IPPSO NEWS MAGAZINE

 Vol 3 No. 1 January 2009                                                  Editors: Mike and Yvonne Isaacson

It is ability that counts - not disability

I wanted to bring you up to date on what has been happening with our IPPSO Board of Directors, volunteers and members. Firstly, our President, Shari, had rotator-cuff surgery, and thus appointed me to take over for a while as Acting President. I sure wish her a speedy recovery! It is very painful for her to type right now.

Because of this, and other matters arising around the holidays, the Board had to postpone the election process for the IPPSO Board until March 2009.  If you would like to apply to run for a position on the board, please send a resume, stating which position you are interested in, to our Election Committee Chairperson, Alma Curry, at: KD6LS3@charter.net . Please note that you must be current in your annual $20 dues to IPPSO, in order to run for office or be able to vote in the election.  Please go to http://www.ippso-world.org  where you can pay your dues by PayPal or send a check to our Treasurer:

Kathy Husmann

423 First Avenue South

Hibbing, MN  55746

Contributions are always needed as there is just never enough money in our Treasury. One of our main focuses right now is to work with Dr. Sharma at the University of Miami School of Medicine to start a new U.S. clinical study on IV Gamma Globulin.  Dr. Borg in Sweden is proving that it can help those of us with Post Polio! 

Our Board members end up paying out-of-pocket for so many things that are needed to keep IPPSO functioning.  Board members need to keep up-to-date on the latest post polio information so we can pass it along to all of you.  IPPSO must pay for web hosting. Board members have to keep their computers up and running at all times to keep IPPSO alive.  In doing so, we have helped members in many ways on a timely basis. Most of us are on fixed incomes, so we have to sacrifice to do this.  If a lot of you would sacrifice a little, then we would not have to sacrifice a lot! 

Many people enjoy our IPPSO Bulletin Board yet have not registered as full IPPSO members.  We need you to register at “Become a Member” http://www.ippso-world.org and help us to fulfill our mission.  We really need your financial help even if it is only $20 a year. 

Our current Board of Directors include:

Shari Fiksdal, President

Barbara Gratzke, 1st Vice President

Mary Gildea,  2^nd Vice President

Susan Kerr, Recording Secretary

Barbara Oniszczak, Corresponding Secretary

Kathy Husmann, Treasurer

Mike Kossove, Director of Education

Elizabeth Lounsbury, Director of Public Relations / Liaison

Medical Director: Vacant

I wish to thank all our Board members and volunteers for all the many hours they spend in an effort to support our members and their caregivers, friends and families.

Our current volunteers include:

Member Liaison: Alma Curry

Yahoo Group consultant:: Dolores Sieg
Member Yahoo Group Moderator & Social Worker: Sara Bowlden

Member Yahoo Group Moderator: Johnny Marks

Magazine Editors: Mike and Yvonne Isaacson

Sends e-birthday cards to IPPSO members: Barbara Erlandson

Post Birthday Wishes on Yahoo member BB: Marilyn Klotzbach

Webmaster: Jim Fennel

Alternate Webmaster: Jonathan Dowds

Chat Hosts: Jean Simmons & Eydie Polk

Bulletin Board Hosts: Sally and Sandy Rosenthal

We started a new “Polio World” Yahoo group bulletin board in 2008 for global PPS support group leaders and advocates to support each other and share ideas and information.  Our new Board member, Elizabeth Lounsbury, who is Chairperson of Polio Canada, will put a lot of effort in 2009 into expanding our “Polio World” Yahoo group and seeking affiliates from all the different countries for IPPSO. This information will then be put on our web site. We feel that uniting major Post Polio leaders around the world is very important so that we can speak with a much louder voice and share successes and failures of initiatives. We hope to obtain many new creative ways to benefit our Post Polio community. We all have limited stamina with PPS, so we feel it would be so much more time-efficient not to have to “reinvent the wheel” each time we take on a task.

All our moderators for the Member and the Polio World yahoo groups do a great job in investigating new members that apply to be sure they are legitimate, send welcome emails, clean up and approve posts, and keep all questions answered. Our Board members and Yahoo group moderators also support and answer questions that we receive from many people via private email and telephone calls.

Our secretaries, Susan and Mary, spend lots of time performing the administrative functions of IPPSO. These include keeping all our communications archived, maintaining the database of members, answering questions from members, editing and sometimes drafting communications that go out to members, medical professionals, global PPS leaders, and others, recording Board meeting minutes, and much more.

Our past Treasurer, Diane Ploussard, had to resign in 2008 due to personal issues and our Assistant Treasurer, Kathy Husmann, agreed to be appointed to that position. We do need someone to act as her assistant in order to spread out the workload. In fact, the IPPSO Board decided some time back to have as many Board members and volunteers, as possible, cross-train so that more than one person is knowledgeable to take over any function.  With all our own medical and personal issues, we often don’t have the stamina to keep up with running IPPSO smoothly.

Professor Mike Kossove, our IPPSO Director of Education, is still teaching at Touro College in New York and, thus has a busy schedule. He still makes the effort though to speak at various post polio support groups about polio and PPS. In 2009, he is already scheduled to speak in:

January - Daytona Beach, Florida

February - Boca Raton, Florida

March - Tucson, Arizona

If you haven’t joined our Yahoo member group yet, go to our web site at www.ippso-world.org and select the menu choice of “IPPSO BULLETIN BOARD AND CHAT” and join. You do need to register first at www.yahoo.com and have a Yahoo ID name and password to access our Yahoo bulletin board.

For those of you who want to voice or type ‘live” chat, you will have had to download the Yahoo Messenger program at www.yahoo.com and then add one of our chat hosts or me as a Yahoo contact in your address book. My yahoo ID name is: barbarag2660. Add me as a contact on your Yahoo Messenger screen, and I will see you get invited into our Yahoo chats. We post chat times and dates on our Yahoo Bulletin Board. We hope to schedule chats with a guest speaker again this year, as we have done in the past, so our members can learn more about topics they are interested in from professionals in different fields. We are always looking for volunteers to host more chats.

We continue to get lots of new members on our web site and at our Yahoo Bulletin Board. We do need to initiate a membership drive though, as so many don’t know that we exist. They come to us now after searching “far and wide” and then tell us they wish they had found us sooner as it would have saved them a “lot of grief” to have support or questions answered sooner.

I, as well as IPPSO Board members Barb Oniszczak and Elizabeth, will be paying our own way to attend the Post Polio Health International (PHI) sponsored, PPS conference in Warm Springs, GA, USA from April 23-25, 2009.  I will be speaking on behalf of IPPSO in a Warm Springs conference workshop and am currently drafting a presentation about how polio survivors can best use the Internet to enhance their lives. Thus, I'm slowly putting together web sites where we can access various PPS newsletters globally and find conferences and support groups near you, as well as other helpful web sites. I’m hoping when I'm finished that our members will find it useful too. If it is possible, I urge you to think about attending PPS conferences. You can go to the web site www.post-polio.org for the Warm Springs Conference information. There is a retreat also which is four days before the conference where you stay at a building on a lake on the Warm Springs Rehab Institute grounds called Camp Dream. The retreat is limited to 55 people as I recall, but you meet one on one and in small groups with PPS specialists who try to answer all your questions and observe you individually. This does cost extra and I cannot afford it, but hope to get more feedback on it from others.

I attended my first 2-1/2 day International Post Polio Conference hosted by Post Polio Health International (PHI) in St. Louis in 2005.

I was the conference planner for our 2 1/2 day Post Polio International Conference, which was hosted by our International Post Polio Support Organization (IPPSO) and my Post Polio Assn. of South Florida (PPASF) group that was held in Miami, Florida in April 2007. This conference was funded up front, in order to put down deposits needed, by PPASF, and PPASF ended up being $3,500 in the “red” because of extraordinary costs necessary for an audio/video company and equipment.

I have 16 camera tapes of the speakers at our Miami conference, as well as multiple interviews of polio survivors. I had a Miami PPS group member who was retired, but had a background in cable television and making documentaries, video tape the conference. Unfortunately, he had severe medical issues and has to date been unable to complete the task of getting those tapes to a media to be able to get out to the Post Polio community and medical professionals, as well as complete a documentary which we had hoped to find outlets to improve Post Polio awareness.

HELP! I mention the camera tapes; just in case, hopefully we have someone on our IPPSO mailing list that might be able to offer us advice or volunteer time to complete this project. My husband and I have spent hours and hours just trying to figure out how to transfer these camera tapes to DVDs and edit, but are just not that computer literate enough to resolve error messages and the hardware issues needed to do this. I was told we might download to “YouTube” as our web site server is not large enough to put them on our web site, but then our web site could link to “You Tube”. Then was told you could only do 10-minute segments on “You Tube”.

I have visited many Post Polio Support group meetings and met with PPS group leaders and advocates as my husband and I have traveled the US in our wheelchair accessible motor home for 6 months at a time over the last 2 years.  I find it always an up-lifting experience to be in a room and visit with dynamic polio survivors, and it is always interesting to learn more from PPS medical specialists about how to treat PPS and have the best quality of life possible.

We are in the process of up-dating our “PPS-friendly” medical professional list on our web site. If you have a doctor, physical therapist or other medical professional that you have used that seems very responsive and helpful in the treatment of your PPS, please send their full name, telephone#, medical specialty, City, State or Region, and Country to our Corresponding Secretary, Barb O. at email address: abufflogal@yahoo.com

Last, but certainly not least, we are most interested in the research results currently with IV gamma globulin assisting those with PPS to increase muscle strength, stamina, and lessening pain. It seems to be the best option for us currently other than nerve growth hormone, which is not far enough along to be of benefit to us yet.

Please see articles in this newsletter and think seriously about donating monies to our IPPSO Research Fund so that we can support research studies to find successful treatment for PPS, get sanctioning in our various countries, spread the information to the medical community, and get health insurance coverage.

We have been communicating with researchers who are ready to proceed, but we have to find funding or develop funding resources. We would appreciate it, if any of you would contact us, if you have any ideas for obtaining funding.

We strongly encourage all of you to be more active members of IPPSO by volunteering for projects, taking the time to write articles to the editor for our IPPSO Magazine (Mike Isaacson at magazineeditir@ippso-world.org ) emailing us at our personal email addresses or go to our web site and select “OUR BOARD CONTACT INFORMATION” and email us articles you have found. In fact, send any ideas you have to enhance the quality of life for our community of polio survivors and their families and friends. Also share your story with us all!

We hope you will go to our web site at http://www.ippso-world.org, as we have a lot of good information there including our 2008 IPPSO Magazines. We spent a lot of time in 2008 updating it.

We look forward to hearing from all of you. I’d be glad to answer any other questions or hear any suggestions, you may have. Best Wishes to all,           Barb Gratzke.

Hehehe Corner

My computer thinks that the Ethernet is something that is used to catch the Ether Bunny.......

Englewood, New Jersey, USA

§         The Post-Polio Institute (www.postpolioinfo.com)

 Dr Richard L Bruno is the Director of The Post-Polio Institute and quoting from his bio, “Dr. Richard Bruno is a Clinical Psychophysiologist treating and studying mind/body problems, including chronic pain, fatigue and stress, as well as Post-Polio Sequelae (PPS) 

Wikipedia explains that “While psychophysiology was a discipline off the mainstream of psychological and medical science prior to roughly the 1960 and 1970s, more recently, psychophysiology has found itself positioned at the intersection of psychological and medical science, and its

popularity and importance have expanded commensurately with the realization of the inter-relatedness of mind and body.” Dr Bruno wrote “The Polio Paradox” which works on this principle.

Clinic Structure

Dr Bruno recently moved from a practice suite within Englewood Hospital to a modest clinic a bit further down the road. One of the reasons for this is so that patients don’t feel anxious by having to enter a hospital setting due to the possibility of unpleasant memories of the past. His clinic sees 4 new patients per week, 2 ‘local’ (up to 2 ½ hrs drive away) and 2 from everywhere else. He has treated many polio survivors from all over the world. During the initial assessment, Dr Bruno will see the patient for 1 hour, followed by contracted specialists including a medical doctor, physical therapist, orthotist, dietitian, occupational therapist, and orthopedist.

Dr Bruno’s main focus is on assisting the patient with ‘reprogramming’ the habits of a lifetime from overworking/overachieving to regulating their pace to match their energy capacity. He likened the people he sees who present with PPS as “driving a car on an empty tank”. We also talked about the need for people to eat a proper diet and ensure they get enough protein to strengthen the muscle – especially in the morning. Dr Bruno cited the case of one patient whose energy levels made a dramatic improvement in a short period of time due to eating a solid, protein rich breakfast in the morning.

Immunization

Dr Bruno also works to keep the immunization message on the national agenda and, in response to one of his initiatives, “Actiononline”, the Journal of the United Spinal Association, printed the following information earlier this year:

“The Centers for Disease Control has reported that 92% percent of US toddlers are vaccinated against polio. Ninety-two percent sounds good, until you realize that leaves more than one million US children unvaccinated. Between 2005 and 2006, polio vaccination dropped in 20 states and in 10 large cities. While any reductions in polio vaccination are troubling, the location of the cities and states where vaccination dropped is frightening. The cities are major points of entry into the US—New York, Philadelphia, Houston, and Seattle—where a nearly 4% drop was reported. It’s no surprise that toddlers living in poverty have the lowest polio vaccination rates—below 87% in Boston, Indianapolis, Memphis, Phoenix, Detroit, Houston, and Seattle—rates lower than in Vietnam.”

     Dr Bruno and I went on to discuss the concept that government and funding bodies have the idea that PPS will not be an issue for very much longer due to the age demographic of polio survivors. However, he provided statistics of the numbers of Americans who were still contracting polio years after the vaccine had been introduced in 1955.

Population-adjusted numbers also hold true for Australia which means there are many Western polio survivors who are still only in their 40’s and, therefore, have a lot more living to do. We also need to think about the people in countries where polio is still prevalent, or have only more recently become ‘polio free’ (how long this remains the case is in direct proportion to how scrupulously the immunization rate is kept up).

All in all, it was an interesting discussion, and Dr Bruno and I concluded with the idea of possibly collaborating with Rotary International to distribute promotional material via their members to raise awareness of PPS in the community. We also realize that Rotarians often suffer from ‘polio fatigue’ due to all the work they have done through the years with the Polio Eradication Program. However, we both believe there are many, many more polio survivors experiencing PPS than those who have known how and where to seek advice, so public awareness campaigns are still required.

§         Key Services/Points:

The Experience                                                                                                         

                                                                                                          New York, New York, USA

§         Susan Fish, Physical Therapist

Susan was recommended as an interesting person for me to see via Dr Margaret (Peggy) E Backman. Susan told me that she and Peggy had met through joint presentations a number of years ago, which lead to subsequent referrals to see polio survivors. Susan advised that there are actually no clinics working with post polio in the whole of New York. Of course, there is Dr Bruno across the Hudson River in Englewood, New Jersey, but this lack of service provision for the huge numbers of polio survivors out there, is surprising and unfortunate. Over the years, Susan and Peggy have tried to generate interest in starting such a service but as it is seen as something without much of a future, no-one was prepared to invest in the idea. [Editors Note: Susan Fish appears to be totally mis-informed. Many PPS Doctors practise in New York, for instance Dr. Alba and Dr Jubelt who are well known for their work and publications regarding PPS. Names and addresses and details of New York Doctors are available from IPPSO

See http://www.ippso-world.org/ppsinfo/doctors.htm#ny for details.]

Susan is a private Physical Therapist and has learned most of what she does through the polio survivors themselves. Until last year, all her patients were required by law to be referred through a medical practitioner. Although people can now self refer, this rarely happens because of the out-of-pocket cost of approx. $120 per session. Although Susan only works with a couple of polio survivors at any given time, she has done so over many years and is probably considered the ‘expert’ in New York.

Devising an effective exercise program for PPS can be difficult to achieve, and Susan has seen the effects of both overworking AND underworking post polio muscles - which can be just as harmful. This is where it is so important to have the skills of an informed Physical Therapist.

PT’s need to understand the limitations caused by polio’s motor neuronal damage, therefore not trying to build muscle strength where this is simply not possible while, at the same time, maintaining strength in areas that can and should be exercised. No exercise at all results in pain and fatigue caused by under worked muscles, not to mention weight gain – which just adds to mobility (and other) problems.

Susan was interested to learn about my experience of what other innovative yet practical things individuals and institutes are doing. This discussion highlighted the fact that, in this day and age, information can be readily shared through email contact. No practitioners need to work in a vacuum when there are so many ‘experts’ willing to share their knowledge and skills for the benefit of all polio ‘patients’.

Susan is now only working part-time with a view to retiring in the not too distant future. As a sole practitioner, Susan has no successor/s with her level of expertise, leaving New York bereft of PPS specialists.

Key Points:

§         There are no PPS clinics in the whole of New York

§         PT’s need to understand the limitations caused by polio’s motor neuronal damage

§         No practitioners need to work in a vacuum when there are so many ‘experts’ willing to share their knowledge and skills for the benefit of all polio ‘patients’

§        

 Susan’s impending retirement will leave NY with no PPS Physical Therapy specialists

§         Dr Margaret E Backman (Peggy), Clinical Psychologist

As indicated in one of her bio’s: “Margaret Backman, PhD, is a Clinical Psychologist [specializing in Health Psychology] in private practice in New York City, who has been working with survivors of polio for many years, providing supportive psychotherapy, lecturing and writing articles on Post Polio Syndrome. Dr. Backman’s most recent book, "The Post-Polio Experience" provides psychological insights and coping strategies for polio survivors and their families.”

Peggy‘s involvement with post-polio really started in the early to mid 80’s. She had a female client who came to see her with all kinds of information she had found on post-polio, which was surprising given the limited knowledge of the day. Peggy had already been working with people who had various other illnesses such as kidney problems, cancer, etc. and had written a book: “Psychology of the Physically Ill Patient” directed at clinicians who were working with people with medical problems. Her reason for writing “The Post-Polio Experience” was almost as an ongoing legacy for when she stops practicing. Peggy felt that she had so much knowledge stored up through what she had learned from her patients, that it was important not to lose it, especially for those polio survivors who are yet to experience post-polio.

In one of the chapters of her book, Peggy explains why she doesn’t subscribe to the theory of polio survivors having a particular personality ‘type’. She believes the sample may be biased due to the fact that it is mainly the more assertive and/or confident polio survivor who has been seeking information and assistance for their PPS. As these people are presenting with the issues, these are the ‘personalities’ that have been noted.

Many people who contact both Peggy and Susan Fish (because they are listed in Post-Polio Health International’s Directory for New York), are actually looking for a medical doctor. Finding one who understands about post polio appears to be as much of a problem in a large city like New York and, for that matter, throughout all parts of the USA we’ve visited, as it is in Australia.

Peggy suggested providing the doctor with a small brochure – such as the one developed by the Polio Network Victoria – so they don’t feel swamped with information but can use it to research further. She also believes it’s a good idea to have a list of questions to ask so the patient can feel more focused during the appointment, thereby not wasting either their or the doctor’s time.

On the subject of a polio survivor being referred by their doctor for psychotherapy, Peggy felt that it was important that the patient understand the ‘team work’ nature of this type of referral as opposed to them thinking that the doctor had “given up on them” or that it was “all in their head”. We went on to talk about the role of the family and ‘significant others’ in supporting the polio survivor to cope with progressive changes in lifestyle – as well as how dealing with post polio impacts on the lives of people around them. Qualitative changes Peggy has noted in her consultations with polio survivors are increasingly about the ageing process and the range of fears this raises for people.

In her practice, Peggy states that the sessions aren’t all about the polio but that people have whole lives which may include problems not connected to the polio at all. Then, if one subscribes to stress factors impacting on inflammation thereby exacerbating PPS symptoms, as per the theory presented by Dr Marcia Falconer and Prof Edward Bollenbach, any ‘stressors’ should really be addressed in order to relieve these symptoms.

Key Points:

§         Doctors should be given a small brochure to introduce them to PPS

§         A list of questions to ask during an appointment avoids wasting both the patient’s and the doctor’s time

§         The ageing process appears to be the most troubling aspect for people

§         It is important that the polio patient understands that a referral to a psychologist doesn’t indicate that the doctor thinks it’s “all in their head”

§         The role of the family and ‘significant others’ is vital in supporting the polio survivor to cope with progressive changes in lifestyle

§         Any ‘stressors’ should be addressed in order to relieve symptoms of PPS

§         When Peggy stops practicing, “The Post-Polio Experience” will be her ongoing legacy

Framingham, Massachusetts, USA

§         Spaulding Rehabilitation Hospital Network, Framingham

Medical Director, Dr Darren Rosenberg’s specialty is Physical Medicine and Rehabilitation, also incorporating Osteopathic Manipulative Medicine. Dr Rosenberg took over as Medical Director from Dr Julie Silver last year and is committed to carrying on the International Rehabilitation Center for Polio (IRCP) that she started in 2001. The ‘youthful’ Dr Rosenberg believes there will still be a need to provide services for post-polio patients through to his retirement. Whereas Dr Silver learned much about treating patients with PPS through Dr Lauro Halstead (see Washington NRH), Dr Rosenberg has honed a full range of skills and treatment options from the established team of therapists and the patients themselves. An interesting emphasis for all staff working with PPS patients is prescribed reading from a variety of books that provide a framework for the experience of a polio survivor and, of course, Dr Silver’s book is one of them.

Because of his skills specialty, Dr Rosenberg believes manipulation has assisted his post polio patients with freeing up motion and ambulation, helping with breathing problems, providing pain relief, and increasing tolerance for bracing. He also believes that there is scope to incorporate people with other neurological conditions into the polio program such as Parkinson's Disease, MS, etc., which may be the future direction for the IRCP.

Dr Rosenberg is currently seeking opportunities to do research in areas such as: sleep apnea in polio survivors; and the effect of osteoporosis in the polio affected limb – especially in training technicians to do bone density scans on the polio affected side, not just the area indicated by standard protocol.

Anna Rubin and Liz McKenney are the prior and current Co-ordinators of the IRCP at Spaulding. Anna and Liz provided a joint overview of the role of Co-ordinator for the IRCP, although Anna has since moved to an unrelated position within Spaulding. The IRCP sees approx 300 polio survivors per year, many from other states, and some from overseas. There is one large and two smaller polio support groups in Massachusetts but these are not connected to the clinic apart from accessing services.

There is an educational component to the role insofar as giving talks at Rotary and other community meetings to which they are invited. Spaulding runs a school program which focuses on general disability awareness called “In My Shoes”. This is a 2 day program which also incorporates a polio survivor talking about his/her own experience.

However, the main thrust of the Co-ordinators’ role is to respond to enquiries from polio survivors about the services being offered, and co-ordinate the clinical visits working through potential needs such as energy conservation and sleep hygiene, exercise, equipment, bracing, orthotics and mobility devices, psychological services, medication and tests.

A key interest I had in talking with Anna was about her involvement with the “Oral History Project”, the basis of previous Medical Director Julie K Silver’s, book called “Polio Voices: An oral history from the American polio epidemics and worldwide eradication efforts”, published in 2007 and co-authored with Daniel Wilson, PhD.

 This was a four year project which entailed recruiting polio survivors from all over the USA to work through an interview questionnaire designed by Dr Silver in order to document their account of having had polio. Anna interviewed 200 people which yielded 100 accounts being used in the book. The project also instigated the Smithsonian Institute’s Polio Exhibition which we saw in Warm Springs, as well as a 300 strong reunion celebrating 50 years since the release of the Salk vaccine. Anna presented us with a copy of each of Julie Silver's books to add to the Polio Network library.

Robert (Bob) Drillio does all the bracing for IRCP patients through his company, “I AM Orthotics and Prosthetics”. Bob is clearly very passionate about working with polio survivors and has been doing just that since he was 17 years old. We were shown brace after brace incorporating many innovative features he had designed to make them lighter and more supportive of the polio leg, knee, ankle and foot. There were lots of great designs, including carbon fiber models, but Jill was particularly taken with one design using a new type of knee lock. For someone only requiring a bit of additional support we both liked a lightweight ankle-foot orthosis used for drop foot called “Foot-up”:

www.ossur.com/bracesandsupports/ankle/anklefootorthoses/foot-up. Bob quoted a 93.3% success rate in his bracing manufacture and the two patients we met whilst he was seeing them in the afternoon vouched for his superior skills in the area of polio bracing.

Psychologist, Dr Stephanie Machell, is actually the daughter of a polio survivor, a fact she says puts a lot of patients at ease. Her inside knowledge gives her a leading edge in understanding and working with the issues surrounding polio and post-polio. At the Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living: Strategies for Living Well, Stephanie gave a presentation entitled: “Trauma Treatment: What is it and What are the Benefits?” which was given an excellent review by attendee, Mary Kinane, and written up on Page 6 of The Lincolnshire Post-Polio Information Newsletter Volume 5 - Issue 5 — August 2005:

www.lincolnshirepostpolio.org.uk/downloads/lincpin/lincpinv5i05august2005web.pdf.

Stephanie confirmed that counseling helps relieve a variety of ‘stressors’ that, in turn, can help alleviate PPS symptoms such as chronic fatigue.

Speech Therapist, Carolyn Balinskas, works with swallowing disorders, as well as sleep apnea, and cognitive fatigue. Carolyn teaches patients compensatory strategies for cognitive fatigue such as: limiting periods of concentration; taking frequent breaks; note taking; list making; visualization; “chunking”; mnemonics; prioritizing activities for ‘good days’; and many other techniques. There is a lot of cross over with Occupational Therapists, but it is complementary. I’m sure a number of people would greatly benefit from these types of management strategies.

Clinic Structure

Dr Rosenberg is justifiably proud of the range of specialists he has working in the Center, and we were later treated to an in depth team case study / information session with PT’s, Kristeen Blossfeld and Beth Grill, and OT’s, Maria Cole and Laura Ryan, as well as Assistant Site Manager and PT, Terry Sutherland, and Liz McKenney, IRCP Co-ordinator. The case study was an excellent way to present the range of treatment options offered to a post-polio patient who attends the IRCP.

A key to the examination and resulting suggestions for management strategies is based on what goals the patient wants to achieve. In this case study, the patient wanted to gain an understanding of what to expect in the future with PPS and learn ways to reduce fatigue and pain. Of course, a thorough background is taken including medication used; home environment/support system; sleep/fatigue issues; trip/fall history; pain; posture; muscle strength; range of motion; leg length; and functional mobility.

After working with the range of therapists available at IRCP, the expected outcomes for this patient included:

A range of tools are used to gain knowledge of the patients’ issues, both for the therapist and the patient themselves. One that is not unique, but definitely revealing, is the ‘Daily Activity Log’ that is used by the OT. This is a simple sheet with 3 columns: Time (6.00am – 12.00am) / Activity / How did you feel? Filled out in hourly increments throughout the day, it gives a clear indication of where their ‘hot spots’ are and how this can impact on that all important ‘energy bank’.

Following an initial assessment, all the therapists involved meet together with the patient and any ‘significant other’ to discuss the process and to go over any points that need clarification. This is especially important when the patient has come from out of state or overseas as they will need to take information back to their own physicians.

It was made quite clear by all the therapists we spoke to at the IRCP that their sole objective was to assist the patient to achieve their own goals, backed up by the philosophical belief that although they may be ‘experts’ in their field, the patient is the ‘expert’ on their own body. This level of respect is a great adjunct to the patient’s therapeutic experience.

One of the most promising things about the IRCP is that the team is young, motivated, stable, and committed to ensuring their post polio patients have access skilled clinical services into the future.

§         Key Services/Points:

§         Dr Rosenberg believes there will still be a need to provide services for post-polio patients through to his retirement

§         All staff have prescribed reading from books that provide a framework for the experience of a polio survivor

§         Manipulation has assisted post polio patients in freeing up motion and ambulation, helping with breathing problems, providing pain relief, and increasing tolerance for bracing

§         There is scope to incorporate people with other neurological conditions such as Parkinson's Disease, MS, etc. into the polio program

§         The “Oral History Project” was a 4 year project recruiting polio survivors from all over the USA

§         All therapists involved in an assessment meet together with the patient and any ‘significant other’ to discuss the process

§         Staff believe their sole objective is to assist the patient to achieve their own goals, backed up by the philosophical belief that the patient is the ‘expert’ on their own body

§         This team is young, motivated, stable, and committed to ensuring their post polio patients have access to skilled clinical services into the future

The Experience

Toronto, Ontario, Canada

§         Polio Canada / Ontario March of Dimes (www.marchofdimes.ca / www.poliocanada.com)

Sheila Casemore is the Group Development and Support Coordinator, National Programs at Ontario March of Dimes and Rehabilitation Foundation for Disabled Persons Canada, Stroke Recovery Canada and Polio Canada. Sheila also introduced us to polio survivors, Jan Nichols, Chair, Toronto/York/Peel Post Polio Chapter and Elizabeth Lounsbury, Chair of Polio Canada.

Polio Canada was established approx 5 years ago in response to the growing need for PPS information and established contact points throughout Canada. Their charter is to support and inform the community and health care professionals through five main services: Polio Survivors Registry, Health Care Professionals Registry, Education and Information, Support Groups and Conferences. Polio Canada also provides a comprehensive information package on post-polio syndrome, free subscription to its bi-annual newsletter, local chapter newsletters and bulletins on news and events.

We spoke for some time on the subject of the soon to be established “Polio Australia’s” ongoing communication with Polio Canada, Post-Polio Health International (see St Louis, USA), and other large networks in Britain and Europe with a view to forming “Polio World”. This may sound a bit ambitious, but in the era of email and internet technology, there’s no reason why we can’t all become more cohesive. The purpose of such a union would be to try and co-ordinate our awareness campaigns and support each other through a united voice, thereby maximizing the impact.

A significant issue was discussed regarding Ontario’s only post-polio clinic being closed a few years ago, despite intensive lobbying by Polio Canada and polio survivors throughout the province, because the hospital being funded to run the service decided to pull out. The message is repeated wherever we go, generic clinical service providers just don’t know how to work with polio survivors without some kind of knowledge/training in the area.

Ontario March of Dimes has taken on a major role in the area of stroke recovery and is slowly venturing into running joint support group activities with their polio and stroke clients. This is only possible because funding is being provided by pharmaceutical companies producing drugs for stroke recovery. All participants understand the differences in their respective disabilities/abilities, but both appear to be benefiting from these activities. We continued to discuss the potential for alliances in clinical service provision for a variety of groups ageing with a neurological condition.

As an adjunct to this lunchtime meeting, Sheila suggested that we meet up again that evening at the Royal Ontario Museum (ROM) for an exhibition put together by Disability Studies students at Ryerson University called “Out From Under”. One of the features of this exhibition depicted the story of a man by the name of Rev Roy Essex, a Baptist Minister whose daughter, Sheila, contracted polio during the 1950’s. Sheila was institutionalized due to her dependency on a respirator. Against medical advice, Rev Essex brought his daughter home, learning how to repair her ‘cuirass’ respirator via telephone contact with the manufactures in the USA. Rev Essex went on to volunteer his services with other polio survivors, traveling around the countryside to fix respirators. Karen Yoshida, one of the contributors to this exhibition, is quoted as saying, “Through this work I have come to recognize how today’s Independent Living Movement and its origins during the 1970’s were actually built upon unrecognized histories such as this.”

A Polio Story on UTube

From Professor Mike Kossove

This is a film (3min 23 sec) called "Polio, My Journey. It is well worth watching. Go to:-