You can sign up for their regular emails and receive this information directly from them:
www.post-polio.org and www.polio-place.org
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www.post-polio.org and www.polio-place.org
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COVID-19 Vaccine Information
for Polio Survivors From the PHI Medical Advisory Committee Available for Download and printing. |
We're Still HERE !
2021 Winners
2021 Winners
Brian refers to these documents in his talk. Just "Click" on the image to access and download.
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PHI is pleased to announce the winner of the 2020 "WE'RE STILL HERE!" contest: Paul Jeganathan, Kirkland, Washington Congratulations to Paul and a big thank you to everyone who participated in the contest. |
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2020 Winners
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PHI We're Still Here Essay Contest Runners Up
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PHI’S NEW WEBSITE IS HERE!
PHI’s completely rebuilt website is now online. The new site can be found at the same URL as the old,
www.post-polio.org.
We’ve listened to many of your suggestions as to how we could improve the old site and hope the new site will provide a more user-friendly experience and aid your search for post-polio information and resources.
PHI’s completely rebuilt website is now online. The new site can be found at the same URL as the old,
www.post-polio.org.
We’ve listened to many of your suggestions as to how we could improve the old site and hope the new site will provide a more user-friendly experience and aid your search for post-polio information and resources.
The Post-Polio Directory
- One of the biggest changes to the new site will be the Post-Polio Directory. The printable PDF will remain available, but we believe the new interactive version will make it easier to quickly find health professionals, support groups and financial resources in your area. The new online tool actually combines the traditional Post-Polio Directory and PHI’s newest resource, A Polio Survivor’s Guide: Funding Resources for Medical & Adaptive Equipment .
- When you navigate to the page, enter your city in the location search box (or hit the button at the end of the search box to have it automatically detect your location) and the map will display a list of nearby results within a customizable range. Map markers will differentiate between health professionals, support groups and funding resources. Or if you prefer, click directly on the map to find resources in other parts of the country or around the globe.
- Rather than sending you to a separate “store,” the new site features a one-step process for renewing your membership or making a donation. If you are renewing your membership, you can hit the “Join” button in the menu. You’ll be taken to a checkout page with information about the various PHI Membership levels. All you have to do is enter your mailing address, select your desired membership level, enter your payment information and hit “Submit.” Prefer sending in a check? A printable membership form is available, as well.
- All of the same trusted information from the old site is still there. Take a look around and discover resources you perhaps had overlooked before. Let us know your thoughts. Send any comments or suggestions to info@post-polio.org.
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Post-Polio Health International has relocated our office in St. Louis, Missouri.
Our new address is:
Post-Polio Health International, 50 Crestwood Executive Center #440, St. Louis, MO 63126
Please contact us with any questions, comments or concerns at info@post-polio.org
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Post-Polio Health International has relocated our office in St. Louis, Missouri.
Our new address is:
Post-Polio Health International, 50 Crestwood Executive Center #440, St. Louis, MO 63126
Please contact us with any questions, comments or concerns at info@post-polio.org
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The Post-Polio Directory of Support Groups and Health Professionals.
You can view the 2020 Updated Post-Polio Directory HERE Updates can be sent to info@post-polio.org
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You can view the 2020 Updated Post-Polio Directory HERE Updates can be sent to info@post-polio.org
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First Quarter 2020
Here are some of the many exciting changes on the horizon for PHI:
Earlier this year, PHI reached an agreement with the University of Massachusetts Amherst in which UMass agreed to permanently house our extensive archival materials, amassed over the past six decades. We are pleased that they will be joining one of the country’s premier disability-related collections. In addition, they will be digitizing and making much of this collection available online. We are excited that our members, researchers and the general public will soon have access to these valuable materials.
PHI is also in the process of building a brand new website to better serve you. At PHI, we want you to know that not only are we here for you, but we hear you. We feel the frustration that many of you have had as you struggled to locate specific information on a site that is not always the easiest to navigate. We are building the new website in the hope of providing a more streamlined, better overall user experience. We expect the new website to be completed and online by spring of 2020.
In the same vein, we have updated or are in the process of updating and simplifying many of our forms. You may have already noticed changes to your membership renewal and donation forms. We recently created a new brochure to more clearly explain to the public and prospective members who we are and what we do.
We are also revamping our social media outreach. PHI recently created a new account on Instagram. The account will post a mix of historical tidbits, highlights from our archives, current happenings in the post-polio community, and updates on what PHI is up to. Instagram will not only allow us to connect with those unfamiliar with our organization, it will allow us to communicate with our current members in a new, visually pleasing style. Follow us at @postpoliohealth.
One thing that won’t change, however, is our commitment to bringing you the same trusted information and advice that we’ve been providing you for the past six decades.
Our work here would not be possible without members like you. Post-Polio Health International, including International Ventilator Users Network, depends on the generous financial support of our Members.
Please consider a year-end donation to help PHI and IVUN continue our crucial mission of enhancing the lives and independence of polio survivors and home ventilator users.
PHI is also in the process of building a brand new website to better serve you. At PHI, we want you to know that not only are we here for you, but we hear you. We feel the frustration that many of you have had as you struggled to locate specific information on a site that is not always the easiest to navigate. We are building the new website in the hope of providing a more streamlined, better overall user experience. We expect the new website to be completed and online by spring of 2020.
In the same vein, we have updated or are in the process of updating and simplifying many of our forms. You may have already noticed changes to your membership renewal and donation forms. We recently created a new brochure to more clearly explain to the public and prospective members who we are and what we do.
We are also revamping our social media outreach. PHI recently created a new account on Instagram. The account will post a mix of historical tidbits, highlights from our archives, current happenings in the post-polio community, and updates on what PHI is up to. Instagram will not only allow us to connect with those unfamiliar with our organization, it will allow us to communicate with our current members in a new, visually pleasing style. Follow us at @postpoliohealth.
One thing that won’t change, however, is our commitment to bringing you the same trusted information and advice that we’ve been providing you for the past six decades.
Our work here would not be possible without members like you. Post-Polio Health International, including International Ventilator Users Network, depends on the generous financial support of our Members.
Please consider a year-end donation to help PHI and IVUN continue our crucial mission of enhancing the lives and independence of polio survivors and home ventilator users.
An Important New Resource from PHI
From Executive Director Brian Tiburzi
Living well with a physical disability in the United States is an expensive proposition. Most medical insurance coverage is very limited, sometimes nonexistent, for expenses needed to acquire necessary medical equipment, even ventilators for people who are unable to breathe adequately or wheelchairs for people unable to walk. “Medically necessary” criteria for coverage are not uniform between plans, co-pays or coverage limitations can be burdensome and spending limitations often lead to poor quality items. Almost no insurance plans contribute to costs for architectural modifications of homes, vehicles, clothing or adaptive equipment that could increase one’s independence, productivity and/or Quality of Life. Consequently, many US citizens with physical impairments feel like they pay an “American surtax on disability.”
PHI, with assistance from the University of Michigan Department of Physical Medicine and Rehabilitation and University of California Davis Department of Physical Medicine and Rehabilitation, have compiled a directory of funding resources from around the country for medical and adaptive equipment. The project was completed by a team of investigators coordinated by PHI board member Sunny Roller with the goal of compiling a list of potential resources available to assist people with disabilities obtain the adaptive medical and rehabilitative equipment and environmental modifications they determine that they need. Besides doing a deep search of the internet, the team reached out to a multiple consumer and professional networks. The end result is a list of valuable resources organized by state that any polio survivor can have access to.
View the new directory, A Polio Survivor’s Guide: Funding Resources for Medical and Adaptive Resources.
PHI, with assistance from the University of Michigan Department of Physical Medicine and Rehabilitation and University of California Davis Department of Physical Medicine and Rehabilitation, have compiled a directory of funding resources from around the country for medical and adaptive equipment. The project was completed by a team of investigators coordinated by PHI board member Sunny Roller with the goal of compiling a list of potential resources available to assist people with disabilities obtain the adaptive medical and rehabilitative equipment and environmental modifications they determine that they need. Besides doing a deep search of the internet, the team reached out to a multiple consumer and professional networks. The end result is a list of valuable resources organized by state that any polio survivor can have access to.
View the new directory, A Polio Survivor’s Guide: Funding Resources for Medical and Adaptive Resources.
Fall, 2019
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WE’RE STILL HERE! week for 2019 is right around the corner. Help make it a success by going out and spreading the word about the importance of vaccination. You have no doubt seen stories pop up in the new this year about measles outbreaks in New York, Los Angeles and other cities. Through July 25, the CDC has confirmed 1,164 cases this year—for a vaccine-preventable disease that had been declared eliminated in the US in the year 2000.
Vaccination rates remain high overall in the US, but vaccine exemption rates among infants and school-aged children have been quietly rising, creating pockets of unimmunized individuals that put themselves |
and others at risk. Some states have begun to consider revoking non-medical exemptions. Too many people these days underestimate the threat of vaccine-preventable diseases because they have no firsthand knowledge of their effects. In one sense, vaccines have become a victim of their own success. Most people have no idea what it’s like to contract polio, rubella or the mumps.
“But what role can I play?” you may be asking.
PHI is encouraging you to use WE’RE STILL HERE! week to approach local media outlets, schools or other community groups to talk about your experience and why vaccinating your kids is important. PHI has created a guide below to help you prepare.
So get out there and show them that WE’RE STILL HERE!
“But what role can I play?” you may be asking.
PHI is encouraging you to use WE’RE STILL HERE! week to approach local media outlets, schools or other community groups to talk about your experience and why vaccinating your kids is important. PHI has created a guide below to help you prepare.
So get out there and show them that WE’RE STILL HERE!
JOIN IN THE DISABILITY READATHON
October 1st to October 31st
This event is meant to be fun - as long as you’re reading about disability, you are officially part of the readathon! Change the categories or alter any of the challenges to make them more accessible for you. This is not a contest of how many books you can read, but it is our way of highlighting the importance of disability in media.
Blog, vlog, tweet, and share some pictures on Instagram of your reading experience so we can bask in your excitement all month! We'll also publish our own videos to join in the fun.
Make sure to use the #DisabilityReadathon hashtag so we know where to find your content - and we’ll share it on our social media posts! This is optional, but encouraged.
There are prizes for folks who post on social media using the hashtag. These prizes include: a $50 gift card to a book shop of your choice, tote bags, 1” buttons, and more to be announced!
October 1st to October 31st
This event is meant to be fun - as long as you’re reading about disability, you are officially part of the readathon! Change the categories or alter any of the challenges to make them more accessible for you. This is not a contest of how many books you can read, but it is our way of highlighting the importance of disability in media.
Blog, vlog, tweet, and share some pictures on Instagram of your reading experience so we can bask in your excitement all month! We'll also publish our own videos to join in the fun.
Make sure to use the #DisabilityReadathon hashtag so we know where to find your content - and we’ll share it on our social media posts! This is optional, but encouraged.
There are prizes for folks who post on social media using the hashtag. These prizes include: a $50 gift card to a book shop of your choice, tote bags, 1” buttons, and more to be announced!
MORE ON VACCINES
PHI sent out its own press release on the topic earlier this summer. You may read a copy online here.
National Geographic published a good article a couple of weeks ago,
“The world before vaccines is a world we can’t afford to forget.” You might pass it along to your members, as it would make good background reading for anyone participating in WSH 2019.
The American Society for Microbiology also published an article about two lesser known but important contributors to the development of the polio vaccine – Isabel Morgan and Dorothy Horstmann (left). The article, “Forging the Trail for Polio Vaccination: Isabel Morgan and Dorothy Horstmann,” details each of these remarkable women’s contribution to the understanding of the polio virus and eventual development of a vaccine. For those wanting to learn more, you can find additional information in the People section of Polio Place.
PHI sent out its own press release on the topic earlier this summer. You may read a copy online here.
National Geographic published a good article a couple of weeks ago,
“The world before vaccines is a world we can’t afford to forget.” You might pass it along to your members, as it would make good background reading for anyone participating in WSH 2019.
The American Society for Microbiology also published an article about two lesser known but important contributors to the development of the polio vaccine – Isabel Morgan and Dorothy Horstmann (left). The article, “Forging the Trail for Polio Vaccination: Isabel Morgan and Dorothy Horstmann,” details each of these remarkable women’s contribution to the understanding of the polio virus and eventual development of a vaccine. For those wanting to learn more, you can find additional information in the People section of Polio Place.
FLYING WITH A WHEELCHAIR
The world’s airlines are slowly waking up to the fact that disabled passengers are a major and increasingly valuable segment of their customer base. At the industry’s recent annual meeting, air carriers committed to improving the travel experience for disabled passengers and reducing the number of damaged wheelchairs and mobility devices. New Mobility has more.
The world’s airlines are slowly waking up to the fact that disabled passengers are a major and increasingly valuable segment of their customer base. At the industry’s recent annual meeting, air carriers committed to improving the travel experience for disabled passengers and reducing the number of damaged wheelchairs and mobility devices. New Mobility has more.
Summer, 2019
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National Disability Independence Day on July 26th
commemorated the signing of the Americans with Disabilities Act (ADA) on July 26th, 1990. The Americans with Disabilities Act provides protection from employment discrimination as well as better access to goods, services, and communications for people with disabilities. |
March, 2019
From PHI Executive Director Brian M. Tiburzi -
The Post-Polio Directory has been newly updated for 2019 and can be accessed online on both of our websites. On www.post-polio.org go to www.post-polio.org/net/pdirhm.html. Click on the image of the Directory to open. On Polio Place it can be found by clicking on the menu tab on the right or at www.polioplace.org/post-polio-directory. If you know of a doctor that you would like to nominate for inclusion in the directory or if you attend a support group that is not listed, send us a message at info@post-polio.org.
Likewise, IVUN’s Resource Directory for Ventilator-Assisted Living has also been updated for 2019 and can be accessed from the home page of IVUN’s website, www.ventnews.org.
Also:
A polio survivor recently donated to PHI several pairs of women’s athletic and dress shoes. The shoes come in sizes 5½ and 6 with a 2” lift on the left shoe. If interested, contact us at info@post-polio.org.
The Atlanta Post-Polio Association is holding a Polio Survivors' Conference
It will be held on Saturday, May 4th in Atlanta. Registration is required.
For more information, please visit https://www.atlantapostpolio.com/
OPPORTUNITY TO PARTICIPATE IN RESEARCH
A new study concerning acute flaccid myelitis (AFM) and polio is being conducted by researchers at Johns Hopkins. They are currently recruiting polio survivors to participate in the study.
The objective of the study is described as follows: “We are trying to understand why some people get better quickly after an infection and others may have breathing problems, and still others may have neurologic symptoms or paralysis. We would like to compare the cells and DNA of persons with severe symptoms with those who may have been exposed to the same virus but did not have the same severe outcomes. We plan to compare the DNA sequence of people with paralytic poliomyelitis to the DNA sequence of people with acute flaccid myelitis (AFM) following a viral infection diagnosed from 2012-present. We are looking for genetic variants that both groups share that can help explain why a virus can cause mild symptoms in some people (respiratory symptoms or non-paralytic polio), but severe outcomes like paralysis in others like you have experienced.”
Polio survivors are encouraged to participate. You will be asked to fill-out a questionnaire and submit a saliva sample by mail.
Contact information:
Dr. Priya Duggal (Co-Principal Investigator) E-mail: pduggal@jhu.edu Phone: 410-955-1213
Betsy Dee (Research Assistant) E-mail: edee1@jhu.edu Phone: 410-614-0146
LONELINESS AND AGING
A new poll shows many older adults, especially those with health issues, feel isolated. The newfindings come from the National Poll on Healthy Aging, conducted by the University of Michigan Institute for Healthcare Policy and Innovation, and sponsored by AARP and Michigan Medicine, U-M’s academic medical center.
Poll director Preeti Malani, MD, who has training in caring for older adults, notes that a growing body of research points to strong connections between health and loneliness – and to positive effects on health from increased social contact through volunteering, taking part in religious or community groups, and other activities.
Are you or someone you know feeling lonely or isolated? The AARP has launched a program, Connect2Affect, that can help older Americans connect to others in their communities.
1969-70 WHEELCHAIR BASKETBALL CHAMPS HONORED
Players from the 1969-70 University of Illinois wheelchair basketball national championship team were honored recently before the start of this year’s national championship game held at the State Farm Center on campus. Champaign’s News-Gazette interviewed two polio survivors, Kim Pollock and Richard Feltes, about their memories of playing for that team.
And check out the next generation following in their footsteps. Birmingham’s WVTM featured a story on a young girl who originally contracted polio in China and is now pursuing her wheelchair basketball dreams.
The Post-Polio Directory has been newly updated for 2019 and can be accessed online on both of our websites. On www.post-polio.org go to www.post-polio.org/net/pdirhm.html. Click on the image of the Directory to open. On Polio Place it can be found by clicking on the menu tab on the right or at www.polioplace.org/post-polio-directory. If you know of a doctor that you would like to nominate for inclusion in the directory or if you attend a support group that is not listed, send us a message at info@post-polio.org.
Likewise, IVUN’s Resource Directory for Ventilator-Assisted Living has also been updated for 2019 and can be accessed from the home page of IVUN’s website, www.ventnews.org.
Also:
A polio survivor recently donated to PHI several pairs of women’s athletic and dress shoes. The shoes come in sizes 5½ and 6 with a 2” lift on the left shoe. If interested, contact us at info@post-polio.org.
The Atlanta Post-Polio Association is holding a Polio Survivors' Conference
It will be held on Saturday, May 4th in Atlanta. Registration is required.
For more information, please visit https://www.atlantapostpolio.com/
OPPORTUNITY TO PARTICIPATE IN RESEARCH
A new study concerning acute flaccid myelitis (AFM) and polio is being conducted by researchers at Johns Hopkins. They are currently recruiting polio survivors to participate in the study.
The objective of the study is described as follows: “We are trying to understand why some people get better quickly after an infection and others may have breathing problems, and still others may have neurologic symptoms or paralysis. We would like to compare the cells and DNA of persons with severe symptoms with those who may have been exposed to the same virus but did not have the same severe outcomes. We plan to compare the DNA sequence of people with paralytic poliomyelitis to the DNA sequence of people with acute flaccid myelitis (AFM) following a viral infection diagnosed from 2012-present. We are looking for genetic variants that both groups share that can help explain why a virus can cause mild symptoms in some people (respiratory symptoms or non-paralytic polio), but severe outcomes like paralysis in others like you have experienced.”
Polio survivors are encouraged to participate. You will be asked to fill-out a questionnaire and submit a saliva sample by mail.
Contact information:
Dr. Priya Duggal (Co-Principal Investigator) E-mail: pduggal@jhu.edu Phone: 410-955-1213
Betsy Dee (Research Assistant) E-mail: edee1@jhu.edu Phone: 410-614-0146
LONELINESS AND AGING
A new poll shows many older adults, especially those with health issues, feel isolated. The newfindings come from the National Poll on Healthy Aging, conducted by the University of Michigan Institute for Healthcare Policy and Innovation, and sponsored by AARP and Michigan Medicine, U-M’s academic medical center.
Poll director Preeti Malani, MD, who has training in caring for older adults, notes that a growing body of research points to strong connections between health and loneliness – and to positive effects on health from increased social contact through volunteering, taking part in religious or community groups, and other activities.
Are you or someone you know feeling lonely or isolated? The AARP has launched a program, Connect2Affect, that can help older Americans connect to others in their communities.
1969-70 WHEELCHAIR BASKETBALL CHAMPS HONORED
Players from the 1969-70 University of Illinois wheelchair basketball national championship team were honored recently before the start of this year’s national championship game held at the State Farm Center on campus. Champaign’s News-Gazette interviewed two polio survivors, Kim Pollock and Richard Feltes, about their memories of playing for that team.
And check out the next generation following in their footsteps. Birmingham’s WVTM featured a story on a young girl who originally contracted polio in China and is now pursuing her wheelchair basketball dreams.
January-February 2019
Thank you PHI for publishing "Pa. Polio Survivor's Network - How we Began" in the Winter 2019 Newsletter
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Another excellent piece on polio survivor Paul Alexander. Paul is one of the last few polio survivors that lives in an iron lung. |
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Rare Disease Day takes place on the last day of February each year.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
Research Study Participation
You are invited to participate in a research study entitled, “Falls and Fear of Falling in Adults who Require Wheelchairs for Locomotion.”
To participate you must be an adult who:
• Is at least 18 years old
• Has a neurological diagnosis (such as but not limited to post-polio syndrome, spinal cord injury, multiple sclerosis) for at least 6 months
• Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
• Has a computer with internet access.
• Is able to read and understand English.If you are interested in completing an anonymous on-line survey about your medical condition, falls, risk of falling, and fear of falling, please click on this link
It will take you up to about 20 minutes to complete it. People who complete the survey will be eligible for a drawing for a $20 gift card.You may contact Carolyn Da Silva, PT, DSc at cdasilva@twu.edu or 713-794-2087 for more information or questions. She is a professor in the School of Physical Therapy at Texas Woman's University and physical therapist at the post-polio out-patient clinic at TIRR Memorial Hermann Rehabilitation and Research in Houston, Texas.
You are invited to participate in a research study entitled, “Falls and Fear of Falling in Adults who Require Wheelchairs for Locomotion.”
To participate you must be an adult who:
• Is at least 18 years old
• Has a neurological diagnosis (such as but not limited to post-polio syndrome, spinal cord injury, multiple sclerosis) for at least 6 months
• Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
• Has a computer with internet access.
• Is able to read and understand English.If you are interested in completing an anonymous on-line survey about your medical condition, falls, risk of falling, and fear of falling, please click on this link
It will take you up to about 20 minutes to complete it. People who complete the survey will be eligible for a drawing for a $20 gift card.You may contact Carolyn Da Silva, PT, DSc at cdasilva@twu.edu or 713-794-2087 for more information or questions. She is a professor in the School of Physical Therapy at Texas Woman's University and physical therapist at the post-polio out-patient clinic at TIRR Memorial Hermann Rehabilitation and Research in Houston, Texas.
A Note from PHI Director Brian Tiburzi
Look for Post-Polio Health, our quarterly newsletter, in your mailbox in mid-February. This issue features an article by Dr. Maynard on Acute Flaccid Myelitis (AFM) and how polio survivors can help those affected by it. Other articles include an update on Stand Proud’s work aiding polio survivors in the Democratic Republic of the Congo, an article about
the work Pennsylvania Polio Survivors Network is doing, our regular column from Drs. Machell and Olkin, and more!
Do you have topics you would like us to explore in Post-Polio Health? Send your ideas to editor@post-polio.org.
Look for Post-Polio Health, our quarterly newsletter, in your mailbox in mid-February. This issue features an article by Dr. Maynard on Acute Flaccid Myelitis (AFM) and how polio survivors can help those affected by it. Other articles include an update on Stand Proud’s work aiding polio survivors in the Democratic Republic of the Congo, an article about
the work Pennsylvania Polio Survivors Network is doing, our regular column from Drs. Machell and Olkin, and more!
Do you have topics you would like us to explore in Post-Polio Health? Send your ideas to editor@post-polio.org.
Winter Weather
With a good portion of the country dealing with extreme temperatures this week, it might be a good idea to highlight some winter safety tips.Paraplegia News highlighted some of the problems that might arise regarding accessible parking and snow in an article entitled, “Snow Plow Problems.” The article lays out actions you can take in advance and how to deal with problems when they arise. You might also check out“Winter Safety Tips for People with Disabilities” from Easter seals. In the event of a major winter storm, you may find some useful resources on the CDC’s section for Disability and Health Emergency Preparedness.
With a good portion of the country dealing with extreme temperatures this week, it might be a good idea to highlight some winter safety tips.Paraplegia News highlighted some of the problems that might arise regarding accessible parking and snow in an article entitled, “Snow Plow Problems.” The article lays out actions you can take in advance and how to deal with problems when they arise. You might also check out“Winter Safety Tips for People with Disabilities” from Easter seals. In the event of a major winter storm, you may find some useful resources on the CDC’s section for Disability and Health Emergency Preparedness.
New Books
Phyllis Dolislager has published a 2nd edition of her book, Who Hit the Down Button?: Life with a Chronic Illness or Disabilty. The new edition contains an update to the Profiles section, which now includes profiles of Bruce Sachs, Dianne Dych-Sachs and Maureen Sinkule.
A Pound of Kindness is a true story from the childhood of Dave Clark, the only professional baseball player to pitch from crutches, A National Hero of Sports winner, and an advocate for children with differing abilities. Having worked with Dave for a number of years through their Disability, Dream, and Do sports events, Doug J. Cornfield wrote A Pound of Kindness to share with children and parents alike the enduring power of a simple, thoughtful act.
Restored Ida Lupino Film Released
MoMA this week is presenting the world premiere theatrical run of IdaLupino’s Never Fear (aka The Young Lovers) (1950), newly restored from the original camera and soundtrack negatives. Never Fear is the semi-autobiographical tale of a dancer who contracts polio and struggles to recover physically and emotionally. “The film’s unusually hard-eyed realism was born of Lupino’s own dark memories of polio as an aspiring teenage actress, as well as her use of documentary locations and nonprofessional actors—most tenderly in the famous wheelchair square dance filmed (by veteran John Ford cinematographer Archie Stout) with actual rehab patients at the Kabat-Kaiser Institute in Santa Monica.”
Phyllis Dolislager has published a 2nd edition of her book, Who Hit the Down Button?: Life with a Chronic Illness or Disabilty. The new edition contains an update to the Profiles section, which now includes profiles of Bruce Sachs, Dianne Dych-Sachs and Maureen Sinkule.
A Pound of Kindness is a true story from the childhood of Dave Clark, the only professional baseball player to pitch from crutches, A National Hero of Sports winner, and an advocate for children with differing abilities. Having worked with Dave for a number of years through their Disability, Dream, and Do sports events, Doug J. Cornfield wrote A Pound of Kindness to share with children and parents alike the enduring power of a simple, thoughtful act.
Restored Ida Lupino Film Released
MoMA this week is presenting the world premiere theatrical run of IdaLupino’s Never Fear (aka The Young Lovers) (1950), newly restored from the original camera and soundtrack negatives. Never Fear is the semi-autobiographical tale of a dancer who contracts polio and struggles to recover physically and emotionally. “The film’s unusually hard-eyed realism was born of Lupino’s own dark memories of polio as an aspiring teenage actress, as well as her use of documentary locations and nonprofessional actors—most tenderly in the famous wheelchair square dance filmed (by veteran John Ford cinematographer Archie Stout) with actual rehab patients at the Kabat-Kaiser Institute in Santa Monica.”
November, 2018
"We're Still Here" Essay Contest Winners
Diana Sprague - First-Place
Mary Herness - 1st Runner Up
Rita McGovern - 2nd Runner Up
Corina Zalace - 3rd Runner Up
Mary Ellen Stan - 4th Runner-Up
Diana Sprague - First-Place
Mary Herness - 1st Runner Up
Rita McGovern - 2nd Runner Up
Corina Zalace - 3rd Runner Up
Mary Ellen Stan - 4th Runner-Up
Memorabilia
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Call them artifacts or memorabilia or keepsakes, these items visually record the history of having polio, treating acute poliomyelitis, developing vaccines and the effort to eradicate acute polio worldwide. Take a look at www.polioplace.org/history/artifacts/browse |
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September, 2018
MANAGING PAIN
When I met recently with members of Post-Polio Canada, the topic on many people’s minds seemed to be how to deal with post-polio pain. While pain management can sometimes be a difficult issue to get a handle on, Healthy Aging RRTC has published a factsheet that might help give you a start.
The fact sheet, “How to Manage Disability-Related Pain as You Age,”discusses different types of pain, how to maintain a healthy lifestyle, seeking help, pain management, self-management, different types of treatment including medications and complementary therapies, and additional resources. The full library of factsheets is available from the project’s website.
When I met recently with members of Post-Polio Canada, the topic on many people’s minds seemed to be how to deal with post-polio pain. While pain management can sometimes be a difficult issue to get a handle on, Healthy Aging RRTC has published a factsheet that might help give you a start.
The fact sheet, “How to Manage Disability-Related Pain as You Age,”discusses different types of pain, how to maintain a healthy lifestyle, seeking help, pain management, self-management, different types of treatment including medications and complementary therapies, and additional resources. The full library of factsheets is available from the project’s website.
OPIOIDS AND PAIN
The Washington Post this summer published an article, “Amid the opioid crisis, some seriously ill people risk losing drugs they depend on,” that looked at how efforts to combat opioid abuse had affected those who rely on them for the management of chronic pain. The article focuses on Julie Anne Feinstein, a polio survivor and Oregon resident who relies on opioids to control her pain.
The article takes a nuanced approach, giving voice to those who believe chronic pain sufferers are “collateral damage” in the effort to fight opioid abuse and those who believe that even those who use opioids for legitimate purposes should be wary of addiction and overdose and should look for alternatives.
At PHI, we have heard from several people who have run into problems while attempting to refill their prescriptions for opioids, which they view as an important component of their pain management strategy. We have also heard from those who have resisted efforts by their doctors to prescribe opioids for treatment of their post-polio pain, citing the way the drugs make them feel and their fears of addiction. We recognize that managing chronic pain is a difficult endeavor and that polio survivors have complex medical needs that often defy a one-size-fits-all approach.
We’d like to hear from you. What has been your experience?
Send an email to info@post-polio.org or give us a call at 314-534-0475.
The Washington Post this summer published an article, “Amid the opioid crisis, some seriously ill people risk losing drugs they depend on,” that looked at how efforts to combat opioid abuse had affected those who rely on them for the management of chronic pain. The article focuses on Julie Anne Feinstein, a polio survivor and Oregon resident who relies on opioids to control her pain.
The article takes a nuanced approach, giving voice to those who believe chronic pain sufferers are “collateral damage” in the effort to fight opioid abuse and those who believe that even those who use opioids for legitimate purposes should be wary of addiction and overdose and should look for alternatives.
At PHI, we have heard from several people who have run into problems while attempting to refill their prescriptions for opioids, which they view as an important component of their pain management strategy. We have also heard from those who have resisted efforts by their doctors to prescribe opioids for treatment of their post-polio pain, citing the way the drugs make them feel and their fears of addiction. We recognize that managing chronic pain is a difficult endeavor and that polio survivors have complex medical needs that often defy a one-size-fits-all approach.
We’d like to hear from you. What has been your experience?
Send an email to info@post-polio.org or give us a call at 314-534-0475.
ACCESS BOARD CELEBRATES 50 YEARS OF THE ABA
The US Access Board marked the 50th anniversary of the Architectural Barriers Act (ABA) with a celebration on September 7th in Washington, DC. The event featured Judith Heumann, former PHI Board Member and Special Advisor for International Disability Rights at the Department of State, and other guest speakers. Video of the event can be viewed here.
The US Access Board marked the 50th anniversary of the Architectural Barriers Act (ABA) with a celebration on September 7th in Washington, DC. The event featured Judith Heumann, former PHI Board Member and Special Advisor for International Disability Rights at the Department of State, and other guest speakers. Video of the event can be viewed here.
Summer, 2018
GREETINGS FROM PHI!
We here at PHI have recently been discussing how we can work more closely with and provide assistance to local support groups. Rather than guess at what support might be most valuable, we’d love to hear directly from you. Would it be helpful for PHI to ship materials (newsletters, pamphlets, etc.) to pass out at meetings? Perhaps we could create a virtual welcome packet you could distribute to new members with essential information about the late effects of polio? Could we make it easier to request articles to reprint?
Another idea that has been under discussion here is carving out space in our newsletter for news items from local support groups. This may include notices about upcoming events, wellness retreats or conferences; a news item about a group member; or perhaps an initiative by your group to improve accessibility in your community. If you have an item you like to see publicized to the wider post-polio community, send it to editor@post-polio.org.
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We here at PHI have recently been discussing how we can work more closely with and provide assistance to local support groups. Rather than guess at what support might be most valuable, we’d love to hear directly from you. Would it be helpful for PHI to ship materials (newsletters, pamphlets, etc.) to pass out at meetings? Perhaps we could create a virtual welcome packet you could distribute to new members with essential information about the late effects of polio? Could we make it easier to request articles to reprint?
Another idea that has been under discussion here is carving out space in our newsletter for news items from local support groups. This may include notices about upcoming events, wellness retreats or conferences; a news item about a group member; or perhaps an initiative by your group to improve accessibility in your community. If you have an item you like to see publicized to the wider post-polio community, send it to editor@post-polio.org.
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Two Great New Reads . . .
To Play Again by Carol Rosenberger
A new memoir, To Play Again, tells the story of Rosenberger’s remarkable battle to retrain her body after contracting polio at age 21. Overcoming all medical, music industry and social doubt—her own fears and doubts notwithstanding — Rosenberger returned to the concert soloist circuit at age 30. During the last four decades she has established herself as a gifted, sensitive pianist and an inspirational teacher as a faculty member at the University of Southern California and in workshops held nationwide. Under the Delos label, Rosenberger has made over 30 records.
An Abled Life, Challenging the Limits of Polio by Thomas C. Wilczewski
Author Thomas Wilczewski has fought adversity in one form or another his entire life. Two months before his fifth birthday, he was stricken with polio and confined to an iron lung for more than a year. After nearly two years, Tom was released from the hospital in a wheelchair, and he began his lifelong struggle to regain the stamina and mobility taken by polio. An Abled Life is available for purchase atwww.anabledlife.com.
To Play Again by Carol Rosenberger
A new memoir, To Play Again, tells the story of Rosenberger’s remarkable battle to retrain her body after contracting polio at age 21. Overcoming all medical, music industry and social doubt—her own fears and doubts notwithstanding — Rosenberger returned to the concert soloist circuit at age 30. During the last four decades she has established herself as a gifted, sensitive pianist and an inspirational teacher as a faculty member at the University of Southern California and in workshops held nationwide. Under the Delos label, Rosenberger has made over 30 records.
An Abled Life, Challenging the Limits of Polio by Thomas C. Wilczewski
Author Thomas Wilczewski has fought adversity in one form or another his entire life. Two months before his fifth birthday, he was stricken with polio and confined to an iron lung for more than a year. After nearly two years, Tom was released from the hospital in a wheelchair, and he began his lifelong struggle to regain the stamina and mobility taken by polio. An Abled Life is available for purchase atwww.anabledlife.com.
POLIO HISTORY - Salk Audio Recordings to be Released
UC San Diego to salvage the 'lost' audio recordings of polio vaccine pioneer Jonas Salk – UC San Diego has commissioned a company to digitize more than 170 hours of audio recordings that Jonas Salk made between 1949 and 1967. The recordings were made on an obsolete piece of technology called an audograph, which recorded the sound on thin vinyl discs that were roughly the weight of tin foil. There was concern previously that playing the discs could destroy them, and, thus, they haven’t been heard in over a half-century. The digitization is expected to begin this summer.
UC San Diego to salvage the 'lost' audio recordings of polio vaccine pioneer Jonas Salk – UC San Diego has commissioned a company to digitize more than 170 hours of audio recordings that Jonas Salk made between 1949 and 1967. The recordings were made on an obsolete piece of technology called an audograph, which recorded the sound on thin vinyl discs that were roughly the weight of tin foil. There was concern previously that playing the discs could destroy them, and, thus, they haven’t been heard in over a half-century. The digitization is expected to begin this summer.
May, 2018
We've done some updating!
Polio Place is an archive of all our past newsletter articles, as well as a collection of post-polio related research reports. We've added lots of articles from our most recent newsletters, have a look HERE if you haven't already!
Polio Place is an archive of all our past newsletter articles, as well as a collection of post-polio related research reports. We've added lots of articles from our most recent newsletters, have a look HERE if you haven't already!
A Pound of Kindness from Polio Survivor Dave Clark
Click to set custom HTML
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From New Mobility Magazine:
Traveling with a Disability in the Grand Teton and Yellowstone National Parks
From New Mobility Magazine:
Traveling with a Disability in the Grand Teton and Yellowstone National Parks
Cultural Issues in the UAE and How they Impact Healthcare
by Dr. William DeMayo, MD.
Thank you Post-Polio Health International for sharing this article.
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by Dr. William DeMayo, MD.
Thank you Post-Polio Health International for sharing this article.
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January, February and March , 2018
A Very Special Service Dog (1/12/2018)
"Love" and the British Polio Fellowship (2/14/2018)
New Video: Post-Polio Care - Past, Present and Future
Thank you PHI for publishing these three informative videos.
Thank you PHI for publishing these three informative videos.
Paralyzed from Polio, a Cyclist Rides (3/20/2018)
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November and December, 2017
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Big Changes at PHI
The Pennsylvania Polio Survivor's Network (PPSN) wishes Joan Headley the very best as
she moves from having been the Director of PHI in St. Louis into the wonderful new adventure of retirement.
As she steps down, we are looking forward to working even more closely with their newly appointed Director Brian Tiburzi. Many of us have been fortunate to work with Brian through the years, and know what a marvelous job he will do.
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Big Changes at PHI
The Pennsylvania Polio Survivor's Network (PPSN) wishes Joan Headley the very best as
she moves from having been the Director of PHI in St. Louis into the wonderful new adventure of retirement.
As she steps down, we are looking forward to working even more closely with their newly appointed Director Brian Tiburzi. Many of us have been fortunate to work with Brian through the years, and know what a marvelous job he will do.
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August, 2017
A 2010 Study - Polio Mainly Affects the Legs (8/27/2017)
If it comes up in Spanish, "click" on that page for translation.
If it comes up in Spanish, "click" on that page for translation.
Finding a Gain for Every Loss (8/7/2017)
Five Tips to help Caregivers (8/25/2017)
Home Ventilator Guide - Update (8/22/2017)
July, 2017
Dallas Sent Polio a Mighty Blow (7/28/2017)
Home Ventilation and Respiratory Support (7/10/2017)
Post-Polio Meeting in Pennsylvania (7/27/2017)
Three Locations and Webcast Available to Join In
Three Locations and Webcast Available to Join In
The ADA and "Reasonable" Accommodations (7/10/2017)
June, 2017
Post-Polio Health International has published more articles in Spanish.
To find them, enter www.polioplace.org and write "Spanish" in the search box at the top right.
To find them, enter www.polioplace.org and write "Spanish" in the search box at the top right.
Elder Abuse - (6/15/2017)
1 in 6 older adults have been abused in the past year. Recognize the different forms of elder abuse.
1 in 6 older adults have been abused in the past year. Recognize the different forms of elder abuse.
How to Reduce Stress through Mindfulness (6/9/2017)
PHI Research Fund Grant (6/12/2017)
What is "People" Centered Care? A Video from WHO (6/22/2017)
May, 2017
Breakfast at Ina's (5/11/2017)
Her Personal Best Beats Polio (5/17/2017)
Polio-Place is Growing (5/12/2017)
The Role of the Primary Care Physician in the Life of a Polio Survivor (5/22/2017)
More Articles by Dr. William DeMayo are available Here
More Articles by Dr. William DeMayo are available Here
Reminder: While Facebook serves a purpose, it is probably not best to depend on it as your only source of post-polio information.
Check to see HERE if there are resources near you/in your state/country.
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Check to see HERE if there are resources near you/in your state/country.
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April, 2017
Making Schools in India Disability Friendly (4/18/2017)
Polio - A Story Forgotten (4/26/2017)
Vaccine is the Most Powerful Public Health Tool (4/24/2017)
March 2017
Abilities Expo - in New York City and Beyond (3/13/2017)
(Click on "Abilities Expos" at the top of the page for locations and dates)
(Click on "Abilities Expos" at the top of the page for locations and dates)
"The Pharmacy and Medical Museum of Texas, located in Cuero, Texas is looking for an Iron Lung that a family or organization might be willing to donate to our museum. We are interested in establishing a permanent exhibit on "The History of Polio."
Warning from the Inspector General of Social Security (3/6/2017)
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February 2017
A Heart Outrun - by Polio Survivor Gary Presley (2/13/2017)
ADA - Frequently Asked Questions (2/14/2017)
Science is Closing In on the "Polio Like" Virus (2/27/2017)
What's So Bad About Sugar? (2/1/2017)
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"Stand Proud" - Orthopedic Brace Making (and other amazing photos) (10/21/2015)
By providing free mobility-enhancing treatment and equipment, U.S., U.K., and Swiss charity StandProud improves the dignity and social integration of impoverished children and youth with motor disabilities in the Democratic Republic of Congo (DR Congo) .
By providing free mobility-enhancing treatment and equipment, U.S., U.K., and Swiss charity StandProud improves the dignity and social integration of impoverished children and youth with motor disabilities in the Democratic Republic of Congo (DR Congo) .
PHI Facebook Posts - Previous Months
The highlights are all available below (by month)
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The highlights are all available below (by month)
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"Family Life. We're Still Here" Photo Contest -
2016 Winners
2016 Winners
January, 2017
How to Prepare for our Senior Years (1/30/2017)
Remembering First Lady Bess Truman (1/3/2017)
Wisdom from an 11 Year old Polio Survivor (1/28/2017)
December, 2016
21st Century Cure's Act (12/14/2016)
We know many of you are concerned about funding of CRT....."The legislation provides just a six-month delay in cuts to CRT, making it imperative that we keep pressure on Congress to put a permanent solution put in place next year." (CRT products include individually configured manual and power wheelchairs, seating and positioning systems, and other adaptive devices designed to meet the person’s unique medical and functional needs; all essential for health and independence for people living with paralysis. )
We know many of you are concerned about funding of CRT....."The legislation provides just a six-month delay in cuts to CRT, making it imperative that we keep pressure on Congress to put a permanent solution put in place next year." (CRT products include individually configured manual and power wheelchairs, seating and positioning systems, and other adaptive devices designed to meet the person’s unique medical and functional needs; all essential for health and independence for people living with paralysis. )
In Fond Memory of John Glenn (12/8/2016)
Living and Dying at Home (12/13/2016)
Logan (Utah) Survivor Remembers: Polio Pioneer (12/11/2016)
Muscle Power Evaluation (12/5/2016)
UCLA Study Looks at the World of Disability (12/19/2016)
PHI Facebook Posts - November, 2016
A Rare and Intimate Glimpse into the Life of FDR (11/3/2016)
An Outstanding Video from Steenwyck Custom Shoes (11/2/2016)
An Update from the Global Eradication Initiative (11/30/2016)
Co-Enzyme Q10 - Some New Research (11/7/2016)
Future Life with a Polio Survivor (Click on "read article") (11/2/2016)
Minnesota Survivor Speaks About Polio (11/6/2016)
Why the Weight? Losing a Few Pounds is Possible (11/22/2016)
October, 2016
A Disabled Life is a Life Worth Living (10/6/2016)
From Australia - Twenty Years of Advocacy (10/20/2016)
"Feeling the Pinch" - getting the Flu Shot (10/3/2016)
Polio - A Disease that Haunts Victims Later in Life (10/28/2016)
Post-Polio Syndrome (as defined by the American Academy of Physical Medicine and Rehabilitation) (10/5/2016)
September, 2016
From the National Council on Disabilities (9/13/2016)
PAST and PRESENT LEADERSHIP of the National Council on Disability on H.R. 3765, the ADA Education and Reform Act: "No business should be given what essentially amounts to a pass to continue to violate a law that was established more than a quarter-century ago to end the pervasive discrimination against people with disabilities that prevented us from going to movies, eating in restaurants, shopping in stores, going to museums and sporting events, and simply being an active part of our communities."
PAST and PRESENT LEADERSHIP of the National Council on Disability on H.R. 3765, the ADA Education and Reform Act: "No business should be given what essentially amounts to a pass to continue to violate a law that was established more than a quarter-century ago to end the pervasive discrimination against people with disabilities that prevented us from going to movies, eating in restaurants, shopping in stores, going to museums and sporting events, and simply being an active part of our communities."
From the University of Pittsburgh (9/30/2016)
If you are a wheelchair user (temporary or permanent), a caretaker, a clinician, have volunteered in disaster relief situations,
or are an expert in disaster relief we would be eager to hear your thoughts and opinions
If you are a wheelchair user (temporary or permanent), a caretaker, a clinician, have volunteered in disaster relief situations,
or are an expert in disaster relief we would be eager to hear your thoughts and opinions
My Para-Olympic Blues (from the NY Times) (9/1/2016)
Polio Survivors Face New Disability (9/29/2016)
Polio Survivors Face New Disability (9/27/2016)
Vaccine Update from the CDC (9/8/2016)
Ventilator Assisted Living - August, 2016 (9/3/2016)
August, 2016
Accessible Vehicles - What's New (8/3/2016)
Accessible Vehicles - What's New (8/3/2016)
An Outstanding Radio Interview about Polio and PPS with Burk Jubelt, MD.
("click" on the link to play halfway down the page)
("click" on the link to play halfway down the page)
Becoming Disabled (from the New York Times) (8/22/2016)
Dignity and Hope (from Bittersweet Monthly) (8/17/2016)
From the UK - Post Polio Couldn't Keep Her Down (8/20/2016)
Mobility India - The Progress (8/3/2016)
Polio Place - PHI Archives (8/29/2016)
Recently we posted an article and scans of the questions asked and the data results from the National Health Interview Survey (1987) from the National Center for Health Statistics regarding polio survivors.
Go to http://www.polioplace.org/…/collecti…/selected-materials-phi and scroll down to National Health Interview Survey 1987 (the articles/booklets are in chronological order) to see the 15 tables, etc.
Recently we posted an article and scans of the questions asked and the data results from the National Health Interview Survey (1987) from the National Center for Health Statistics regarding polio survivors.
Go to http://www.polioplace.org/…/collecti…/selected-materials-phi and scroll down to National Health Interview Survey 1987 (the articles/booklets are in chronological order) to see the 15 tables, etc.
July, 2016
FDR Memorial (7/11/2016)
"Looking Back" The Polio Epidemic of 1916 (7/24/2016)
Margaret Pfrommer Memorial Lecture (7/14/2016)
Polio Couldn't Stop this Grad (7/27/2016)
Research Summaries - Aging with Disabities (7/20/2016)
PHI Facebook Posts - June, 2016
Avoiding Drug Interactions - from Harvard Health (6/23/2016)
Cyndi Jones - The Change Agent (6/14/2016)
New Guidelines for Reducing Sodium (6/1/2016)
Paul R. Harrington, MD. His Story (6/6/2016)
Polio Survivor "Tops" in Exam (6/27/2016)
Power Chairs - It's a Whole New Ballgame (6/7/2016)
Tennessee Survivors Shares Story of Meeting FDR (6/15/2016)
Yoga for Post-Polio Patients- from Polio Place (6/21/2016)
A Completely Accessible Kitchen - from The Freedom Constructors (Video Below)
(6/15/2016)
(6/15/2016)
PHI Facebook Posts - May, 2016
ADA Notification to House Judiciary Committee (5/19/2016)
Aging in Place - the Challenges (5/26/2016)
An Unexpected Journey: A Physician's Life in the Shadow of Polio (5/10/2016)
The story of Lauro Halstead, MD.
The story of Lauro Halstead, MD.
The Story of Simple Exercise Vs. Leg Pain (5/2/2016)
PHI periodically receives messages from polio survivors who have found a solution for their particular medical problem. Many are disappointed that we do not “tell everyone.” Why don’t we? Some of the solutions are part of a pyramid marketing scheme. Some solutions sent to us are unique to the individual and not a solution that would apply to most polio survivors, ie, treatment for hypothyroidism. And then there are those that may be helpful, but often the person/company with the solution will not offer more explanatory and credible information for publication.
However, polio survivor Mary Pat Toups and Stephen Tang worked together and we share their story with you.
PHI periodically receives messages from polio survivors who have found a solution for their particular medical problem. Many are disappointed that we do not “tell everyone.” Why don’t we? Some of the solutions are part of a pyramid marketing scheme. Some solutions sent to us are unique to the individual and not a solution that would apply to most polio survivors, ie, treatment for hypothyroidism. And then there are those that may be helpful, but often the person/company with the solution will not offer more explanatory and credible information for publication.
However, polio survivor Mary Pat Toups and Stephen Tang worked together and we share their story with you.
Vent Policy Revised - In Favor of Patients (5/7/2016)
PHI Facebook Posts - April, 2016
AUGUST 14-18, 2016 Colorado Post-Polio 2016 Retreat (one hour from Denver).
Contact Nancy Hanson at nhanson@eastersealscolorado.org for a registration form.
(Details Available HERE)
AUGUST 14-18, 2016 Colorado Post-Polio 2016 Retreat (one hour from Denver).
Contact Nancy Hanson at nhanson@eastersealscolorado.org for a registration form.
(Details Available HERE)
"It's An Accessible Life - My 24 Hour Journey" (4/10/2016)
"Branson Goer's Reunion" - in Branson, Missouri June 3-5, 2016
Details for their 18th Annual Reunion are available HERE
Details for their 18th Annual Reunion are available HERE
Children Treated with the Salk Vaccine - 1955 (4/8/2016)
A little history from the Chicago Tribune
A little history from the Chicago Tribune
Drug Disposal Information (4/26/2016)
Knee Replacements - Are you a polio survivor who had knee replacement surgery in your leg that has muscular weakness and atrophy?
Was done in the Philadelphia, PA or Syracuse or Rochester, NY, within the last couple of years? Would you be willing to share the surgeon's name? If so, please contact director@post-polio.org.
Was done in the Philadelphia, PA or Syracuse or Rochester, NY, within the last couple of years? Would you be willing to share the surgeon's name? If so, please contact director@post-polio.org.
Stoicism and Disability - It's Worth Reading (April 12, 2016)
The Video "Disability - Developing a Personal Philosophy" is Available Here
The Video "Disability - Developing a Personal Philosophy" is Available Here
PHI Facebook Posts - March, 2016
Bedside Toileting Assistance (3/8/2016)
"I Could Die Here" - a survivor story (3/31/2016)
Making Plans for Summer Travel? Come to Utah (3/15/2016)
Reminder: PHI has an extensive list of medical articles on Polio Place. (3/11/2016)
http://polioplace.org/medical-articles
http://polioplace.org/medical-articles
Savor the Flavor of Eating Right (3/25/2016)
The Unfolding of Polio (3/15/2016)
Wheelchair Gardening - Four wonderful articles (3/28/2016)
Building a Wheelchair Accessible Raised Garden
Gardening From A Wheelchair (from the Christopher Reeve Foundation)
Gardening - Incorporating the Principles of Universal Design
Wheelchair Gardening Tips
Building a Wheelchair Accessible Raised Garden
Gardening From A Wheelchair (from the Christopher Reeve Foundation)
Gardening - Incorporating the Principles of Universal Design
Wheelchair Gardening Tips
PHI Facebook Posts - February, 2016
ADA Legacy Project (2/8/2016)
Fall Related Issues and Polio Survivors (2/16/2016)
The "Wild" Handicapper (at Yosemite) (2/22/2016)
PHI Facebook Posts - January, 2016
Colorado Post-Polio Retreat - August, 2016 (1/22/2016)
Pressure Sores - Painful But Preventable (1/5/2016)
PHI Facebook Posts - November and December 2015
2015 - 2016 Flu Season - What We Should Know (11/24/2015)
Disability History Museum (11/9/2015)
FDR's Neuro Disease Re-Visited (11/2/2015)
Jonas Salk Papers on Exhibit (11/12/2015)
Scoliosis - Five Things to Remember (11/5/2015)
PHI Facebook Posts - September and October 2015
Be Cautious About Stem Cell Cures (10/31/2015)
"Falls" Prevention Program for Older Adults (9/22/2015)
"Flexible Fitness" and Post-Polio Syndrome (10/21/2015)
Photo Accessibility Contest - "We're Still Here" (10/31/2015)
Polio Network News, a summary (1985 - Present) (9/16/2015)
Polio Physician Augusta Alba Turns 90 (10/7/2015)
Some Jokes Aren't Funny (9/16/2015)
PHI Facebook Posts - August, 2015
Brave Polio Survivor Overcomes Every Obstacle (8/26/2015)
Photo Contest - "We're Still Here" (8/24/2014)
Post-Polio Relevant ICD-10 Coding (in PDF format for printing) (8/26/2015)
"Stand Proud" Readers Choice Award (8/20/2015)
By providing free mobility-enhancing treatment and equipment, "StandProud" (a US, UK and Swiss Charity) improves the dignity and social integration of impoverished children and youth with motor disabilities in the Democratic Republic of Congo.
PHI Facebook Posts - July, 2015
ADA is 25 ! (7/15/2015)
A Dozen Things to Know about the ADA (7/26/2015)
An Interview with Author Peter Kavanaugh (7/9/2015)
Eleanor Smith Home Design Act (7/31/2015)
Nu-Step Provides Therapy for Some Polio Survivors (7/29/2015)
**Check with your physician (or) physical therapist to see if this is right for you.**
**Check with your physician (or) physical therapist to see if this is right for you.**
Sure Foot - The All Terrain Cane (7/15/2015)
We Prepare Every Day (7/26/2015)
What to do with Mismatched Shoes? (7/9/2015)
PHI Facebook Posts - June, 2015
Full Featured, Two-in-One Ventilator (6/1/2015)
How I Found Out I Was Bad . . .a survivor's blog (6/11/2015)
OWL - The Voice of Women Over 40 (6/29/2015)
"We're Still Here" Photo Contest (6/29/2015)
A beautiful photo from the Democratic Republic of the Congo (6/9/2015)
StandProud was selected as one of the top three candidates for November's Reader's Choice feature issue in Bittersweet Monthly, an online magazine that shares stories of “good” from around the world. In order for StandProud to win, we need for people to vote. If StandProud is the finalist, Bittersweet Monthly will share the organization's amazing story in its magazine. Help us spread the word about how Stand Proud provides mobility, dignity and integration to impoverished children and youth with motor disabilities in the Democratic Republic of the Congo.
Visit www.standproud.org for more information on StandProud.
PHI Facebook Posts - May, 2015
A Lively Biography of Jonas Salk (5/13/2015)
A Toast to Polio Survivors (5/6/2015)
Deborah Cunningham - Disability Advocate (5/8/2015)
Is Your Home Suited for Aging ? (5/12/2015)
Lets Live Well and Live it Up (5/5/2015)
Post-Polio Syndrome as a Possible Viral Disease (5/26/2015)
Some History from an Anesthesiologist (5/12/2015)
The Toughest Calls in Medical Ethics (5/7/2015)
PHI Facebook Posts - April, 2015
Celebrate the 25th Anniversary of the ADA (4/20/2015)
Defeating the Disease that Paralyzed America (4/10/2015)
News of Polio's Conquering Came 60 Years Ago (4/9/2015)
Polio Survivor Cardinal Francis George, Dies (4/19/2015)
Polio Vaccine at 60 (4/9/2015)
Polio Wellness Retreat (4/20/2015)
The Man Who Learned to Walk 3 Times (4/13/2015)
The Shadow of Polio (4/27/2015)
Warm Springs was a Presidential Retreat (4/8/2015)
Way Back When - the Sunny Roller Blog (4/20/2015)
Wheelchair Yoga (4/22/2015)
You Remembered: Polio (4/27/2015)
PHI Facebook Posts - March, 2015
Crawling in a Polio Free Country - a CNN Report (3/20/2015)
Eat Healthy and Stay Active (3/18/2015)
Falling - It Occurs Far to Often (3/6/2015)
Memorabilia - A Polio Pioneer Card (3/11/2015)
PHI Facebook Posts - February, 2015
Center for Research on Women With Disabilities (2/14/2015)
Disability? What Disability? (2/8/2015)
For Polio Survivors Using a Vent or a Bilevel Device (2/26/2015)
We would like to hear from you – ventilator users, families, attendants, health professionals
(physicians, RTs). From your point of view, what are the most important concerns of ventilator users? In this short survey we ask you to prioritize a list and give room for adding further comments. Just click on the links (above) and share the link with others. (Note: When you create a “1,” the others will automatically rearrange, the same will happen when you create a “2,” etc.)
We would like to hear from you – ventilator users, families, attendants, health professionals
(physicians, RTs). From your point of view, what are the most important concerns of ventilator users? In this short survey we ask you to prioritize a list and give room for adding further comments. Just click on the links (above) and share the link with others. (Note: When you create a “1,” the others will automatically rearrange, the same will happen when you create a “2,” etc.)
A Question to PHI Re: The Use of Curare (2/17/2015)
"I contracted polio at age 11 (August, 1948) in New Jersey. After spending 11 miserable weeks in the Essex County Isolation Hospital, where the Sister Kenny treatments resulted in minimal to no improvement, my parents brought me home and I embarked on a series of physical therapy treatments, under the care of the late Dr. Philip Willner.
Before each session, I was injected with Curare to relax my muscles. I was treated regularly for the next 2 to 2 1/2 years and I made substantial progress. Now I am wondering if there is anyone else out there who was given Curare prior to acute (post) polio treatments"
From the PHI Director: If you experienced the same, send a note to us
and we will connect you with the individual asking the question.
"I contracted polio at age 11 (August, 1948) in New Jersey. After spending 11 miserable weeks in the Essex County Isolation Hospital, where the Sister Kenny treatments resulted in minimal to no improvement, my parents brought me home and I embarked on a series of physical therapy treatments, under the care of the late Dr. Philip Willner.
Before each session, I was injected with Curare to relax my muscles. I was treated regularly for the next 2 to 2 1/2 years and I made substantial progress. Now I am wondering if there is anyone else out there who was given Curare prior to acute (post) polio treatments"
From the PHI Director: If you experienced the same, send a note to us
and we will connect you with the individual asking the question.
Pennsylvania Network Looking for Survivors (2/11/2015)
Take Action on Medicare Therapy Caps (2/23/2015)
The Vaccine Everyone Wanted (2/23/2015)
When Polio Held Houston in Fear (2/23/2015)
PHI Facebook Posts - January, 2015
New Website from Europe - Polio Educational and Charity Help Organization (1/15/2015)
Support Groups: What Works (1/12/2015)
Watch Mario DeSantis Play "Auld Lang Syne (1/2/2015)