FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP - Vol. 13 #6

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

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

MAY /  JUNE   2006

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WE  WISH  ALL  OUR  FRIENDS

 

A FLOWER FILLED and LOVING MOTHER’S DAY

A SUNNY MEMORIAL WEEKEND

-and-

A FANTASTICALLY LOVING FATHER’S DAY

 

************************************              MEETING  NOTICE

 

May  21st, 2006     --   --   Dr. Carolyn Geis, Director of Post-Polio Clinic at

Halifax Medical Center, will talk about the post-polio clinic, physical

therapy, and also rehabilitation updates.

September 17th, 2005 --

November 19th, 2005 --

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CONTENTS

 

From Barbara   

Placebo Effect 

Tea May Help Boost Weight Loss

3 Steps to Forming Good Habits

Diabetes:  The “Silent” Killer    

General Glucose Guidelines

Today

Analyzing Your Gait: Rolls of Exercise, Bracing or Surgery

Sinus Infection and PPS

Dysphagia

Be Cautious with Over-the-Counter Medicines

The 3 C’s of Poison Control Safety

Carpal Tunnel      

6 Tips for Carpal Tunnel        

Too Much of a Good Thing

Dues                   

Calendar Watch

 

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FROM BARBARA

 

Well, this newsletter I have little to report.  However, I did take a three day bus trip to South Florida – to the Miccosukee Indian Resort (casino establishment to be perfectly honest) – their handicapped room was very good (the only complaint from my roommate that there was no counter space to place her makeup on)… they had a “roll-in” shower with a shower seat in it, grab bars all around the shower, and grab bars around the commode.  The buffet area was spacious enough for me to get around with my scooter without bumping into tables, chairs, etc.  BUT, the casino itself was almost impossible to maneuver in unless you wanted to gamble in the early, early morning hours.  The good thing about that was I didn’t lose any money gambling!!!

          The following morning we went on a boat ride around the fabulously wealthy homes.  Although they couldn’t take the scooter onboard, they were more than willing to help me onto the boat, which they did.  It’s nice having two big, strong men asking what can they do to help you. 

          From the boat ride we went to Viscaya, the estate of John Deering – the grounds are absolutely beautiful and the inside (at least the first floor) not to be believed.  They had a chair-lift to get my scooter up and into the house itself.  After exploring the first floor, they told me that it was not possible for me to go upstairs but they did have a video for me to watch so that I could see everything that was upstairs.  I started watching the video but, our bus was getting ready to leave so we all had to leave before everything could be seen.  Then it was back to the Miccosukee Resort for dinner and some “gambling” – instead of the gambling my friends and I played cards (which we had brought with us)…. we found an area in one of the bars with tables and just sat there and played.

          The following day, we left the Resort and took a drive all around the South Miami area – we went to Coconut Grove, Coral Gables, drove through the Miracle Mile, and several other areas.  Stopped for lunch at a Cuban Restaurant and then headed for home.

          I must say this – the bus we went on had absolutely no problem putting my scooter into one of the luggage bins and the driver was absolutely fantastic – taking the scooter in and out several times each day we were away.  My newest Rascal scooter allows the tiller to be brought all the way down to the seat level which is a big help in getting the scooter into luggage bins. 

          All I can say is I would do this particular trip again but wish the gambling establishment was more conducive to allowing me to do some gambling.

 

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Reprinted from Daytona Beach News Journal, January 2, 2006, THE PULSE, the latest update in health and science news.

 

‘Placebo effect’ plays games

 with the mind.

 

Crocodile dung, bloodletting, pills dispensed from impressive apothecary jars:  Medical history is littered with treatments that likely didn’t work – except to the extent that people believed in them.  Here are some tidbits about the mind-body connection that science refers to as the “placebo effect”:

  The term “placebo effect” was coined by Harvard anesthesiologist Dr. Henry Beecher.  He studied placebos after witnessing wounded World War II soldiers receive injections of salt solution instead of morphine when battlefield supplies had run out.  The patients experienced considerable relief, as if they had received a drug.

  There are a few reports of patients becoming addicted to placebo pills.  One patient swallowed 10,000 placebos in one year.  Another went through withdrawal symptoms when the placebos were taken away.

  Belief can foster ill effects as well as good ones:  People who think a treatment will give them side effects can suffer nausea, rashes, headaches and pain from what is actually a placebo.

  The strength of the placebo effect can be influenced by the size and number of pills given, the number of daily doses and even the pills’ color.  (One study reported that people were more likely to report drowsiness from taking blue pills than pink pills.)

 

~*~*~*~*~

From same article….

 

Tea may help boost

weight loss

 

          Tea, which studies suggest may be associated with decreased risk of heart disease and cancer, may also help in the battle against the bulge.

          A study published in the American Journal of Clinical Nutrition suggests that substances in tea may promote weight loss by increasing the amount of energy spent by the body.  The researchers theorize that green tea, which has thermogenic properties that promote fat oxidation as a result of the catechins contained in tea, may work together with other chemicals to increase weight loss.

 

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Reprinted from FITSMART, Jorge Cruise, USA Weekend, Dec 30, 2005Jan 2, 2006

 

3 steps to forming good habits

 

Establishing a good habit takes about 30 days.  How to keep focused during those Few weeks?  Stephen Kraus, psychologist and president of KeepYourResolution.com, suggests:

  Replace bad habits with good ones.  It’s easier to replace a habit than to just drop it,” Kraus says.  If you eat under stress, replace it with a better reaction, like power-walking or calling a friend.

  Set a time to indulge.  “Some research shows an effective short-term strategy is scheduling bad habits,” Kraus says.  If you tend to overindulge daily, set one hour a week to eat anything.  When a craving hits, tell yourself, “I can have that on Sunday from 4 to 5 p.m.  You’ll eat less in the long run and won’t feel deprived.

  Get past black-and-white thinking.  Most people let one pitfall snowball.  Reward success instead of focusing on the slip.

 

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Reprinted from HEALTHSMART USA Weekend, March 10-12, 2006

 

Diabetes:  The other

silent killer”

Dr. Tedd Mitchell

 

Undetected, it ravages bodies in an unfettered fashion.

 

          High blood pressure long has been referred to as the “silent killer,” because patients suffering from the illness often don’t realize they have a problem until their organs are seriously damaged.  Like high blood pressure, diabetes is a disease that sneaks up on millions of Americans.  It’s increasingly recognized as a major cause of death and disability, yet many who suffer from diabetes are unaware they even have it until they experience a debilitating side effect of the disease.

          This disorder damages many tissues.  Most complications involve the cardiovascular system (heart, disease and stroke, for example).  Other problems caused by diabetes include blindness, kidney disease, nerve damage, impotence, amputations, inability to fight infection and complications in pregnancy (including birth defects).  The trouble is, because many aren’t aware they even have diabetes, the illness damages the body in an unfettered fashion before being discovered.

          Type 2 diabetes is by far the most common form of the disease.  Those at higher risk include elderly people, people with a family history of diabetes and overweight folks.  Certain ethnic groups, such as Hispanics, blacks, Native Americans ad those of Pacific Island heritage, also are at higher risk.

          The good news:  Diabetes responds nicely to behavior modification.  Two of the most effective tools for combating the illness are weight control and exercise.  In fact, our nation’s growing obesity problem is linked to the increase in diabetes over the past few decades.  Numerous studies have shown a strong association between increasing fitness and decreasing one’s risk for diabetes.

 

ARE YOU AT RISK?

          The best way to find out is to be evaluated by your doctor, who can perform the appropriate blood tests and interpret them for you.

          You also can pick up a glucose monitoring kit at the drugstore and check your blood yourself.  Be sure to fast for a minimum of eight hours before you perform the test to ensure that any food eaten recently will not alter the results.  Follow the kit’s directions, and use the guidelines below to see how you stack up against the general glucose guidelines from the National Institutes of Health.

Contributing Editor Tedd Mitchell, M.D., is medical director of the Wellness Program at the renowned Cooper Clinic in Dallas.

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GENERAL GLUCOSE

GUIDELINES

Normal blood sugar =

Less than 100mg/dl

 

Pre-diabetic –

100 to 125mg/dl

 

Diabetic =

126mg/dl or more

 

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The following was sent to me via e-mail some time ago –

I apologize for not remembering who sent it to me.

 

TODAY!!

 

Today, when I awoke, I suddenly realized  that this is the best day of my life, ever!!
          There were times when I wondered if I would make it to today; but I did!  
          And because I did I'm going to celebrate!

           Today, I'm going to celebrate what an unbelievable life I have had so far:  the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

           I will go through this day with my head held high and a happy heart.  
           I will marvel at God's seemingly simple gifts: 

            the morning dew, 

                     the sun, 

            the clouds,   

                     the trees, 

            the flowers, 

            the birds.  

          Today, none of these miraculous creations will escape my notice.

           Today, I will share my excitement for life with other people.  

             I'll make someone smile. 

             I'll go out of my way to perform an unexpected act of kindness for someone I don't even know.  Today, I'll give a sincere compliment to someone who seems down.  I'll tell a child how special he is, and I'll tell someone I love just how much I care for them and how much they mean to me.

            Today is the day I quit worrying about what I don't have and start being grateful for all the wonderful things God has already given me.  I'll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.
              And tonight, before I go to bed, I'll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

         As the day ends and I lay my head down on my pillow,                   

I will thank the Almighty for the best day of my life.   

And I will sleep the sleep of a contented child, excited with expectation because I know tomorrow I am going to make it the best day of my life!

Everyone should give encouragement...

Encouragement is oxygen to the soul.

 

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Reprinted from Kansas Connection, April 2006

ANALYZING YOUR GAIT:

The ROLES OF EXERCISE, BRACING OR SURGERY?

 

A review of Dr. Esquenazi and Dr. Keenan’s presentation at Post-Polio Health International’s 9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 -4, 2005.

 

Compiled by Hilary Hallam from notes taken at the presentation and an audio record.

 

Dr. Alberto Esquenazi, is a rehabilitation physician and Director of the Gait & Motion Analysis Laboratory at Moss Rehabilitation Hospital in Philadelphia. Dr. Mary Ann Keenan, is an orthopaedic surgeon and Professor of Orthopaedics and Chief of the New Orthopaedics Service at the University of Pennsylvania.

 

 

“As you know quite well there is not a lot of expertise out in the real world in the realm of post polio syndrome. Unfortunately it’s a disease that we don’t learn in medical school. It is a disease that is not taught in health care in general but is one that is critical to individuals like you.” [Esquenazi]

 

“There is no better way to treat Post Polio than to prevent it, so we are always encouraging people to think about polio prevention” [Esquenazi]

 

Both doctors ran the largest Post Polio Clinic in the mid Atlantic for ten years. The combination of both members of their team afforded them the privilege of dealing with many complex cases over the years. They learned much from Polio Survivors about their condition and experiences and were able to implement that knowledge into the care of other patients. Due to local politics they have ended up working in separate establishments but developed some special arrangements to continue collaborating. They have a multi disciplinary approach and encourage periodic evaluations. They educate their patients and believe peer support is critical so are always surrounded by patients only too willing to help. They counsel patients on modified exercise programs, on activity adjustments, on weight control, bracing and in a few circumstances surgery.

                                                               

Dr. Esquenazi defined polio, post polio and the nature of polio muscle weakness. He explained how braces help to substitute for that weakness, and how in his clinic they optimise brace alignment and fit.

 

“Acute poliomyelitis is an infection of the anterior horn cells in the spinal cord and usually it will present as a febrile episode with weakness, with stiffness and with pain.” [Esquenazi]

 

There are about 1.5 million polio survivors alive today in the U.S.A. [USA population of 297 million, about 0.5%] and about 20 million polio survivors in the world [World population of 6,455 million, about 0.3%].

 

PPS usually presents a variety of problems, muscle weakness, overuse syndrome, nerve injuries, joint derangement, and the natural aging process.

 

He stated that patients tend to overestimate the strength of their muscles and often present with pain in, say, one area. However, it is not a focal disease but a systemic disease and affects the whole body. It had a larger affect in the areas where clinical paralysis and weakness were seen. He described polio as “throwing a large bucket of black paint at a white wall, ending up with one large blob and lots of little blotches everywhere else. That’s POLIO.”

 

Dr. Esquenazi went on to discuss Manual Muscle Testing, describing it as the old way that testing was done! i.e. basically grading muscles from 0 [with no muscle strength] to 5 [normal muscle strength]. “That is the way it was done and is continuing to be done in many places. We have learned now that that is not a good way to do it. We now use hand held dynamometry as a way to test strength because a grade 5 muscle—normal—could have as much as 30% weakness before Manual Muscle Testing could detect it.”

 

According to Dr. Esquenazi, the meat of the matter is calf weakness, and everyone needs to appreciate what this means. He explained that our calf muscles have to hold our whole body weight when we are in the stance phase, to prevent us falling. That we have to lose a huge amount of calf weakness before it is detected by strength testing. When we walk we take many steps which is what needs to be assessed, not just one step.

 

He explained how we also underestimate the demands that we place on our muscles every day: just sitting, keeping our head and back straight plus demands on our legs to cross them and move them around. Then add walking! Also as we get older we tend to get a little bigger, and he added that Americans tend to get a little bigger than the bigger, adding to problems and producing fatigue.

 

A review of the information provided by the 500 patients in their clinic showed that most patients complained of fatigue. A large number complained of muscle pain, joint pain, muscle weakness, new muscle weakness, cold intolerance, atrophy, problems with walking (almost 80%) and stair climbing.

 

He then talked about the consequences of trying to walk. He explained that we have been compensating for decades, and our joints pay a price for that. He showed a film of a lady with a large amount of back flexibility in her knee joint, stretching, straining and damaging not only muscles and tendons, but also skin, nerves and vessels—ending up with a complaint of pain.

 

He said “many of you got to the age of 17 and 18 and decided ‘No more braces’ with the thought that ‘if I can get rid of my braces then I am better.’ Unfortunately we know now that that was not a good idea. Plus you hide your braces. President Roosevelt worked endlessly to hide his so that he did not appear to be ‘disabled’.”

 

In their Gait Laboratory they put a series of little infra-red sensory stickers on a patient that allows them to convert the human figure into a computer animation so they can measure how we walk in great detail. This can be manipulated and rotated and viewed from any perspective. They can measure the speed, symmetry and displacement of joints and do this without and then with bracing.

 

He then showed a slide of a gentleman carrying a very large toolbox and asked why do you think this patient came to visit us. There was a lot of laughter when the first person called out, ‘His fingers are tired’. ‘Yes, and he is also likely to get backache and shoulder problems. Can you guess his job?’ I replied, ‘something very strenuous because he is a polio survivor’.  Dr. Esquenazi told us that he is a maintenance engineer in a huge Casino with endless corridors and has to carry all that he might need with him; that he wrote to his employers and the Union to explain that he needs to put wheels on this toolbox so that he can retain his health and job.

 

He then went on to explain that there are two phases to walking, the stance phase when the foot is on the ground and the swing phase when the leg is off the ground. Braces and adaptive postures can do a great job at substituting for stance phase muscles but there is nothing to help swing phase muscles so they are very vulnerable to overuse.

 

“There are old style and new style braces but unfortunately the new style braces, even though they are lighter and more visually appealing, have become more and more ones that are brought out from a factory and shoved on a patient. The art of making braces is dying.”

 

He explained that people are not going into training, that Insurance Companies do not want to pay for braces, and that dealing with polio survivors is a pain because they know what they want and it never comes out right. What does a brace do for us? It substitutes for weak muscles. The brace produces support to the leg when standing, and when walking, where the foot is in the stance phase. In general it does nothing in the swing phase although there are a few exceptions. Braces do nothing for us when we are sitting—although sometimes they make our leg uncomfortable.

 

Weak calf muscles mean that the tibia bone is not held strongly, and wants to fall forward, tending to make the knee buckle. So what do we do? We use our hand to push back on our thigh, or maybe just snap our knee back into hyperextension. The next thing we do is to take short steps, which do not strain our legs as much. We may complain that we cannot keep up with our friends and are fatiguing, but it could just be taking short steps—longer ones might cause our knee to buckle. Or we may walk with our knee stiff so that it does not have to make that effort. The answer is to

put a brace on it.

 

Braces [AFO’s: ankle foot orthosis] come in all colors and shapes so the first step is to try to pick one that is visually acceptable to the patient. Although it might not seem the first criterion, they want us to wear it. Secondly it must be properly mechanically built. Thirdly it must not hurt. He asked how many patients in the room wore braces; how many have a sore or callous and a few people kept their hands up. He explained this was not unusual; that we are willing to tolerate calluses, rubbing, high pressure, because it lets us do more, but this is not acceptable and it shows how tolerant we can be. “Go back and have your brace reassessed.”

 

In his clinic they tend to use braces that are hinged and have movement—although that is not universal—because when the foot hits the ground it needs to get flat to make us stable. If the foot is not allowed to do that then we need to make extra effort, bend our knee early, flex our hip earlier, and do things to accommodate this, which will usually strain our thigh muscles.

 

Back knee deformity is another very frequent problem usually aggravated if the foot is stuck in a toe down position. A long time ago surgery to stabilize the knee was sometimes to put your foot into a fixed position pointed down. It can be prevented but it’s not easy once it’s started and we tend to need a long leg brace. Long leg braces KAFO’s [knee ankle foot orthosis] come in many flavors and shapes. At their clinic they like to use braces that are not locked at the knee if at all possible.

 

Where feasible they like to allow ankle movement but this has advantages: moving the foot up and down gives a more natural gait, adding a little spring to kick the foot up if necessary— and disadvantages: it has the potential for unwanted ranges of motion; the brace can become loose, the joints not doing what they are supposed to, and they require more maintenance, replacing parts and pieces where necessary.

 

In their clinic they use spring assisted braces, ultra light-weight carbon graphite and the newest of all, weight activated braces that lock as your weight goes down on them and unlocks as your weight comes off. While not without problems they work for some people.

 

Shoulder and wrist problems when walking! Dr. Esquenazi said they have learned that if we have weakness in our legs then we will end up with problems in our shoulders and wrists, either from pushing a wheelchair, pushing ourselves up to stand, or leaning heavily on crutches. He then showed film of a patient who helped with their research, followed by an animation showing how she stood up from a chair. “She uses her head and twists her pelvis in an awkward manner. Now we can try and figure out what is causing this. Think hard of the extra problems, the extra stress and strain on her shoulders and wrists if she weighed more.”

 

Sometimes they can make braces for upper limbs but they are a little harder to do and less effective than lower limb braces.

 

“Key Issues to remember.

    1.          The earlier you apply a brace the better because you will reduce some of these strains and problems down the line.

 

    2.          The lighter the brace the better because it will take away the strain during the swing phase when you have to ‘carry’ the brace.

 

    3.          Where possible have your brace optimized for alignment at least twice a year. Remember you take it off at night and stand it against the nightstand and it falls over and could now be out of alignment. If you think it now feels a little stiff, or has a kink in it, get it checked out.

 

    4.          Your relationship with your Orthotist is long term. Find a knowledgeable and preferably bracing experienced physician to work as your advocate. Take a third person with you to help ensure that you both understand what you are saying.

 

    5.          You are taking the brace home —the brace maker will tell you it looks good — but does it feel comfortable?”

 

“I will now hand over to my colleague Dr. Mary Ann Keenan.”

 

Dr. Keenan started by talking about Exercise, saying, “We have found out that it is really difficult to truly improve muscle strength.” She said that they do see, and can measure, some improve-ment in muscles strength after adjustments with bracing, lifestyle, weight etc, but they think that once people have stopped abusing their muscles they just recover their base line strength. It is very important to continue to exercise to maintain that strength and flexibility and prevent disuse weakness.

 

Their guidelines are:

·        Low resistance and low impact – not exercising against a lot of force. Water exercises sometimes are helpful as you have the buoyancy of the water to support you against the resistance of the water.

 

·        Short duration -say two minutes -of exercise for each area of the body, rotating the different muscle groups.

 

·        Do not exercise any group of muscles to the point of fatigue.

 

·        Take frequent rest periods.

 

Dr. Keenan then went on to talk about surgery. Surgery is not a huge part of caring for people with post polio problems but if you do need surgery then it’s important to have an

·        Anesthesiologist – “who understands the issues of post polio and the need to go light on all their many drugs.

 

·        Surgeon – who accepts and practices the holistic approach to surgery, someone who goes beyond looking at the leg in question, to both legs, arms and in fact the whole body.

 

·        Knee surgeon – who understands how the foot impacts on the knee, how a weak calf can lead to knee problems.

 

People who have a little weakness in their calf have to use their quadriceps in the front of their thigh more strenuously leading to kneecap problems, grinding of the kneecap and tendonitis in the thigh muscle. If the calf is even weaker with back-knee then you can have more serious problems. Dr. Keenan has seen patients who have had their knee scoped a couple of times, by good surgeons, nibbling away at their meniscus because of tears, who did not realize that the problem was being caused by the weakness in the calf. It is really important for health professionals to look for the underlying cause.

 

She explained that she performs surgery for pain relief, correction of deformity, on occasion redirecting some muscles’ forces with tendon transfers, stabilizing joints and to reshape a leg or foot so that a brace can be made which will provide good structural support. “Getting rid of that brace was a 50’s and 60’s idea but it is no longer appropriate”.

 

Dr. Keenan tells all her patients that there is a lot she can do for our legs but we have to save our shoulders, the key to our independence. We need to minimize the mechanical force we put on our shoulders, e.g. pushing up to get out of chairs, leaning heavily on crutches etc.

 

Dr. Keenan then went on to talk about specific problems.

 

Rotator Cuff  Problems – caused by overuse of shoulders. MRIs are taken of the shoulder joint, but Dr. Keenan ensures that this also covers the muscles that control that joint; looking at the actual tears in greater detail, and also to get some concept of the quality of the muscles that work that joint. If the muscle is filled with fat then you know it does not have much muscle strength. To reattach the tendon there needs to be enough muscle fiber to work the shoulder again. Rotator Cuff Surgery is a big investment of patients’ and family’s time because during recovery you cannot use that arm whilst the shoulder is healing. It is imperative to look at what actions caused the tear so that you modify how you do the action to prevent it occurring again. Some strength can be lost but overall the results are good.

 

Carpel Tunnel Syndrome – surgery is not always necessary. It may be as simple as changing grips on canes and crutches, or better leg bracing so you don’t have to lean so heavily on aids. Where this has been going on for some time with significant arthritis, where really severe, she might stabilize the wrist to get rid of the pain but this takes away the motion so she tries to avoid this type of surgery.

 

Equinnus – toe down position. When you walk and your toes go down first instead of your heel. It is like having a built-in doorstop pushing you backwards and jamming your knee backwards. Here she lengthens the