Jun 20 2012

Polio Perspecvtive

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Polio Perspective – September, 2018

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue

How Do Doctors Treat Post-Polio Syndrome?  From https://medlineplus.gov/polioandpostpoliosyndrome.html 

Preventing Ultimate Burnout

by Dr. Richard L. Bruno

GAS MONEY

by Millie Malone Lill 

Web Corner

Other Polio Newsletters

A Little Bit of Humor

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How Do Doctors Treat Post-Polio Syndrome?

From https://medlineplus.gov/polioandpostpoliosyndrome.html

Because symptoms vary, there is no one treatment for post-polio syndrome, according to the Mayo Clinic. A variety of treatments are implemented to help patients manage symptoms to be as comfortable and independent as possible.

As of 2015, many medications have been studied to help alleviate post-polio syndrome, but none have been found to be very effective, Mayo Clinic reports. Currently, physicians recommend over-the-counter and prescription pain medications to help ease muscle and joint pain.

Sleep apnea is common among post-polio syndrome patients, and sometimes doctors recommend treatment for the condition, Mayo Clinic states. Patients may need to wear a device to open their airways or refrain from sleeping on their backs.

Physical therapy exercises may be prescribed, Mayo Clinic says. Most exercises are designed to strengthen muscles without creating muscle fatigue. It is important that patients with post-polio syndrome not over-exercise to the point of fatigue because it typically takes a lot of rest to recover. Sometimes speech therapy helps patients learn to overcome difficulty swallowing.

Occupational therapy is very common because most post-polio syndrome patients must learn how to conserve energy, Mayo Clinic states. This involves learning how to pace oneself and rest periodically with the assistance of a cane, wheelchair or scooter. Occupational therapists also help patients make their homes safe and convenient as well as determine ways to perform household tasks while conserving energy.

 

Preventing Ultimate Burnout

by Dr. Richard L. Bruno

It’s 8:00 p.m. and only one light is burning at corporate headquarters. Mr. Gray, MBA, the 55-year-old CEO, is awakened by the phone. He lifts his head from the desk to answer and hears his wife asking when he’s coming home. Feeling as if he weighs a ton, his muscles burning, Mr. Gray wheels himself to the car and, with barely enough strength to pull his chair in behind him, drives home. He greets his kids, rolls into the bedroom and throws himself on the bed. It’s the third night this week he has gone to bed without dinner and slept in his clothes.

The alarm rings at 5 a.m. A clean suit and a three cups of coffee later, Mr. Gray is on the road again. Driving to work he hears the same faint “sizzling” sound he hears every morning — a sound like electricity arcing between two frayed wires. But on this, as on every other morning, he ignores the “sizzling,” ignores his increasing fatigue and muscle weakness and pain. He has a corporation to run. There’s no time to “give in” to his body. But he does wonder: “What is that “sizzling sound?” ***

Well, Mr. Gray, that metaphoric “sizzling” is the sound of your nerves burning out. Nearly 80 percent of North America’s 1.8 million polio survivors hear the same sound as they, too, experience Post-Polio Past,  the unexpected and often disabling symptoms — new fatigue, muscle weakness, joint pain, cold intolerance — that occur about 40 years after the original bout with polio. Unfortunately, most polio survivors are just like Mr. Gray: hard working, time-conscious, perfectionistic superachievers who, as a way of life, push themselves beyond their physical limits. Polio survivors ignore the “sizzling” sound, refuse to give up control, refuse to “give in” to new fatigue and weakness and pain even though their bodies are begging them to stop.

Why won’t polio survivors listen to their bodies and slow down? When you understand what it was like to have had polio, you can appreciate why polio survivors feel that “giving in” to PPS is the same as giving up their lives. “During the epidemics,” says PPS researcher Nancy Frick, a polio survivor herself, “polio was America’s summer terror. The adorable March of Dimes poster children, in heavy metal braces and leaning precariously on their crutches, were everywhere saying, ‘Give money to find the polio vaccine. Don’t let your child become a cripple like me!'” When the polio vaccine arrived in 1954, the poster kids were needed no more. Their braces, crutches and wheelchairs were evidence of a horror that Americans wanted to forget. “So polio was eagerly forgotten by everyone,” Frick says, “including those disabled by it. To be accepted back into society, polio survivors had to look ‘normal’ again. And since buildings were totally inaccessible, even paraplegic polio survivors had to be able to walk if they wanted to go to school or get a job.” So polio survivors were ripped away from their families for months or years and admitted to rehabilitation hospitals where they underwent multiple surgeries and draconian physical therapy. Many were verbally abused, slapped or even beaten with rubber truncheons by therapists or family members to “motivate” them to walk.

“Is it any wonder that polio survivors discarded their braces and crutches when they came home from the hospital,” asks Frick? “I have a theory that polio survivors would have done almost anything to look ‘normal’ and stop the abuse.” In the 1995 International Post-Polio Survey, Frick put her theory to the test. She surveyed more than 1,000 polio survivors, asking about the experiences surrounding their polio, including hospitalization, surgeries and emotional and physical abuse by family members, peers and medical professionals. She also measured their Type A behavior, sensitivity to criticism and failure, and asked whether they had been evaluated or treated for PPS.

“As in our two previous post-polio surveys,” says Frick, “polio survivors were 21 percent more Type A and 15 percent more sensitive to criticism and failure as compared to nondisabled controls.” A more upsetting finding was that polio survivors reported 34 percent more emotional abuse and 94 percent more physical abuse than did controls. “All of that ‘extra’ abuse was related to polio survivors looking disabled,” says Frick. And those who were abused were at least 15 percent more Type A and sensitive to criticism than polio survivors who were not abused. “It is no mystery that polio survivors today refuse assistive devices that make them look more disabled,” says Frick. “Using crutches or a wheelchair feels like painting a bullseye on your chest with the words, ‘Abuse me, I’m disabled!'”

Frick’s findings may also explain why polio survivors are so reticent about even being evaluated for PPS. “About 78 percent of polio survivors said they were not treated with concern by medical staff when they had polio,” she says. “Those who were not treated well became very Type A and very sensitive to criticism and failure as adults.”

Frick’s research suggests that Type A behavior developed as a protection against criticism and failure. She found that polio survivors who are the most Type A today are most likely to refuse treatment or even evaluation for their PPS. Frick concludes, “Type A polio survivors refuse to treat their PPS and use assistive devices as a protection from the kind of abuse they experienced as children.” So, to protect themselves from abuse, polio survivors became Type A superachievers.

 As Frick’s two previous surveys show, more polio survivors marry and go to college than do nondisabled Americans. Polio survivors work more hours of overtime and take fewer sick days than any other group. They became the leaders of their communities and the chief executives of the world’s largest corporations. They become Mr. Gray. That’s why their nerves have started to “sizzle.”

 Since we know that PPS are not caused by the return of the poliovirus that’s been hiding in the body for decades, nor are the result of some new disease, the simplest explanation is that poliovirus-damaged neurons are mad as hell and aren’t going to take it anymore.

New Muscle Weakness and Pain. When polio struck, large numbers of neurons in the brain stem were damaged by the poliovirus. For those who had paralysis, the poliovirus damaged 90 percent of the neurons in the spinal cord that run the muscles, and nearly half of those neurons died. The surviving but damaged neurons are less able to manufacture acetylcholine, the chemical that nerves release to make muscles contract. Yet the damaged neurons were still able to send out sprouts–like extra telephone wires–to turn on muscle fibers orphaned when their motor neurons were killed by the poliovirus. This sprouting allowed many people who were totally paralyzed during the initial polio attack to actually walk out of the hospital months later. But since polio-damaged, over-sprouted motor neurons have been doing more than triple duty for 40 years, even polio survivors with minimal loss of function have been heading for a fall.

“Sprouted motor neurons can no longer make muscles contract as forcefully as they once did, or for as long as they once could, because their internal metabolic “factory” is failing after years of overworking,” says Jerald Zimmerman, Chief of Rehabilitation Medicine at Englewood Hospital and Medical Center. “Muscles become weaker and hurt as they try to do more work than they are able to do.” And because weakened muscles can no longer support the joints, polio survivors’ shoulders and elbows ache and their knees start to bend backward. “As metabolically-damaged neurons fail, standing, walking, pushing a wheelchair–sometimes even swallowing and breathing–become more difficult or more painful,” explained Zimmerman.

This metabolic failure theory of PPS was demonstrated in 1997 by A.J. McComas of Canada’s McMaster University. McComas counted the number of remaining motor neurons in polio survivors and then followed them for two years. McComas found that a limb weakened by polio had only 40% of the normal number of motor neurons. Even limbs that were thought not to have been affected by polio have only 60% of the motor neurons they should have.

Two years later, 78 percent of polio survivors reported a decrease in muscle strength and had lost an average of 14 percent of their motor neurons, nearly twice the rate of loss expected in healthy subjects ten years older. Most alarming was the finding that the two survivors who reported the greatest decrease in strength had each lost 50 percent of their motor neurons over the two years. While these findings are frightening, they are also a guide to a rational treatment for PPS.

“Our findings make clear that polio survivors should not be treated using electrical stimulation that causes muscle contraction,” warns McComas, “nor should they engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking.”

“Brain Fatigue.” While new muscle weakness and pain are reported by more than 75 percent of polio survivors, the most common PPS symptom is fatigue. During the past eight years, my team at The Post-Polio Institute at New Jersey’s Englewood Hospital and Medical Center has found that “brain fatigue” — when polio survivors can’t concentrate and have trouble staying awake as the day goes on — is associated with a severe inability to focus attention and a marked reduction in the brain-activating hormone ACTH. Magnetic resonance imaging revealed damage to the brain-stem neurons responsible for activating the brain, damage also found during autopsies of polio survivors done 50 years ago.

A study published in 1998 describes our measurement of polio survivors’ brain waves and the hormone prolactin. Prolactin increases in the blood when there is too little of the most important brain-activating neurochemical, dopamine. Our finding that polio survivors with the most fatigue had the highest prolactin levels and the slowest brain waves suggests that they do not make enough dopamine to fully activate their brains. A dopamine shortage would explain their difficulty focusing attention, and other symptoms of post-polio “brain fatigue.” This conclusion is supported by our finding that bromocriptine — a drug that substitutes for dopamine in the brain — reduces the symptoms of post-polio brain fatigue in survivors who do not respond to the conservative treatments of choice for PPS: reducing physical and emotional stress, using assistive devices, conserving energy, resting and pacing activities.

Post-Polio Future  With the coming of PPS, the future might look bleak for polio survivors. Both the March of Dimes Birth Defects Foundation and the U.S. Congress have refused to set aside funds for PPS research. And two recent drug studies — one testing insulin-like growth factor-1 (IGF-1) and another studying pyridostigmine (Mestinon) have failed to show any “significant impact on quality of life, fatigue or muscle strength,” according to PPS researcher Daria Trojan. Even our study found that bromocriptine reduced symptoms only in polio survivors who were the most most severely disabled by fatigue. But the future is not bleak. Research during the past decade has shown that the conservative treatments of choice for fatigue are very effective in managing PPS.

Polio survivors need to follow the “The Golden Rule for PPS:” If something you do causes pain, fatigue or weakness, don’t do it (or do less of it)!” “The Golden Rule” does not mean that polio survivors should sit home and become couch potatoes. “The Golden Rule” does mean that polio survivors should stop exhausting themselves, especially with exercise. Many survivors are prescribed — or actually ask for — the kind of physical therapy they had right after polio: exercising to the point of exhaustion. But several studies show that pumping iron will not increase the strength of muscles that are becoming weaker, and can actually cause an irreversible loss of strength and possibly the death of motor neurons. No free weights, exercise bikes, tread mills or Thighmasters for polio survivors. “Feeling the burn” means nerves are burning out.

Stretching, however, helps decrease pain and increase range of motion. And gentle, non-fatiguing exercise can be useful for some polio survivors to help maintain muscle strength and tone, especially after getting a new brace. Several studies show that changing survivors’ physically and emotionally stressful Type A lifestyle is the best way to reduce weakness, fatigue and pain. One study shows that polio survivors who pace activity — that is work and then rest for an equal amount of time — can do 240 percent more work than if they push straight through the task. Another study shows that survivors use three times less energy walking if they use a short-leg brace on a weakened leg. And the follow-up study of The Post-Polio Institute’s six-week program of behavior modification, physical and occupational therapy shows that polio survivors who comply with treatment — pace activities, conserve energy, take two 15-minute rest breaks a day, and use assistive devices (a brace, cane, crutches, wheelchair or scooter) — have up to 22 percent less pain, weakness and fatigue 16 months after therapy ends. But polio survivors who refuse or quit therapy have 21 percent more fatigue and 76 percent more weakness 16 months after leaving The Institute. And there’s the rub. It’s only the refusal to listen to that “sizzling sound” that causes PPS to continue or progress.

“The treatments for PPS may sound simple but they are not,” says Nancy Frick. “Polio survivors have to deal not only with their bodies giving out on them again, but also with their long-buried emotional pain.” And it is those painful experiences of the past and memories of abuse, the fear of giving up “protective” `Type A behavior and terror of looking disabled, that stop polio survivors from treating their PPS. So the most difficult aspect of treating PPS is not deciding whether a short or long-leg brace will be most helpful. The challenge is helping polio survivors face the pain of their abusive pasts and accept appearing more disabled now — by slowing down, asking for help and using new adaptive equipment — so they won’t become more disabled later in life.

That’s why behavior modification and psychotherapy are required to help survivors accept their “second bout” with polio, change their super-achieving lifestyles and deal with the fear of looking disabled. *** As Mr. Gray would tell you, this whole PPS business stinks. But isn’t it far better to manage PPS now than to be forced to give up everything you do because you are too weak and fatigued to function? I know, you’ll slow down and take care of yourself “when you’re ready.” You’ll use a wheelchair “when there’s no other choice.” Well, you don’t drive your car until it’s out of gas. Why drive your body until it’s out of neurons? Isn’t it time to listen to the “sizzling sound?” Isn’t it time to take care of yourself? To paraphrase one famous polio survivor who refused to take care of himself, “You have nothing to fear but fear itself.”-

Red Flags for Polio Survivors [Mis]Diagnosis: Many polio survivors have been incorrectly told they cannot have PPS because they didn’t have paralytic polio. The National Institute of Health has just studied pairs of identical twins, one who had paralytic polio and one who had non-paralytic polio. Seventy-one percent of those who had paralytic polio have PPS. The surprise is that 42 percent of those who had non-paralytic polio also have PPS. The lesson: Don’t let a doctor tell you it’s all in your head just because you didn’t have paralytic polio.

Anesthesia: Polio survivors are anesthetized very easily because the part of the brain that keeps you awake was damaged by the poliovirus. They also stay anesthetized longer and can have significant complications from anesthesia. Even nerve blocks with local anesthetics can cause problems. All polio survivors should have lung function tests before having a general anesthetic. “Polio survivors with a lung capacity below 70 percent may need a respirator or respiratory therapy after surgery,” says Dr. Augusta Alba. Your complete polio history and any new problems with breathing, coughing or swallowing should be brought to the attention of your surgeon or dentist– and especially your anesthesiologist–long before you go under the knife. Also, polio survivors should never have same-day surgery or precodures requiring anesthetic.

Pain: Two studies have shown that polio survivors are twice as sensitive to pain as everyone else and need more pain medication for a longer time after surgery or an injury. However, survivors have had to develop an extremely high pain tolerance to deal with their increased pain sensitivity and are not likely to become addicted to pain medications.

Sleep: The majority of polio survivors have trouble sleeping due to pain, anxiety or sleep disorders, such as sleep apnea or generalized random myoclonus (GRM). GRM is muscles in different parts of the body twitching and jumping throughout the night and “waking up” the brain. Amazingly, most polio survivors aren’t aware that they stop breathing or twitch. If you  awaken with a headache, with your heart pounding, short of breath or don’t feel rested in the morning, call a local sleep disorders center for a sleep study.

Trauma: Eighteen percent of Post-Polio Institute patients reported that their PPS begin after trauma, including medical illnesses, surgeries, fractures, falls, and especially auto accidents. Regardless of the type of trauma or location of the injury, the most common new symptom was muscle weakness (55%), followed by pain (34%) and fatigue (11%). Twenty-six percent of patients had new symptom in the injured area plus one other nearby location. For example, 40% of those who injured one leg developed weakness or pain in the other leg. (This is a common problem for polio survivors, who compensate for injury to one part of the body by overusing another part whose nerves were also damaged by the poliovirus.) The good news is that 86% of patients regardless of the cause of trauma or severity of their injuries had significant reductions in pain, fatigue and muscle weakness after complying with therapies known to be effective in treating PPS: reducing physical and emotional stress, using appropriate assistive devices, energy conservation, adequate rest and the pacing of activities.

Dr. Richard L. Bruno is chairperson of the International Post-Polio Task Force and director of The Post-Polio Institute and The International Centre for Post-Polio Education and Research.

 

GAS MONEY

by Millie Malone Lill

Let’s say you were in an auto accident.  Your car was pretty badly damaged, but not totalled.  It still ran pretty well and you could not replace it anyway.  Your insurance company gave you $1500, with the stipulation that you could only spend it on gas.  But when that money was gone, there would be no more.  Ever.

Would you take that money, fill your car, drive all over the place right away or would you only go where you really wanted to go, saving the gas for necessary or especially enjoyable trips? 

Some of us would take that gas money and drive across country, hoping that somehow they’d be able to get back home when the money ran out.  Some of us would not, preferring to use other modes of transportation, like taxi, bus, or train.

That’s a bit like our polio survivor bodies.  We have a diminished number of motor neurons left and cannot get more when they are gone.  Some of us want to “go out with a bang,” so will do all the activities they can imagine before they are no longer able to do anything at all.  Others will decide to Conserve to Preserve and do less.  Neither is wrong. 

It is hard to think ahead to where our bodies will no longer do anything we want to do.  It’s hard to even believe such a day will come.  Not us, no, other people, but not us.  Unfortunately, it could happen to us, too. 

We can’t just do nothing at all.  That car in the first part of this article will rust and the tires will rot if it just sits there unused.  Likewise, our joints will stiffen and we will lose what little muscle we have if we become couch potatoes.  However, that $1500 or the small amount of neurons that we have to spend have to last a very long time.

There are ways to spread that money or those neurons out a bit.  The money can only be spent on gas, but you do have other money you can spend on a taxi or a bus.  Likewise, you can save your neurons by using a power chair or a walker or crutches, canes or braces.  Or a carefully selected group of all of them.

It is up to you how you spend your neurons.  I will try to use mine wisely so that I can put off as long as possible the day when I can no longer be independent.  I don’t like to have to ask for help but if I use up all my motor neurons in one burst of glory, I will bring that day, Dependence Day, closer faster.

 

WEB CORNER

Perfectionism, a poem

https://themighty.com/?utm_source=newsletter_mental_health_beat&utm_medium=link&utm_campaign=thought_full_card.action_menu&utm_medium=email&utm_campaign=newsletter_mental_health_beat_2018-09-24#post=5b9c3ef31eb4ee00ab5ebcb1

Easing the discomfort of Restless Leg Syndrome

https://newswise.com/articles/easing-the-discomfort-of-restless-legs-syndrome

Adaptive Footwear for those who wear braces

https://billyfootwear.com/

New kind of walker

https://www.mylifeglider.com/product/

Anti-inflammatory Diet.  Nine recipes to get you started

https://www.consumerreports.org/cooking-baking/anti-inflammatory-diet-recipes/?EXTKEY=I175E000&utm_medium=contentmk&utm_source=keywee&utm_campaign=health~mobile~x&utm_term=fb&utm_content=315913&kwp_0=956396

Plan to kick out Polio gives hope to children of Dadaab

https://reliefweb.int/report/kenya/campaign-kick-out-polio-offers-hope-children-dadaab

Eighteen signs you have brain fog, not just getting older

https://themighty.com/2018/08/signs-brain-fog-not-getting-older/?utm_source=newsletter_chronic_illness&utm_medium=email&utm_campaign=newsletter_chronic_illness_2018-09-19

Poverty and Disability

https://www.facebook.com/WOWdebateHoC/videos/268176137144472/

Stages of polio

https://www.manningrivertimes.com.au/story/5630573/living-with-the-later-stages-of-polio/

Polio in Papua New Guinea

https://www.theguardian.com/global-development/2018/sep/15/a-lurking-beast-polio-casts-shadow-over-papua-new-guinea-independence-day

 

Other Polio Newsletters

https://www.papolionetwork.org/

https://www.poliohealth.org.au/

www.polio.ch

http://www.postpoliosupport.com/summaries.html

https://www.polioaustralia.org.au/

http://www.post-polio.org/

http://polioepic.org/

http://snapsnv.org/

https://www.poliosurvivorsnetwork.org.uk/

 

A LITTLE BIT OF HUMOR

It was Saturday morning as Jake, an avid hunter, woke up raring to go bag the first deer of the season. He walks down to the kitchen to get a cup of coffee, and to his surprise he finds his wife, Alice, sitting there, fully dressed in camouflage.

Jake asks her: “What are you up to?” 
Alice smiles: “I’m going hunting with you!”

Jake, though he has many reservations about this, reluctantly decides to take her along.

Three hours later they arrive at a game preserve just outside of San Marcos, Texas.

Jake sets his lovely wife safely up in the tree stand and tells her: “If you see a deer, take careful aim on it and I’ll come running back as soon as I hear the shot.”

Jake walks away with a smile on his face knowing that Alice couldn’t bag an elephant — much less a deer.

Not 10 minutes pass when he is startled as he hears an array of gunshots. Quickly, Jake starts running back.

As Jake gets closer to her stand, he hears Alice screaming: “Get the hell away from my deer!”

Confused and frightened Jake races faster towards his screaming wife. And again he hears her yell, “Get the hell away from my deer!” followed by another volley of gunfire.

Now within sight of where he had left his wife, Jake is surprised to see a cowboy, with his hands high in the air.

The cowboy, obviously distraught, says, “Okay, lady! You can have your damn deer! Just let me get my saddle off it!”

7 Responses to “Polio Perspecvtive”

  1. Thomas Christian says:

    Ole better git a hearing ade?

  2. ruth says:

    thanks for this news letter. My sister is having the same feeling of when she had polio at 6. I am helping her learn what could be happening. thanks for this as the doctor is not talking about it.

  3. Millie Lill says:

    Ruth, read all you can online and I also suggest that you join one of the Facebook polio sites. You can learn a lot from those of us who have been there and done that.

  4. Hilary Boone says:

    Why do we still have so much hassle trying to get decent medical care. Sharing experiences really does help us realise ‘It’s not just me’ which slightly lessens the frustration and stress. Millie as usual you have done a great job.

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