Jun 20 2012

Polio Perspecvtive

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Polio Perspective – March, 2018

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue

THE TEN COMMANDMENTS OF PPS

Dr. Richard L. Bruno

Yoga and Post Polio

by Melissa Gatlin (taken from https://www.papolionetwork.org/)

What Makes Us Strong

by Millie Malone Lill 

Web Corner 

Other Polio Newsletters 

A Little Bit of Humor

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

THE TEN COMMANDMENTS OF PPS

Dr. Richard L. Bruno

Chairperson

International Post-Polio Task Force

and Director

The Post-Polio Institute

Dr. Nancy M. Frick

Executive Director

harvest center, inc.

and Director of Education

International Post-Polio Task Force

HarvestCtr@AOL.COM

 After 15 years of searching, archaeologists from The Post-Polio Institute have unearthed the “commandments”for treating Post-Polio Sequelae (PPS) . . .

1) Listen to Yourself!

Polio survivors often turned themselves off from the neck down after they got polio. The first step in treating PPS is to listen to yourself: to what you feel, physically and emotionally, when you feel it and why. Our most powerful tool in treating PPS is the daily logs our patients keep that relate

activities to their symptoms. However, polio survivors sometimes listen too much: to vitamin salesmen saying some herb or spice will “cure”PPS, to other polio survivors who warn that you will eventually have every possible PPS symptom, and to friends and family members (and the voices in your own head) saying you’re lazy and that you must “use it or lose it.” Polio survivors need to listen to their own bodies, not to busybodies.

2) Activity is Not Exercise!

Polio survivors believe that if they walk around the block five times a day, spend an hour on the exercise bike and take extra trips up and down stairs, their muscle weakness will go away. The opposite is true: the more you overuse your muscles the more strength you lose. Muscles affected by polio lost at least 60% of their motor neurons; even limbs you thought were not affected by polio lost about 40%. Most disturbing is that polio survivors with new muscle weakness lose on average 7% of their motor neurons per year, while survivors with severe weakness can lose up to 50% per year! You need to substitute a “conserve it to preserve it”lifestyle for the “use it or lose

it”philosophy. Stretching may help pain and non-fatiguing exercise for specific muscles can prevent you from losing the strength you have after you get a brace. But polio survivors need to work smarter, not harder.

3) Brake, Don’t Break.

The follow-up study of our patients showed that taking two 15 minutes rest breaks per day – that’s doing absolutely nothing for 15 minutes – was the single most effective treatment for PPS symptoms. Another study showed that polio survivors who paced activity — that is worked and then rested for an equal amount of time — could do 240 percent more work than if they pushed straight through. Our patients who took rest breaks, paced activities and conserved energy had up to 22% less pain, weakness and fatigue. But polio survivors who quit or refused therapy had 21 percent more fatigue and 76% more weakness . For polio survivors, slow and steady wins the race.

4) A Crutch is Not a Crutch . . .

. . . and a brace is not a sign of failure or of “giving up.” You use three times less energy (and look better walking) using a short leg brace on a weakened leg. Overworked muscles and joints hurt and nerves die after decades of doing too much work with too few motor neurons. So why not use a brace, cane, crutches (dare we say a wheelchair or a scooter) if they decrease your symptoms and make it possible to finally take that trip to Disney World? We know, you’ll slow down and take care of yourself “when you’re ready.” And 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?

5) Just Say “No”to drugs, unless…

Five studies have failed to find that any drug that treat PPS. And there have been no studies showing that herbal remedies or magnets reduce symptoms. Polio survivors shouldn’t think that they can run themselves ragged, apply a magnet or pop a pill, and their PPS will disappear. Pain, weakness and fatigue are not-so-subtle messages from your body telling you that damage is

being done! Masking symptoms — with magnets or morphine — will not cure PPS. However, two studies have shown that polio survivors are twice as sensitive to pain as everyone else and usually need more pain medication for a longer time after surgery or an injury (see 10 below).

6) Sleep Right All Night.

The majority of polio survivors have disturbed sleep due to pain, anxiety or sleep disorders, such sleep apnea (not breathing) or muscles twitching and jumping all over your body during the night. However, polio survivors are usually not aware that they stop breathing or twitch! You need a sleep study if you awaken at night with your heart pounding, anxiety, shortness of breath, choking, twitching, or awaken in the morning with a headache or not feeling rested. “Post-polio fatigue”may be due to a treatable sleep disorder.

7) Some Polio Survivors Like it Hot.

Polio survivors have cold and purple “polio feet”because the nerves that control the size of blood vessels were killed by the poliovirus. Actually, polio survivors’ nerves and muscles function as if it’s 20 degrees colder than the actual outside temperature! Cold is the second most commonly reported cause of muscle weakness and is the easiest to treat. Dress in layers and wear socks made of the silk-like plastic fiber polypropylene (sold as GORTEX or THINSULATE) that holds in your body heat.

8) Breakfast Is the Most Important Meal of the Day.

For once Mom was right. Many polio survivors eat a Type A diet: no breakfast, coffee for lunch and cold pizza for dinner. A recent study shows that the less protein polio survivors have at breakfast the more severe their fatigue and muscle weakness during the day. When our patients follow a hypoglycemia diet (have 16 grams of low-fat protein at breakfast and small, non-carbohydrate snacks throughout the day) they have a remarkable reduction in fatigue. Protein in the morning does stop your mid-day yawning.

9) Do Unto Yourself as You Have Been Doing For Others.

Many polio survivors were verbally abused, slapped or even beaten by therapists or family members when they had polio to “motivate” them to get up and walk. So polio survivors took control, becoming Type A superachievers, “the best and the brightest,”doing everything for everyone except themselves. Many polio survivors do for others and don’t ask for help

because they are afraid of being abused again. Isn’t it time that you got something back for all you’ve done for others? Accepting assistance is not the same as being dependent. Accepting assistance can keep you independent. But appearing “disabled,”by not doing for others, asking for help or using a scooter, will be frightening. Remember: If you don’t feel guilty or anxious

you are not taking care of yourself and managing your PPS.

10) Make Doctors Cooperate Before They Operate.

Polio survivors are easily anesthetized because the part of the brain that keeps them awake was damaged by the poliovirus. Polio survivors also stay anesthetized longer and can have breathing trouble with anesthesia. Even nerve blocks using local anesthetics can cause problems. All polio survivors should have lung function tests before having a general anesthetic. Your complete polio history and any new problems with breathing, sleeping and swallowing should be brought to the attention of your surgeon or dentist -and especially your anesthesiologist – long before you go under the knife.Polio survivors should NEVER have same-day surgery or outpatient tests

(like an endoscopy) that require an anesthetic. The Golden Rule for Polio Survivors:

If anything causes fatigue, weakness, or pain, Don’t Do It!  (or do a lot less of it.)

. . . and . . .

The Golden Rule for Polio Survivors’ Friends & Family:

See no evil, hear no evil . . . and help only when asked.

Polio survivors have spent their lives trying to look and act “normal.” Using a brace they discarded 30 years ago and reducing their super-active daily schedule is both frightening and difficult for them to. So, friends and family need to be supportive of life-style changes and accept survivors’ physical limitations and new assistive devices. Most important, friends and family need to be willing to do the physical tasks a polio survivor should not do, but only when the polio survivor asks. Friends and family need to know everything about PPS but say nothing: neither gentle reminders nor well-meaning nagging will force survivors to use a new brace, sit while preparing dinner or rest between activities. Polio survivors must take responsibility for taking care of themselves and ask for help when they need it.

Set your browser to:

http://members.aol.com/harvestctr/pps/polio.html for the PPS Library and all of our papers describing our research and treatment of PPS.

 Yoga and Post Polio

by Melissa Gatlin

What is Yoga

Yoga basically means Yoking of Mind and Body and is one of the oldest recorded practices that mapped all the movements a body is capable of and designed movements, called asanas that take your body though all of the movements it can do.  We also link these movements to our breath, encouraging the full use of our lungs and can turn the physical movements into a movement based meditation. Yoga itself is over 5000 yrs old, older than any religion that adopted it’s use, so while some religions (Buddhism and Hinduism in particular) do use yoga, yoga itself is not a religion.  And its not something you have never seen as a lot of exercises you have used in gym classes or PT are based off of yoga Asanas.

Examples:

Lunge (Warrior)

Painless Posture (Mountain Pose)

So why use yoga for Post Polio? 

Well yoga is both a muscle stretching and a muscle strength building activity.  Unlike weight lifting which just builds muscle though contraction, yoga also lengthens muscles so it helps keep that balance needed in our muscular structure.

It is also a bone building activity while still being low impact.  When we stretch a muscle it causes a pull on the bones which encourages the bones to grow. And of course we all know weight bearing also helps our bones and yoga is a weight bearing exercise.

Yoga is also beneficial in stimulating, revitalizing and balancing the digestive system .. most of the yoga postures compresses and releases the abdomen where  the digestive organs are located. With each posture, these organs automatically get a deep massage. Each time we compress a digestive organ and release it, old blood, bile and lymph fluid is released and fresh blood flow in. If you hold a posture for at least 20 seconds while doing slow, deep breathing, the up and down movement of the diaphragm also massages the digestive organs from the top, creating a constant pumping that stimulates and rejuvenates all the digestive organs.  Which is also why you will hear gas passed or belching in most classes.

Yoga reduces blood pressure. 

Yoga reduces anxiety, depression and is even helpful for post traumatic stress.

Yoga can be modified to meet the needs of people of all ages and physical conditions while still providing all the benefits.

Multiple studies have been done on yoga and post polio and they have all shown positive effects.

HOW TO FIND A YOGA CLASS:

There are yoga class out there but here are some that you can look for even in areas that do not have a lot of studios and are usually appropriate for those with PPS .. you will often find these offered at Physical Therapy Clinics, YMCA’s, Churches, Community Centers, Hospitals,etc.

Classes that are for Physical problems (first 10 are Hatha based)

Silver Sneakers Sit and Stretch

Chair Yoga

Senior’s Yoga

Gentle Yoga

Yoga for RA  (Rheumatoid Arthritis)

Yoga for MS (Multiple Sclerosis)

Yoga for FM (Fibromyalgia)

Yoga for Cancer Patients

Pink Ribbon or Yoga for Breast Cancer

Recuperative Yoga

Yoga Therapy or Therapeutic Yoga ( these will have teachers certified by the International Association of Yoga Therapists (IAYT))

Iyengar Yoga  (make sure they have a gentle yoga class or talk to teacher about private classes, one of the best for offering Restorative yoga)

Viniyoga (will usually offer gentle or senior yoga)

Restorative Yoga (best class for when you are fatigued .. all resting poses with use of props ..this is not for strengthening)

Classes to Avoid:

(Please note that I am not saying these are bad yoga … just that they are not usually appropriate for us .. I have actually practiced several of these myself when younger and healthier)

Ashtanga Yoga (was one of my faves when younger and stronger)

Power Yoga (another name for Ashtanga Yoga)

Bikram Yoga

Hot Yoga

Vinyasa Yoga (classes are often to fast paced with no rests between moves)

Flow Yoga (another name for Vinyasa Yoga)

Jivamukti (while highly meditative also physically challenging)

Can’t find a Teacher

Peggy Crappy (books,videos,dvd’s, You Tube .. Yoga for All of Us, etc.)

Suza Francina  (book) The New Yoga for Healthy Aging

American Yoga Associations’s Easy Does It Yoga (book)

You Tube:  Adaptive Yoga, Easy Yoga, Wheelchair Yoga

Teacher Certification  you want a min of a 200 RYT, has completed a 200 hr teachers training program that has been certified by the Yoga Alliance, teachers with more than this will be 500 RYT, or E-RYT’s, E-RYT have more than 500 hrs training.  IAYT have there own certification but teachers will have IAYT as their Certification, Iyengar Yoga as has their own certification but if they list themselves as Iyengar teachers they are certified.

Questions to ask if not sure

Do they offer classes for Seniors or those with health problems.

Do they know how to modify the poses for those with physical limitations.

Do they have chairs or props available.

Shoulder Warm-Up (from Pink Ribbon Recuperative Yoga)

You can find a video of this warm-up at http://www.youtube.com/watch?v=_SEp5qOop64&w=560&h=315

(if you have problems typing in the link go to http://yogalp.com/ and there is a link to video there)

Studies that you might find interesting:

Researchers at Johns Hopkins University examined 152 studies on yoga, identifying 15 that assessed balance-related issues. Among these, 11 studies showed that yoga practice can enhance balance, reduce the incidence of balance-related falls and reduce fear of falling.

http://online.liebertpub.com/doi/abs/10.1089/acm.2013.0378

 

WHAT MAKES US STRONG

by Millie Malone Lill

Once again, my Facebook forum came to my rescue.  They gave me the idea for this month’s column.  We had an interesting thread about what makes us strong and why we are the go ahead, Type A people polio survivors usually are.  It reminded me of an article I wrote many years ago.  I’m a recovering farmer, so I used corn as an example.  In the spring, when the corn starts to grow, a lot of rain makes it really shoot up.  Life is so easy for the little corn plant with all that water, the sun, the warmth.  There is no need to put down long roots searching for water because it is all right there, in easy reach.  The corn plant looks good, but if the summer is a dry one, those shallow roots are not going to keep the plant from blowing over in a strong wind. 

I think we are somewhat like those plants.  If life is too easy, we never develop the skills necessary to survive when things are not so easy.  That is not a problem if you contract polio at an early age.  In my case, I was four years old, which seems to be a popular age for that virus to attack.  I was taught that I must learn to be self sufficient.  If I fell, I had to find a way to get myself up because there might not be anyone handy to help me.  If something needed to be done and if I was the only one available, I had to figure out a way to do it.  I would be lying if I said I was grateful for putting down those long roots.  Not at the time.  Not when life seemed so hard and frequently so very unrewarding.  Even if my solution was downright brilliant, there was no one there to applaud and tell me how clever I was.

Now, though, I have quite an arsenal of coping skills.  I can’t carry my laundry basket to the laundry room, although it is close enough to my apartment that I might be able to walk there.  Due to weak trunk muscles, I cannot use my arms and breathe.  I’m completely addicted to breathing.  So I set the basket on my lap in my power chair and zoom off to do laundry.  It took a bit of choreography to figure out how to get into that very small room without scraping the walls or the equipment, but now I can do it easily.  Well, maybe not easily, but the point is, I can do it.  Please don’t rat me out for the marks I made on walls and equipment while I was figuring out the dance steps, OK?

We’ve learned how to handle bullies from experience.  Sometimes we forget that we do know that other people’s opinion of us is simply none of our business.  We cannot control their thoughts, only our own.  We just think of all that we have overcome and realize that the bullies are cowards who likely would have folded under half the pressure we live under.

Like the sturdy corn plants, we enjoy the company of our peers.  A lonely corn plant, without its peers to surround it, would be more vulnerable to wind and hail.  But surrounded by other corn plants, it is protected.  It is like that when we share with our fellow polio survivors.  We each give strength to the group and the group gives it back.  I love my fellow polio survivors.  We are the strongest people I know.

 

WEB CORNER

What Polio Survivors Want Their Health Care Providers to Know

https://www.youtube.com/watch?v=SdSZcU2gTy0

Apple proposes a new emoji to represent disability

https://www.imore.com/apple-accessibility-emoji-proposal

Exoskeleton helps paralyzed persons to walk

https://www.facebook.com/mashablesocialgood/videos/10157037460103136/

Complete information on gastric sleeve treatment for obesity

https://www.obesitycoverage.com/gastric-sleeve-reference-manual/

Exercise:  Use it and Lose it

https://postpolioproblemadediscapacidad.blogspot.com/p/exercise-use-it-and-lose-it.html

Eight silent signs you might have a brain tumor

https://www.msn.com/en-us/health/medical/8-silent-signs-you-could-have-a-brain-tumor/ss-AAqQg9q?li=BBnb7Kz#image=1

Could social media pose a new challenge for ending polio?

https://www.msn.com/en-us/health/medical/8-silent-signs-you-could-have-a-brain-tumor/ss-AAqQg9q?li=BBnb7Kz#image=1

What cannabis (marijuana) does to your bones

http://ushealthtimes.com/scientist-reveal-what-cannabis-does-to-your-bones/

False positives in mental status tests on polio survivors

http://www.papolionetwork.org/uploads/9/9/7/0/99704804/mental_status_exam_caution.pdf

Stop access aisle abuse

https://www.facebook.com/stopaccessaisleabuse/?hc_location=group

 

OTHER POLIO NEWSLETTERS

https://www.papolionetwork.org/

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

http://polioepic.org/wp-content/uploads/12-Dec-01-Jan-2018-Newsletter.pdf

http://snapsnv.org/

http://www.poliosurvivorsnetwork.org.uk/

 

A LITTLE BIT OF HUMOR

The driver said,‘No problem. Have at it.’ Billy gets into the driver’s seat and they head off down the highway.   A short distance away sat a rookie State Trooper operating his first speed trap.

The long black limo went by him doing 70 in a 55 mph zone.

The trooper pulled out and easily caught the limo and he got out of his patrol car to begin the procedure. The young trooper walked up to the driver’s door and when the glass  was rolled down, he was surprised to see who was driving.

He immediately excused himself and went back to his car and called his supervisor. He told the supervisor, ‘I know we are supposed to enforce the law….but I also know that important people are given certain courtesies. I need to know what I should do because I have stopped a very important person.’

The supervisor asked, ‘Is it the governor?’
The young trooper said, ‘No, he’s more important than that.’
The supervisor said,’Oh, so it’s the president.’

The young trooper said, ‘No, he’s even more important than that.’

The supervisor finally asked, ‘Well then, who is it?’

The young trooper said, ‘I think it’s Jesus, because he’s got Billy Graham for a chauffeur!’

 

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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