September 2020

Our Mission: To Be in Service Providing Information to Polio Survivors, Post Polio Support Groups,

Survivor's Families and their Caregivers.

Bracing. “I saw something amazing on the internet . . . .”

What’s right for me?Dr. Marny Eulberg addresses this in a timely and experienced manner.

Braces have changed through the years – but are those new styles right for us?

She has given us a helpful approach – from both a professional

AND a personal perspective.

We are reading about the miracle of polio eradication –

piece by piece, bit by bit. August 25, 2020. The WHO announced the eradication of the wild poliovirus

in Africa. In 2019, we saw their announcement of the eradication of wild

poliovirus Type 3. It’s been a long, and arduous journey, but no one has quit. The

Global Polo Eradication Initiative (GPEI) has forged ahead with passion, patience

and a never ending perseverance. All the while, they have been developing an

infrastructure that is having an enormous impact on world health.

You have had lots of questions about the “Types” of polio.Dr. Richard Bruno, HD, PhD is with us to explain the differences

between the three types of polio.

The Story of the StorytellersFrom Carol Ferguson – polio survivor and member PA Polio Network Team.

In September, 2017, I received a phone call from a filmmaker employed at

Rotary International. She wanted to interview me for a short film to be shown on

World Polio Day. During that video call, I noticed something special about the

woman I was speaking with.

I was not “just” another person for her to interview. I was not “just” another

polio survivor. She was engaging, incredibly smart, passionate and above all,

truly cared about the subject matter we were discussing – the eradication of polio.

I was especially enamored when I discovered she had personally worked on the

highly effective short video “Why Zero Matters”.

I joked with her at the end of the call about turning things around, and my

PA Polio Survivors NetworkInformation and Inspiration

for All Polio Survivors and Their Families

Serving the Keystone State and Beyond

www.papolionetwork.org

.

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Passion, Patience and Perseverance

How The World Came Together To Fight The Paralytic Polio Virus Introduction: By Shawn Herron

When I was first approached writing this

story back in the spring of 2019, I let Carol

know that I didn't know much about polio. I

could see how the disease affected Carol’s

mobility, I could see how strongly she believed

in her cause, and after listening to her speak

about the work of Rotary International’s

storytellers, I sensed there may be a story there

as well.

I listened to Carol’s interviews, watched these storytellers’ videos, and came

away impressed with the information being conveyed. As I jotted notes, I kept

finding myself with more questions, like how the work of these storytellers fit into

the big picture, and how did this all begin? I knew the Gate’s Foundation was

involved somehow. Even though I had recently joined Rotary, I really didn't know

how they got involved, nor the March of Dimes before them. I began exploring the

past to educate myself on the world’s response. The more I learned, the more

remarkable this eradication effort seemed.

I had never given polio much thought before that. I had never felt threatened by

The Story of the Storytellers Continued . . .

interviewing her. Little did she know, I would be calling her two months later, as I

was traveling out to Evanston, Illinois to see my children. She asked if some of

her co-workers (all Rotary International communications employees) could be

included. “Sure” I said, “why not” ? I was looking forward to bringing home an

interesting article for this newsletter.

Ten minutes into the first of four interviews, I knew something special was

happening. As they told their stories and I fumbled with my recorder, a part of me

realized that I was observing something far more than I expected. Each had

personally been on one or more NID (National Immunization Days) experience(s).

Each had felt, first-hand the enormous truth to the efforts going into vaccinating

every child. I had experienced the first hand stories and seen the passion in the

eyes of the “story tellers” themselves. Rotary International’s focus on Disease

Prevention was no longer something they heard about from their management.

They had personally lived it and brought that passion and understanding back to

the office when they returned.

We are happy to be sharing the story that came as a result of that day.

“Passion, Patience and Perseverance” by Shawn Herron

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Passion, Patience and Perseverance (continued . . .)

the virus because I was born into a society where the vaccine was widely

disseminated and the spread of the virus had already been stopped.

I didn't remember polio being covered in any meaningful way back in school. I

figured that if I didn't know much about polio or the world’s response to eradicate

it, then there were probably others, like me, who didn't know much about this

history either.

This story has been written with this group of people in mind. Little did we

know that we’d be publishing this story in the midst of a new pandemic. Let's

look back to help us move forward. We should know our history, both good and

bad, so we can celebrate our good deeds and learn from our mistakes.

Carol did not intend to be a part of this story. At first, I didn't really expect to

include her either. But as the story took shape, I didn't know how to tell it

without her. The work of survivors is too essential. They are the ones who can

help later generations remember the realities that we would otherwise forget.

While the end of polio may be in sight, the ending has not been written. This is

no time to forget, especially with being so close to the finish line. While everyone

hopes we are on the verge of eliminating this disease, we can measure the polio

health crisis against future public health crises.

One can compare scientific aspects of health crises. How long did it take for

research to lead to vaccines? How effective were these vaccines?

Then there’s always the human element. What were the unknowns early on?

What was the public’s response?

Like any human story, the response to eradicating polio has not been perfect.

While everyone wants accountability, it’s human nature to want to blame others,

but time spent blaming could be time spent educating.

The Complete Story Passion, Patience and Perseverance

is too long for this newsletter in its entirety.

You can find it on the Polio Eradication Page of our website.

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Bracing – Getting the Proper Fit Q & A with Primary Care Physician

Dr. Marny Eulberg, MD

Question: I am 72 years old and have been suffering from PPS

for 4 yrs. Lately my ability to walk has deteriorated severely. I

wonder if I can use the DBS braces, which I saw in YouTube.

I live outside the US and these braces are not available here,

and I cannot find them on Ebay or Amazon. Are they an option I should

consider?

Answer: I appreciate your concise question but, in order to accurately make

reasonable medical advice I would need more detail. For you, as for all of us over

age 50, it is important to make sure that the worsening of your walking is not

due to some condition other than polio that would require a totally different

treatment than that for PPS. I would recommend that, rather than trying to solve

the problem by yourself, you consult with a physiatrist in your country/locale.

Post-Polio Health International’s Directory (www.post-polio.org) lists health

professionals with expertise in polio, from all over the world. Ex: In your case

there is an occupational therapist at Milbot—The Israel Center for Technology

and Accessibility. She may be able to help you locate a physiatrist/rehab

specialist in your area.

Let me start with some generalities concerning bracing for polio survivors:

• Braces (orthoses) can be helpful for many polio survivors but, at times, they

also may be more of an impediment than a help.

• Braces are most helpful for supporting a weak limb such as when a person has

foot drop and is tripping over their toes or when their knee buckles or is

unstable.

• Properly designed, a brace can also correct or partially correct deformities of

the foot, ankle, or knee.

• Some of the newer braces can provide “power” to increase forces when walking.

The Human Gait Institute, a non-profit organization developed by polio survivors,

has created a workbook that persons considering bracing for the first time or

considering using new kinds of bracing can use to help them decide what kind of

brace they might need or benefit from. It can be accessed at

www.humangaitinstitute.org and is listed under “Resources” and is titled

“Exploring Leg Bracing Options”.

• It must be remembered that, even though some braces now only weigh ounces,

they all add some weight to the limb that must be lifted with each step.

• They also will take up some space in the shoe. This can be helpful if the foot to

be braced is smaller than the other foot but may also mean that the brace wearer

will need to buy new larger shoes or mis-mated shoes.

Nearly all polio survivors have muscle atrophy of the affected limb so that the

size of their foot, calf, or thigh is much smaller than normal and therefore their

braces nearly always need to be custom made in order to fit and function well. 4

Bracing – Dr. Marny Eulberg (continued)

The braces available on the internet are made for persons with normal sized

limbs. They may come in small, medium, and large and left and right, but they

are NOT made with a small calf section and a different size thigh section that

would be needed to fit a person with a very small calf and a normal size thigh.

Additionally, I am not aware of any internet site, including Amazon, that will bill

one’s health insurance for the brace.

Certified orthotists (brace makers) have a minimum of 4 years of training with

most of the younger orthotists having at least a master’s degree in orthotics

and/or prosthetics. They are experts in evaluating gait abnormalities, what can

be done to correct those abnormalities, and know the advantages and limitations

of all the various materials that can be used to make a brace. The process of

making a custom brace involves making a cast of your leg and taking

precise measurements so that the brace will fit your body. Orthotists can bill

most insurances and will let you know in advance what portion you’d have to

pay.

It has been said that the doctor who treats him/herself has a fool for a patient.

That can apply to the polio survivor who tries to decide what kind of brace they

need. As a physician, I go to the orthotist with an idea of what I might need but

together we discuss the reasons why the orthotist believes a different design or a

brace made of different materials would work better for me. The

final product is rarely what I originally thought I needed!

On a final (and personal) note, I do have a Dynamic Bracing Solutions (DBS)

brace and am very satisfied with it because (in my case) a DBS short leg brace

keeps my knee from buckling; in a conventional brace I would need a long-leg

brace locked at the knee to keep my knee from collapsing forward.

There are only 3-4 orthotists in the world who are licensed to do the evaluation,

casting, and fitting of DBS braces and they all are in the United States. They are

not available via the internet because they are custom designed

and custom fit for each person which requires in-person evaluation

and measurements.

The fit must be very precise because there are no adjustable

straps or adjustable joints. The evaluation and casting process

takes 4-8 hours of hands-on work by the orthotist. The making of

the mold and fabrication process requires an additional 20-80

hours of detailed work and then the fitting and training in the use

of the DBS brace takes two to three days of one-on-one work with

the orthotist.

DBS braces can be very expensive. The cost is based on the

complexity of the problems to be solved but starts from a base

price of about US $8,000 for a single AFO to around US $15,000

for a single KAFO. Insurance rarely pays for DBS braces.

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Dr. Marny Eulberg

Bracing – Dr. Marny Eulberg (continued)

Do I recommend DBS orthoses to my patients? It depends on things such as

how they present physically, their financial resources, and their motivation – do

they have a willingness to persevere even when things get tough and do they have

the willingness and ability to stick with an exercise program for weeks to months.

When people start with the DBS brace, something happens that doesn't often

happen in the traditional orthotic world - and that's gait training, which is a real

challenge.

Patients have to unlearn gait patterns they've been using for 50 years or more.

Walking is so automatic. Unlearning a pattern that has basically become

unconscious takes a lot of work and can be frustrating.

The casting process -

Some of it is done with the patient

standing.

Orthotist working on a cast with blue buildups and

lines indicating where the upright “bars” will be

made.

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New brace training (in an informal

setting)

I saw a physical therapist about once a month for about 3 years, when I realized

how easy it is to backslide and revert to old walking patterns that, for years, kept

me (the polio survivor) walking safely albeit awkwardly.

I would recommend polio survivors consult with a rehabilitation professional

prior to getting a new brace. New orthotic materials and techniques are being

rapidly developed which may mean your rehab professional may not be familiar

with some of the newer devices and may have to do some research with you. The

best outcomes are when an orthotist, a physical therapist, a physician who knows

the patient well, AND the patient work together as a team!

Do you have a question for Dr. Eulberg? Feel free to email us:

papolionetwork@gmail.com

More about Bracing from Dr. Marny Eulberg and

Post-Polio Health International

Post-Polio Bracing

Questions To Ask The Orthotist (Bracemaker)

By Marny K. Eulberg, MD

1. What problem is the brace going to address? A Drop foot? A knee that is

unstable or buckles (collapses forward)? A deformity of foot, ankle, knee? A

painful joint? Or a combination of the above?

2. What are the credentials/qualifications of the brace maker?

3. Ask questions and get answers to YOUR satisfaction and level of

understanding - Examples:

“Explain to me how this brace will address/solve my particular problem(s)”

“Show me what it will look like”

“Can I try an off-the-shelf model or a sample so I can experience what it will be

like to wear?"

“If it will be on the leg I use for driving (or other important activity - depress

pedals on a piano, etc) how will it impact my ability to do those activities?”

“What choices of a brace do I have?”

“What are the pros and cons of each of these brace designs?”

“What kind of footwear can I wear with this brace?”

“Will I need a different size shoe than I am currently wearing?”

“Can I wear it without shoes?” (personal preference or cultural/religious

requirement in certain situations)

4. What about the care of the brace? Can it be worn in the water?

If there are joints, do they need to be oiled? If so, what kind of oil should I

use?

Are there springs/joints/screws that might break or fall out? If so, can I get

spare parts to have on hand and be taught how to do my own repairs? How do I

recognize a problem or impending problem with the brace? And what do I do if I

suspect a problem?

5. Will gait training be recommended as part of the program? If so, who should do

the gait training, what does it entail, etc?

6. How much will the brace cost? How much is my insurance likely to cover? How

much will I have to pay out of pocket?

7. Are there any warranties or guarantees?

8. What kind of follow-up is recommended? (Note: most braces DO require some

adjustments initially and over time)

Finally, technology is changing and your body may also change, especially if you

have post-polio syndrome, so it is a good idea to check in with an orthotist at least

once every 3-5 years.

Reprinted from Post-Polio Health (formerly called Polio Network News) with permission of Post-Polio Health

International (www.post-polio.org). Any further reproduction must have permission from copyright holder.7

An Important Article Update from Dr. Richard L. Bruno, HD, PhD

Preventing Complications in Polio Survivors

Undergoing Surgery (or) Receiving Anesthesia

Anesthesia is an important issue for many, many polio survivors.

Dr. Bruno made a significant edit in this article.

If you have it printed, please destroy your copy. The updated version is easily

available for printing and sharing (you will see 2020 in the footer).

You can find the revised article:

PA Polio Network Website – www.papolionetwork.org• The articles section of The Encyclopedia of Polio and PPS – under the

topic “Anesthesia”.

• On the Anesthesia Warning page.

• An important note: If you have the Anesthesia Warning Card with the

“scan” code, the updated article was automatically available immediately

upon Dr. Bruno’s edit.

Dr. Bruno’s Website: www.postpolioinfo@aol.com• There is a direct link to the Encyclopedia of Polio and PPS

Three Types of Polio?

A Bruno Byte

From Dr. Richard L. Bruno, HD, PhDDirector, International Centre for Polio Education

Question: If a person had polio can that person get it again or be a carrier?

And is it true that there are three polioviruses causing different types of polio?

Dr. Bruno’s Response: There are three different poliovirus types: Type I, Type II

and Type III. You could be infected by them at the same time or at different times.

Each poliovirus type requires a separate polio vaccine made from each of the

three viruses for you to generate the specific antibodies needed to counteract

each type. So if you had a given type of poliovirus you would have enough

antibodies not to get sick again or be a carrier of that poliovirus type.

Is it true that each of the three polioviruses caused a different type of polio? No.

But there is confusion when people talk about “three types of polio: bulbar,

spinal and bulbar-spinal.” The “three types” refers to the clinical effects of any

poliovirus, affecting breathing and swallowing (“bulbar”), limb paralysis (“spinal”)

or both bulbar and spinal symptoms (“bulbar-spinal”).

The Complete Inventory of Dr. Bruno’s updated work is easily available in the

Encyclopedia of Polio and PPS

https://www.papolionetwork.org/encyclopedia.html

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More about the Three Types of Polio from

The Polio Paradox:

Everyone who had paralytic polio had some degree of damage to their spinal

cords and brainstems (the “bulb” of the brain). So everyone who had paralytic

polio, and many who had polio but showed no symptoms at all (often referred to

as “non-paralytic polio”), had bulbar and spinal polio.

“There isn’t just one poliovirus. There are three different types, each named

for the location where it was found, either in a city or inside a person: Brunhilde,

Lansing and Leon. The three types are different because your immune system

makes a different antibody for each. But they are also different in terms of how

common they are and their ability to cause harm.”

“Almost all of history’s polio epidemics have been the result of Type 1

poliovirus, which caused leg, arm and sometimes breathing muscle paralysis.

The Type II virus seems to have been least likely to cause paralysis but may have

damaged the ‘stem’ at the bottom of the brain just above the spinal cord and was

responsible for huge outbreaks of ‘nonparalytic’ polio and something called ‘The

Summer Grippe’. Type III poliovirus, the most rare, also caused leg and arm

paralysis but was most likely to have produced so-called ‘bulbar’ polio in which

the bulb or stem of the brain was severely damaged. This damage caused

difficulties with swallowing, breathing and blood pressure that were sometimes

fatal.”

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What It’s Like To Survive Through

Two PandemicsWe were delighted to be interviewed by

Paul Engleman from Rotary Intentional

for this article.

Paul is a true professional who is thorough and

patient. He too is a polio survivor.

This story is titled "Tough Cookies" in the new

Rotary Magazine. We're grateful to have been

able to talk about our work.

Virtual Support Group Meetings have become quite popular

By using the friendly “Zoom” format, polio survivors are able to

connect with each other from all over the US and Abroad.

Our PA Network team member Deb Stambaugh is a “regular”

with her support group/fellow survivor friends in Canada.

Are you looking to try a meeting?

You can find our “Zoom” Support Group Directory

in the Survivor Connections section of our website.

Polio Eradication News

August 25, 2020 – the World Health Organization announced the

eradication of the Wild Poliovirus in the continent of Africa.• “1988 – The great Nelson Mandela, with Rotary International launched the

‘Kick Polio Out of Africa’ Campaign.”

• “Reaching every last African child with the polio vaccine has required countless acts

of extraordinary bravery.”

• “This is a story of innovation and of communities coming together towards one,

unified goal.”

• “The polio eradication program has a huge footprint of expertise and infrastructure.”

• “As we speak, the polio infrastructure is being used to respond to the COVID19

response.”

• “We must take the lessons learned and best practices from eradicating the wild

poliovirus to achieve Africa’s other public health goals.”

The video: Africa Kicks Out Wild Poliovirus is in our Polio Eradication Video Library

www.papolionetwork.org/end-polio-now-ppsn-video-library

Just 11 months ago, we saw the eradication of wild poliovirus Type 3.

Only Type 1 poliovirus remains.

Through Team Survivor, we are proud to be actively

supporting these eradication efforts.

Are you a Rotarian? You ARE a member of Team Survivor.

Send us your District, Club and photo.

Our passion to eradicate this disease spreads far and wide.

We have become part of the solution. Join Us.

www.papolionetwork.org/team-survivor

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Unless noted with the article, feel free to copy and share what you see. Always give credit to

the original source, include a visible, working link to our website: www.papolionetwork.org

and email us a copy of what you “share”. THANKS.

Always feel free to contact us.

Contact us: papolionetwork@gmail.com 215-858-4643PO Box 557, Doylestown, Pa. 18901We are a Registered 501C3 organization 11

With gratitude to the

Boca Area Post Polio Support group,

we are able to offer their video interview

Aging with Post-Polio Syndrome

with Dr. Carol Vandenakker-Albanese, MD

on our website.

For those not familiar with

Dr. Vandenakker-Albanese, her biography is

easily available. When you see her name

highlighted, just “click”.

We have previously published two articles and a video by Dr. Vandenakker

that are definitely worth the re-read/watch.

• Medical Management of Post-Polio Syndrome has experienced guidelines that

can be very effective when we are talking with our health care professionals.

• Posture Maintenance – Although there is no audio to accompany it, you can see

through Dr. Vandenakker-Albanese’s slides the importance of following these

guidelines and how appropriate posture can reduce pain.

• Components of Comprehensive Post-Polio Management is the presentation she

made at the Post-Polio Health International’s worldwide conference in 2014.