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:
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: [email protected]• 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: [email protected] 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.