is played out over and over. Polio Survivor 1 will, in all likelihood wake up at 3 a.m. shouting “Rifle! It was a rifle!” At which point his/her spouse will jump out of bed and have 911 dialed before Polio Survivor 1 can explain that it was a lost word that just found its way home.
I talk to many polio survivors via the Internet every day. None of us can remember anything. I am thinking of inventing one of those, you know… they suck stuff up… no, not a straw… a vacuum, yes that’s the word.
What was I saying? Oh, yes, I am thinking of inventing a vacuum that will suck up all the words we lose in our everyday conversations and restore them to our heads where they belong.
I can see it now… a group of polio survivors are sitting around a table, each holding some playing cards in his/her hands. No-one can remember if they were playing Hearts or Euchre, so they lapse into a conversation instead. One woman is telling her friend about a new place to shop, the men are swapping fishing stories. The conversations peppered with “oh, you know what I mean” and “I’ll think of it in a minute, just hang on.” Words are wandering off, some of them not just leaving but taking hostages as well.
TADA! In I come with my new invention, the thingie… you know what I mean. I plug it in and start vacuuming up the words that have drifted into a pile in the corner of the kitchen. Then I get a large box and dump the bag. “Hey! Who was talkng about fishing? I found “flycasting” in here. Did someone say something about hot flashes? This word is sort of bent and scuffed, but I think it’s “menopause.” Anybody need a perfectly good “repercussion”? Ooooops… I think I have to adjust the settings here… all that is left is a pile of odd vowels, four exclamation marks and several hundred commas. They could be semi-colons… maybe this one is an apostrophe. Anyone want any of these before I dump them in the wastebasket?”
I am thinking of perhaps opening a used-word store. I could vacuum up all those lost words, dust them off, polish them up a bit and sort them alphabetically. I could put up some shelves and line them all up. Then when a polio survivor calls me and asks for a word, I could help him/her find it. “You were talking about your mother-in-law, you say, and totally lost the word you were searching for. Does it start with a B? I have an entire shelf of B words. Bountiful? Good, I will sent it right over.”
I might need to hire a… hmmmmm… they take letters… no, not Vanna White. She turns letters, but she doesn’t actually take any. No, I mean those people with the pads… not bachelors… damn it, I know the word. Secretary, yes, I might need to hire a secretary to help me keep track of the uh… you know… those things on the shelves in my new store. Words, that’s what I was going to say. Words. In an on-going effort to thwart spammers, I have added a little something to my reply to address. When replying to my posts, please remove “clothes.”
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EATSMART
By Jean Carper
10 BEST
NUTRITION MOVES
Every meal can easily include several points on this no-nonsense list.
Details about specific nutrients are fascinating. But in tracking down the fine points, don’t lose sight of the big picture. Here are 10 solid, sweeping actions that will get you the best nutrition bank in 2004.
Ø Eat seven to nine servings of fruits and vegetables a day. Antioxidant-packed, they can cut your risk of heart disease up to 70%, diabetesf40%, lung cancer 30% and breast cancer 20%, studies show. Tops in antioxidants: prunes, raisins, blueberries, blackberries, garlic, kale, cranberries, raspberries, strawberries, spinach.
Ø Eat fatty fish two or three times a week. That provides enough omega-3 fat to help prevent heart disease, arthritis and brain dysfunction. Fish oil protects brain cells, and suppresses inflammation and irregular heartbeats. In a new study, eating fish just once a week cut the risk of Alzheimer’s disease 60%. Best: salmon, sardines (fresh and canned), mackerel, herring.
Ø Restrict red meat to once or twice a week. Recent evidence ties red meat (beef, pork, veal, lamb) to increased cancer of the colon, pancreas, breast, prostate and kidney. Reason: Carcinogens form in meat during cooking. Worst methods: frying, barbecuing. Best: baking, stewing, boiling, microwaving.
Ø Eat 25 grams of fiber a day. Most adults eat less than half that. Fiber lowers cholesterol and blood pressure; cuts the risk of heart disease, diabetes and cancer; and helps control weight. Super sources: All-Bran, Fiber One, oat-bran cereals (check labels), dried beans, barley.
Ø Use olive oil primarily; avoid trans fats. Olive oil is the main choice of people who live the longest and have the least heart disease, cancer and other chronic diseases. Deadliest: trans fats in some margarines and baked goods, such as doughnuts – they clog arteries more than saturated animal fats do.
Ø Eat “good” carbs. Slash “whites” – bread, sugar, potatoes – that cause rapid spikes in blood sugar. Such foods can double your odds of heart attack, diabetes and certain cancers, and make you fat. Eat carbs that produce a slow rise in blood sugar. Best: legumes (including peanuts); whole-grain, high-fiber breads and cereals; fruits and vegetables.
Ø Drink three or more cups of tea a day. “Real” tea (not herbal) helps save you from heart disease, cancer, osteoporosis, infection, age-related mental decline, dental cavities and weight gain. In one study, three cups a day cut the risk of heart attack 11%. Brewed caffeinated green tea has the most antioxidants; bottled and instant teas have the least.
Ø Eat nuts every day. A mere 3/4 ounce of nuts (almonds, walnuts, pecans, peanuts) daily slashed the risk of heart dieseas and diabetes 30% and Parkinson’s disease 43% in Harvard studies. Daily consumption of nuts and peanuts, including peanut butter, helped control weight in other research.
Ø Shave portions by one-third to half. Gigantic portions are a major cause of weight gain and obesity. In studies, adults given a large serving ate 30% more calories than when given a small one. Kids, too, devoured 25% more calories when served oversized portions. If it isn’t on the plate, you aren’t tempted.
Ø Take a daily multivitamin/mineral pill. It can erase subtle deficiencies that make you more prone to infections and chronic diseases, including cardiovascular disease, cancer and bone fractures. Many leading authorities now urge all adults to take a daily supplement.
Contributing Editor Jean Carper is a nutrition authority. Contact her or sign up for a free e-mail newsletter at JeanCarper.com.
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EATSMART
By Jean Carper
D, definitely
Millions of Americans deficient in Vitamin D are on the fast track to chronic illness, says expert Michael F. Holick, M.D., of Boston University Medical Center. Here are seven risks:
¨ Bone/muscle pain. In one study, 93% of people with chronic musculoskeletal pain were low in D. New research shows vitamin D cuts the risk of rheumatoid arthritis by a third.
¨ Heart disease. Vitamin D lowers blood pressure as much as drugs, cuts the risk of congestive heart failure and keeps arteries elastic.
¨ Osteoporosis. Vitamin D outranked calcium in preventing bone fractures in a Harvard study.
¨ Cancer. Daily D results in 40% fewer colon polyps. In test tubes, it also inhibits lung, breast, colon, prostate and pancreatic cancer cells.
¨ Multiple sclerosis. In D-rich women, risk dropped 50%.
¨ Schizophrenia. When babies were given vitamin D, their risk of this disease sank 90%.
¨ Type 1 diabetes. Eight in 10 cases might be prevented if infants were given extra D daily.
Most apt to be deficient: breast-fed babies, the elderly, the obese, dark-skinned people and those who get little sun. (Sunlight spurs vitamin D production; 30% of healthy young adults lacked D after a Boston winter.)
The minimum you should get: 200 IU daily from birth to age 50, 400 for ages 51 to 70, then 600. The official safe limit is 1,000 IU in infancy, then 2,000. But five times that can be safe if you are deficient, Holick says. To see if you are, have your doctor test for 25-hydroxy-vitamin D. (Note: 1,25-dihydroxy-vitamin D is the wrong test.)
Sources: Fatty fish (salmon, mackerel, halibut, sardines); fortified foods (orange juice, breakfast cereals).
Jean Carper is a nutrition authority. Contact her or sign up for a free e-mail newsletter at JeanCarper.com. Scientific sources are at usaweekend.com
FECPPSG Editor’s Note:- This is one vitamin we really don’t hear that much about. Next time I’m at the doctors will ask for that particular test (25-hydroxy-vitamin D).
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Further FECPPSG Editor’s Note:- The preceding two articles are reprinted from two issues of USA Weekend, the first one from the Jan. 16-18, 2004 issue and the second one from the May 7-9, 2004 issue. They are put into this newsletter as your editor feels they will be of interest to you.
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This came to us from an e-mail friend and it just felt right to share with all our friends.
To My
Friends
If you live to be a hundred,
I want to live to be
a hundred minus one day,
so I never have to live
without you.
-- Winnie the Pooh
True friendship is
like sound health;
the value of it is
seldom known
until it is lost.
-- Charles Caleb Colton
A real friend
is one who walks in
when the rest
of the world walks out.
Don't walk in front of me,
I may not follow.
Don't walk behind me,
I may not lead.
Walk beside me and
be my friend.
-- Albert Camus
Strangers are
just friends waiting to
happen.
Friends are the Bacon
Bits in the Salad
Bowl of Life.
Friendship is one mind
in two bodies.
-- Mencius
Friends are God's way of taking care of us.
I'll lean on you and
you lean on me and
we'll be okay
-- Dave Matthews
If all my friends were
to jump off a bridge,
I wouldn't jump with them,
I'd be at the bottom to
catch them.
Everyone hears what you say.
Friends listen to what you say.
Best friends listen to what you don't say.
We all take different
paths in life,
but no matter where we go,
we take a little of each
other everywhere.;
-- Tim McGraw
My father always used
to say that when you die,
if you've got five real friends,
then you've had a great life.;
-- Lee Iacocca
Hold a true
friend with both your hands.;
-- Nigerian Proverb
A friend is someone who knows
the song in your heart
and can sing it back to you
when you have forgotten
the words.;
-- Unknown
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Post-Polio Update, May 2003
With Susan L. Perlman, M.D.
Associate Clinical Professor of Neurology
UCLA Medical Center, Los Angeles, California
Revised February 2004
Reported by Mary Clarke Atwood
Editorial assistance by V. Duboucheron and S. L. Perlman, M.D.
Dr. Perlman is Clinical Professor of Neurology at the University of California - Los Angeles (UCLA) and Director of the Neurogenetics Clinic. She has a consultation clinic for post-polio syndrome.
This report is based upon Dr. Perlman’s presentation in Newport Beach, California to the Post-Polio Support Group of Orange County, on May 18, 2003. It includes Drugs to Use with Caution, Evidence-Based Medicine, PPS Facts, Research Highlights, and Practical Management Strategies including information on pulmonary dysfunction and use of oxygen.
Or, why is it so hard to find a doctor who knows about post-polio syndrome and is willing to treat it? Because one of the first things physicians are taught is, do no harm. A physician might tell a PPS patient, “I’m not the right kind of specialist.” Or if the physician fears there is something particular about this disease that he doesn’t know and he might recommend something wrong. Or he might say that there is no evidence-based treatment that he can justify recommending. With the abundance of information currently available on the Internet, a physician can quickly educate himself about PPS.
1. Post-Polio Muscle Atrophy (PPMA), often referred to as PPS, weakens nerve muscle communication and performance. Therefore drugs that affect those areas should be used with caution.
3. Appropriate adaptive equipment and bracing will not cause more weakness when used properly. Do not be afraid to use adaptive equipment with muscles that are already weak. This equipment will actually make a person stronger by relieving stress on the muscles.
4. Don’t blame everything on polio; polio survivors are not immune to other conditions and/or diseases.
These central nervous system depress-ants can increase feelings of fatigue:
· Narcotics
· Sedatives
· Tranquilizers
· Sleeping pills
· General anesthetics, e.g. ether
· Alcohol
Muscle relaxants:
· Valium--diazepam
· Soma--carisoprodal
· Robaxin--methocarbamol
· Parafon Forte--chlorzoxazone
· Norgesic, Norflex--orphenadrine
· Flexeril--cyclobenzaprine
If a person already has muscle fatigability and weakness, he may feel weaker if he begins a muscle relaxant similar to those listed above for pain relief.
Depolarizing drugs (used in surgery) may cause some prolonged weakness when first waking up in the recovery room. Discuss this with the anesthesiologist in advance.
· Quinine (anti-cramp medicine)
· Quinidine
· Procainamide
The preceding two muscle relaxants are heart medications that do relax muscles. If you need these drugs for a medical condition, be an alert consumer and monitor your condition.
· Beta-blockers, e.g. propranolol, are known to cause fatigue and tiredness, but people do tolerate them.
· Calcium channel blockers, e.g. verapamil or Calan, may be associated with muscle fatigue.
· Diuretics (water pills) can deplete the body of potassium and cause the muscles to feel more tired.
· Laxatives can also deplete the body of potassium if used frequently.
· Cholesterol-lowering drugs – statins, e.g. Lipitor, Mevacor, etc.
In healthy individuals taking a statin there is a 10 – 20% chance that person will have muscle pain, cramping, or feelings of weakness. Someone who has a neuromuscular problem can take these drugs, but needs to be aware and alert to possible side effects.
Evidence-Based Medicine and PPS
There is an enormous body of literature that shows that rehabilitation is able to stop the progression of symptoms and improve function and quality of life in patients with PPMA. Rehabilitation strategies include therapeutic exercise, conditioning exercise, energy conservation, adaptive devices, and bracing. Improvement in more general areas (pain management, pulmonary or sleep interventions, weight and nutrition concerns, stress, or depression) can result in overall improvement for the individual’s specific post-polio symptoms.
On the downside, aging and motor unit losses are important contributing factors in PPMA - with no treatments proven to block their effects. New drug trials have not yet shown statistically significant benefits. Possible restorative therapies such as growth factors or stem cells are in the very early stages of development. Since the exact causative mechanisms of PPS are not yet fully known, curative therapies are delayed.
Research Highlights of 2002-2003
1. At the April 2003 American Association of Neurologists meeting, Trojan et al. confirmed other studies that showed only very slow changes in PPMA. They reported no change in isometric strength, subjective fatigue, or quality of life over a one-year period. However, during a period of five to ten-years, some things do get worse. This reinforces the validity of studies that show some improvement with various post-polio management strategies.
When a person begins a new strategy, Dr. Perlman suggests monitoring his/her own performance by the day or week and then reporting back to the physician after six weeks.
2. Last year Jubelt et al. reported that a mouse could be given acute polio and be allowed to recover; the EMG measurements that followed were consistent with recovered polio. At the April 2003 meeting it was reported that 1/3 of those recovered mice developed new weakness after a year. This correlated with progressive motor neuron degeneration.
The good news is that now a good animal model for PPS is available; it can be used for testing new drugs.
3. The long-awaited study of nervous system inflammation as a cause of PPMA was reported by Gonzalez H, Khademi M, Andersson M, Wallstrom E, Borg K, and Olsson T. at the Karolinska Hospital in Sweden, in J Neurol Sci 2002, 205:
9-13. It was reported that there are cells in spinal fluid of patients with PPS that are producing inflammatory chemicals (“cytokines”) similar to those seen in multiple sclerosis spinal fluid and blood. These may be generated by reactions with old poliovirus debris that is still there.
In an editorial response to the Gonzalez report, Marinos Dalakas, MD, a premier researcher in post-polio and other neuromuscular diseases, agrees that these cytokines may cause progressive toxicity to nerve cells and some of them can directly cause fatigue and excessive sleepiness. But before drugs for MS are tried in PPS, studies must first show that cytokines are not increased in polio survivors without PPS, that they persist or increase in those with PPS, and that they correlate with new PPS symptoms.
Nothing new has been reported relating to Bruno’s studies of the role of poliovirus-induced lesions of the Reticular Activating System in the genesis of “brain fatigue” and cognitive problems in PPS.
One wonders how the hyperintense spots seen on MRI in patients reporting severe fatigue (as opposed to none in patients with mild fatigue) might relate to brain inflammation from the cytokines – and what would happen to those spots after treatment with MS drugs. The stage is set for new drug trials on brain inflammation.
1. Exercise
People are still confused and worried about the proper use of exercise. Any therapeutic exercise can be used (strengthening, conditioning, aerobic, aquatic) as long as it doesn’t cause pain or fatigue that persists for more than 1 or 2 hours. Exercise programs should be custom-designed with respect to each person’s strengths and weaknesses while minimizing the number of repetitions. Too much exercise is not good; overdoing can increase PPS symptoms. Aggressive physical therapy could cause harm.
It is important to educate your doctors and therapists. The March of Dimes PPS brochures are accurate, easy to read, and available at http://www.marchofdimes. com/files/PPSreport.pdf.
Post-Polio Health International, 4207 Lindell Boulevard, #110, Saint Louis, MO 63108, formerly GINI, is also distributing print copies of the brochures. One free copy is available and bulk quantities are available for a minimal shipping and handling fee.
The Spring 2003 issue of "Post-Polio Health" (Vol. 19, No. 2), formerly known as "Polio Network News”, includes “A Statement about Exercise for Survivors of Polio”. This position paper was developed and endorsed by the twenty-nine physicians on the Medical Advisory Committee of Post-Polio Health International. http://www.post-polio.org/ ipn/pnn19-2.html
2. Progress
What is the best way to follow a patient’s progress? Annual doctor visits review the level of symptoms and benefits of symptomatic treatment, as well as strength testing to look for areas of improvement or worsening. Tests used to make the diagnosis of PPS (e.g. EMG) do not need to be repeated unless something is getting worse or something new is happening. EMG is not a good way to follow a person’s progress.
3. Oxygen
Should PPS patients use oxygen? There are conflicting opinions on this.
In a recent article Dr. Julie Silver stated that pulmonary specialists might order pulmonary function tests, sleep studies, or blood oxygen tests to help determine the best treatments for weak breathing muscles – ventilator, CPAP, BiPAP, or pulmonary rehab. Oxygen might be ordered.
Dr. Perlman said that the good thing about supplemental oxygen, for a PPS patient complaining about fatigability of breathing and shortness of breath, is that the breathing muscles wouldn’t have to work as hard to get oxygen. Oxygen could be considered an “anti-fatigue device” for someone who has a weak diaphragm on one side or scoliosis that restricts some chest movement, and might be overusing his neck muscles to help with breathing. A small amount of oxygen at appropriate times (not all day, but just at certain times of the day) would let the person breathe with a little less effort, yet still get the oxygen he needs. It is like giving the neck muscles a brace, so they do not have to work as hard. So in certain individuals, oxygen can be a good energy conservation device for breathing muscles.
However, if a person’s breathing is weak and his oxygen level is low, but in addition he is not breathing out enough carbon dioxide, then supplemental oxygen could cause more problems. It would slow his breathing for the purposes of getting oxygen in, but the slower breathing would result in less carbon dioxide being removed. The carbon dioxide would build up further in his bloodstream and could cause decreased alertness, even coma.
Oxygen is a double-edged sword. Not that it can never be used, but when it is used, the physician needs to know how the person’s breathing is functioning—whether or not his carbon dioxide levels are building up. Not everybody who has increased carbon dioxide has shortness of breath, so testing for carbon dioxide levels in blood may be the only way to determine if oxygen can be used safely.
· Sometimes it is just an oxygen problem, so then oxygen can be used periodically through-out the day very safely.
· Some people who have had increased carbon dioxide in their blood for years, might stop breathing altogether with only a small amount of supplemental oxygen.
A patient needs to have a pulmonologist provide guidelines for this – not a neurologist, not a general physician; this is in the area of pulmonary medicine.
1. Pulmonary Dysfunction in PPS
Late-onset pulmonary dysfunction of 2% per year, from a compensated baseline (the stable forced vital capacity the patient has had since his recovery from acute polio), is associated with a decline in Forced Vital Capacity (maximal amount of air a person can inhale in one breath).
Ventilatory failure occurs because of neuromuscular decline or increasing spine deformity, but secretion build-up, aspiration, and obstructive sleep apnea can also contribute, leading to fatigue, excessive daytime sleepiness, and pulmonary complaints.
There is a greater risk of progressive loss of lung compliance (flexibility of the lung tissue to expand when a person breathes) due to reduced ability to take deep breaths and the effects of secretions. Small changes (mucous plugs, infection, dehydration, excessive fatigue) can lead to acute respiratory failure. Chronic alveolar hypoventilation (“underbreathing”) may be worse at night even without obstructive sleep apnea.
Management goals are to:
· Maintain normal alveolar ventil-ation (getting enough oxygen and carbon dioxide in and out of the lungs) around the clock
· Provide clearance of airway secretions
· Improve pulmonary compliance (more flexible lung tissue moves more air)
· Address the factors causing sleep disordered breathing (central or obstructive)
· Establish an individualized pulmon-ary rehabilitation program
Overall improvement of an individual’s specific post-polio symptoms will occur with progress in the more general areas of pain management, pulmonary or sleep interventions, weight and nutrition concerns, stress, or depression. Therapeutic exercise, conditioning exercise, energy conservation, adaptive devices, and bracing are able to stop the progression of symptoms and improve function and quality of life in patients with PPS. It is important for polio survivors to educate their doctors and therapists. Aggressive physical therapy could cause harm. Too much exercise is not good; overdoing can increase PPS symptoms.
Medications that weaken nerve muscle communication and performance should be used with caution; examples are found in this report.
© Copyright 2003
Mary Clarke Atwood
Reprint permission must be obtained directly from:- Rancho Los Amigos Post-Polio Support Group
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Reprinted from Polio Survivor News, CO, February 2004; reprinted from Polio Deja View, Richmond, VA,
April – May 2003.
ANESTHESIA CONSIDERATIONS
FOR PATIENTS WITH
POST POLIO SYNDROME
General
Functional capacity diminished due to fatigue and/or muscle weakness 15 to 40 years after initial infection, and after stabilization of s
ymptoms for many years – “unstable polio”.
Theories-most practical is the giant motor neuron dysfunction – Collateralization of muscle fibers during recovery from motor neuron loss produced giant motor neuron units, which with time, aging, overuse, or decreased remodeling have broken down. Exertion brings on fatigue and weakness. Wide range of functionality, and most at risk are original muscles. Compensated deficits will decompensate with anesthesia.
Symptoms and involvement to be discovered in thorough pre-operative evaluation: These include Chronic Pain, Fatigue, progression of weakness, dysphagia, respiratory insufficiency, urinary retention, GI motility changes, emotional reaction to change in functional capacity and to recrudescence of polio.
Anesthesia consideration highlight include the following:
Pain
Type I Polio muscular pain; nerve entrapment, muscular-myofascial fatigue pain; joint pain from unstable joints, previous procedures; arthritic changes. Patients generally avoid narcotics:
a. fear of addiction
b. fear of pulmonary compromise, and
c. avoidance of functional compromise.
Hyper-aesthesia otherwise not the norm. Chronic Pain med’s otherwise utilized.
Aspiration Risk
Patients who have had bulbar symptoms likely have dysphagia, esophageal dysmotility, pharyngeal pooling, delayed swallowing, LES dysfunction and should be considered to be a risk for aspiration.
Pulmonary
History of iron lung during childhood places patients at increased risk for post-operative ventilation, or requirement for post-op vent support. Psychiatry evaluation of value pre-op. Pulmonary function tests. 3 Rules of 50% quite germane in this population.
CAH – chronic alveolar hypoventilation due to restrictive disease, assessed by VC, MIF, ABG’s; pre and post-op; Incentive spirometry.
Support CPAP/BiPAP – if required during day or night, might require titration of support and O2 immediately post-op. Patient’s own masks most comfortable, and will require recovery room coordination with respiratory therapy and nursing.
IPPV – Intermittent positive pressure ventilation – requires pre-operative training. Might use chronically. If post-operative ventilation expected, this is the optimal weaning modality, preferable to endotracheal ventilation with CPAP wean. Mucous plugging decompensatory in severe cases. Effective cough maintenance.
Ventilatory Fatigue may appear precipitously and post-operative monitoring crucial.
Neuromuscular
Few studies to support exquisite sensitivity to no-depolarizing NMB. However NO Residual Blockade by double burst, and full reversal. Avoid Edrophonium for short half-life. Muscle relaxant effect of anesthesia gas to be minimized by ventilating off prior to extubation.
Cold susceptibility – Patients often with baseline vasomotor dysfunction. Neuromuscular dysfunction amplified with temperature drops as little as .5 degrees Centigrade.
Neuroendocrine
Theoretical hypoadrenal state link to fatigue. May consider pre-operative cortisol dose. Not et in literature. Blood pressure support medications helps many patients with fatigue.
Regional
No specific contraindication to regional barring:
High spinal in those with respiratory muscle weakness.
Avoid neurotoxicity of 5% lidocaine.
Avoid spinals with epinephrine wash.
Patient comfort is paramount (sensitization to lumbar puncture, sensation of paralysis).
Renal
Urinary dysfunction/retention exacerbated by anticholinergics, gas, opioids.
Cardiovascular
Older patient population with the usual considerations. In addition:-
- exercise programs conditioning pre-op as delineated by physiatry would stabilize hemodynamics, lower resting HR.
- muscle conservation of non-stress exercise with avoidance of overuse may mask coronary artery insufficiency. Stress testing pre-operatively for mod and high-risk procedures recommended.
Geriatric Considerations
Standard for this population.
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Reprinted from Polio Survivor News, CO, February 2004; reprinted from Second Time Around, January 2004 – publication of Boca Area Post Polio Group, Boca Raton, FL
ISSUES TO DISCUSS WITH
YOUR ANESTHESIOLOGIST
BY HELEN O’KEEFE, MD, ANESTHESIOLOGIST
Handout at SFBABS, September 21, 2002 meeting listing questions a polio survivor should ask the medical provider before taking anesthetics.
Information from you to the anesthesiologist.
Questions, issues for the anesthesiologist.
ARM/LEG MUSCLE INVOLVMENT FROM POLIO
1. The actual extent of your muscle involvement.
2. Whether this is stable over years, or in a changing phase.
3. Will muscle relaxants be necessary? (lowest possible dose, often ½ usual, monitored with nerve stimulator)
CENTRAL NERVOUS SYSTEM
1. Any history of excessive fatigue.
2. Prior experience with sedatives, pain medications or anesthetics.
3. RAS (reticular activating system) damage from original polio infection may cause sensitivity to sedatives, prolonged wake-up.
RESPIRATORY SYSTEM
1. Chest muscle involvement, lung capacity, pulmonary function tests.
2. Prior or current ventilator use.
3. Sleep apnea, serious snoring, CPAP use.
4. Smoking. . . PLEASE STOP any-how, please!!!!!
5. Plan for respiratory support during & after surgery.
GASTRO-INTESTINAL SYSTEM
1. Any reflux or heartburn, antacid use.
2. Any swallowing difficulties… including using pills.
3. Request for maximal antiemetic treatment intraop.
POSITIONING
1. Any particular positions that are painful for you?
2. What position will be used during surgery? (Check out whether there are problems for you in that position.)
TEMPERATURE
1. Any problems with sensitivity to cold or chilling.
2. Are forced-air warming blankets available.
POST-OPERATIVE PAIN
1. Any experience with pain tolerance and/or reactions to pain medica-tions?
2. Plan for post-operative pain control.
Reprinted from SFBAPS Newsletter, Concord, CA, October 2002
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The following article is Reprinted from Post-Polio Health Fall 2003, Vol. 19, No. 4 (formerly Polio Network News) with permission of Post-Polio Health International (www.post-polio.org). Any further reproduction must have permission from copyright holder.
Stem Cell Therapy for
Post-Polio Syndrome
Edward P. Bollenbach, BA, MA, Professor Emeritus in Biology,
Northwestern Connecticut Community College, Winsted, Connecticut
The media is abuzz with talk of stem cells, and there is hope of curing diseases, such as Parkinson’s and muscular dystrophy, and spinal cord injury, using stem cell technology. What about polio? It was delightful to see a press release from the Salk Institute this spring, which added post-polio syndrome to the list of targets for stem cell therapy.1
A refresher on stem cells
There are two broad types of stem cells with several subtypes:
EMBRYONIC STEM CELLS are derived from the human blastocyst -- the result of five days of cell division after sperm and egg fuse into a fertilized egg (zygote). The human blastocyst is a sphere with about 30 stem cells inside, and these cells have many useful properties for therapy. Prodded with chemical messengers, they can develop into most of the cells of the adult body; i.e., they are pluripotent. In a lab dish, they can be maintained, dividing into new stem cells, for more than a year. They could easily be used for production of nerve cells or muscle fibers for post-polio therapy.
However, since the stem cells are not from the patient who will use them, they are easily rejected. This problem can be solved if the stem cells are cloned first by the patient donating a nucleus to a human egg cell and then allowing five days for development until stem cells are evident in the blastocyst. This is called therapeutic cloning or nuclear exchange. Therapeutic cloning requires new legislation and is currently not supported in the United States. Further, embryonic stem cells can transform into cancerous cells easier than the second type of stem cell, or adult stem cells.
ADULT STEM CELLS exist in many parts of the body, such as in the bone marrow, brain, blood, muscle, and internal organs. They are difficult to isolate because, in comparison to the tissue they are within, they represent a very small fraction of cells. However, many adult stem cells are pluripotent and can be prodded to develop into muscle, nerve, skin, and a variety of cell types. Because the patients can provide the stem cells for their own therapy, the stem cells are not rejected. Adult stem cells are not as prodigious as embryonic cells and cannot be maintained in the lab as long. Theoretically, as the technology progresses, adult stem cells should be able to serve as cellular material for new nerve cells and skeletal muscle fiber. (See Figure 1.) FECPPSG Editor’s Note:- unable to reproduce figure – sorry.
Figure 1. Motor neurons produced in the lab from embryonic stem cells. Note the stringy axoms and small bushy end fibers. Used with permission of Dr. Murashov.3
Some procedures may require embryonic stem cells and others may do better with adult stem cells.2 In the United States, there are currently very few samples of embryonic stem cells available, which government grants can fund. The American Medical Association (AMA) recently lobbied to have this reconsidered. No news yet.
Challenge for use in old polio
Old polio presents several challenges that are different from the disorders usually discussed as targets for stem cell therapy. For example, in a spinal cord injury there is a loss of cells at the break in the spinal cord -- where the body of nerve cells resides. Outside the cord, each cell projects into a long tube, sometimes three feet or more, which ends at a muscle fiber within a muscle. Theoretically, these long tubes, or axons, end with a few branches that connect to the muscle cells. In a spinal cord injury, these fibers and axons within the peripheral muscles usually remain intact. What needs to be done is to connect a new nerve body with the axon already there.
In post-polio syndrome, it is the end branches of the axons that are dying off while the nerve cell itself may continue living or eventually die. If scientists successfully implant new nerve cells in the anterior horn of the spinal cord, can the cells extend axons and connective end branches out through the tissues to a target muscle fiber? In polio, once muscle fibers have lost their nerve connections, they struggle to survive. Muscle fibers typically will atrophy and become non-functional after losing nerve stimulation. Therefore, muscle fibers may also need to be replaced. This is much more difficult than implanting new nerve cells in one place such as in Parkinson’s disease or spinal cord injury.
Yet, there are things that can be done. For example, new nerve cells or support cells can be implanted to either fuse into existing weak motor nerve cells or provide protective chemicals for support.3 This would allow existing motor nerves to function longer and possibly even sprout more.
Another approach may be to try to strengthen muscles closer to the spinal cord. Muscles such as the paraspinal or hip muscles, if damaged, can result in more disability than more distant muscles, like the calf. So it may be possible to have a positive impact on muscles at or above the hip, where they cause the most disability if weakened. Regardless, there are several promising approaches, including the use of scaffolding biological materials, such as chondroiten, to guide new nerves to their targets.4
Several signaling factors act between stem cells, allowing them to differentiate and grow in the lab or in the body. As stem cell research progresses, more of these growth and differentiation factors for cell specialization, adaptation, and connection should be uncovered.
Looking ahead
Imagine a combination of mechanisms (some of which are already known) that can signal motor neurons (nerve cells) to form connections with new muscle fibers. Muscle signaling cell adhesion molecules (CAM) can attract the placement of nerve synapses (connections) to muscle. Without even using stem cells, new derivative cellular chemicals can guide cells to the proper muscle fibers in a trouble area. There are many other possibilities. The only question is how long will it be until effective therapies emerge from stem cell research.
Much of the advancement in stem cell therapies and much of the realization of future promise will come as a result of lab work using model organisms like mice. A model of spinal cord damage, resulting in complete paralysis, has been mitigated in a rat with neurons derived from mouse embryonic stem cells. After treatment, the rat was able to use its hind legs in walking motions whereas prior to treatment it could not.5
Rodents can be easily engineered genetically and cloned, without implanted cell rejection. Using a mouse as a polio model (Polio Network News, Vol. 18, No. 4), there is a new opportunity to study post-polio rehabilitation with stem cells. The possibility of using this polio mouse model for stem cell studies involving polio is clear, due to the success in using rodents to further the understanding of cell differentiation and the possibilities of stem cell therapy.6
The most vexing problem for polio survivors may be the speed at which stem cell therapy advancement occurs. The clock is ticking. If rapid advancement in the use of this technology occurs in the next ten years or so, those who had polio in the ‘40s and ‘50s may benefit. If not, these polio survivors may just miss the next milestone in medicine -- the ability to regenerate muscle and nerve tissue.
So close to the remedy, and yet so far.
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Edward P. Bollenbach
(edward.bollenbach@snet.net) received a BA in Biology and an MA in Biology from the State University of New York at New Paltz, New York. In his professional work, he focused on bacteria and fungi, and, as he began to experience polio’s late effects, he decided to use his scientific knowledge to clarify information about post-polio syndrome.
He co-authored an article in 2002 with Marcia Falconer, PhD, Ottawa, Ontario, Canada, “Late functional loss in nonparalytic polio,” Amer J Phys Med Rehabil, Jan-Feb, 79(1),
19-23.
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References
1. Salk Institute for Biological Studies News Release. (June 4, 2003). Motor nerve cell “factory” findings may elicit treatments for spinal cord injury, disease.
2. U.S. Department of Health and Human Services. (2001). Stem cells: Scientific progress and future research directions. Retrieved from www.nih.gov/news/stemcell/ scireport.htm
3. Murashov, Alexander, K., Assistant Professor in Physiology, East Carolina School of Medicine. Personal Communication.
4. Murashov, Alexander K. (2003). Development of a method for generation of spinal cord neurons from embryonic stem cells for treatment of spinal cord injury.
Retrieved from www.ecu.edu/physio/labakm/Stem%20Cells.htm.
5. Stem cells help spinal cord damage. News from Science. Retrieved from www.abc.net.au/science/news/stories/s69828.htm. (Nov. 30, 1999).
6. Mouse model developed for post-polio research. (2002). Polio Network News, 18(4).
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The following is reprinted from Health Briefs, in the USA Weekend, May 14-16, 2004.
STROKES:
The eyes may show signs of risk
-- Peggy J. Noonan
You’ve heard the old saying “The eye is the window to the soul”? Now a study published in Stroke: Journal of the American Heart Association reports that the eye may also be a window to stroke risk – and prevention.
Researchers at Germany’s University of Erlangen-Nurnberg demonstrated that the blood vessels in the retina, the part of the eye that detects light, don’t expand and contract the way they’re supposed to in people who have high blood pressure. Retinal blood vessels are so similar to blood vessels in the brain that they’re good indicators of stroke and heart disease risk.
The researchers gave 38 people a type of blood pressure medicine known as an angiotensin-receptor blocker (ARB) and found that the drug improved blood flow in the eye. Because it works in the eye, it also may work in the brain to help prevent strokes.
FECPPSG Editor’s Note:- Put this in the newsletter because it sounded so interesting --- Hope it really will help to prevent strokes in the future.
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The following article was written by one of our members. We have never really endorsed a product before, but this has been so highly recommended by both Marion and Dr. Zilioli that we felt it should be presented to you. IF you do try “SALONPAS”, please let us have your comments. Barbara
Pain Relieving Patch
"SALONPAS"
Dr. Armand Zilioli, an orthopedic surgeon, speaker at our March, 2004 meeting, and polio survivor recommended the pain relieving patch SALONPAS to me. At this point, my pain mainly in my right shoulder blade and upper arm, is undiagnosed other than over- use. Dr. Zilioli is currently on staff at the VA hospital in St. Petersburg and is a former member of the post-polio group of Winter Park, FL, along with myself.
· The company who manufactures SALONPAS, Hisamitsu from Japan, was founded in 1847. Salonpas was first introduced in 1934. It became available in the United States in 1987.
· Salonpas patches are Over The Counter, inexpensive (I bought the box with 40 patches at WalMart Super Center for $3.88), and best of all, they Relieve My Pain.
· The pain relief is absorbed into the skin at the site of the pain. No need to take pills orally. No messy creams or ointments to get on your hands or clothing.
· One of the active ingredients in Salonpas is methyl salicylate. My primary care physician pointed out, since it does contain salicylate, a pain-relieving pill is not necessary.
· Salonpas lasts 8 hours or more. It is recommended that it be removed after at most 8 hours.
· Salonpas is not a "hot" patch. It comes in the 40 patch box of 2.56x1.65 inch size or a large single patch size.
The pain relievers I've tried are many and varied but SALONPAS definitely works very well for me.
by Marion Schoeller
Remarks from Dr. Ziloli:- I enjoyed the article by Marion. I think she described it accurately. Using it according to directions, should be safe for most people. I suppose that occasionally, if it is left on for over a day( as I have done) I get a small area of heat rash where the patch was applied. I do not feel that this was due to too much medicine in the patch itself. Also, since there is a finite amount of methl salicylate in the patch, once it is absorbed, the patch is worthless. I mention this because with Icy Hot cream, for example, which also has methyl salicylate could be applied heavily and then the salicylate could be absorbed in higher doses; this conceivably could affect prothrobin times for those people who are on blood thinners such as coumadin.
Also, since salicylate is in the aspirin family, a person who is allergic to aspirin might want to be on the lookout for a possible allergic reaction to the patch. I have not seen this aspirin allergic warning on the Salonpas box so I suppose it has not been a problem.
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UPCOMING CONFERENCES
Sept 17 – 19, 2004 --- Central Virginia PPSG –Sixth Annual PPS Support Group Retreat,
at Camp Easter Seals-East, Milford, VA Speaker:- Lauro Halstead, MD
For further information, call Linda Van Aken 804-778-7891 or
Dr. Henry R. Holland 804-288-8295.
June 2 – 4, 2005 – Post Polio Health International (formerly GINI), will be hosting their
Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living.
For further information call 314-534-0475 or e-mail them at info@post-polio org.
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DUES FOR 2004:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2003 dues, i.e., 01/2003 means it was received in January 2003, so your 2004 dues was due in January 2004. If your mailing label has the year first and then the month, i.e., 2003/01 it means that you indicated to us in January 2003 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 and/or your new e-mail 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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Reprinted from Daytona Beach News-Journal, June 24, 2004
AFRICAN POLIO GROUPS
BRACE TO FIGHT MENACE
The Boston Globe
World health officials warned Tuesday that west and central Africa were on the verge of the worst polio outbreak in years, stemming from the refusal of a single state in northern Nigeria to vaccinate children against the disease.
The officials announced a 22-country synchronized vaccination campaign for this fall that would span from Senegal in the west, Mauritania in the north, and parts of the Democratic Republic of Congo in the south in hopes of averting the crisis and staying on track for the goal of eradicating the disease by year’s end.
But several indicators for controlling the virus were not positive.
On Monday, officials from the U.S. Centers for Disease Control and Prevention confirmed that a polio case in the western Sudan region of Darfur was genetically linked to Kano state in northern Nigeria, which has not immunized children for polio since August 2003 because of fears over the safety of the vaccine.
Conflict between Arab militias and residents of Darfur has led to a refugee crisis, with many fleeing into neighboring Chad.
Officials in Kano said last month they will resume vaccinations, but they still have not announced a starting date.
Soon the “high season” for polio trans-mission starts in the Northern Hemisphere, a time when the virus is more easily transmittable in wet, hot conditions.
Cases from northern Nigeria have spread to 10 African countries that had been polio-free, according to the World Health Organization.
“The stakes are real high right now,” said Bruce Aylward, who heads WHO’s polio eradication campaign. “Without some action, we could see literally thousands of cases, and that would be tragic for the kids who are going to be paralyzed.”
The polio eradication partners – WHO, UNICEF, CDC, and Rotary International – are asking donors for $100 million in additional funding because of the extent of the polio outbreak. Officials said they needed $25 million by the end of summer in order to start the 22-country immunization campaign.
FECPPSG Editor’s Note:- It would truly be a miserable summer if children anywhere were to contract polio.
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HAVE A GREAT SUMMER!!
SEE YOU IN SEPTEMBER…
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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
DATE: Sunday, September 19th, 2004
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:- Guest Speaker:- Dave Clark – a polio survivor who played minor
league baseball while wearing braces on both legs and using
crutches. A motivational speaker worth listening to.
For further information call:- Barbara 386-676-2435
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2004 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 ________________
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07/2004