IPPSO NEWS MAGAZINE

It is ability that counts, not disability

From the Editor's Desk

The Winston Churchill Memorial Trust of Australia was established in 1965, the year in which Sir Winston Churchill died. The principal object of the Trust is to perpetuate and honor the memory of Sir Winston Churchill by the award of Traveling Fellowships. A Churchill Fellowship is an opportunity through the provision of financial support, to enable Australian citizens to travel overseas to undertake an analysis, study or investigation of a project or an issue. Mary-Ann Liethof is a Churchill Fellow, elected in 2007 and she has written a paper entitled "To Identify Techniques to Better Manage the Late Effects of Polio." All of us are well aware of the late effects of Polio (PPS) so it follows that we would be very interested to read what Mary-Anne has written. She has given her permission for her paper to be reproduced in our IPPSO Magazine and we are proud to do just that.

Mary-Anne's study concentrates on the USA and Canada. It is a long article, far too long for one issue only, so I intend to serialize it over the next few issues like I did with the History of Polio which we completed in the October issue. I hope that you will enjoy and also benefit from what you read.

Letters to the Editor

I don't know if you want to use it but I found a fantastic link on polio and its history. All you have to do is put up the url and people will get a huge education. I read things I had never heard of. http://americanhistory.si.edu/polio/ I know you are through with polio history but thought I would send it to the Editor as I found it very interesting. Sincerely, Shari

Hehehe Corner

Why did the turkey cross the road?

It was the chicken's day off.

Donations and Dues

Thoughts and Observations from Gladys Svensrud

I read the IPPSO newsletter first thing this morning when it arrived in my inbox. When I got to your plea for donations, I really dug deep to ask myself why I don't remember to donate dues to IPPSO. Perhaps it will help explain why others fail the call as well.

IPPSO is a unique group. As an internet gathering place, so it reaches throngs of people. I find your information interesting and informative, so I can only image all other readers understand its value as well. The trouble is that so many of us have groups in our own towns to which we contribute. And, on top of that, we have groups in neighboring areas whose meetings we attend and to whom we often contribute as well. Within the close reaches of my home in San Diego alone, I have at least five groups with which I affiliate. They are the people I directly involve in my efforts to educate the healthcare system about polio and other neuromuscular disease breathing issues. We very closely share information.

The San Diego group is my primary focus, but I am good friends with Rick Van Der Linden, PPS Manager and head of the Hemet Area Polio Survivors, so the Hemet group is on my list as well. I not only travel to many groups meetings to speak, but I travel to their presentations to gather information on their speakers and write reviews for the PPS Manager Newsletter whenever possible. I write the summary from the San Diego Polio Survivors meetings and submit our notes to the PPS Manager for inclusion in every issue. On top of that, I am a member of the San Francisco Bay Area Polio Survivors, and I try to attend their meetings at least twice a year. They are an extraordinary PPS group. Even for the groups with meetings that I try to physically attend, I often forget to update and pay dues.

Each group has dues due at a different time of year. That gets VERY confusing. And for that money, each group is trying to do something similar. In San Diego we don't have dues, but as you know, I am very actively involved, so I give to our group in many other ways. I am a co-facilitator or the San Diego Polio Survivors, so I spend time to keep our group active. I help bring speakers to our meetings, and I correspond with members to keep information flowing. Our meeting room is offered free of charge, so our meeting is at no cost to our members. It takes manpower and time to keep our numbers up and people interested. AND I bring homemade cookies to each meeting for that warmth of welcome.

I can't be sure that my situation is representative of the vast majority of your readers, but it does explain some of the roadblocks you are facing. I know it is an uphill battle. For each of us doing our share to keep polio survivors informed, the money pool is dipping into the same pockets. I will keep watching and hoping more and more people kick in to help so you know your efforts are truly appreciated. Yes, sometimes we feel we are doing all we do and not many people take notice, but we know down deep others are being helped, and that is what keeps us involved to the great extent that we are.

By the way, my drive to see the successful Kaiser/San Diego Neuromuscular Respiratory Program expanded Southern California is in progress. My "concern" letter is in the hands of the Kaiser/Southern California Regional Chief of Neurology. My case was well written and well presented, so we will see where it goes from here. Below in blue is a small portion of my three page letter giving a few statistics from how my hard fought for program in San Diego has already helped neuromuscular respiratory patients living longer and better lives.

Keep in mind that 57% of all neuromuscular patients in Kaiser/San Diego who were tested actually needed ventilatory help. I think those statistics are shocking.

Hoping this helps explain some of the lethargy in getting dues in to IPPSO. I will be watching for how your efforts progress.

Hehehe Corner

Asked to write a composition entitled, "What I'm thankful for on Thanksgiving," a student wrote , "I am thankful that I'm not a turkey."

Thanksgiving

THE FIRST THANKSGIVING
Thanksgiving and the Pilgrims seem to go together, just like Christmas and Santa Claus--but the truth is, the Pilgrims never held an autumnal Thanksgiving feast. But before you cancel the turkey, take a look at the origin of that particular myth. In some ways, the truth is even more intriguing.

The Pilgrims did have a feast in 1621, after their first harvest, and it is this feast which people often refer to as "The First Thanksgiving". This feast was never repeated, though, so it can't be called the beginning of a tradition, nor was it termed by the colonists or "Pilgrims" a Thanksgiving Feast. In fact, to these devoutly religious people, a day of thanksgiving was a day of prayer and fasting, and would have been held any time that they felt an extra day of thanks was called for. Nevertheless, the 1621 feast has become a model that we think of for our own Thanksgiving celebration and we do know something of the truth about it.

We can assume, for example, that the harvest feast was eaten outside based on the fact that the Colonists didn't have a building large enough to accommodate all the people who came. Native People were definitely among the invited guests, and it's possible. even probable, that turkey (roasted but not stuffed) and pumpkin in some form, found their way to the table. And it gets better. This is the way the feast was described in a first-hand account presumably by a leader of the colony, Edward Winslow, as it appears in Mourt's Relation:

"Our harvest being gotten in, our governor sent four men on fowling, that so we might after a special manner rejoice together after we had gathered the fruit of our labors. They four in one day killed as much fowl as, with a little help beside, served the company almost a week. At which time, amongst other recreations, we exercised our arms, Many of the Indians coming amongst us, and among the rest their greatest King Massasoit, with some ninety men, whom for three days we entertained and feasted, and they went out and killed five deer, which they brought to the plantation and bestowed on our governor, and upon the captain and others. And although it be not always so plentiful as it was this time with us, yet by the goodness of God, we are so far from want that we often wish you partakers of our plenty."

From this we know that the feast went on for three days, included ninety "Indians", and food was plentiful. In addition, to the venison provided by the Indians, there was enough wild fowl to supply the village for a week. The fowl would have included ducks, geese, turkeys and even swans.

Much of the information we have about the feast, and this period in the lives of these people, is the result of research conducted by the staff at Plymouth Plantation, the living museum in Plymouth, Massachusetts, that re-creates the lives of the Pilgrims with MayflowerII, the 1627 Pilgrim Village and a native homesite. From this research we know about the foods and recipes that would have been available to them, and from two first hand accounts (the second was written by William Bradford, Governor of the colony for 33 years, and can be read in Of Plymouth Plantation 1620-1647), we have a good idea of how the village looked, what the colonists wore, how they spoke, what animals they owned and how they lived. We even know what games they played, what their views may have been on everything from their new home to religion and politics. And with all this knowledge, we piece together what foods would have been served at the feast, how the table looked, how the setting looked, even perhaps what the conversation was like.

Hehehe Corner

A turkey farmer was always experimenting with breeding to perfect a better turkey. His family was fond of the leg portion for dinner and there were never enough legs for everyone. After many frustrating attempts, the farmer was relating the results of his efforts to his friends at the general store get together. "Well I finally did it! I bred a turkey that has 6 legs!"
They all asked the farmer how it tasted.
"I don't know" said the farmer. "I never could catch the darn thing!"

Mary-Anne Leithof's Report

For technical reasons, I am unable to reproduce the photographs which are part of this report. This is unfortunate and I offer my apologies. However, the written report which follows is not affected in any way by the absence of the photographs.....Ed

Introduction

The purpose of my study tour was "To identify techniques to better manage the late effects of polio" in the USA and Canada.

The inspiration for this project was born out of witnessing the courage and determination revealed to me on a daily basis by the 'community' of polio survivors I work with, who are now experiencing post polio syndrome (PPS).

Therefore, it is the post-polio community I would first like to acknowledge, along with my traveling companion, Jill Pickering, herself a polio survivor. Jill's insight as both a trained Occupational Therapist (now retired) and someone living with PPS, proved to be invaluable on my study tour.

I must also acknowledge ParaQuad Victoria and my fellow workers who supported me in my six week absence from the workplace.

The many and varied places visited provided me with a wealth of information on current PPS management techniques provided by individuals and teams of specialists. Everyone I had the privilege of meeting was very welcoming, helpful and generous in imparting their knowledge. I thank them all.

I am honored to be a recipient of the 2007 Churchill Fellowship who provided the means to achieve my goal and will fondly remember the 'once in a lifetime' opportunity the Churchill Trust has provided.

Executive Summary

Contact Details:
Mary-ann Liethof
Community Officer, Polio Network – a service of ParaQuad Victoria
208 Wellington Street
Collingwood Vic 3066 Australia
Ph: (03) 9418 0411 (BH) / Email: polio@paraquad.asn.au / URL: www.polionetworkvic.asn.au

Project Description:
As there are limited services for polio survivors, and no Post Polio Syndrome (PPS) research is currently being carried out within Australia, the overall purpose of this study tour to the USA and Canada was to:

• identify the latest research being carried out into the cause and management of PPS symptoms
• observe a variety of ‘best practice’ services for polio survivors
• learn about the range of resources and equipment available
• enhance understanding of the wider implication of emotional and psychological issues that impact on polio survivors and family members
• open up networks and links with clinicians for Polio Services Victoria to pursue

The range of individuals and institutions visited more than fulfilled all these criteria, making it very difficult to pick out specific highlights.

Highlights:

• The incredible dedication of Dr Jacquelin Perry and range of facilities available at Rancho Los Amigos
• The historical significance of Roosevelt Warm Springs Institute for Rehabilitation
• The holistic approach to wellness being practiced at John P Murtha Neuroscience and Pain Institute
• The youthful team at Spaulding Rehabilitation Hospital’s long-term commitment to provide ongoing services for polio survivors
• The valuable clinical research being conducted by Dr Daria Trojan at Montreal Neurological Institute and Hospital

Major lessons and conclusions learnt are:

• The most effective way of managing PPS symptoms and ensuring polio survivors remain as active and independent as possible is through self-management techniques coupled with regular specialist clinic assessments and intervention strategies.
• Services for polio survivors will be required for at least another 20-30 years.
• Services are merging PPS with other neurological disorders in order to attract funding to continue service provision.
• The apparent lack of active community outreach to younger polio survivors who may be unaware of PPS is reflected in the decline of support groups in the USA/Canada.
• There very few clinics/institutes/individuals doing PPS research.

Information Dissemination:

• Daily reports & photos were uploaded onto the Polio Network website: www.polionetworkvic.asn.au / Churchill Fellowship Study Tour, which will remain for approx 12 months.
• Over the next few weeks/months, I will be working on distilling the volume of information received in a presentation format that can be shared at the eight regional Polio Days during Victoria's Polio Awareness Month in October 2008.
• I have also been invited to share this presentation with the Queensland, Tasmanian and New South Wales Post-Polio Networks in August, September and November, respectively.
• This report will be distributed to: all clinics/individuals visited; all Victorian polio support groups; Australian interstate and New Zealand Post Polio Networks; uploaded to Polio Network website.
• Videotaped interviews will be edited and compiled into a DVD to be distributed as above.

Programme

Los Angeles, California, USA – April 20 to 26, 2008

• Mr. Richard Daggett, President, Polio Survivors Association
• Los Angeles Post Polio Support Group
• Dr Susan Perlman, Director, Post-Polio Clinic, University of California, Los Angeles (UCLA) Medical Center and Melinda Guttry, Physical Therapist, UCLA Rehabilitation Services
• Dr Sophia Chun, Chief and Dr Jacquelin Perry, Consultant, Post-Polio Service, Rancho Los Amigos National Rehabilitation Center

St Louis, Missouri, USA – April 26 to 29, 2008

• Ms Joan Headley, Executive Director, Post-Polio Health International (PHI)
• Paraquad Inc.

Warm Springs, Georgia, USA – April 29 to May 3, 2008

• Mr. Greg Schmieg, Executive Director and Mr. Michael Shadix, Librarian/Historian, Roosevelt Warm Springs Institute for Rehabilitation
• Roosevelt’s Little White House & Historic Hydrotherapy Pools

Washington, DC, USA – May 3 to 8, 2008

• Dr Lauro S. Halstead, Director, Post-Polio Program, National Rehabilitation Hospital (editor of Managing Post-Polio: A Guide to Living and Aging Well with Post-Polio Syndrome)
• Ms Wendy Wilmer, President and Mr. Elver Ariza, Board Member, The Polio Society
• FDR Memorial

Johnstown, Pennsylvania, USA – May 8 to 11, 2008

• Ms Barbara Duryea, Director, Research and Development & Dr William M DeMayo, Medical Director, Post-Polio Center, John P Murtha Neuroscience and Pain Institute

New York, NY, USA – May 11 to 19, 2008

• Dr. Richard L. Bruno, Director, The Post-Polio Institute and International Centre for Post-Polio Education and Research (New Jersey) (author of The Polio Paradox)
• Ms Susan Fish, Physical Therapist
• Dr Margaret E Backman, Clinical Psychologist (author of The Post Polio Experience: Psychological Insights and Coping Strategies for Polio Survivors and Their Families)

Framingham, Massachusetts, USA – May 19 to 22, 2008

• Dr Darren Rosenberg, Medical Director and Ms Anna Rubin, former Education and Outreach Coordinator, Spaulding Rehabilitation Hospital

Toronto, Ontario, Canada – May 22 to 24, 2008

• Ms Sheila Casemore, Group Development and Support Coordinator, National Programs, Ontario March of Dimes and Rehabilitation Foundation for Disabled Persons / Polio Canada
• Ms Jan Nichols, Chair, Toronto/York/Peel Post Polio Chapter and Ms Elizabeth Lounsbury, Chair of Polio Canada

Ottawa, Ontario, Canada – May 24 to 26, 2008

• Dr Marcia Falconer, Virologist and Researcher
• Dr Douglas McKim, Medical Director and Ms Carole LeBlanc, Registered Respiratory Therapist (RRT) and COPD Educator, Respiratory Rehabilitation Services, The Ottawa Hospital Rehabilitation Centre

Montreal, Quebec, Canada – May 26 to 31, 2008

• Mr. Gilles Besner, President and Ms Mado Shrivell, Secretary, Association Polio Quebec
• Dr Daria A Trojan, Director, Post Polio Clinic, Montreal Neurological Institute and Hospital

The Experience

Los Angeles, California, USA

• Polio Survivors Association (www.polioassociation.org)
  
  Richard Daggett is the President of the Polio Survivors Association and Editor of the Rancho Los Amigos Post-Polio Support Group Newsletter. Richard contracted polio at the age of 13 and was in an iron lung for some time. He has severely limited muscle function, uses an electric wheelchair and has a tracheostomy for ventilatory support. In typical polio style, he is a very busy man, although he still found the time to pick us up in his low floor, modified people mover driven by Nora, one of his 5 support workers.
  
  We were invited back to Richard's home where he showed us a number of photos and presentations on his computer. One was a photo of Richard shaking hands with polio vaccine founder, Dr Jonas Salk, whom he had met in the 1980's. By all accounts, Salk was a very pleasant man.
  
  Richard had offered to book our accommodation at a place called H.O.M.E. (Housing Of Medical Emergencies), which is run by the Assistance League of Downey. It is a 10 unit apartment complex close to the Rancho Los Amigos National Rehabilitation Centre. According to their Mission Statement, the "Assistance League of Downey is a nonprofit organization of volunteers who, in addition to their fundraising efforts, provide for and administer vital, quality services for people in need in the Downey area." The accommodation itself has a Spanish influence, is motel style and perfectly comfortable – certainly unbelievable value for the USD$25.00 per night we paid. It's not exactly the most conveniently located place if you want to see the sights or be close to shops, but it is near the rehab centre and that's where we had our appointments.
  
  
• Los Angeles Post Polio Support Group Meeting
  Southern California boasts 13 polio support groups, each attracting an average of between 12 and 18 attendees at any given meeting. The Rancho Post-Polio Support Group is one of the larger ones and Richard sends out 700+ monthly newsletters to people around the area.
  
  We were collected by Richard and driven a few miles away to 'County Orange' to meet up with 8 post polio support group members for lunch. Our discussions were the same type of thing you would hear anywhere a group of polio's congregate. The issues concerning post polio syndrome are obviously fairly universal. However, I was asked a few thought provoking questions such as "What percentage of Australian polio survivors have pulmonary problems?" and "How many people were in an iron lung?" and "How many cases of bulbar polio were there?"
  
  Unfortunately, with Australia's patchy historical record keeping on the subject, I had no ready answers. I have not had a lot to do with polio's experiencing serious respiratory problems – that is to the point where ventilatory support is required both day and night. Of course, many people use C-PAP machines at night to assist with sleep apnea. There has also been some discussion regarding the use of a bi-level respirator. Where the C-PAP provides positive pressure designed to keep the airways open, there is an argument suggesting that people with weakened breathing muscles, weakness of diaphragm, or scoliosis (as with many polio survivors) have difficulty actually breathing out against this pressure. The bi-level is designed to give a certain pressure when breathing in and reduced pressure when breathing out. This is something worth following up in Australia.
  
  
• Key Point:
  • Promote discussion between ventilator users and their doctors regarding the use of bi-level respirators versus C-PAP.
    
    
• University of California, Los Angeles (UCLA) Medical Center (http://www.healthcare.ucla.edu / Medical Services / Neurology)
  Dr Susan Perlman is the Director of the Post-Polio Clinic and Clinical Professor of Neurology, Neurogenetics Clinic, UCLA Neurological Services and Melinda Guttry is a Physiotherapist with UCLA Rehabilitation Services.
  
  Dr Perlman discussed how she was originally introduced to post polio syndrome (PPS). Sometime during the mid-late 80's, a local support group brought in a wad of information with a request that UCLA's Neurology Clinic start up a specific Post Polio Clinic to service people on that side of town. The Rancho Los Amigos Hospital had been running a clinic for some time, but it was way across town (25 miles) and the numbers emerging at that time seemed to warrant an additional service.
  
  Clinic Structure
  Luckily, Dr Perlman became interested enough in PPS to do more research on the various symptoms and had access to the full compliment of supporting physicians including physiotherapist, Melinda Guttry. Over the years, with the general rationalization of resources and the way the health insurance system is set up in America, these days much of the supporting therapeutic, aids and equipment services are mainly referred out to specific services. However, after 20+ years, Dr Perlman and Melinda Guttry have been able to network with and educate many professionals, such as orthotists, to a stage where they are confident that effective treatment and services will be provided for polio survivors. Dr Perlman is also very active on the professional speaker's circuit, as well as giving annual presentations on the latest research in PPS attended by the local post polio community.
  
  Dr Perlman has written numerous papers on the latest research being carried out in the area of PPS and believes the most exciting developments are in the areas of 'inflammatory markers' and the immune treatment 'intravenous immunoglobulin' (IvIg). A 2002 study of IvIg using Swedish polio survivors concluded that the results (relating to increased muscle strength) were promising, although they were not conclusive due to the low number of patients studied. Since then, more research projects have been undertaken and this will definitely be something to keep an eye on in future.
  
  Dr Perlman believes that it is vital for polio survivors to become self-educated regarding PPS, then to educate their own health service providers. After all, that's how she got started in the first place.
  
  
• Key Points:
  • Monitor research developments are in the areas of 'inflammatory markers' and the immune treatment 'intravenous immunoglobulin' (IvIg).
  • Polio survivors must become self-educated regarding PPS, then to educate their own health service providers.
    
    
• Rancho Los Amigos National Rehabilitation Center (www.rancho.org/ser_postpolio.htm)
  Richard Daggett arranged for us to look around the Rancho Los Amigos Rehab Center. He introduced us to a number of people at the volunteer center, one of whom had fond memories of visiting Australia.
  
  We then went over to see the general orthopedic and pulmonary clinics. Rancho is a large rehab hospital and there were numerous patients waiting for assessments and consultations. Interestingly, as well as the standard car accident cases, a number of spinal chord injuries treated at Rancho are caused by shootings among gang members.
  
  A meeting took place with Jan Furumasu, a physical therapy instructor working in the Seating Center. The majority of people being seen at the Seating Centre would be those with spinal chord injury but they do see polio survivors on a regular enough basis to be familiar with the issues of finding an appropriate chair and cushion. They had cupboards full of different types of cushions, and a 'seat mapping' sensor pad that Jill tried out to see how it worked. This is particularly important for people with a spinal chord injury who are unable to feel the type of pressure that could potentially cause an ulcer. Polio survivors are simply able to identify the pain and rearrange themselves.
  
  We then met with Molly Doyle, the Program Director for the Center for Applied Rehabilitation Technology (C.A.R.T.) who in turn introduced us to Occupational Therapist, Kathleen Shanfield. Kathleen showed us a range of assistive devices for working on computers. Although I'm sure we have similar technology in Australia, I was amazed at the range of keyboard and mouse/toggle options available, as well as the voice activation software and physical support such as armrests. She also showed us the model house, which demonstrates a range of assistive technology to enable individuals with disabilities to live independently. The beauty of C.A.R.T. is that it's all located in a 'house' on the hospital grounds.
  
  Our next appointment was with Dr Jacquelin Perry who introduced us to her innovation, the Pathokinesiology Laboratory, which deals with instrumented diagnosis of complex gait dysfunction and the definition of disability. Dr Perry is a living legend at Rancho Los Amigos and is widely acclaimed as an expert in the area of orthopedics and rehabilitation for polio survivors – both professionally and by the polio community. It was a true privilege to be able to spend time with Dr Perry and learn about her 50+ years experience at Rancho and the methods she developed for working with polio survivors. She is very passionate about her work, still consulting in her 90's. She has also had the added challenge of living with Parkinson's disease over the last decade or so. Dr Perry consults for the post polio clinics run at Rancho every Friday and continues to see ageing polio's she operated on when they were children. For example, she performed a spinal fusion on Richard Daggett when he was just a teenager. With the passing years, they have both developed have a great deal of respect for each other's contribution to the polio community.
  
  Clinic Structure
  Dr Sophia Chun now heads up the post polio clinical team made up of an orthopedic specialist, physiotherapist, occupational therapist and nurse. Each new clinical assessment can take up to 2 hours. They see around 20 polio's per clinic, of which 3-4 are new assessments. People are referred to the Rancho post polio clinic from all over America, so any referrals for the additional respiratory, speech therapy, dietary or psychological services that may be required are usually directed to local service providers. However, Dr Chun made a point of saying that those physicians/health workers should be knowledgeable about post polio syndrome and/or be willing to communicate with the Rancho post polio team.
  
  Rancho's particular focus is on muscle function and overuse of particular muscle groups. They have access to equipment and experts that can test the capacity of individual muscle groups and devise an exercise program that specifically works muscles that can be worked, and rests those that are at risk of being overworked. People with respiratory conditions are referred to Rancho's excellent Pulmonary and Critical Care Medicine Center, part of The Department of Medicine.
  
  When asked about her thoughts on any promising research such as IvIg, Dr Chun cited a protein experiment done with polio's that was successful in improving muscle function in the short term, but eventually left people weaker a few days on – simply because the polio's had proceeded to overwork those newly 'strengthened' muscle groups. In other words, as far as this clinic is concerned, the only successful treatment for PPS is to PACE. As the sign off to one of her articles, Dr Perry wrote "Be an 'Intelligent Hypochondriac' – Listen to your body and adopt a program that avoids the strain."
  
  It was interesting to note the difference in approach by the physiatrist vs. neurologist (Dr Perlman, UCLA Medical Center) but there was no doubt that all techniques used were of benefit to their polio patients.
  
  
• Key Services/Points:
  • Seating Center
  • Center for Applied Rehabilitation Technology (C.A.R.T.)
  • Pathokinesiology Laboratory
  • Community based physicians/health workers should be knowledgeable about post polio syndrome and/or be willing to communicate with post polio specialists.
  • Care should be taken not to overuse vulnerable muscle groups. In the words of Dr Perry, "Be an 'Intelligent Hypochondriac' – Listen to your body and adopt a program that avoids the strain."
    
    

St Louis, Missouri, USA

• Post-Polio Health International (www.post-polio.org)
  Joan Headley is the Executive Director of Post-Polio Health International (PHI). PHI is an information resource for polio survivors, their families and the health care community. It actively promotes networking between survivors, professional communities and assistive equipment manufactures. PHI also publishes a quarterly newsletter, compiles the Post-Polio Directory listing post-polio health resources and polio support groups around the world, maintains a website that averages 50,000 hits per month, and funds research projects including the latest "Regulatory T Cells as a Biomarker of Post-Polio Syndrome" being conducted at the University of Arkansas for Medical Sciences.
  
  As indicated in their newsletter, Post-Polio Health, Spring 2008, Vol. 24, No. 2: "The ability of a physician to diagnose a specific disease can be significantly aided by the availability of one or several disease biological markers (termed biomarkers). No biomarker(s) has (have) been identified for PPS as yet that could assist in providing a definitive, easy and rapid diagnosis."
  
  
• Key Services/Points:
  • PHI annually funds research projects. It will be interesting to monitor results for "Regulatory T Cells as a Biomarker of Post-Polio Syndrome".
    
    
• Paraquad Inc. (www.paraquad.org)
  Joan is also on the Board of Paraquad Inc., a Center for Independent Living. As such, she was able to set up a meeting and tour of the facility for the afternoon. There are hundreds of Centers for Independent Living in the USA and approx 22 of those are in Missouri. We met with a number of key workers who each discussed their respective programs. Paraquad Inc. has been going for 37+ years and has an impressive range of services that are truly consumer driven. They employ around 120 staff with a mandatory 50% having some form of disability. Unlike ParaQuad Vic, they also have clients with sensory and cognitive problems and are also looking to expand into mental health. They have considered changing the name "Paraquad Inc." but have such a significant reputation in the state, it's difficult to 're-brand'.
  
  We were very impressed with the layout of the facility, with every area being totally accessible to wheelchairs, assistive devices everywhere – including a really neat visual telephone system for deaf workers so they can sign their conversation. Even the kitchens were well thought out, with benches that you can wheel chairs under and an easy load dishwasher. Paraquad Inc. also employs 2 support workers to assist any staff members who may require it. Programs include: Accessible Housing; Advocacy; Assistive Technology Access; Benefits Planning Assistance and Outreach; Breast Healthcare Education Program; Career Options and Employment; College for Living; Consumer Directed Services (enabling people with physical disabilities to live in their own homes by training them to hire and manage personal attendants); Deaf and Hard of Hearing; DEAF Way Interpreting Services; Enabling Mobility Center; Independent Living; Information and Referral; Peer Consultation; Public Policy; Youth and Education; and my favorite – Recycled Durable Medical Equipment. To quote from their brochure, the Recycled Durable Medical Equipment program "is a one-stop clearinghouse providing information and resources, assistance identifying needed durable medical equipment, repair or restoration of donated medical equipment and the distribution of recycled or used equipment". Equipment is donated, sanitized, repaired (if needed), and sold on for approx 25-30% of the cost of new equipment, including a 90 day guarantee. Depending on the persons' income, they can make repayments as little as $5.00 per week until paid off – or if the individual is in dire straits or even homeless, Paraquad Inc. may decide to provide the equipment free of charge. Any profits go right back into the program.
  
  During our discussions, we also learned that the Consumer Director Services included the capacity for people to nominate a family member (not the spouse) or friend to provide basic care. The rate of pay for this care is approx $8.00 per hour. 50% of consumers choose a family member or friend, and a survey of 100 of their 600+ clients revealed that satisfaction levels rated highest for family, then friends, then 'strangers' (professional support workers).
  
  Paraquad Inc. also has a strong relationship with Washington University (Missouri campus) and has many health-related students assisting in areas such as occupational therapy and research. There was so much to see in the "Enabling Mobility Center" – again, quoting from the brochure – which "is a joint program between Paraquad and Washington University, providing information, training and community demonstrations on assistive technology to persons with disabilities, their families, independent living specialists, healthcare professionals, researchers, engineers, vendors and the general public." Suffice to say we were mightily impressed!
  
  
• Key Services/Points:
  • Paraquad Inc.’s Recycled Durable Medical Equipment program "is a one-stop clearinghouse providing information and resources, assistance identifying needed durable medical equipment, repair or restoration of donated medical equipment and the distribution of recycled or used equipment". Profits go back into the program.
  • Paraquad Inc. has a strong relationship with Washington University (Missouri campus) and can utilize the services health-related students in areas such as occupational therapy and research.
    
    

In next month's issue, Mary-Anne Leithof visits Warm Springs ..................................Ed

Hehehe Corner

The pro football team had just finished their daily practice session when a large turkey came strutting onto the field. While the players gazed in amazement, the turkey walked up to the head coach and demanded a tryout. Everyone stared in silence as the turkey caught pass after pass and ran right through the defensive line. When the turkey returned to the sidelines, the coach shouted, "You're terrific!!! Sign up for the season, and I'll see to it that you get a huge bonus." "Forget the bonus," the turkey said, "All I want to know is, does the season go past Thanksgiving Day?"

My Polio Story

From Yvonne Isaacson

My polio story starts 62 years ago when I contracted polio at the age of 8 in a small town called Bulawayo in Zimbabwe (then Southern Rhodesia). I remember lying in the isolation hospital, unable to sit up or move my legs. Fortunately I could still move my arms and was able to breathe on my own. My parents were not permitted to visit me while I was in isolation and all my personal things were taken away when I was eventually transferred to the General Hospital. After about 3 months I was allowed to go home. By then I was able to sit up but still unable to walk. I remember my parents putting a bed outside under our lemon tree for me to lie on.

My next memory is of being taken to Johannesburg in South Africa and left in a place for disabled children (there were no facilities in Bulawayo). At this home I was given a brace for my left leg and a leather brace for my weakened back and tummy. I was taught to walk but was never given a pair of crutches. I realise now that if I had been given a pair of crutches at that early stage my mobility would have been increased considerably. After about a year I returned home. My parents believed strongly in faith healing and they sent me to a faith healer who encouraged me to relinquish my leg and body brace. I managed to hobble about until I was 16 when he finally admitted defeat and my parents decided to take me to an orthopedic specialist. Unfortunately by then the damage had been done; I had developed bad knock-knees and a very severe scoliosis. I was put into hospital and placed in a turnbuckle plaster. This plaster cast was in two halves with a long screw which was opened every day on the one side thus pushing my spine into a more or less straight line. Once the doctors were satisfied that the position of my spine was good enough they filled in the gap with more plaster and performed a spinal fusion through a hole cut in the back. I had 13 vertebrae fused in two operations. At the same time they decided to straighten my knock-knees by cutting V shapes in the bones above the knees and drawing the bones together. I then had to remain in plaster from my neck to my feet for many months. People were always amazed to see such a huge “thing” lying on her side in the bed.

Once the plaster cast was removed I was given a leg brace for my left leg, a body brace which was almost like a Victorian corset except that it was made of metal and leather (this was uncomfortable to wear but gave me a tiny waist) and a pair of elbow crutches. Once I was mobile again I found the crutches gave me an advantage and I was able to get around like a house on fire.

At this time I met Mike (which is a story in itself) and we started to go out together. I also attended a commercial college to equip me to earn my own living. However, after completing my college education the fused vertebrae cracked in several places and a repair job had to be performed. This meant another six months in a full body plaster cast and another operation. In order to get the spine as straight as possible as quickly as possible (without the use of the turnbuckle) I was hung in a sling from the ceiling in a curved position opposite to my scoliosis and the plaster was wrapped around my body and half way up my neck immobilizing my head. Instead of returning to hospital in Johannesburg my parents cared for me at home in Bulawayo. Mike came up with the idea of putting the backrest of the front seat of his car across the passenger seat from front to back so that my father could drag my plaster encrusted body into the car through the front door. I would lie on the backrest and we could gallivant around and go for drives. I had my 21st birthday in this cast.

Once the cast was removed Mike and I seriously started preparing for our wedding. This was not as easy as it sounds mainly because Mike is Jewish and I was Anglican. I had decided to convert to Judaism which took some time and a lot of study. After my conversion we were married in the Bulawayo synagogue on 18th September 1960.

My body was behaving itself during this time. I was working as a secretary and life was O.K. Then came the trying for children part. Unfortunately due to the many months I had spent immobile in the plaster cast and having appendicitis shortly before the first plaster was removed I could not have kids. This took us five years to discover, and then only after many tests etc. So Mike and I decided to adopt children. This was another very difficult time and will have to be told in another story.

I started to manifest with PPS symptoms in about 1973 and in 1974 my right knee collapsed. This meant that my mobility was totally compromised and it was a very hard and depressing time for me. I had two children to look after, a home to care for and a job to keep. Once again we consulted an orthopedic specialist in Johannesburg and he put a leg brace on my right leg, so I now wore braces on both legs. It did the trick and I was then able to walk again although it was now much more difficult. However, I persisted and managed to hobble around in a hit and miss fashion for quite a few years. During these years we had several major moves from Zimbabwe to South Africa and back again finally settling in a place called Pietersburg in the far north of South Africa. I must make the point here that it is comparatively easy to get paid domestic help in Zimbabwe and South Africa so I did have assistance with the children, cleaning etc.

In about 1981 I started to experience severe pain in my back and after consulting yet another orthopedic specialist I was told that the fusion had disintegrated for a second time and I would require another fusion together with Harrington rods placed against my spine to support it. By this time plaster casts had been abandoned and I was required to lie in one position for a month after the operation. I was given medication to tranquilize me and spent a month staring at a little window in my hospital ward high up on the wall so that all you could see was a small patch of sky. After the month was over I was given a very cumbersome leather and metal brace and told that I could lie down or stand but I was not allowed to sit. We organized a reclining chair which I used every day, and after a month at home I decided to return to work. I wore the brace for ten months and found that I was two inches taller.

After 1981 my body began a slow decline and I started to find that it was more and more difficult to perform tasks which were usually fairly easy for me. I had to stand up to type out my telexes as my arms began to tire very easily when I was in a sitting position. My walking deteriorated and eventually I had to start using a manual wheelchair. Once I started to use the wheelchair I found that my mobility improved. I was able to move round shopping malls and around my kitchen. Driving became tiring and difficult.

Fifteen years ago we retired to Cape Town and we now have a self contained apartment in a complex for disabled people, which means that should we require emergency care there are people available to help on a 24 hour basis. During these fifteen years I have gradually found my body getting weaker and weaker. Typing has to be done in stages. I can’t sew, crochet, knit or paint anymore. I have replaced painting (which I really loved) with making animations for my grandchildren on the computer but even that can get tiring (it is easier to use the mouse than the keyboard). My fingers are full of arthritis, my left hip is painful all the time and my shoulders and arms are usually sore. I have trouble getting up off the bed and sometimes have to call the carers to lift me into my wheelchair. I have trouble getting on and off the toilet and showering etc. Luckily I can still manage a bit of housework, like making beds, washing dishes etc. but I do have to take things slowly now. I can't get into and out of the car and have to rely on our Dial-a-Ride bus service for wheelchairs if I want to go out.

This is just one side of my PPS story. I have not touched on my feelings, depressions etc. as this aspect would probably fill many pages. I have also not mentioned my problems in dealing with the difficulties I experienced at school from both pupils and teachers; and also from people in general, not to mention fighting for disability rights with government departments. There is so much more to talk about and I will probably do so on the Bulletin Board when I can muster up enough energy. Thank you for sharing my story with me.

Editor's note....... Readers are encouraged to send in their own polio stories for publication.

Hehehe Corner

Q: Why do pilgrims pants keep falling down?
A: Because their belt buckles are on their hats!

Fibromyalgia

Fibromyalgia Can No Longer Be Called The 'Invisible' Syndrome
http://www.sciencedaily.com/releases/2008/11/081103084040.htm

Using single photon emission computed tomography, researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed.

Hehehe Corner

I am told that the best dance to do when the 'Plymouth Rock' band are playing, is the Turkey Trot.

The Bricklayer's Problem

A brick layer working on a three-story tall building had set up a pulley system so that his helper could raise the bricks up to where he needed them. His helper was complaining about how difficult it would be to get the last of the bricks up to the flat roof of the building. Just then another contractor had some material delivered and it was placed on the roof by a fork-lift brought to unload it. The brick layer had a brilliant idea and asked if the driver of the fork-lift would load his bricks up there as well. The driver agreed. The brick layer now realized that he would not need his helper any more, so he sent him home.

When the brick-layer finished the building, he noticed that he had quite a few bricks left over. The fork-lift was no longer at the jobsite, so now he had to figure out how to get the left-over bricks back down to the ground all by himself. If he dropped them, they would surely break. So he decided to use the pulley that he had set up to lower them down.

First he went down to the ground and raised a large metal bucket up to the roof level using the rope and pulley. Next, he tied the rope onto a railing and climbed back up to the roof and loaded the bricks into the bucket. Then he went back down to the ground. He knew that the bricks would be heavy, so he wrapped the rope around his hand a couple of times and then untied the end of the rope with his other hand. Well, the bricks were heavier than he imagined and with physics being as it is, he was immediately launched upwards at a high rate of speed.

As he was racing up towards the roof he encountered the bucket full of bricks coming down at an equally fast rate. He collided with the bucket and broke his nose and his shoulder. The bucket passed him by as he sped upwards. He reached the pulley just before the bucket hit the ground and broke a few of his fingers as they were pulled into the pulley.

When the bucket hit the ground, it's bottom fell out and all of the bricks spilled onto the ground. Now the bucket was lighter than the brick-layer, therefore, as the now light bucket sped upwards, the brick-layer took a shot to the groin when one of his legs slipped into the empty bucket.

He then tilted enough to fall out of the bucket and continued with his gravity experiment. Eventually he landed on top of the pile of bricks and broke both feet. He collapsed in pain there on the bricks, but he was glad to be alive. He let go off the rope and cried out for help. Now, without any bricks in it, the bucket was much lighter, so it dropped down again and hit him on the head. The last that we heard of the brick-layer was that he was looking for a good Doctor.

Do People Still get Polio Today?

Some Frightening Data as at 18 November 2008

Case breakdown by country

Polio Survivor Shares her Childhood

Even the vibration of the floor or touching a sheet to one's skin is excruciatingly painful for a polio patient, said Susan Shreve, an English professor at George Mason University.

Shreve, who was diagnosed with polio when she was 1 year old while living in Toledo, will talk about her book, "Warm Springs: Traces of a Childhood at FDR's Polio Haven" today at 1 p.m. in the Ward M. Canaday Center for Special Collections in Carlson Library.

Shreve said Warm Springs offered a child like her plenty of freedoms, but she was a bit of a brat.

"I was a troublemaker, and I was a little bored, so I used my free time to cause a little trouble; that's what the book is about," she said. "You know, it was chasing boys, trying to get some activities going, doing things that were considered wrong - not bad trouble, but you know, trouble is trouble," she said.

She described her symptoms as what would seem like a terrible flu today, similar to an influenza epidemic.

There are three types of the disease.

Shreve's polio paralyzed her for about three weeks.

"Gradually, whatever part of you, whatever muscular part of you or nerve part were not destroyed by the virus, gradually came back. [In my case,] it was my right side that was affected," she said.

When Shreve recovered, the right side of her body was damaged, particularly her leg.

"They were not very good at diagnosing polio; they thought I might have strep throat - a particular kind of strep throat that paralyzes you," she said. "So yeah, they weren't very sophisticated."

Shreve said she still has some visible remnants from polio but is in pretty good shape.

"I take very good care of myself, and I exercise every day. I mean, it sort of takes work," she said.

Shreve's mother, who did extensive research on her condition, had sought treatment right away. She did a tremendous amount of exercises with her, which Shreve said made a huge difference.

"Essentially, her attitude was, 'Get it together and do what you can,'" she said.

When Shreve was 11, her parents sent her to Warm Springs, a hospital for polio patients in Georgia, to seek surgery and recover. She was there periodically from 1950 to 1952.

The March of Dimes supported Warm Springs, but others could donate or patients could receive free care.

She said most of the time she spent there was simply waiting to heal from surgery.

Shreve said the time alone at Warm Springs gave her the chance to create stories. She said she never thought she would write about her experience again, after writing an unpublished "bad novel" at the age of 19. But having to live without her parents between the ages of 11 and 13 made her experience an unusual one, she said.

Shreve, married with four children and three grandchildren, said her family enjoyed reading her memoir.

"They thought it was kind of cool to read about their mother when she was a little girl," she said. "I almost never talked about having polio, so it was interesting for them, from that standpoint."

Director of Disability Studies Jim Ferris said the treatment of people with disabilities has dramatically changed from 50 to 60 years ago.

"We don't closet away [disabled people] to the extent or in the ways that were considered appropriate just not that long ago," he said.

Shreve reminisced about her time in school.

"The part that affected me in a negative way was that ... I think people with disabilities are generally, in any society, slightly shunned and, as a student in school, I have been mercilessly teased, so that was hard," she said.

Ferris said disabled people are better integrated into society, for example, in the classrooms of universities, high schools and middle schools.

"Having disabled people out and about in the world is far more common today," he said.

"The biggest thing is getting out there and being a part of the world, and as we continue to do that, it seems pretty likely to me that will continue to cause the stigma to crumble," he said.

Shreve taught at George Mason University for about 30 years and had taught on and off at Princeton and Columbia University within that time. She graduated from the University of Pennsylvania, Philadelphia and received her masters in English from the University of Virginia. Shreve has written 13 novels and 30 children books and this is her first memoir, and her last, she said.

"Just to write a memoir about my life doesn't look particularly interesting," she said.

Hehehe Corner

Q: Which side of the turkey has the most feathers?
A: The outside.

Robots to the Rescue?

A robotic suit that reads brain signals and helps people with mobility problems will be available to rent in Japan for $2,200 a month starting soon -- an invention that may have far-reaching benefits for the disabled and elderly.

HAL -- short for "hybrid assistive limb" -- is a computerized suit with sensors that read brain signals directing limb movement through the skin.

The 22-pound battery-operated computer system is belted to the waist. It captures the brain signals and relays them to mechanical leg braces strapped to the thighs and knees, which then provide robotic assistance to people as they walk.

Cyberdyne, a new company in Tsukuba outside Tokyo, will mass-produce HAL. Two people demonstrated the suits at the company's headquarters on Tuesday.

A demonstration video also showed a partially paralyzed person getting up from a chair and walking slowly wearing the HAL suit.