POLIO NSW INC formerly Post-Polio Network (NSW) Inc
N E T W O R K N EW S
Incorporating – Polio Oz News
Editors: Nola Buck and Susan Ellis PO Box 2799, North Parramatta Email: [email protected] NSW AUSTRALIA 1750 Website: www.polionsw.org.au Phone No: (02) 9890 0946
Patron: Professor Emeritus Sir Gustav Nossal AC CBE FAA FRS
President’s Corner Gillian Thomas
Our popular Country Conference is back! This year we are returning to Canberra where we held our first such event in 1998. Join us at an informal dinner on Friday, 17 October , and then attend the Conference on Saturday, 18 October . A lot of work has gone into lining up a wonderful array of speakers and topics, so please show your support for the organisers and the speakers by coming along – see further details on page 2. As usual, everyone is welcome, not only those within easy reach of Canberra. A Registration Form is enclosed – please RSVP by Friday, 10 October . The very reasonable $35 cost for the day includes morning and afternoon tea and lunch – we look forward to seeing you at what promises to be a great day.
Meanwhile our Mid-Year Seminar held on Wednesday, 23 July, was a very successful meeting and we are pleased that members are taking the opportunity to attend our new-look Seminars which now each feature a range of informative topics. Sue Ellis has done her usual sterling job of writing up the presentations for the benefit of members unable to be present. You can read her comprehensive Report on pages 7 to 21.
On Friday, 12 September, Polio Australia’s annual NSW “Walk With Me” fundraiser was held in Parramatta. Once again Northcott invited NSW walkers and wheelers to participate in their Western Sydney event. The small but enthusiastic “Polio Power NSW” team and friends raised over $12,000 which will be shared equally between Polio Australia and Polio NSW in the provision of information and support services to polio survivors and their families. This was a record result and we give a huge thank you to Northcott, to everyone who donated and, of course, to the participants who all worked so hard to raise these vital funds. It’s not too late to donate to the 2014 Walk With Me campaign . Donations can be made until 11 November 2014. Just go to this page to donate to Polio Power NSW:
Polio Awareness Month will be celebrated nationally in October. Polio Australia is again inviting “polio heroes” to join in a visit to Parliament House in Canberra on Wednesday, 29 October, to bring our need for support services to government decision makers. For further information, please visit
Finally, a reminder that this year Polio NSW celebrates 25 years of support for polio survivors and their families. We are holding a special anniversary lunch in conjunction with the Annual General Meeting on Saturday, 29 November, at Burwood RSL Club. Please come along and celebrate this milestone with us.
Unless otherwise stated, the articles in Network News may be reprinted provided that they are reproduced in full (including any references) and the author, the source and Polio NSW Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of Polio NSW. The views expressed in this publication are not necessarily those of Polio NSW, and any products, services or treatments described are not necessarily endorsed or recommended by Polio NSW. Polio NSW Inc Network News – Issue 91 – September 2014 Page 1
Gungahlin Lakes Golf Club (www.gungahlinlakes.com) Cnr Gundaroo and Gungahlin Drives, Nicholls, ACT
Conference Dinner: 6:30 pm Friday 17 October 2014 Program: 9:00 am to 5:00 pm Saturday 18 October 2014
The Country Conference allows all Polio NSW members, especially those from the ACT and south- east NSW, to find out about issues and services relevant to people with the late effects of polio. Spring is a wonderful time to visit Canberra so we look forward to seeing you there!
Speakers include:
• Mary Durkin , ACT Health Services Commissioner and Disability and Community Services Commissioner, ACT Human Rights Commission, will deliver the opening address.
• Dr Geoff Speldewinde , Head of Rehabilitation Calvary John James Hospital, Canberra, will speak about rehabilitation for people with post-polio syndrome following surgery.
• David Halpin , an Accredited Exercise Physiologist, will speak about his experience working with people in Ghana who have had polio, providing an insight into how it affects people’s lives in this developing country. David will also provide some information about exercise DO’s and DON'Ts for people with the late effects of polio.
• Randolph Sparks , Clinical Psychologist, will present on the psychological impact of chronic illness, including the emotions people might experience, psychological strategies that can assist in coping with these emotions, and the impact on other people such as carers and families.
There will also be presentations from:
o Health Care Consumers Association ACT o Technical Aid to the Disabled ACT o Independent Living Centre o Nican, an information service on recreation, tourism, sport and the arts for people with disAbilities o Wheelies with Wings
Please return the enclosed Registration Form with your payment to the Polio NSW Office by Friday, 10 October 2014
Page 2 Network News – Issue 91 – September 2014 Polio NSW Inc
On page 4 of Network News , Issue 89, March 2014, was an article advising members that Polio NSW had received a Government grant to provide $20 fuel cards to volunteers who drive polio survivors to Support Groups, Seminars and other activities.
Few members have so far availed themselves of this opportunity to show appreciation to their drivers’ generosity by driving them to polio events. With a number of events still coming up this year, including our Country Conference and 25 th Anniversary Celebration Lunch, please be sure to apply to us to help defray the petrol costs incurred by your volunteer driver, whether he/she be husband, wife, daughter, son or friend.
We also know that many attendees at our Support Groups and Seminars are driven to and from by volunteer drivers, so please contact the office on (02) 9890 0946 to make arrangements to have fuel card(s) sent to you.
by Brian Wilson, ACT Support Group Convenor
Roger was an esteemed and valued member of the ACT Post-Polio Support Group , being a foundation member from our Group’s start in 1993. He enjoyed his role as Co-Convenor, managing our Guest Speaker co-ordination for which we had many and varied speakers over the years. Roger also was a major contributor to our Christmas party, by way of funds for gifts, but also for entertainment with his clever and well written poems and limericks. Every year we had the “ Roger Smith Door Prize ”; he so enjoyed presenting the gifts.
Roger was born in 1932 and was 18 when he contracted polio, a real tragedy for a strapping young farmer who loved rounding up the sheep. We had many discussions about the for and against of being a baby or an adult when contracting polio.
Roger passed away on 20 August 2014 after many months of illness and hospitalisation. His funeral service was held on the 28 th August.
Convenor Brian Wilson has received many condolence messages from the Group’s members who stated how much they respected and admired his attitude and fun loving personality, he was a true gentleman.
Member Sylvie Sampson stated “… Roger was such a well-loved member of our group. To say that he will be sorely missed seems so inadequate. His loving personality and his big smile, as well as his poetry and limericks were always fun and entertaining. …”
And President Gillian Thomas wrote “… Roger was a great supporter of Polio NSW and, I know, of the ACT Support Group. I enjoyed the chats we had over the years. ...”
Polio NSW Inc Network News – Issue 91 – September 2014 Page 3
Reprinted from the Newsletter of IDEA S, June 2014
A new website has been launched by NSW Agency for Clinical Innovation – called “Pain Management Network”. It has been designed to assist people with chronic pain.
The site contains information to enable people to develop skills and knowledge in the self- management of their pain in partnership with their healthcare providers. It has a series of ‘episodes’ you can watch which features stories of people living with chronic pain as well as advice and information from clinicians. Some of the topics include: • Introduction to Pain • Getting help from your Healthcare Team • Pain and Physical Activity • Lifestyle and Nutrition • Role of Medications • Pain and Thoughts • Pain and Sleep There is also a section of the website focusing on spinal cord injury pain – which is still in development. To find out more visit:
You can also call one of the Information Officers at IDEAS on 1800 029 904 for further information on any of these services.
Reprinted from the Newsletter of IDEA S, June 2014
Fourteen years ago, Lori Grovenor recognised the need for people with disability to have more access to information about what is available out there: “Until someone told me, I had no idea what opportunities were available to me. I was struggling on my own with kids and a disability in a little town. I was beginning to feel isolated.”.
Recognising that she was probably not alone, Lori decided to do something about it. The Rural Disability Network of NSW (RDN) was born.
Since that time, RDN has been bringing together and connecting people with disability who live in rural and remote NSW. RDN gives people with disability opportunities to share ideas and information. It is also a forum for people to find out more about what’s going on for people with disability and to have a voice on the unique issues facing people in the bush.
“And now we’re excited to announce that we’ve become an Incorporated Association!” says Lori. “ This gives us the chance to have more choice and control of what happens for our Network. It helps us to be more official and to be taken more seriously. It also gives us more control of our opportunities for funding and donations and how and where we use it.” Says Lori: “It is about time that people with disability in the bush have our own voice. We’re more than just a single rural member sitting on a Board in a city-run organisation where we are often too easily out voted, or just not heard. ”
RDN has been formed and is run exclusively by and for people with disability who live in rural and remote New South Wales.
If you would like further information on the Rural Disability Network you can email
Page 4 Network News – Issue 91 – September 2014 Polio NSW Inc
Reprinted from Spinal Injuries Australia magazine, The Advocate, May -June, 2014
Cruising season is all year in Australia. With so many of our members going on cruises we thought it would be great to look at the accessibility of some of the more popular cruise ships.
Carnival Cruises General Access: Carnival has made substantial modifications to enhance the ability to move about the
ships. The ships feature accessible elevators at each elevator bank with tactile controls within reach of guests who use wheelchairs. Accessible routes are available throughout most areas of the ship and signs are posted to assist you in locating these pathways.
Modified Cabins: these cabins are designed for guests who may utilise a wheelchair and include features such as grab bars and shower seats in the bathrooms.
Accessible Cabins: these cabins are designed for guests with highly limited or no mobility who utilise wheelchairs or other similar assistive devices and include features such as turning space; accessible routes throughout the cabin; and accessible bathrooms.
As with all Carnival reservations, staterooms within each category are assigned on a first come, first serve basis. Therefore, it is advisable to reserve an accessible or modified stateroom in advance. Carnival Cruise Lines bases Carnival Spirit year round in Sydney and Spirit will be joined by sister ship Carnival Legend in September for seasonal cruising from Sydney this year and again in 2015.
Princess Cruises Accessible Cabins: Today, the Princess fleet offers more than 350 wheelchair-accessible cabins. Each vessel features up to 31 accessible cabins across a variety of stateroom categories. These rooms are designed for wheelchair manoeuvrability, with widened doorways into both the cabin and its bathroom; wheel-in showers, hand-held showerheads and bath distress alarms; as well as lowered closet railings, sinks, and handrails; and removed or revamped thresholds. Additional equipment is also available on request, such as toilet seat raisers, shower stools and bed boards. Wheelchair users will find access- friendly design across most of the Princess fleet, making it easy to enjoy each vessel’s restaurants, theatres, spas, lounges and open deck space. Elevators have generous wide doorways, and wheelchair seating in available in show lounges and other public spaces.
P&O P&O Cruises operates three cruise ships – Pacific Dawn which is home ported in Brisbane and Pacific Jewel and Pacific Pearl which operate in the main from Sydney.
Ports accessed via ship’s tender: It is important to note that access to tender ports may be restricted. Don’t worry if you can’t get off the ship, there are plenty of fun activities for you on board! Many of the Shore Tours are suitable for people with limited mobility. Access to some tender ports may be restricted. The Shore Tours staff will happily suggest suitable tour itineraries to accommodate your mobility needs.
Accessible Cabins: There are accessible rooms on all ships, subject to availability at the time of request.
There are also a limited number of specialised kits for hearing impaired guests available upon request at time of booking. Polio NSW Inc Network News – Issue 91 – September 2014 Page 5
Reprinted from NZ Polio
The goal of a support group is to empower its members with the tools to make adjustments to continue a life of dignity and independence.
Contrary to the image sometimes portrayed in the media, healthy support groups are not ‘pity-parties’ and do not promote the idea that ‘misery loves company’.
During the original illness, many polio survivors were hospitalised for extended periods and established a spirit de corps. After successful rehabilitation, they lived active, integrated lives. Many of today’s successful groups have rekindled this sense of belonging to a unique group.
Also contributing their perspective to support groups (though maybe with some hesitation or even resistance) are individuals who never were part of a group based around having polio or a disability.
Support groups provide a forum for people to learn from each other about how to enhance the quality of their lives. Historically, support groups related to a common health condition developed to help people resolve problems with bureaucracies. For this reason, groups are encouraged to operate with minimal structures and rules.
Spending excessive time on organisational details detracts from the primary goals of providing personal support and advocating for systems’ change.
Successful support groups promote personal empowerment to overcome personal adversity by encouraging members to become active, assertive managers of their health care, challenging attitudes of helplessness, hopelessness, and victimisation. Successful groups create a confidential environment for people to share their feelings safely. Healthy groups balance a time for ‘me’, a time for ‘us’, and a time for ‘you’.
Communication is vital in a support group.
Members should be encouraged to own their ideas and reactions by using ‘I’ statements, such as ‘ I think … I feel … I suggest …’
Participants should avoid speaking for the group without consultation, generalising by stating, ‘ all polio survivors …’, or telling others what to do, such as ‘ you should …’
Equally important is listening to whoever is speaking by not interrupting or engaging in cross-talk. Sometimes distressed members digress on tangents and tell detailed stories rather than staying focused on the topic. To minimise these situations groups should develop ground rules for the meeting time and recognise the limits of the group’s role by encouraging persons who experience continuous or intense distress to seek professional assistance.
Effective leadership is also vital. Most groups function successfully with co-leaders or a committed core team.
Excerpted from the “Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors”, Editors: Joan L. Headley, and Frederick M. Maynard MD. Post Polio Health International (1999).
Page 6 Network News – Issue 91 – September 2014 Polio NSW Inc by Susan Ellis
Anne O’Halloran, who took on the role of Seminar Co-ordinator after joining the Management Committee following the 2013 AGM, organised a very successful mid-year Seminar which was attended by 40 members. The three guest speakers presented interesting topics which generated numerous questions from the audience. Many thanks also go to the Office staff for their organisation of the venue and food and the associated administrative tasks. Long-time Committee member, Alice Smart, provided morning tea and a raffle which always attracts a lot of interest from members vying for first prize!
Ms Jenny Ly is currently the Senior Health Promotion Officer at Arthritis and Osteoporosis
NSW. Her role involves educating groups in the community and is largely focused on the range on Healthy Lifestyle Programs for people with arthritis or osteoporosis. Jenny is a pharmacist by profession and has a special interest in complementary medicines and health education. Arthritis NSW Health Information Service 1800 011 041
Complementary Medicines and Alternate Therapies
Over the last few years, there has been an increased amount of interest in complementary medicines to treat a range of health conditions.
Arthritis is a painful chronic condition that causes pain, inflammation, muscle weakness, fatigue, reduced quality of life (these may also appear in post-polio) and it is not a surprise that people seek complementary medicines.
It is important to remember that people respond differently to treatments – what works for one person may not necessarily work for another. It is very much a case of “try it and see”. In the presentation some of the more common complementary medicines were covered, such as fish oil, krill oil, glucosamine, chondroitin and what research has been done as to their effectiveness and, more importantly, any side effects.
What is Arthritis? ° “arthros” = joint, “itis” = inflammation, so arthritis = inflammation of a joint or joints ° A joint is the point at which two or more bones meet ° Almost any joint in the body can be affected ° There are over 100 different forms of arthritis ° Osteoarthritis is the most common form, cartilage thins out ° Inflammatory forms, where the body’s autoimmune system starts to attack itself – eg rheumatoid arthritis which generally affects women between 30-50 ° Osteoarthritis may affect one or many joints – joints most affected are the hands and weight-bearing joints ° Rheumatoid arthritis often starts in smaller joints such as those in the hand and wrist ° The hand and wrist are common locations – eg osteoarthritis, rheumatoid arthritis, psoriatic arthritis and can include lupus, gout and JIA (juvenile idiopathic arthritis) ° Can affect hands symmetrically or asymmetrically ° Any joint in your fingers, thumbs, knuckles and wrists can be affected by arthritis
Polio NSW Inc Network News – Issue 91 – September 2014 Page 7 Statistics ° 1 in 5 Australians has arthritis ° Almost half the population aged over 65 have some form of arthritis ° Not just a condition affecting older people o 2.4 million people of working age o 1-4 in 1,000 children are living with JIA ° Prevalence will increase to around 7 million by 2050 ° Total cost of arthritis is around $24 billion per year
Why do people choose Complementary and Alternative Medicines (CAMs)? • Used throughout history for thousands of years • Thought to be natural, gentler and therefore safer for the body • Also thought that if multiple ingredients are working together they must yield a better result • Concern for side effects, eg on stomach or blood pressure, or lack of pain relief with mainstream medicines so they then seek an alternative by selecting CAMs
Potential problems with CAMs • There is a lack of regulation • No dose standardisation, different brands have different doses which can be difficult to determine if it will work • CAMs may be diluted when added to other supplements or other ingredients which might make them less effective • People may put off taking more effective main-stream therapies • Potential for side effects and drug interactions • Many people do not inform their doctors, always tell your doctor about CAMs you take
Regulation in Australia • TGA (Therapeutic Goods Administration) is the regulatory organisation in Australia that evaluates products (eg over the counter medications, prescriptions) for safety, quality, and effectiveness. They control product recalls as well. • Two-tiered system of regulation: Listed and Registered
Check the Label!
Listed Products are labelled as (AUST L) , next to the barcode • Contain low-risk ingredients that relate to non-serious health conditions • Are assessed for quality and safety but NOT for effectiveness • Examples: most complementary medicines
Registered products are labelled as (AUST R), next to the barcode • Contain higher-risk ingredients, or are used for more serious health conditions • Assessed for quality, safety and efficacy • Examples: prescription medicines, some over-the-counter products as well
Note Regulation of products – CAMs are assessed on toxicity, potential for side effects, and potential for harm with prolonged use, before they are sold.
Page 8 Network News – Issue 91 – September 2014 Polio NSW Inc Do Complementary Medicines actually work? • Little scientific proof available, very little research in this area • Many poor quality small studies with inaccurate or exaggerated results and trials • Benefits may vary depending on the type of arthritis • There is a need to make sure that the benefits have been clearly proven
Jenny stated that there is definitely a need for more scientific research on a larger group of people over a longer period of time before it can be proven that CAMs actually work.
Jenny has used statistics and research from Arthritis Research UK who produces an evidence- based report every 2-3 years. It is based on the use of complementary and alternative medicines and therapies for arthritis and musculoskeletal conditions to determine whether they are effective and safe and if there are any side effects that we need to be wary of.
Arthritis Research UK have developed a rating scale based on elements such as improvement in pain and function, increased movement, and improved general well-being.
1 indicates that there is no evidence, or little evidence, and 5 indicates that several studies show that the complementary therapy is effective
** Remember: what works for one person may not always necessarily work for other people **
Safety rating
Red indicates serious side effects Amber indicates side effects serious and more common Green indicates mainly minor side effects
COMPLEMENTARY THERAPIES
Acupuncture : A traditional Chinese medicine technique where fine needles are inserted into the skin at certain ‘trigger points’ to reduce pain and inflammation. The research has shown that in OA small improvements in pain and function were achieved after 8 weeks (rating scale 5) and for RA trials have failed to show improvement in pain (rating scale 1). The safety rating is GREEN , side effects being mild bleeding or bruising, and rarely – nausea, dizziness, fainting, vomiting. Precautions : Anyone with a bleeding disorder, or who takes blood thinners such as Warfarin, check with your doctor. It is also advisable to find out how qualified and experienced the acupuncturist is as this is not regulated. Does the therapist have other polio clients?
Copper Bracelets: Very popular years ago. The thought is that the copper has anti-inflammatory properties and can help with pain if worn on a certain area – the wrist. Research shows no improvement in pain, stiffness or function giving a rating of 1 for OA and 0 for RA with a safety rating of GREEN , indicting no serious side effects but only mild side effects such as rash, skin discolouration or irritation.
Massage: Very popular, some people stating that they do wonders for them, this depends on the massage therapists, check if they are a member of the Australian Association of Massage Therapists (AAMT). Massage targets soft tissues such as muscles, tendons, ligaments and is used to relieve muscle tension. There have been limited studies on massage and it is not recommended for already inflamed joints. Massage was not evaluated in the Arthritis UK report.
COMPLEMENTARY MEDICINES
Fish Oil: There are two types: Fish body oil and Fish liver oil (cod liver oil). Fish oil is rich in Omega-3 fatty acids which have anti-inflammatory properties. Omega-3 Fish oil supplements are available as capsules or in liquid form. Fish oil is recommended by rheumatologists for rheumatoid
Polio NSW Inc Network News – Issue 91 – September 2014 Page 9 arthritis to help reduce joint pain, morning stiffness, swollen joints and also symptoms of fatigue that come with the condition (rating scale 5). There is less evidence that fish oil is effective in osteoarthritis (rating scale 1).
Recommended dose in RA = 2.7 grams daily - 14 standard fish oil capsules (1 tablespoon of liquid fish oil) - 7 capsules of fish oil concentrate - 15 ml of bottled fish oil - It may take 2-3 months before benefits are noticed - About half the above dose of Omega-3 fish oil for OA
The safety rating for fish oil is GREEN with possible side effects of stomach upset, heartburn, nausea, diarrhoea, flatulence; these side effects can be minimised by using the odourless variety or by storing the product in the fridge and taking with food. There is also concern with Cod Liver Oil which contains Vitamin A; high doses of Vitamin A can cause liver toxicity and hair loss. Can also interact with other supplements and medication eg Warfarin, causing risk of bleeding (fish oil may need to be stopped 1 week prior to surgery).
Krill Oil: A more concentrated source of Omega-3 which is absorbed much better than standard fish oil products resulting in fewer capsules needed per dose eg 1 Krill Oil capsule is equivalent to 6 Fish Oil capsules therefore much more convenient. Only limited research has been undertaken, only one trial in Canada. Krill Oil has similar side effects, precautions and drug interactions as Fish Oil. It is very expensive, however.
Glucosamine: Derived from shellfish (eg crab, lobster, shrimp) or prepared in a laboratory, it is a nutritional supplement. It is available in capsules, liquid and cream (arthroaid). Glucosamine is found naturally in the body, it is the building block of joints, tendons, ligaments, cartilage and synovial fluid. There is also a vegan type made from corn for people who are allergic to shellfish. Glucosamine sulphate may slow down or repair cartilage breakdown – this has not been proven yet. Glucosamine hydrochloride is less effective.
Recommended dose: - Glucosamine sulfate: 1500mg daily - Glucosamine hydrochloride: 1500mg daily - May take 8 weeks to 3 months to be effective
The safety rating for glucosamine is GREEN with possible side effects of headaches, skin reactions (rash) and stomach upset; it is recommended to take with food. Precautions: those with shellfish allergies and diabetics, it may increase sugar levels. Drug interactions: Warfarin, chemotherapy, cholesterol-lowering medicines.
Chondroitin: Is found naturally in the body and is a vital part of joint cartilage. Chondroitin supplements are made from cow or shark cartilage and are often used in conjunction with glucosamine. A small study (2008) found that the combination of chondroitin and glucosamine reduced pain in moderate-severe OA. Research from 2010 showed that Chondroitin alone showed no improvement in joint pain.
Recommended dose in OA = 800-1200mg daily - May take 8 weeks to 3 months to be effective
The safety rating for chondroitin is GREEN with possible mild and uncommon side effects of stomach upset, headaches, diarrhoea, rash. Precautions: may worsen breathing problems for asthmatics. Drug interactions: Warfarin.
Green-lipped Mussel: Is a type of mussel native to New Zealand; coastal Maoris have less osteoarthritis and it was thought to be due to their diet of mussels. It is now available as a supplement in capsule or powder form and contains Omega-3 fatty acids which have anti- inflammatory properties. When combined with paracetamol or anti-inflammatory medicines, it can
Page 10 Network News – Issue 91 – September 2014 Polio NSW Inc reduce pain, improve function and improve quality of life. The exact dose needed is unknown; it is very expensive.
The Arthritis UK report gives an effective rating scale of 3 for OA and 1 for Rheumatoid arthritis. The safety rating is GREEN with possible side effects of nausea, flatulence. Drug interactions: Warfarin.
REFERENCES:
• Arthritis Australia. Information sheet: “ Complementary therapies ” • Arthritis Research Campaign (2007). “ Complementary and alternative medicines for the treatment of rheumatoid arthritis, osteoarthritis and fibromyalgia authoritative report ”. • Arthritis Research UK (2013). “ Practitioner-based complementary and alternative therapies for the treatment of rheumatoid arthritis, osteoarthritis, fibromyalgia and low back pain report ”.
Mr Robert McLeod has had many years as a banking and finance executive. He has
been with Sydney Cochlear Implant Centre (SCIC) for six years, the last four as Chief
Executive. SCIC is the third largest cochlear implant program in the world. Robert has an
18 year old son who was born profoundly deaf and who has bilateral cochlear implants.
Robert said this is a special reason for his involvement with SCIC.
The Work of SCIC and the Cochlear Implant
Sydney Cochlear Implant Centre supports choice and opportunity – opportunity for children who are born deaf, and adults who acquire deafness, to have the choice of becoming part of the mainstream world.
Sydney Cochlear Implant Centre is a comprehensive clinical program for diagnostic services, cochlear implantation and related services. SCIC is a not-for-profit registered charity. The adult Cochlear Implant Program was established in 1984 by founding surgeon Prof William Gibson and the paediatric program commenced in 1987. Prof Gibson is the world leader in cochlear implants, also known as a bionic ear. The original cochlear implant was invented by Prof Graham Clark who is now using the technology to develop a bionic eye and is also working with paraplegia. The device was initially meant for adults who had lost their hearing. Prof Gibson thought it would be beneficial for children born without hearing. It was very controversial at the time. Now in 2014 SCIC is probably the 3 rd or 4 th largest program in the world having performed 3½ thousand cochlear implants to date of which Prof Gibson has performed about 2½ thousand.
Polio NSW Inc Network News – Issue 91 – September 2014 Page 11 SCIC provides a full lifetime service for recipients of all ages from pre-surgery right throughout their life. SCIC’s philosophy is to provide a free service to all ages. Services are offered throughout the state of New South Wales with 50% of all clients living outside of Sydney. SCIC’s services are also available to interstate and international clients. Research conducted at SCIC underpins the clinical program. SCIC is recognised as a benchmark program that provides training services by Dr Gibson to other organisations both interstate and internationally.
The Main Clinic and Administrative Centre is located in Gladesville
A referral from your GP is required to make an appointment.
Permanent Sites Visiting Sites Gladesville North Rocks - RIDBC Newcastle Parramatta – Garfield Barwick Canberra Westmead Hospital Gosford Wagga Wagga Lismore Dubbo Port Macquarie Orange Penrith Tamworth Darwin Wollongong
Clinical Team • 10 x Ear, Nose and Throat Surgeons • 23 x Audiologists • 8 x Habilitationists/Therapists for development of speech and language • 3 x Family Counsellors, support parents through the journey • 2 x Biomedical Engineer, technicians • 4 x Research Audiologists • Students
Supported by • Management and Administrative team • Community and Corporate philanthropy • Board
Industry Partners • Government – Department of Health • University – Sydney University • Non-Government Service Providers
WHAT WE DO Pre-surgery diagnostic and assessment services • Counselling
Ongoing care and maintenance for life • 24 hour on-call help line for when devices are lost or damaged • Replacement parts and loan speech processors which will have the individual’s program downloaded onto it, posted out within a day • Mapping review; children 6 monthly, adults annually • Speech perception testing annually • Speech and language assessment at 1 and 2 years post switch-on
Outreach Services • As determined by client needs SCIC provides outreach services to centres across the state
Page 12 Network News – Issue 91 – September 2014 Polio NSW Inc OUR GOALS For Children For Adults Close to normal development Return to pre-hearing loss Opportunities such as mainstream Functioning including continuation schooling of employment, telephone use etc.
WHY IS IT IMPORTANT? For the Children • benefits of speech, language and educational development • up to $400,000 education cost savings per child • decreased social isolation • decreased dependence on social welfare and special funding • significant increase in educational opportunities
For the Adults • return to the workforce • increased self esteem • social independence • decreased dependence on social welfare
For the Community • educational savings • decreased demand on social services • reduced special need services • contributor to society • Australian icon service
CAUSES OF DEAFNESS IN CHILDREN (Robert has identical 18 year old twins, one was born profoundly deaf, it proved NOT to be genetic but rather caused by being in contact with the Rubella virus during pregnancy.)
Genetic = 33%; Meningitis, Rubella, Mondinis, Waardenburgs, Ushers (deaf and blind), LVAS = 42%; Unknown = 25%.
CAUSES OF DEAFNESS IN ADULTS Generally, adults lose their hearing as they age OR it can be caused by industrial deafness. Usually hearing aids are sufficient but when an adult can no longer hear, even with the use of hearing aids, then a cochlear implant can be the answer.
SOME INTERESTING FACTS • Over 3,000 implants have been performed at SCIC • All children today are screened at birth for hearing and vision defects, early intervention is critical especially in relation to learning speech • 95% of our vocabulary is learnt by the time we are 5 or 6 • The birth rate of deafness for children has not increased • 120 children have surgery each year for cochlear implants • Two-thirds of all surgeries are performed on adults • 15% growth rate in adult surgeries each year • World’s first congenitally deaf child implanted in 1987 • Youngest congenitally deaf child implanted at 3 months of age (usually performed between 9 and 18 months) • Oldest adult implanted at 95 years of age • 373 surgeries performed in 2012/13 • A cochlear implant costs $25,000 but private health insurance will cover the cost or it can be
Polio NSW Inc Network News – Issue 91 – September 2014 Page 13 subsidised by government – SCIC’s philosophy is for a free service for all ages (see more below) • The doctors at SCIC do not charge any gap fees • Cochlear implants are produced in Australia
AGE OF CHILDREN RECEIVING THEIR FIRST IMPLANT 47% were 0-2 years, 32% were 3-5 years, 16% were 6-10 years and 5% were 11-17 years.
SYDNEY COCHLEAR IMPLANT CENTRE • We give the gift of hearing to children and adults who are born deaf or acquire deafness later in life • We teach deaf children and adults to learn to listen using their cochlear implant • We provide the means for adults to resume their life in a hearing world • We provide the opportunity for children to be part of our mainstream hearing world • We teach deaf children to talk
SO HOW DO WE DO ALL THAT? Public Funding via NSW Health – uninsured clients • 62 child recipients – CI device only • 80 adult recipients – CI device only • the annual allocation is reviewed each year but not guaranteed • SCIC surgeons do not charge a gap fee Public Funding via ACT Health – uninsured clients • 22 adult or child recipients • SCIC surgeons do not charge a gap fee Private Health Insurance • funds approximately 50% of non-public funded implants • private health insurance covers cost of device, hospital and surgery • private health funds differ on provision of upgrade devices Charity Funding
• made available by a Charity, Trust or Foundation and generally covers the cost of the device only – generally about 20 per year
Page 14 Network News – Issue 91 – September 2014 Polio NSW Inc Emeritus Professor Barry Baker graduated MBBS from the University of Queensland in 1963 and doctor of philosophy (DPhil) from Magdalen College in the University of Oxford in 1971. He has specialist qualifications in anaesthesia (FANZCA and FRCA) and in intensive care. He was reader in Anaesthesia, University of Queensland 1972 to 1975. Foundation Professor of Anaesthesia and of Intensive Care, University of Otago 1975 to 1992, and Nuffield Professor of Anaesthetics, University of Sydney 1992 to 2005. He is currently the Dean of Education for the Australian and New Zealand College of Anaesthetists. Barry also has a keen interest in the history of medicine. He has more than 200 publications in the academic and scientific literature on anaesthetic, physiological and historical topics.
The Part Polio Played in the Formation of Intensive Care Units and Current Management of Ageing Polio Patients Particularly During Surgery
Polio has been around for a very long time and recorded as far back as the Egyptian times as evidenced on tablets from 1403BC.
Dr Baker spoke of his encounter with poliomyelitis from his childhood years and during his medical career. He first became aware of poliomyelitis as an 11 year old boy in his hometown of Brisbane when an epidemic caused the cricket season to stop for the summer. It turned out to be the worst epidemic on record for Queensland. The seriousness of the epidemic came home to him personally when a 9 year old boy who lived 100 meters from his home contracted poliomyelitis and was dead within the week, this event quickly focused his mind on the whole issue of poliomyelitis.
Dr Baker then spoke of his own mother talking to him about Sister Elizabeth Kenny, who in fact had had NO nursing training, but garnered information from nurses. Sister Kenny lived in Nobby on the Darling Downs west of Brisbane and got involved in nursing people in the district, not just polio patients but anyone who was sick and needed help. She had no nursing training and did not charge for her services. As a child she had fallen off a horse and broken her arm. She was sent to Toowoomba and was treated by a GP, Dr Aeneas McDonnell, who not only fixed her arm but had her into his household for about 6 weeks while she was recovering and this was when she got interested in his medical books and his skeletons and lead to her interest in nursing (it was not common for women to train as medical doctors at that time).
Sister Kenny went back to Nobby and got involved in this ad hoc nursing practice. During this time she was called to a very sick child and she contacted Dr McDonnell who told her that the child had infantile paralysis and that there wasn’t anything she could do for it. She asked “ What should I do?” His advice was to treat what you can, treat the symptoms. So she treated the child with hot compresses and stretching. The child was known to say to Sister Kenny, “Please I want them rags that welled my legs ”. This was how Sister Kenny became involved in the treatment of poliomyelitis; it was prior to the first World War.
She was intensely controversial both in Australia and America but particularly in Queensland. Dr Baker felt a link to Sister Kenny. She opened her first hospital in Clifton (where Dr Baker was brought up), on the Darling Downs. Two medical people who supported her in Queensland were Dr Abe Fryberg, Director of Health, and Dr Aubrey Pye who was Medical Superintendent of the Royal Brisbane Hospital, both of whom Dr Baker knew in the early days of his medical career.
Polio NSW Inc Network News – Issue 91 – September 2014 Page 15 Looking at figures of polio cases in Australia, Dr Baker has been unable to find decent statistics that record cases accurately, in some years (eg 1951) statistics were completely missing. New Zealand statistics are better. They show that roughly one in ten who contracted polio died. In the 1930s there were 592 deaths recorded, in the1940s the figure was 480 and in the 1950s there were 871 deaths.
His next interaction with polio was as a first year medical student in 1958 when he had to be vaccinated against polio as well as other infectious diseases. It was the Salk vaccine. Dr Baker stated that he has never seen an acute case of polio in his career. It had died out as a disease in our part of the world. When he was in third year medicine he was vaccinated with the Sabin oral vaccine.
Dr Baker’s next contact with polio was as a trainee specialist in the Brisbane General Hospital, where he met two polio patients, one who was incarcerated in the hospital and was in an iron lung. This patient did foot-painting and never left the hospital.
As he worked in intensive care he came across a second patient, Fay Cottrell, who had had polio from the 1947-48 epidemic and now had pneumonia. Fay was treated for pneumonia and then sent home; she had very limited mobility, was fairly severely handicapped and in a wheelchair most of the time, she was not on any ventilation, she had not previously had any breathing issues until this pneumonia episode. Within a week she was back with recurrent pneumonia, she was treated again then sent home and within another week she was back. It obviously was not as simple as it looked and each time she came in she required assisted ventilation and was put into a Both respirator (iron lung). She didn’t want a tracheotomy as she was an occupational therapist at the Spastic Centre in Brisbane and didn’t want to lose the ability of speech. She wanted to be treated in a Both respirator which had to be retrieved from the hospital basement (the only one left from the polio epidemics) for her use.
In the middle of the night this machine failed, Dr Baker was called and he spent the night repairing the leather bellows as she slowly deteriorated. It was eventually decided that she needed to take this respirator home, which she did. She worked during the day and in the evening she went to sleep in the respirator. When she slept her breathing collapsed and this caused her to get pneumonia; the respirator solved this problem.
Interestingly, Fay’s blood oxygen levels taken during the day were very low (35mm of mercury tension), which normally would mean the patient would be fairly incapacitated, yet she could do mental arithmetic with these levels (normal levels would have been 140). Doctors were always taught that this low level of oxygen would be incompatible with life yet here she was functioning at a high mental level. This demonstrated to Dr Baker that there is a vast variation of normal, and of what levels you can function within this range of normal. She continued to use the Both respirator at night. She continued working until retirement and lived to a reasonable age.
In the early sixties post-polio syndrome didn’t really exist, it did exist but nobody really knew about it, it was thought that once you recovered from polio that was it. However, as we get older, as indeed everyone gets older, we lose a lot of our neuro-muscular function and if you initially had respiratory involvement then your respiratory function can be affected quite badly in the post-polio stage. This is how Dr Baker got interested in post-polio.
Edward Both was an Adelaide engineer who invented his respirator in 1938, it was made of wood and cheaper, quicker and easier to make compared to the ‘iron lung’ which was made in America and was made of steel (Drinker respirator). Both respirators were used in Fairfield Hospital in Melbourne during the epidemics and filled entire wards.
Page 16 Network News – Issue 91 – September 2014 Polio NSW Inc During the largest European epidemic of 1952-53 (which coincided with Australia’s largest epidemic of 1951), Denmark found that they didn’t have enough respirators to deal with the huge influx of new polio patients so only a very few people were treated with them. The rest went to the infectious diseases ward under physicians who didn’t really understand the problem of respiratory function in the polio patient which lead to them being treated incorrectly. A build-up of CO 2 resulted and caused an acid in the blood stream which made the physicians think it was a metabolic problem rather than a respiratory problem and these patients were dying.
Eventually an anaesthetist, Dr Bjorn Ibsen, was consulted and immediately saw that the problem was similar to those patients who had too much anaesthetic and were not breathing properly. He identified the problem and decided that he could provide a quick and easy solution. Most of these patients already had a tracheotomy and so he just connected up a tube and a pump as a means to get the gas in and the gas out. This is what is now called a ventilator but without the mechanical pump. The bag had to be squeezed constantly so he recruited medical students to perform this task, each patient required three medical students doing 8 hour shifts for up to six weeks. The patients then survived in much higher numbers. Prior to this, the death rate of the patients in the wards was nearly 90% and afterwards it was 10-15%. This increase in survival rate and the continuing arrival of new cases saw the need for a mechanical ‘hand’ to be invented that could mechanically squeeze the bag.
That was the beginning of major ventilator production all over Europe. This was the beginning of saving polio patients. It was also found that many other respiratory problems, that is, those not related to polio, could be saved by the advent of the ventilator. It was also how intensive care started.
It took longer for the ventilator to be used in Australia. In 1956 Dr John Forbes, a very famous infectious diseases physician and Australian Medical Superintendent at Fairfield Hospital, Melbourne, stated that “ This hospital, with experience of all methods of artificial respirations, considers that the tank type of respirator or iron lung is still the most efficient machine ”. This was 3 years after the big change was made in Europe on how to treat respiratory failure. This was partly because the ventilator was a bit more complex than a ‘box that had big bellows’ (the Both respirator). The Both respirator pumped the air in and out, making the patient breath in and out.
In Copenhagen, Dr Ibsen realised that if polio patients could be treated with ventilators then many other patients with respiratory problems could benefit from this type of treatment as well. So he started up a special ward for respiratory treatment of patients who needed this artificial ventilation or respiration. In the first four years he treated 121 patients with respiratory insufficiency after surgery, 60 patients after trauma, 34 patients with primary lung disease, 19 patients with neurological disease and 25 patients from other conditions such as poisoning. Of these 259 patients in total, 93 died.
So, this ward was what we would regard now as an Intensive Care Unit , it was the very first ICU anywhere in the world which evolved solely from the treatment of poliomyelitis patients.
Medicine can be very conservative and new ideas can sometimes take many years before they will become accepted as shown with Dr Forbes who was an infectious diseases physician, not an anaesthetist, and who was very resistant to any new treatments. Eventually Fairfield Hospital had an ICU attached to it and he did change but it took a while.
Polio NSW Inc Network News – Issue 91 – September 2014 Page 17
Acute Polio Phase
Destruction of anterior horn cells (motor cells) Brainstem cells • reticular formation – motor, cardiovascular system, respiration, • swallowing, pain, sleep • vestibular nuclei – balance Cerebellum – roof nuclei – ataxia (lack of co-ordination of movement)
Recovery starts after 2-3 weeks and will plateau after 7-10 months, it is a long time then before things start going downhill again.
Acute polio is the destruction of motor neurons but the more important ones are the brain stem cells; these are the ones that catch up with you particularly at the acute phase but also in the post-polio phase. They are probably the ones that cause the most difficult problems to deal with such as those experienced by Fay Cottrell.
▼Force, steadiness & fine motor control
Anesthesiology 2005; 103: 638-644
The Poliomyelitis virus knocks out some of the motor neurons (B), then in the recovery phase the remaining neurons sprout extra ‘branches’ and link up so you start to compensate a little bit and you get some recovery (C) . Then over time these extra branches start to become less (D) and they drop off. As we age, everybody experiences ‘drop off’ not just polios, but in post-polio syndrome (D) we can see that we end up in a phase that is similar to the ‘acute polio’ phase (B) and this is not so good.
The symptoms of post-polio syndrome (PPS) are fatigue, somnolence (a strong desire to fall asleep), poor concentration, muscle weakness, pain (muscle pain, for example: bursitis, tendonitis, overuse pain, joint and back pain), dysphagia (difficulty swallowing) (10-20%), cold intolerance (65%), and respiratory dysfunction problems (40%). Respiratory dysfunction can be associated with scoliosis/kyphosis, sleep apnoea, and hypoventilation but can also be due to brain stem cells being ‘knocked out’ during the acute phase.
Page 18 Network News – Issue 91 – September 2014 Polio NSW Inc
Running Male Masters Sports Performance Decline Cycling Swimming 1.0 Weightlifting Rowing 0.9 Triathlon Walking 0.8 Jumping
0.7
0.6 Running Female Masters Sports Performance Decline Cycling Swimming 1.0 Weightlifting 0.5 Rowing 0.9 Triathlon Walking 0.8 Jumping 0.4 0.7 0.6 0.3 0.5 Fractional Performance Fractional 0.4
0.3 0.2 Performance Fractional 0.2
0.1 0.1 - 30 40 50 60 70 80 90 100 Age (years) - 30 40 50 60 70 80 90 100 Age (years) Baker and Tang Experimental Aging Research 2010; 36:453-77
Dr Baker also has an interest in how we age; we are all on a deteriorating phase from the moment we get over the 20-25 year stage. Mostly people are pretty good up until 60 and then things start to fall off at a faster rate. At 60 you are 15-20% less than what you were at 20-25 and then after that it goes down. Then between 50-70 it is 35-40% of what you were at 20-25. If you are post-polio you can be okay up to say 50 or 60 and then you start to fall off. Unfortunately, with post-polio you have to remember that you haven’t got as many of the motor neurons to work with as non-polio people. And this is why late middle age is a critical time for post-polios.
Motor neurons drop off in everybody but in post-polios the problem is that we have already lost some at the acute polio stage. So as we all age there is a gradual decrease in anaerobic and aerobic systems, a decrease in muscle mass, strength and power, a decrease in reaction time, co-ordination, joint mobility and skeletal size.
Polio NSW Inc Network News – Issue 91 – September 2014 Page 19 The common problem with polio people that Dr Baker has spoken to in relation to anaesthetics is that their doctors won’t listen. So if you are a polio patient and about to have an anaesthetic you should NOT assume that the doctor knows even if he has performed anaesthesia on you before, you need to remind him that you are a post-polio patient and that there might be problems.
Pre-operative Assessment : Initially you should have basic respiratory function tests performed to decide if you need more extensive tests to assess your respiratory function. Regarding a respiratory function test – if the results are less than 1500 ml or less than 50% of what is predicted then you should have a full set of respiratory function tests so that the doctor can see exactly what the problem is and how bad you might be.
Respiratory disability issues are made worse if you have got other problems such as scoliosis/kyphosis, sleep apnoea, and these respiratory issues will affect the heart also. If you have a problem getting air in and out of your lungs this then obstructs the way that the blood flows from the right side of the heart to the left side of the heart. This causes the right side of the heart to get more energetic so it can drive the blood flow through and causes the development of hypertrophy (enlargement) of the right side of the heart or cor pulmonale or pulmonary hypertension, that is, the blood pressure in the pulmonary artery is higher, whereas cor pulmonale refers to right sided heart insufficiency.
Peri-operative Management : There are no reports of problems with regional anaesthesia (local), it is better than having a general anaesthetic.
You will be almost certainly more sensitive to anaesthetic drugs (general) and so Dr Baker says – “low and slow”, that is, a low dose and give it slowly. This will help the doctor become aware of how it is affecting you. The drugs take time to work, so if you inject them then wait for them to take effect, you can then decide if you need to give a little bit more. Low dose and slow, repeat doses are the way to go.
DO NOT use suxamethonium which is a short acting neuromuscular blocking drug (a depolarising drug) which has been shown to have some prolonged effects for post-polio patients. Most anaesthiologists will know this. It is the “low and slow” technique that really needs to be enforced to the anaesthiologist.
Care should be taken with non-depolarising agents which block the neuromuscular junction, effectively putting a blind across so the transmission cannot occur from the neurons to the muscles. So again, “low and slow”. Post-polios have fewer neurons to work on fewer muscles, and if you get a big dose the drug is going to hang around for a lot longer. Low and slow, give it time to work.
Care should also be taken with post-operative analgesia, opioids particularly, again low dose and slow. If you have respiratory problems that come from the mid brain then you have fewer respiratory neurons that are working and if you knock them out with a big dose it is going to lie around a lot longer before you get back to normal. Ask to be kept in the recovery area or the post anaesthetic care unit until everybody is sure that you are breathing fine, or if there is a problem you can then be sent to an ICU. If you have sleep apnoea issues then you may need sleep apnoea assistance. Sleep apnoea is when you actually have periods where you stop breathing, stop and start, stop and start. The stopping periods can be quite prolonged.
During question time when members related some of their experiences and concerns, Dr Baker stated that we should make the doctor listen to our concerns about anaesthesia. It is in our interest to try and remind the doctor we are post-polio patients and that they need to be extra careful.
Page 20 Network News – Issue 91 – September 2014 Polio NSW Inc Pat Featherstone stated that she always starts by asking the doctor what he knows about post-polio. She then has to tell them the basics and finds that most have been receptive. It is very hard to get past the attitude of people and doctors that there isn’t any polio around and that they know very little about it
Dr Baker reinforced that if we are going to have surgery then we must firstly talk to our surgeon about our concerns with anaesthetics and that most polio patients have problems with anaesthetics and you want to be sure that the anaesthetist is aware of post-polio. Try to be diplomatic.
Nola Buck asked why when she comes out of an aesthetic she is shivering. Tell the nursing staff, everyone not just the anaesthetists, and remind them again at the latest possible opportunity, that is, just before the commencement of your surgery “ Don’t forget that I’m a polio patient ”. Communicate with everyone who is involved in your care. Don’t think that everyone has read your notes. Tell them that you have paralysis in your left leg or arm or that you have back issues or lung issues or cold intolerance. Keep communicating.
I contracted polio in 1954 at the age of 2½, before the Salk vaccine was invented. In 1954 I was living at Chullora, the migrant camp, when I was struck by a log at the bottom of a pile of logs. It cut open my ankle. I was taken to hospital for stitches. It was at the hospital that I contracted the polio virus. Hospitals can be dangerous places and are not always germ-free. For six weeks while the virus incubated, I was very ill and could not stand on my right leg. Mum took me to numerous doctors. They said I was ‘bluffing’. It was only after the six weeks was over that Mum was told I had polio. By that time it was too late to do anything. They told me I was lucky to have a ‘clear’ chest - I didn't need to go in an iron lung. My right leg was the most affected. I had a drop foot (where I had had the stitches), my right leg was 1½ inches shorter than the left leg, and there was wastage in the muscles of my right leg. They put a calliper on my right leg and for a time I was taken to Royal North Shore Hospital for physiotherapy. A sponge was put under my right knee and wrapped in a rubber band. I think this was the treatment Sister Kenny had initiated. After a while they stopped the physiotherapy. They told Mum they could do no more for me. They took away the calliper and I had to walk without help. I remember suffering with shoes that did not fit my right ‘drop’ foot. I always had blisters. I could not do sports. It wasn’t until I reached the age of 8 that I was able to hop on my right leg. It was quite a triumph, like Alan Marshall in “I Can Jump Puddles ”.
When I went to school I excelled academically. Sports was another matter.
My life has certainly been a challenge living with the after effects of polio and now, in my early sixties, with Post-Polio Syndrome. I have always been a Type A personality, always achieving, overexerting myself. Academically I was an overachiever and I was not always interested in my personal or social life. I did not get married young, indeed not until the age of 39. I missed out on having children.
My husband passed away over 11 years ago from leukaemia at the age of 43. I was now alone. I have been battling with my various disabilities (bipolar disorder, Type 2 Diabetes) ever since. I have learnt not to push myself these days. I need a ‘nanna’ nap in the afternoon. Sometimes I find it is better to isolate, as being around other people can be stressful. I have had special orthopaedic shoes from my twenties. Unfortunately they are very expensive. Meanwhile I have to live with the after effects of this terrible disease as do many others.
Polio NSW Inc Network News – Issue 91 – September 2014 Page 21
This article is reprinted from the Atlanta Post-Polio Association’s newsletter, APPA News, Fall/Winter 2013/2014.
Liz Pike is a physiotherapist from the Shepherd Center. Most of these stretches can be done by everyone in APPA. You may not be able to perform them all but there is huge benefit in doing even one of them on a daily basis. Like many things, after years of neglect, stretching for a day or two won’t produce miraculous results, but you will see a big difference after a week of daily stretching. Of course, be careful, especially at first, to not over stretch anything. After a long period of inactivity there will be muscles that are pretty tight and will need a while to loosen up. One real advantage to these stretches is that many can be done sitting down which makes it easy to do them while watching TV!
Page 22 Network News – Issue 91 – September 2014 Polio NSW Inc
Polio NSW Inc Network News – Issue 91 – September 2014 Page 23
Page 24 Network News – Issue 91 – September 2014 Polio NSW Inc
Getting onto Port Stephens' many beaches is now a whole lot easier for people with a disability thanks to two new Sandcruiser beach wheelchairs introduced by Port Stephens Beachside Holiday Parks. The all-terrain wheelchairs are available for visitors and locals, and not just guests at the group's four Port Stephens holiday parks. The state-of-the art wheelchairs feature pneumatic tyres which make navigating grass and sand easy. The special wheelchairs are available for loan from Halifax and Fingal Bay Holiday Parks at no cost. Port Stephens Beachside Holiday Parks is an enterprise of Port Stephens Council.
People with a disability can take in the Contact: Halifax Holiday Park 02 4981 1522 or Fingal beach delights at Port Stephens Bay 02 4981 1473
by Anne O’Halloran
Permission was given to include the information and name of the program with their suggested credit:- “From Active Memory – online brain training - www.activememory.com”.
I have been “playing” games on the internet for 10 months.
You might have seen last year an ABC program where the main player was put through several tests which challenged the mind. Out of that grew an online program called “Active Memory”. Scientific experts at the University of Melbourne and Florey Institute of Neuroscience and Mental Health work with the ABC to develop the games.
Active Memory offers a two week free trial of the games. If one decides to go further there is a monthly fee of $12.50 which works out at around $3.10 a week which I find very reasonable for such a challenging way of exercising my brain. Different games are added over time.
As one reaches certain goals set by Active Memory, further challenges are added. The games focus on memory, attention and flexibility. Progress scores are shown in the form of a graph.
At the risk of sounding pleased with myself I will admit to improving since my first game. The scores are Overall (memory, attention and flexibility); on 26 October 2013 I scored 298, my latest score on 2 September 2014 shows an Overall figure of 839. I am hoping to improve on the latter.
To play online one needs fine hand movement such as the ability to use a mouse and keyboard. If access to these tools is a problem maybe Technical Aid to the Disabled (TAD) could be contacted to invent an adaptation to assist.
The games are worth a go!
Polio NSW Inc Network News – Issue 91 – September 2014 Page 25 . + . + . + . +
We love to hear from our members to get feedback and comments of any number of topics. Following are this edition’s contributions, both sent to Support Group and Member Liaison Co- ordinators, Gary and Barbara Fuller, from members who appreciate his personal contact.
Last October I returned from a trip to France. I was surprised at the lack of disability-friendly facilities overseas for both visitors and residents alike. When one uses the metro in Paris one is met by many stairs, no lifts or escalators. It is exhausting for those suffering from Post-Polio Syndrome and/or in wheelchairs.
When I visited the art galleries and museums, for example the Musée Marmottan and the Musée D’Orsay, again there are not enough lifts, ramps and too many stairs. It is exhausting visiting these places when one has a disability. To enter the Musée d’Orsay, which houses the Impressionist artists that the Louvre does not house, I had to stand in line for more than half an hour. Anyone who has Post-Polio Syndrome knows it is hard to stand for any length of time and inside the gallery are dozens of stairs (downstairs when one needs to use 'les toilettes').
It is tiring getting around although both the sculptures and paintings are breathtakingly beautiful. Why should those of us who have a disability be seen as less important than able-bodied people? How do we improve the facilities for those of us with a disability who love art galleries and museums, both overseas and here in Australia.
Regards, Madeline Coelho
To Gary and Barbara
Good morning to you both, I write primarily to thank you and the Committee of Polio NSW Inc for the wonderful work you do. Only those of us who are a long way from the centre of activity can fully appreciate the value of your efforts. The receipt of your "support group letter” triggered many thoughts and memories for me which I will try and explain.
With your activities you have made me feel as though I am part of a network, which is comforting even though I’m a long way from the centre of activity. I am of course not the only one, as I’m sure there are many others. An example would be Mary Keast who was rung and welcomed. I do not know this lady but I know her location like the back of my hand.
I was holidaying with my grandparents on their grazing property in the Urbenville district when I got out of bed one morning and collapsed on the floor. Polio had struck. It was Sunday the 26th of January 1951, Australia Day. Unfortunately I had been in two other relatives’ homes for a few days also on my school holidays and left a trail of polio behind me. A cousin and an uncle fortunately made good recoveries. Some years later, after becoming a tradesman and putting together enough money for a deposit on a property, I bought my first land quite close to the village of Urbenville. I spent 7 years on the Hospital Board at Urbenville before resigning to become a Councillor on Kyogle Shire. It was during this time that I became acutely aware of the need to express one’s gratitude to people who work for others which is what you are all doing. I trust that you understand what I'm trying to say here. Thank you sincerely.
As an elected member of Council I had pleasure of meeting many people, not the least of whom was the Premier of Queensland at that time, Joh Bjelke-Petersen. I mention this because Joh was one of us, Barbara, he had polio in New Zealand before coming to Australia. He was much better on his feet than me as I struggled to keep up to him as we walked the street in Kyogle. He was a very down-to-earth man to discuss cross-border issues with (Kyogle Shire runs up to the Queensland border). In reading a book about his life many years ago, I was surprised to learn that one of the treatments tried on him in New Zealand involved him being strapped to bed and given electric shocks.
We now live hundreds of kilometres to the west of that area and I haven’t been to Urbenville for some time, the move west prompted by pursuit of excellence in cattle breeding.
That’s enough of my waffling, thank you again for the help you give. Best wishes, Neville Bryant
Page 26 Network News – Issue 91 – September 2014 Polio NSW Inc
Gungahlin Lakes Country Conference – Canberra Saturday 18 Cnr Gundaroo and See Page 2 for the Speakers and Topics October Gungahlin Drives Nicholls ACT Return Registration Form by 10 October
Burwood RSL Annual General Meeting Saturday 29 th November 96 Shaftesbury Road 25 Anniversary Lunch Burwood Guest Speaker to be advised
Gillian Thomas President [email protected] 02 9663 2402 Susan Ellis Vice-President [email protected] 02 9487 3094 Merle Thompson Secretary [email protected] 02 4758 6637 Alan Cameron Treasurer [email protected] 0407 404 641 Committee Members (for contact details please ring or email the Network Office ): Charles Anderson, Anne Buchanan, Nola Buck, Barbara Fuller, Gary Fuller, Alice Smart and John Tierney
Office staff: George, Fatma. John 02 9890 0946 [email protected] Volunteers: Nola Buck 02 9890 0953 Anne O’Halloran Seminar Co-ordinator [email protected] 02 8084 8855 Alan Cameron Website Webmaster [email protected] 0407 404 641 Mary Westbrook Q’s about polio & PPS [email protected] 02 9890 0946 Nola Buck/Susan Ellis Co-editors Network News [email protected] 02 9890 0946
The Australian Polio Register was established by Polio Australia in October 2010 to gather information on the numbers of polio survivors living in Australia today, whether or not they contracted polio in this country. There are currently more than 2,000 polio survivors on the Register and this number increases daily. To make the Register truly reflective of the unmet need for polio services throughout Australia, all State polio networks are urging every Australian polio survivor to join the Register which is available on Polio Australia’s website at
Polio NSW Inc Network News – Issue 91 – September 2014 Page 27 Volume 4, Issue 2 Polio Oz News
J u n e 2014— Winter Edition
Always something new to learn by Nola Buck Sixty people, the majority of poured from him in his whom had contracted polio, writing but he felt strangely were gathered to hear many exposed in revealing so much speakers and engage in of the family’s (and his) various activities. Some were experiences. Following Paul’s ‘Retreat Junkies’, a title they talk, each attendee have given themselves as introduced her/him self and they have attended several spoke about what she/he Retreats, others were at their expected from the Retreat. second retreat and others their first. Each person At the Retreat were John and absorbed the Retreat in a Faye Powell. Faye had written different way, and this article a book, “Matthew Pearce and will describe how I absorbed The Howlong Connection”. the Retreat with information John is a descendant of gleaned from others during Matthew Pearce, a pioneer of the final session. The Hills district and who once owned the land on On Thursday afternoon, after which St Joseph’s had been th getting our bearings (the built. Matthew built Bella On Thursday, 8 May, I set building has many floors, Vista, a beautiful home out for the St Joseph’s passages, small rooms and maintained by Baulkham Hills Centre for Reflective Living. comfortable bedrooms), we Shire Council and also an This Centre is not far from gathered for a meal. Later in oasis in a mixed residential where I live and each time I the evening we were and industrial area. visit it, I think of it as an welcomed by Dr John oasis in the middle of Tierney, President of Polio On Friday the hard work suburbia. Its smooth Australia, Gillian Thomas, began, learning about the expansive lawns, Vice President of Polio Healthy Body. As in each interspersed with trees, its Australia and President of section of the Retreat, there beautiful gardens brightened Polio NSW, and Mary-ann was one Plenary session at by roses and tubs of Spanish Liethof, National Program Jasmine, could not help but Manager, Polio Australia. We lift the spirit, sharpen the then heard from Paul Galy, mind and focus the body whom many of you may away from its deficiencies. It “On Friday the know as the maker of your is an ideal venue for a shoes. Paul spoke about his hard work Retreat concentrating on the book “The 4th of May”. This Body, Mind and Spirit, book was reviewed in began, learning especially the Spirit, as it is a Network News Issue 83, and former Convent of the Sisters about the it is a story of a family’s of St Joseph and reminders survival during a dark age of of their founder, St Mary of Healthy Body.” our history. Paul stated he the Cross MacKillop, felt so relieved after the (Australia’s first saint) are events in his family’s life had everywhere. cont’d p4 National Patron: Dr John Tierney, PhD, OAM Page 2
Polio Oz News
Polio Australia Inc From the Editor Representing polio survivors throughout It’s a very attending the Retreats were A u s t r a l i a exciting time to compiled from survey results be me! I’ve just received back from a Suite 119C, 89 High Street completed questionnaire sent to all Kew Victoria 3101 running Polio participants who had attended PO Box 500 Australia’s 5th the previous 4 Retreats. Kew East Victoria 3102 Health and Phone: +61 3 9016 7678 Wellness I will actually be one of several E-mail: [email protected] Retreat which, Australians attending this Website: www.polioaustralia.org.au by all accounts, particular conference, and I am was another looking forward to both Contacts Mary-ann Liethof successful representing Australia’s polio Editor event. More on survivors and to learning about President - John Tierney that throughout this edition, the latest on post-polio [email protected] courtesy of some of the lovely management techniques and people who attended. research. Polio Australia’s Vice President - Gillian Thomas President, John Tierney, will [email protected] And the countdown is on for my also be there (see p3), and trip to St Louis and Amsterdam other Aussies making the Secretary - Jenny Jones for the two post-polio journey to Amsterdam include [email protected] conferences being held in June Robyn and Hans Aulmann 2014. (Victoria), Sue and Graeme
Treasurer - Brett Howard Mackenzie (Queensland), Jill First up is Post-Polio Health Pickering (Victoria), and Merle [email protected] International’s 11th Thompson (New South Wales). International Conference: National Program Manager Promoting Healthy Ideas, from I even get to have a couple of Mary-ann Liethof the 31st of May to the 3rd of weeks off in between the 2 [email protected] June. I will be sitting on a panel conferences to visit family in discussing ‘Support Groups: Montreal! What Works’. As the national Inside this issue: peak body representing However, as I never travel too Australia’s polio survivors, Polio far without my computer, I will Always something to learn 1 Australia is not a ‘support be doing my best to keep up group’, nor does it have ‘support with what’s going on back Vale Neil on Schill 3 home . . . groups’. However, as my topic Polio Retreat highlights 4 focusses on our Health and Why not join me on my USA Polio Retreat feedback 6 Wellness Retreats and how they and European sojourn by have improved the health checking out my daily blogs. Supporting Polio Australia 8 literacy of the participants, I can Click here for St Louis, and here Metro Traveller 9 definitely demonstrate that they for Amsterdam. ‘work’ and ‘support’ those who Travels with a ‘wheelie’ 10 have attended! Enjoy! Relief for ‘spider legs’ 11 Man with probable polio 12 The European Post-Polio Conference: A Condition without Primary health care 13 Boundaries, takes place from Drugs and falls risk 14 the 25th to the 27th of June. Once again, I will be sharing the ABS on disability 15 concept of our Polio Health and “In winter, Cutting stroke risk 16 Wellness Retreats improving the I plot and plan.
Cancer and the polio virus 17 health literacy and health outcomes for participants. This In spring, Green tea research 18 will take the form of a ‘poster’ I move.” Tribute to Dorothea Lange 18 which will be on display ~ Henry Rollins Normal Heart movie 19 throughout the conference. Graphs clearly demonstrating Polio vaccine discovered 21 the improvement in health Polio Around the World 22 literacy before and after Polio This Week 25
Unless otherwise stated, the articles in Polio Oz News may be reprinted provided that they are reproduced in full (including any references) and the author, the source and Polio Australia Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of Polio Australia. The views expressed in this publication are not necessarily those of Polio Australia, and any products, services or treatments described are not necessarily endorsed or recommended by Polio Australia. Page 3
Polio Oz News
From the President
The Health and Wellness and self-management services to a much Retreat that we just held in wider range of polio survivors we need to Sydney was of great diversify and intensify our fund raising efforts. benefit to all the polio survivors and their carers Another funding cornerstone is our developing who we're present. Our relationship with Rotary. I would like to thank special thanks to Mary-ann our speakers’ panel and especially Sue who as always did an Mackenzie from Queensland who usually walks outstanding job. If you away with a $1000 dollar cheque from each haven't attended one of Rotary talk. I recently applied Sue's formula these life changing and also received a cheque for $1000 dollars from Singleton Rotary in NSW. experiences, next year’s Dr John Tierney retreat will be in Torquay, In June, a number of people from our post- President Victoria from 30 April to 3 polio community will be at international polio May 2015. conferences in either the USA or Holland. Mary
Another Federal Budget has come and gone -ann and I will be presenting in St Louis and without any sign of government funding for Amsterdam respectively. I’m sure it will be an our vital LEoP program's. The closest that we interesting experience for all concerned. came this round was an indication from Health Minister Dutton that we were on his wish list, just before the 2013 election. Unfortunately John this didn't make it through the toughest Dr John Tierney OAM Budget in 20 years. President and National Patron
This underscores the point that for Polio Polio Australia Australia to be able to offer our information
Vale Neil von Schill
On Friday 23rd of May, Gillian Thomas, John Tierney and Mary-ann Liethof from Polio Australia joined with family, friends and fellow polio survivors to farewell Neil von Schill, one of Polio Australia’s founding members.
Our Polio Australia 'team' was hit hard after Neil suffered a major stroke in 2011, which completely halted him in his tracks. Since then, we have greatly missed his positive energy and unflagging dedication to the post- polio community.
As well as being on the Executive of Polio Australia, Neil was also on Polio NSW’s Committee of Management and supported that states’ numerous metropolitan and regional polio support groups.
Neil's was a life cut short but his legacy will live on. He is survived by his wife, Gail, and daughter, Bev.
A Guest Book for Neil von Schill has been set up with on The Sydney Morning Herald and will remain online until 19/06/2014. Page 4
Volume 4, Issue 2
Always something new to learn ( c o n t ’ d f r o m p 1 ) the beginning, “The Polio Polio Memories, Telling Your how that knowledge could Body”, presented by Dr Story and a Family History assist them in managing their Stephen de Graaff, Senior Taster, with more massages new symptoms was Rehabilitation Physician, and consultations interspersed invaluable. To the Retreat Epworth Healthcare, Victoria. between them. There was also Junkies and others there was a session for partners of a always something new to Dr de Graaff spoke on the person who has had polio. learn, but also the making of initial polio infection and what [See full Program here.] new friends and renewing occurred in the body, the friendships was also of high advent of post-polio syndrome The day concluded with a visit importance. We left on a high and the late effects of polio, from the comedian, Tommy and looking forward to the and the difference and the Dean. This was a very next Retreat at Torquay, management of both. His talk enjoyable segment of the Victoria in 2015. will be on the Polio Australia Retreat, made more so website, along with other because of a discussion as to Retreat presentations. whether Tommy had contracted polio or Guillain Dr Stephen de Graaff Following the Plenary session Barre Syndrome as a child. were concurrent sessions, all After much discussion and based on the Polio Body. This advice to Tommy, we still was the format for the rest of don’t know what he the Retreat. Interspersed contracted, but he is certainly between sessions were one of us - he has a disability. massage sessions, displays from the Independent Living Sunday - the final day of the Centre NSW of assistive Retreat. This day is always technology, a Barefoot different. People are often sad Freedom Footwear Display to be leaving newly found and, of course, meals. The day friends, they are hurrying to concluded with a performance pack and get their bags away, Paul Galy from the “Circular Keys and they are distracted by the Chorus”, proponents of the art impending return to normality. -form of barbershop harmony. The Healthy Spirit is not an easy topic, but it was well Saturday, The Healthy Mind, illustrated by Sr Annie Bond, commenced with a Plenary previously Centre Director at session titled, “Healthy Brain St Joseph’s, in her Plenary Ageing”, by Dr Loren session. Mowszowski from the Brain and Mind Research Institute, Sr Annie spoke of how the University of Sydney. This was spirit is intangible but an one of the best sessions, integral part of the body. She probably because most of us spoke of how beauty takes a person beyond mundane could relate to it. She gave Tommy Dean examples of incidents, losing things – that is spirit. She our car keys and forgetting spoke of the joy when she that word. She assured us that returns to St Joseph’s, the this is quite normal, because beauty of the place, and the as the body ages, so does the spirits which have been here – brain, but it could also indicate both the spirits of early something else is going on pioneers and those of the and to seek help if one is religious order. concerned about it. She gave The day concluded with a us little exercises to illustrate closing Plenary where her statements. By request, everyone spoke on what they this presentation will not be on had gained from the Retreat. Polio Australia’s Website. To the first-timers, the Again, there were sessions knowledge they had gleaned such as Seated Yoga, Early from the various speakers and Page 5
Polio Oz News
Polio Health and Wellness Retreat picture highlights Page 6
Volume 4, Issue 2
Polio Health and Wellness Retreat feedback
“What a most worthwhile and “Having participated in our third Polio Health and inspiring retreat! I said to you prior Wellness Retreat, this time at St Joseph’s Convent to the retreat that I had never in NSW, I have to say they just keep getting better! attended any of the functions mainly Each Retreat has left me feeling better able to make due to the demands of life/career informed choices to manage my post-polio daily and the fact that one just ‘gets on living. with it’. I am really pleased to have attended and was more than Both my husband and I appreciate all the new impressed with all that unfolded. knowledge and ideas to try as well as the reassurance that we are not alone. Many of the sessions provided vital information and yes I appreciated The program was structured to cover the healthy the one-to-one with Dr de Graaff, body, mind and spirit. That ‘whole person’ approach the massage, etc. and above all else is quite a contrast to our early polio years when the meeting and relating to a most focus was all on the body bits that weren’t normal, remarkable and courageous group of with little or no attention to our childhood needs of individuals. nurture, family contact, dignity and rights.
There were varying manifestations of I was impressed by the three plenary speakers who the effects of polio but really in the put a new perspective on familiar topics. I also truest sense of the word the managed a few sessions based on meditation retreatants are not disabled at all! I techniques, an informative exercise talk, travel tips feel very blessed to have had the and bought a new pair of red shoes which I opportunity to be part of the retreat. just love.” - JS (Vic) There is a sense that we are all family!” - MH (NSW)
- RC (NSW)
cont’d p7 Page 7
Polio Oz News
Health and Wellness Retreat feedback ( c o n t ’ d f r o m p 6 )
“While there is often a feeling that there may not be much more we can learn or do to assist in our daily lives and ongoing mobility, it was generally agreed that we were leaving the Retreat richer for not only the information gained but also for the new friendships forged and the old renewed.” JW (Qld) Page 8
Volume 4, Issue 2
Supporting Polio Australia
Polio Australia would like to thank the following individuals and organisations for their generous support from 1 March 2014 to 31 May, 2014: Hall of Fame
Name Donation Anonymous $10,000 Jill Pickering $10,000 John Tierney $2,500 Mark Coulton MP $1,000 Total - $23,500 Significant Donations
Donation - General Anonymous Second Look Examiners J Burn The G & D Nucifora Family Polio SA Total - $1,005.00 Project Funding
Name Donations - Walk With Me GSK Australia for 2014 Retreat $8,000.00 Mary MacKillop Foundation for 2014 Retreat $8,000.00 $16,000.00 Rotary Donations
Name Donations - Rotary Rotary Club of Ross River (Qld) $2,000.00 Rotary Club of Thuringow (Qld) $2,000.00 Rotary Club of Townsville Central (Qld) $2,000.00 Rotary Club of Cairns-Mulgrave (Qld) $1,000.00 Rotary Club of Townsville (Qld) $1,000.00 Rotary Club of Mareeba (Qld) $750.00 Rotary Club of Townsville West (Qld) $500.00 Rotary Club of Cairns $300.00 $9,500.00
Become a Friend – Invest in Polio Australia and Make a Difference
Please invest in Polio Australia’s work to help ensure that all polio survivors in Australia have access to appropriate health care and the support required to maintain independence and make informed lifestyle choices.
Polio Australia is endorsed by the Australian Taxation Office as a Health Promotion Charity and a Deductible Gift Recipient making all Australian donations over $2 tax deductible. Polio Australia will issue an official receipt for all donations received.
Your Donation can be made via any of the following methods. Click here to see all the options.
Thank you for investing in us to make a difference – every donation helps polio survivors Page 9
Polio Oz News
H a v e Metro Traveller , will travel
by Jan Williams relatively inexpensive, very light-weight backpack. I packed the very bare essentials I am a polio survivor from the 1950’s and for my trip (not an easy task when travelling now, unfortunately, experiencing some of its to Melbourne, given its unpredictable weather) late effects, most predominantly the inability and found that by placing the backpack on the to walk the distances I once could, without front of the walker with the straps over support. On trips to Chermside, my nearest handles, I had a very effective method of large shopping complex, I rely on and am looking after my luggage. very grateful for the marvellous service provided by Westfield, ie a booked car park Just be aware airline check-in staff are used to and a mobility scooter (power shopper) free of handling our “granny” walkers, ie you can use charge, available for 3 hours. An occasional them to the door of the aircraft and then they trip to DFO and I rely on my “granny” walker are whisked away to be retrieved eventually at – great because it has its little basket for my your destination. On my first few trips I had to occasional purchases - but most importantly a explain that my ”you beaut” walker folds to seat, handy when shopping for clothes with approximately the size of 2 crutches, only my daughter, which can be an extended weighs 2.9 kg, and will fit in an overhead exercise! And, of course, my ever trusty locker. This was accompanied with a folding walking stick for shorter trips. demonstration of how it in fact works. Once seen, there has been no problem with taking it None of these, however, are particularly on board, although the ultimate decision is helpful when flying. And whilst normally my with the Head Steward on your flight. I have flying trips are with my ever supportive not yet been knocked back and, in fact, my husband Ray, who has been my main prop for walker has created a lot of interest on these the last 42 years, a little over a year ago I trips. found myself in the predicament of flying to Melbourne alone. Hence my search began. I Finally, and as a testament to the strength of knew what I was looking for, but was there this “very best thing ever”, Ray and I such a thing? I described my thoughts to Ray embarked on a trip to Thailand last July and it hoping he (being a very clever person) might saw me on my feet all the way. Admittedly its be able to come up with a solution – a walker poor little glider feet were worn out by the that folds to no larger than the size of a pair time we returned. However, an easy fix – they of Canadian (I thought we called them are replaceable for $5.00 a pair. “French” way back when) crutches – light- And no, I’m not on commission. I have just weight material and small enough to fit in the overhead locker of an aircraft. A bit of an ask discovered something that has been an absolute God-send as my mobility decreases, you may well say. and I hope that in sharing this, others may Ye ha! Thanks to Mr Google, I found the continue to enjoy travel as I do. “Metro Walker”. This very important addition to my “mobility fleet” is available from “The Happy Travelling! LifeStore” located at 15 Lathe Street, Virginia, Qld 4014. As I live nearby, I did visit their showroom and purchased mine in store. I Ready to Travel would suggest, however, a visit to their website www.thelifestore.com.au to have a look for yourself. The site gives you all the good info including cost, $149.00. They will deliver anywhere in Australia free of charge – and their service is amazing. After the success of mine, I ordered 2 online for elderly relatives in South Australia and they were on their doorsteps within 3 days.
Armed with my new “very best thing ever” I was ready to set off on my 3 day visit to Melbourne. There was still, however, one The Metro Walker unresolved issue – how was I going to handle fits easily into an my luggage? With a little experimentation the aircraft overhead locker problem was soon solved. I bought myself a Page 10
Polio Oz News
Travels with a “ w h e e l i e ” by Lyn Lillecrapp Sunshine Coast, then up to Mackay, back to Kinka Beach for 10 days, meeting Queensland What wonderful memories were evoked by friends there, and experiencing Rocky’s reading Alyce Pearson’s story, “Alyce and the coldest winter day on record! Even for a Kombi” (OTR, July 2011). I, too, as a single southerner used to rather cool winters, it was female, have travelled much of this wonderful cold. That same year was also my first trip to country of ours, albeit using my “Mini the Flinders Ranges – an easy day trip from Merc” (wheelchair) as well as a motor vehicle. my home town, Gawler [in South Australia]. “Wheelchair bound”, “confined” to a wheelchair – certainly not! The following year saw me planning a trip up through the Red Centre, leaving early June, Having a father who claimed his ideal “home” arriving home – when? What an experience! was camped under a gum tree, beside the Here I now was in areas I had only read Mighty Murray with the billy on the boil, I about, viewing Uluru at sunset, the Olgas guess the travelling, camping lifestyle is in my being just as majestic, meeting incredible blood. (and incredulous - at my audacity of travelling My first foray into camping was in 2003 when, alone as a “wheelie”!) fellow travellers along with borrowed equipment from seasoned the way. I did all the things and visited all the hiking/camping friends (to see how/if I could/ places the “good” tourist does and visits – would manage before outlaying any cost), and helicopter flights over Katherine Gorge, having 3 weeks annual leave, I travelled Kakadu Yellow Waters Cruise. On to Darwin, through Victoria, via the Snowy Mountains to staying at Howard Springs (was anyone left the New South Wales (NSW) South Coast, down south) for 10 days, then across to then up to Wollongong. The only problem Kununurra for 2 weeks, on to Broome, down incurred was when a Southerly Buster blew in the West Coast to Geraldton, then, as it was at Narooma and the tent’s stitching collapsed getting much colder, decided to head for – a motel for the night, tent repaired the next home (promising myself to return to the south day, then onwards and upwards! -west corner of Western Australia (WA) in warmer months). Over to Kalgoorlie, seeing During 2005 I continued travelling and some of the early blooming wildflowers for camping in my 2WD station wagon (sleeping which the West is famous, to Norseman, then behind the driver’s seat and storing a wonderful trip across the Nullarbor. Boring? equipment on the passenger side), travelling Definitely not! A drive I so much enjoyed, through NSW and Queensland (QLD) to the determining to one day again travel The Plain. east coast then on to the Daintree Rain Forest. Over the next 2 years, having decided 2010 saw me in Tasmania for 6 weeks, having that with careful planning I could manage sailed on the “Spirit” in late January. With very well, I researched small 4WD vehicles, careful planning and booking through a travel camping equipment, and subscribed to agent to ensure the correct procedure for camping magazines – OTR being the only “wheelies”, the trip each way was a breeze. magazine with reports on any disability Again, a wonderful time travelling the east facilities – and started rigging out. and west coasts including the Tarkine Forest road, and all through the middle, also catching In 2007 I purchased a Nissan X-Trail (back up with friends in Deloraine. A few minor seat laid flat for sleeping, a suitable size for problems experienced with lack of access to me to handle, and 4WD enough for my needs, some of the early buildings as, due to being recognising that “Mini Merc” is not 4WD and, heritage listed, they were not allowed to be therefore, I would not be accessing really adapted for access. Nevertheless, I was able rugged areas) named it “Boris” after the croc to access so many areas and experience the in the ads for that model and, with a few beauty and history of the “Apple Isle”. adaptations – moving the under-the-floor spare wheel to a swing-away outside the Keeping my promise to myself to return to hatch (with a detachable ramp for rolling the WA, I again travelled the Nullarbor in tyres up and down) and installing a release February of this year, swinging south from button to open the hatch from the rear Norseman and travelling west, then north to compartment – I was ready to roll, having Fremantle, not visiting Perth as I had finally ceased full-time employment after 40 previously done so on a number of occasions years. when working. I spent 4 glorious weeks in this area, again being awed at the majesty and My first trip in this vehicle was to the beauty of various areas, and meeting some of
cont’d p11 Page 11
Volume 4, Issue 2
Relief for ‘ spider legs ’
For about the last 30 years, as I recall, it may be longer, when I have gone to bed I have had pains in my legs and "spiders" crawling all over them. I was told it was typical. I had the pains most of my life, but not the "spiders" until about 30 years ago, or so. It drove me mad, night after night after night. I also developed Diabetes Mellitus.
The last time I saw my endocrinologist I was given a good report on all diabetes related problems, then she asked if anything else was wrong. I told her of the post-polio problems.
She prescribed an epilepsy medication, "Lyrica" also known as "Pregabalin", taken in the evening, which she said would probably stop the pain signals getting to the brain. She was correct! I now sleep at night.
The lack of sleep has caused enormous problems for me over the years. At one stage I had a complete breakdown. If only someone else had thought of this treatment. Maybe this could help others, if it has not been tried already.
John Murphy LLB (Adelaide) GDThS (Flinders)
ED NOTE: Please discuss any medication with your GP or treating medical specialist to check for any possible contraindications. Polio Australia does not endorse or recommend any specific medication, deferring to informed doctors and expert literature/research. However, we do think it’s important for people to be able to exchange information about what has worked for them.
Travels with a “ w h e e l i e ” ( c o n t ’ d from p10)
the friendliest folk, with some of whom I’ve being able to accept that many things can be kept in regular touch. Home across the done in different ways. Did they feel Nullarbor, again a most enjoyable drive. threatened by this, I wonder?
Mad to travel alone as a “wheelie”? Some have Yes, there are areas I cannot access or hike said, “definitely”, others have been so into, but by joining a 4WD Club I make up for supportive. Any troubles? Mechanically, no as I this by taking delight in other members’ trips, have always ensured my vehicles are in top their stories and photos. What would I have condition, with appropriate adaptations I not seen had I not gone travelling – so much. require for this type of travel. Safety? I was I enjoy what I can see/do, and don’t worry securely locked into my vehicle each night, so about what I can’t. no problems here. Most “problems” have come from occasionally abusive fellow travellers Future travels? Definitely! Next year I’m over who, for some reason, believe I have no right to the Victorian High Plains - then maybe up to be out and about. I pity them for their the Centre again. But who knows where the narrow mindedness and, perhaps, their lack of mood plans?! Page 12
Polio Oz News
Victorian man with ‘ probable polio ’
Source: 3AW News - 22 May 2014
A Victorian man has been placed in isolation at the Austin Hospital after suffering a polio-like illness.
The hospital has promoted a warning to those travelling overseas to ensure they're fully vaccinated.
The man, aged in his 40s, had been working in the horn of Africa. The Health Department said the man became ill early in April while in Somalia. The man returned home earlier this month and was placed in precautionary isolation at the Austin Hospital with what has been described as a polio-like illness. He is in a stable condition.
But speaking with Ross and John, acting Chief Health Officer for Victoria, Doctor Finn Romanes, said the man had suffered 'probable polio'.
“The Australian expert polio committee has had a look at this case and they’ve determined that while he’s probably not infectious for polio, he probably did have polio whilst in Somalia,” he said. “He probably has polio. Unfortunately polio is on the rise around the world. I think this is a precautionary tale about the importance of getting vaccinated before you travel overseas."
LISTEN: Dr Finn Romanes speaks with Ross and John
In a statement the department said tests had not detected polio virus so there was virtually no chance of any infection being passed on.
Polio survivors to gather in St Louis May 31 - J u n e 3
Source: St Louis Post-Dispatch - 25 May 2014
Judith E. Heumann, Special Advisor for Late Effects of Polio International Disability Rights at the U.S. An estimated 575,000 individuals are living Department of State, w ill address P ost- and aging with polio in the United States. Dr Polio Health International’s 11th International Frederick M Maynard, experienced physiatrist Conference: Promoting Healthy Ideas at lunch and PHI Board Member, from Marquette, on Tuesday, June 3, 2014 at the Hyatt Michigan, will begin the conference with a Regency St. Louis at The Arch. “Review of the Late Effects of Polio & Your Health” on Saturday afternoon, May 31. Ms Heumann will discuss several issues including her role as the Department of State’s Polio has been in the news recently because of Special Advisor on International Disability the new cases in ten countries thwarting the Rights and her personal experience as a polio goal of eradication. Once eradication is survivor. She also will discuss the Disabilities accomplished there will be a need for Treaty, also known as the Convention on the information for those for whom the vaccine Rights of Persons with Disabilities, which has was too late. The purpose of this conference not yet been ratified by the U.S. Senate. and of PHI is to educate polio survivors about Addressing about 200 survivors from 34 states, living with polio by promoting healthy ideas she will raise awareness about the treaty and and to bring awareness to the public about the its importance to those living with disabilities in lives and needs of the survivors of polio. America and across the globe. Read full article here. Page 13
Volume 4, Issue 2
Primary health care
Scrapping Australian Medicare Local Alliance creates silos in primary health care - 13 May 2014
The coordination of primary health care has been severely disrupted following the Federal Government’s decision to scrap the Medicare Locals’ national body, the AML Alliance.
AML Alliance Chair, Dr Arn Sprogis said tonight the Government’s plan for primary health care is to destroy what’s already there only to re-establish another primary health care system – effectively primary health care 2.0.
“Between now and July 2015 as the Medicare Locals come to an end, it will be every Medicare Local for itself and any coordination will be via the health bureaucracy which is ill prepared and incapable of delivery,” Dr Sprogis said.
“Health services at the frontline will be in disarray beyond 2015 as another primary health care system is re-built and re-established,” he said.
“The losers tonight are patients, carers, health professionals and other Australians who need health services coordinated and supported now and not when they are re-arranged.”
Read more here.
Creating inclusive and livable communities
Universal design is a world-wide movement COTA NSW is proud to bring you the that aims to create environments, products, inaugural Australian Universal Design services, and technology that can be used Conference which will be held on 20 to 21st by as many people as possible. It makes August 2014 at Sydney’s Town Hall. things more useable, accessible, safer and convenient for everyone. The main Universal Design Conference will be beneficiaries of universal design are those organised by Interpoint Events, the face to who are currently excluded, albeit face arm of the Intermedia Group. The inadvertently, by design – people with conference will also have support from disabilities, older people and sometimes Intermedia news publications which include children and their parents. Government News, Australian The concept of universal design is Ageing Agenda increasingly evident in Australian policy and and Freedom2live. planning documents at all levels of government. However, there is a paucity of More information information about the concept and where to is available by go for information. This conference will focus calling 1300 789 on the built environment, which includes 845 or the housing, public buildings, public spaces, Conference parks, and transportation. website here.
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Polio Oz News
Balancing hypertension drugs and fall risk in elderly by Henry R Black, MD cohort, as you do in a randomized trial, you try to create one using the characteristics of the Source: Medscape – 9 May 2014 people in the trial and you try to match them.
They created a propensity sample and then compared the whole cohort of almost 9000 with the propensity sample of almost 4500 to determine whether taking antihypertensive agents mattered in serious falls. [Editor's note: Almost 7000 adults older than 70 years with hypertension met eligibility; the cohort comprised 4961 participants and the propensity sample comprised 2849 participants.] Serious falls, fractured hips -- not just bumping your elbow, but fractures, head trauma, and death. The findings are quite interesting. They used a technique that the Dr. Henry Black, Clinical Professor of Medicine World Health Organization (WHO) devised to at the Langone New York University School of look at the doses of drugs and how these Medicine and a former president of the doses affect outcomes. American Society of Hypertension. Twenty-five percent of the group who One of the great victories of the past 50-60 experienced a serious fall died compared with years is the success of antihypertensive therapy 16% of those who didn't have a serious fall. in preventing strokes, by 30%-40% in every That's not very surprising. If you look at the trial when we look at the statistics. More antihypertensive doses, the people on no recently, statins have clearly helped to reduce medicines had the fewest falls, but the people the incidence of myocardial infarction and heart on increasing doses of medicine, using the disease. WHO technique, didn't show an increase in falls that you would expect in a linear dose- There are appropriate concerns, especially with response relationship. This was the case in the the antihypertensive agents, that we might be whole cohort as well as in the propensity causing some harm with respect to falls. Falls sample. In fact, a group in the middle, who are a major problem for older individuals, were taking medium doses of antihypertensive especially individuals with osteoporosis, in medication, had the highest rate of falls: whom a hip fracture and subsequent 9.8%. The highest rate of falls did not occur in hospitalization carries about a 50% 1-year rate the group taking the highest doses of of mortality. If antihypertensive agents are antihypertensive drugs. About one-third of responsible for a patient becoming dizzy, falling people who were on antihypertensive drugs down, and breaking a hip, then we have to were taking a drug from a single class, one- start thinking about balancing the risk and third were taking drugs from 2 classes, and benefit. one-third were taking drugs from 3 classes.
When we look at randomized trials, we don't What can we make of this? The important see any evidence of increased falls. That may thing is to continue to be vigilant and to warn be partly related to the people who volunteer to people about this risk. People who have a be in randomized trials and how healthy they likelihood of falling have to be cautioned about are. They tend to be healthier than the general this, and sometimes we have to adjust when population. Mary Tinetti from Yale University (a the medications are taken. No particular class former colleague of mine), along with a of drugs was associated with an increase in multitude of outstanding statisticians, has tried falls. It was the same, regardless of whether to get a handle on this issue using Medicare patients took a diuretic (which we think of as data. They collected data on approximately having this particular problem), a renin- 7000 individuals who were in that database. angiotensin system blocker, a calcium channel They had some inclusion and exclusion criteria, blocker, or a beta-blocker. They were all about and they used a propensity-matched sample. the same. This is a very interesting new statistical technique. When you don't have a comparative
cont’d p15 Page 15
Volume 4, Issue 2
Latest Australian Bureau of Statistics on disability by Kymberly Martin in News
Source: Freedom2Live - 23 April 2014
Just under one in five people or 18.5 per cent of Australians reported having a disability in 2012, according to the ABS. These figures show that disability prevalence has remained steady since the last survey was conducted in 2009. A further 21 per cent reported having a long-term health condition that did not restrict their everyday activities while the remaining 60 per cent of the population did not have a disability or long-term health condition. However, the majority of those with disability, 88 per cent, reported having a specific limitation or restriction.
When it comes to long-term health conditions, 19 per cent of people with disability said having a mental or Those of working age most Older people were likely to behavioural disorder caused likely reported back have arthritis and related them the most problems with problems (19 per cent), disorders (21 per cent) or a the type of condition varying disease of the nervous disease of the circulatory with age. system (8.8 per cent) or system such as heart A child was most likely to mood affective disorder disease, stroke or high have an intellectual and such as depression (6 per blood pressure (13 per development disorder (38 cent) cent)
per cent) or asthma (6.3 Read full article here. per cent)
Hypertension drugs and fall risk ( c o n t ’ d from p14)
What are we to do? In the study the mean age was 80 years, and there was no difference between those over and under the age of 85 years in the risk for falls and the relationship with antihypertensive drugs. This is a strange finding, but maybe once you get to age 85, you are healthier than somebody who doesn't make it that far.
So beware, but let's not forget the benefits of antihypertensive therapy, which we have now demonstrated in all age groups that we have studied, especially with respect to strokes and myocardial infarction. Page 16
Polio Oz News
Evidence fruit and vegetables cut stroke risk by Megan Brooks The inverse association of total fruits and vegetables consumption with the risk for Source: Medscape Medical News stroke was consistent in subgroup and meta- – 8 May 2014 regression analysis, the researchers say.
Eating more fruits and vegetables may help The average serving was calculated as 77 g for lower the risk for stroke worldwide, according vegetables and 80 g for fruits. "A linear dose- to results of an updated meta-analytic review of response relationship was found, the more studies conducted in Europe, the United States, consumption of fruit and vegetables, the better and Asia. for stroke prevention," Dr Qu told Medscape
For every 200 g per day increment of fruits and Medical News. vegetables, the risk for stroke fell by 32% and Stroke risk decreased by 32% (relative risk, 11%, respectively, across these studies, the 0.68; 95% confidence interval, 0.56 - 0.82) study team found. and 11% (0.89; 0.81 - 0.98) for every 200-g
"The findings are consistent with the current increment in daily fruits and vegetables, respectively. knowledge that increasing consumption of fruits and vegetables should be encouraged to Apples and Oranges prevent stroke," Yan Qu, MD, the study's senior Asked for comment on these findings, Gustavo author, from Qingdao Municipal Hospital and Medical College of Qingdao University in Saposnik, MD, director, Stroke Outcomes Research Center, St Michael's Hospital, Qingdao, China, told Medscape Medical News by email. University of Toronto, Ontario, Canada, who wasn't involved in the study, called the study The study is published online May 8 in Stroke. "interesting," and said the benefits seen are consistent with previous studies. A limitation is Positive and Negative Associations that in most of the studies vegetable/fruit In recent years, several prospective cohort consumption is self-reported, he noted. studies have assessed the effect of fruits and "Two hundred grams of fruit per day may vegetables consumption on the risk for stroke, sound a lot, but this would represent 2 yielding both positive and negative medium-size apples or a large 1 and a half," associations, Dr Qu explained. The magnitude he told Medscape Medical News. of association also varies among the previous publications on fruit and vegetable consumption Dr Qu noted that "citrus fruits, leafy and the risk for stroke, she noted. vegetables and apples/pears were found inversely associated with risk of stroke. To quantitatively assess the effect of fruits and However, the effect of other types of fruit and vegetables consumption on the risk for stroke, vegetables on stroke risk still needs to be Dr Qu and colleagues did a meta-analytic confirmed." review of 20 prospective cohort studies published to January 2014. The analysis A recent bulletin from the World Health included 16,981 stroke events among 760,629 Organization (WHO) estimates that increasing adults. individual fruit and vegetable consumption to at least 600 g daily could cut the burden of Higher intake of fruits and vegetables (together ischemic stroke by 19% worldwide. and separately) were inversely related to stroke risk in multivariable analysis. Dr Qu and colleagues say several biological mechanisms might explain the inverse Table. Risk for Stroke With Highest vs association. "Both short-term controlled Lowest Intake intervention trials and prospective cohort studies have shown that an increase in fruits Odds Ratio and vegetables consumption can lower blood Intake (95% Confidence Interval) pressure and also improve microvascular function," they point out. Favorable effects on Fruits and 0.79 (0.75 - 0.84) other cardiovascular risk factors, including vegetables body mass index, cholesterol, inflammation, Fruits 0.77 (0.71 - 0.84) and oxidative stress, were also seen.
Vegetables 0.86 (0.79 - 0.93) "Higher fruits and vegetables consumption increases micronutrient, carbohydrate, and fiber intakes, and possibly reduces fat intake.
cont’d p17 Page 17
Volume 4, Issue 2
Fruit and vegetables cut stroke risk ( c o n t ’ d from p16)
Nutrients such as potassium, folate, antioxidants (vitamin C, β-carotene, and flavonoids), and fiber have been shown to be significantly associated with a reduced risk for stroke," they note.
The study was funded by the Qingdao Municipal Hospital. The authors have disclosed no relevant financial relationships.
Stroke: Published online May 8, 2014.
Fighting brain cancer with polio
Doctors Treat College Student’s Tumor injected a genetically-modified version of the With Poliovirus poliovirus (PVS-RIPO) into the tumor — and it hasn’t returned since. Now, Lipscomb is able to by Lecia Bushak celebrate her 23rd birthday cancer-free.
Source: Medical Daily - 30 April 2014 Polio is a life-threatening disease that slowly kills its victims through paralysis, leaving them Stephanie to die once their lungs stop working, if they’re Lipscomb, 23, is not treated properly. Young children who cancer-free after aren’t vaccinated — particularly in rural, being remote areas of the globe — are the most successfully vulnerable to the virus. Thanks to the polio treated with PVS- vaccine, however, the disease has been wiped RIPO, a out almost everywhere in the world, except for genetically- three countries where it remains endemic — modified Nigeria, Afghanistan, and Pakistan — as well poliovirus that as Syria, where recently it broke out again in destroys cancer. areas where the civil war ravaged the USA Today countryside.
Polio, despite being a deadly virus that we are Doctors at the Preston Robert Tisch Brain attempting to wipe out for good, is also Tumor Center at Duke University Medical helping doctors fight cancer — at least in a Center hope to carry through more of these genetically-modified form. poliovirus-cancer surgeries. So far, they’ve
One 23-year-old nursing student from completed several and followed up with two Spartanburg, S.C., became the first patient to patients who are now living a normal cancer- free life. receive a successful poliovirus treatment for her brain tumor. Diagnosed with stage four Viruses engineered to kill cancer cells are glioblastoma at age 20, Stephanie Lipscomb known as “oncolytic viruses,” and they must was told by medical professionals that she be able to target the cancer and destroy it, would not live long. “The odds weren’t good,” while remaining safe at the same time. Lipscomb told USA Today. “They didn’t expect “Accomplishing this is very difficult me to live more than two years, I don’t think.” scientifically and only very few viruses are Despite undergoing surgery, chemotherapy, suitable as cancer-fighting agents in the and radiation therapy, the tumor kept coming clinic,” Duke University’s PVS-RIPO website back. notes. “We achieved this feat by genetic
In May 2012, doctors at Duke University engineering to remove poliovirus’ inherent Medical Center gave Lipscomb the chance to disease-causing ability. PVS-RIPO naturally be a part of an experimental treatment that infects almost all cancer cells, because the harnessed the use of the poliovirus in targeting receptor for poliovirus (which is used for cell the cancer. During a lengthy surgery, doctors entry) is abnormally present on most tumor cells.” Page 18
Polio Oz News
Can the measles or polio be the next cure for cancer? by Dr Manny Alvarez A typical cancer cell moves very fast and replicates very rapidly. Therefore, some viruses Source: FoxNews.com - 15 May 2014 have an affinity to get into these cells and use them as incubators, so the viruses can multiply at a fast rate, as well. But once these viruses are attached, the cancer cells essentially explode and release the virus into the body.
With this mechanism in mind, doctors utilized very large doses of the measles virus and polio virus on a small number of cancer patients. Just as expected, the viral strains penetrated and destroyed the tumor cells, ultimately killing the cancer. After the therapy, the patient’s own immune system did the rest by ingesting the leftover cellular debris from both the cancer cells and the engineered viruses.
Though this is remarkable, let’s also look at the other side of the coin. These are extremely delicate trials, which must be conducted under very strict protocols, and we don’t know yet whether this will be applicable to all types of cancers.
This thin-section transmission electron One of the limitations of using viruses to kill micrograph (TEM) reveals a single virus particle, cancer cells is that the patient should be void or virion, of measles virus—CDC.gov of immunity, as too strong of an immunity towards the measles virus will limit its Can viruses such as measles or polio be the effectiveness of multiplying in the cancer cells. next cure for cancer? However, many cancer patients are already immunosuppressed, so this may only be a The answer is maybe. partial problem.
Two recent studies from the Mayo Clinic and The other potential complication revolves Duke University Medical Center detailed how around the toxic effects of being exposed to researchers utilized the measles virus and the enormous amounts of live virus. As was the polio virus to destroy cancer cells. case in these small studies, one patient developed nausea, vomiting and very high The excellent news is that in these very small temperatures. Additionally, viral toxicity could patient trials, there were some significant lead to permanent damage of our immune successes. One patient went into total system, creating other problems such as remission from multiple myeloma after guillain barre syndrome – which causes the receiving a strain of the measles virus, and body’s immune system to attack the nerves. another patient, who suffered from brain cancer, was treated with the polio virus and The final word here is that these studies shine seems to be in remission as well. a bright light on the future of cancer therapy. I think that all of the scientists who participated So how is this all possible? in these historical trials should be congratulated, and I hope that these cases This research is all part of a new medical field lead to larger human trials and, one day, of oncolytic virotherapy. The “proof of concept” clinical treatments. studies stem from many years of animal research, analyzing how viruses can penetrate Full article here. certain types of cancer cells. Page 19
Polio Oz News
G r e e n t e a ’ s impact on cognitive function now visible by Megan Brooks beneficial effect of green tea on cognitive functioning, in particular, on working memory Source: Medscape Medical News – processing at the neural system level by Psychiatry – 16 April 2014 suggesting changes in short-term plasticity of
Green tea appears to boost memory by parieto-frontal brain connections," the enhancing functional brain connectivity, a new investigators write. imaging study suggests. The study was published online March 19 in A study led by Stefan Borgwardt, MD, PhD, Psychopharmacology. from the Department of Psychiatry, University of Basel, Switzerland, shows that drinking a green tea extract enhances memory performance, a finding that researchers suggest may have important clinical implications for the treatment of neuropsychiatric disorders, including cognitive impairment.
This is "the first evidence for the putative
Tribute to a photographer who rocked our world by Jan Phillips that are partly responsible for the institution of the Social Security program. Source: Huffington Post - 2 May 2014 She never thought of herself as an artist, but I co-authored a coffee table book with a her art moved mountains. Her pictures were friend last year and we just found out it won worth millions of words. I discovered today that the 2014 Nautilus Award. The announcement it's the anniversary of Jonas Salk's polio vaccine came when I was in the middle of a chapter going public in 1956. And it seemed a good day on a new WHY-TO Creativity book. I'm trying to share Dorothea's brilliance with the world. to remind people WHY it's important that they This is my attempt to share her hope, and my give voice to their creative spirit - how it own as well. heals them, causes abundance in unforeseen ways, leads to better health and greater bliss. This is the link to my digital tribute. When I thought of my own creative heroes, Dorothea Lange came to mind, so I turned off the phone, locked the door to my studio, and spent 2 days making a video tribute to her.
Dorothea contracted polio as a child. She had a serious limp and a right heel that never touched the ground. Her father abandoned the family when she was 12 and she had to figure out how to make a go of things on her own. She started out with a portrait studio in San Francisco, but sold it and joined a federal program that was documenting the story of the Dustbowl exodus. It's her image of the Migrant Mother that we all know. Her images that moved John Steinbeck to write Grapes of Wrath and John Ford to direct the movie that caused thousands of Americans to lobby Con- gress and stand up for the poor. Her images Page 20
Polio Oz News
The Normal Heart by Elisa Lipsky-Karasz
Source: The Wall Street Journal – 21 April 2014
Academy Award-winning actress Julia Roberts discusses her preparation for HBO's stage-to- screen adaptation of Larry Kramer's acclaimed Tony Award-winning play THE NORMAL HEART, directed by Ryan Murphy, as part of a new interview.
The project is not from the typical Julia Roberts playbook: There are no big laughs, no fairy-tale romance and certainly no big hair, which is coiled into a low bun as Roberts plays the tightly wound, wheelchair-bound Dr Emma Brookner, a polio victim who has become an Dr Laubenstein and bringing a 1980s-era AIDS doctor. It's a small but pivotal role in an wheelchair home for practice. "It was the most ensemble piece, an unflinching movie about actor-y I've ever been," she says. "But you the 1980s AIDS crisis in New York City, don't want to be bumping into walls and adapted by activist playwright Larry Kramer doorjambs and scraping your knuckles on and director Ryan Murphy (the creator of Glee) things. I thought being in a wheelchair would from Kramer's original 1985 play. The be so easy and quiet, but it was actually quite character of Dr Brookner—based on the real- tiring." life Dr Linda Laubenstein, also a polio survivor and New York City physician who treated early Despite being shot mostly from the waist up, AIDS cases—is a vociferous campaigner for she wore a heavy orthotic shoe with a AIDS research funding and a proponent of the significant lift to mimic a polio survivor's leg. wildly unpopular, and at the time scientifically "It was really just for me," she says. Roberts unsupported, recommendation of abstinence. also studied the effect a slightly paralyzed lung would have on her breathing pattern. Roberts prepared extensively for the role, interviewing a doctor who worked with the late Read the full article here.
Normal Heart a searing reminder of stigma by Kathi Wolfe telephone interview with the Blade. “Many people didn’t know that [polio] wasn’t Source: Washington Blade - 21 May 21 2014 contagious after the initial period of contagion had passed. They were afraid to hang out with “When I left the hospital, no one would come me or my family. They nearly shut down our near me,” my now deceased friend Sharon family’s hardware store.” said to me in the 1980s during the AIDS epidemic. “I got polio when I was 7, and Cyndi Jones, Stothers’ wife, who got polio as a people in my small Oklahoma town were child, was a poster child with the St. Louis scared as hell that they’d catch it from me. area March of Dimes. “One day, Cyndi’s at They wouldn’t hug me or touch a glass that I’d school,” Stothers said, “and the teacher holds had a drink in.” up a poster with a picture of Cyndi with her crutches and another picture of a child without William G. Stothers, chair of the board of Post crutches. Underneath Cyndi, it said ‘not like Polio Health International, contracted polio at this.’ Underneath, the other little girl, it said age 10. ‘like this.’”
“They knew it was a virus, but they didn’t To this day, Jones remembers the stigma that know what caused it or how to treat it,” she felt when she saw that poster, Stothers Stothers, a former ombudsman and city editor said. with the “San Diego Union Tribune,” said in a
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Polio Oz News
Normal Heart reminder of stigma ( c o n t ’ d from p20)
Why am I telling you this? Because, finally, In “The Normal Heart”, Kramer castigated (more than 30 years since it premiered at the closeted gay people, including then-New York Public Theater in New York City) a movie has Mayor Ed Koch, who look away from and keep been made of Larry Kramer’s iconic, searing research funds away from people with AIDS. play “The Normal Heart”. And the film of the same name, which premieres on HBO on May Many people with polio tried to pass, Stothers 25, reminds me yet again of the parallels that said. “They didn’t want to associate with exist between the polio and AIDS epidemics others with polio”. (as well as between the stigma that people with polio and AIDS have, and continue, to I wasn’t surprised to learn that Dr Linda encounter). Laubenstein, a pioneer in AIDS research in the early years of the AIDS epidemic, had polio. I’d never want to say that polio and AIDS, or Laubenstein was one of only a few doctors ableism (disability-based prejudice and then who treated people with AIDS. homophobia) are the same. “It’s not a perfect match,” Stothers said, “the fear factor with “She is incredibly important in the history of polio wasn’t homophobia”. AIDS - a real fighter for what she believed,” Kramer told “The New York Times”, when Yet, being queer and disabled (legally blind), Laubenstein died at age 45 in 1992. and having known over several decades people with polio and AIDS, I can’t help but The character of Dr Emma Brookner in “The see connections in these communities. To Normal Heart” (Julia Roberts) in the HBO begin with, many polio survivors and people movie is based on Laubenstein. “Polio is a with AIDS I’ve met have been scorned both by virus, too”, Brookner says in “The Normal the culture at large and by their own groups. Heart” to Ned Weeks, a character based on They’ve run up against discrimination in the Kramer. “I scare the shit out of people. You’ve workplace and in housing; been denied service got to get out there on the line more than everywhere from hospitals to restaurants and ever”. even turned away by houses of worship and funeral directors. At the same time, people Laubenstein and Kramer are among life’s few with polio and with AIDS continue to be heroes. Check out HBO’s “The Normal Heart”. shunned by some within their own communities. Read the full story here. Polio vaccine discovered
Source: BBC
American scientists announced they had discovered an effective vaccine against polio in April 1955. It would save millions of children from disability and death. The doctor who led the research was Jonas Salk. To hear from his son Peter and a nurse who worked with him, click on the picture below. Page 22
Polio Oz News
Australia commits $100M to polio eradication
Rotary welcomes Australian some parts of the world have elevated the risk Government’s $100 million commitment for outbreaks and international spread of the to polio eradication disease, prompting the World Health Organization to declare polio a public health Source: Rotary Australia Website emergency last month. Funding of life-saving - 1 June 2014 immunisation activities over the next several years remains critical to ensuring polio is Rotary welcomes Prime Minister Tony Abbott’s eradicated by 2018. announcement of $100 million commitment for polio eradication and routine immunisations. “Rotary members in Australia have played a Speaking today at the opening of Rotary significant part in the history of polio International’s annual convention in Sydney, eradication,” said Dr Scott.
Prime Minister Tony Abbott announced his “In 1979, Sir Clem Renouf of Queensland – government’s commitment to end the crippling then president of Rotary International – disease polio once and for all by committing spearheaded the effort to unite Rotary’s entire $100 million over 5 years. global membership behind a single cause for Dr Robert S. Scott, MD, chair of Rotary’s the first time in the organisation’s history.”
International PolioPlus Committee said, “We “Many Rotary members travel internationally are proud to stand alongside the Government to join fellow Rotarians and health workers in of Australia and applaud its commitment to polio-affected countries to immunise children,” protecting the world’s most vulnerable children said Dr Scott. “For example, Jenny Horton, a against polio.” Rotary member from Brisbane and a registered Since the Global Polio Eradication Initiative nurse, has helped vaccinate children in eight began in 1988, the incidence of polio has countries, including Nigeria, Pakistan and plummeted by more than 99 percent, from Afghanistan.” said Dr Scott about 350,000 cases a year to 416 confirmed Rotary’s annual convention is taking place in in 2013. That same year, India – once the Sydney 1-4 June. The event is expected to epicenter for the poliovirus - was declared draw more than 18,000 registrants from 152 polio-free and today only three countries countries, injecting an estimated $60.5 million remain endemic: Pakistan, Afghanistan and into the local economy. Nigeria. However, conflict and insecurity in
WHO declares ‘ public health emergency ’ by South Asia correspondent Michael "If unchecked, this situation could result in Edwards failure to eradicate globally one of the world's most serious vaccine preventable diseases." Source: ABC Radio Australia - 6 May 2014 The WHO convened emergency talks in The WHO has declared polio a public health Geneva last week after the virus was emergency of international concern after the discovered in 10 countries, including four virus is found in 10 countries, including where it is still considered endemic - Afghanistan, Nigeria, Pakistan and Syria. Afghanistan, Nigeria, Pakistan and Syria.
The World Health Organisation has declared The decision to categorise polio as a public polio a public health emergency of health emergency brings recommendations international concern, after new cases of the for countries where the disease is endemic to crippling disease surfaced in a number of implement vaccine requirements for anyone countries across the developing world. wishing to travel abroad.
"The conditions for a public health emergency Listen: NewsRadio speaks with of international concern have been met", WHO's assistant director-general WHO assistant director-general Bruce Aylward said in Geneva following crisis talks on the Polio is a crippling and potentially fatal viral virus long thought to be on the road to disease that mainly affects children under the extinction. age of five.
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Polio Oz News
WHO declares ‘ public health emergency ’ ( c o n t ’ d from p22)
There is no cure for the disease, which can be prevented with a vaccine.
In 1988, the disease was endemic in 125 countries.
Health authorities had come close to beating the disease as the result of a 25-year-long effort with the number of recorded cases worldwide plunging from 350,000 in 1988 to 417 in 2013, according to the WHO.
Pakistan outbreak traced back to tribal areas So far this year, 74 cases have been diagnosed worldwide, with 59 of them in Pakistan. A Bangladeshi health worker administers polio drops to a boy. The WHO has declared a public Dr Nima Abid, from the WHO in Islamabad, health emergency after new polio cases were said the organisation was very concerned the diagnosed in 10 countries. (Credit: AFP). disease's infection rate could rise significantly as the weather there becomes hotter. violence to keep vaccinators out of these regions. "May-June, onwards until September to December - this is the high transmission Amnesty International researcher Mustafa (season), when the activities of the virus will Qadri said Pakistan needs to get prominent be higher than during winter season or low scholars to publicly say that polio vaccination transmission season", Dr Abid said. is a good and necessary thing. "It's quite clear that polio has been generally rising in Pakistan The source of many of the outbreaks can be because the Taliban and other groups, some traced back to Pakistan's north-western tribal religious clerics, claim that polio vaccinations areas, where the Taliban has a strong are actually a secret attempt to sterilise the presence. population," Mr Qadri said.
Listen: Michael Edwards's report (AM) The situation got significantly worse after the CIA located Osama Bin Laden through the help Islamic extremist groups have a long history of of a vaccination program in 2011. opposing immunisation programs, with groups such as the Taliban carrying out a campaign of Since then, there have been dozens of deadly attacks on vaccination workers.
One billion people still defecate in public
by Tom Miles
Source: Reuters Health Information – 9 May 2014
GENEVA (Reuters) - One billion people worldwide still practice "open defecation" and they need to be told that this leads to the spread of fatal diseases, U.N. experts said on Thursday at the launch of a study on drinking water and sanitation.
"'Excreta', 'feces', 'poo', I could even say 'shit' maybe, this is the root cause of so many diseases", said Bruce Gordon, acting coordinator for sanitation and health at the World Health Organization.
Societies that practice open defecation - putting them at risk from cholera, diarrhea, dysentry, hepatitis A and typhoid [and polio!] - tend to have large income disparities and the world's highest numbers of deaths of children under 5 years old.
Attempts to improve sanitation among the poorest have long focused on building latrines, but
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Polio Oz News
One billion people still defecate in public ( c o n t ’ d from p23)
the United Nations says that money literally been at odds with the more successful strategy went down the toilet. Attitudes, not of neighboring Bangladesh, which has put a infrastructure, need to change, it said. big focus on fighting water-borne diseases since the 1970s, Luyendijk said. "In all honesty the results have been abysmal," said Rolf Luyendijk, a statistician at "The Indian government did provide the U.N.'s children's fund UNICEF. tremendous amounts, billions of dollars, for sanitation for the poorest," he said. "There are so many latrines that have been abandoned, or were not used, or got used as "But this was disbursed from the central level storage sheds. We may think it's a good idea to the provinces and then all the provinces had but if people are not convinced that it's a good their own mechanisms of implementing. And idea to use a latrine, they have an extra as their own data showed, those billions of room." dollars did not reach the poorest," added Luyendijk. Many countries have made great progress in tackling open defecation, with Vietnam and India's government has now woken up to the Bangladesh - where more than one in three need to change attitudes, he said, with a "Take people relieved themselves in the open in 1990 the poo to the loo" campaign that aims to - virtually stamping out the practice entirely by make open defecation unacceptable, helped by 2012. a catchy Youtube video. http:// www.youtube.com/watch?v=_peUxE_BKcU The global number has "What is fallen from 1.3 shocking in billion in 1990. India is this But one billion picture of people - 90% of someone them living in practicing open rural areas - defecation and "continue to in the other defecate in hand having a gutters, behind mobile phone," bushes or in said Maria open water Neira, director bodies, with no of Public Health dignity or at the WHO. privacy," the U.N. study said. Making the practice The practice is unacceptable still increasing in has worked in 26 countries in sub-Saharan Africa. Nigeria more than 80 countries, the U.N. says. The was the worst offender, with 39 million open goal is to eliminate the practice entirely by defecators in 2012 compared to 23 million in 2025. Poverty is no excuse, the study said, 1990. noting the role of cultural differences.
INDIA NO.1 In the Democratic Republic of Congo, 14% of Although the prevalence of open defecation is the population are open defecators. But where in decline, it is often common in fast-growing the head of the household is an Animist, the populations, so the total number of people figure is twice as high, at 30%. Among doing it is not falling so fast, or is even rising. households headed by Jehovah's Witnesses, it is only 9%. The country with the largest number of public defecators is India, which has 600 million. India's relatively "hands off" approach has long Page 25
Polio Oz News d from p23) Polio This Week
Source: Polio Global Eradication Initiative - as of Wednesday 21 May 2014
Wild Poliovirus (WPV) Cases
Total cases Year-to-date 2014 Year-to-date 2013 Total in 2013
Globally 82 34 416
- in endemic countries 73 32 160
- in non-endemic countries 9 2 256
Case Breakdown by Country
Year-to-date 2014 Year-to-date 2013 Date of most Countries Total in recent case WPV1 WPV3 W1W3 Total WPV1 WPV3 W1W3 Total 2013
Pakistan 66 66 8 8 93 01-May-14
Nigeria 3 3 22 22 53 19-Apr-14
Afghanistan 4 4 2 2 14 06-Apr-14 Equatorial 3 3 0 0 19-Mar-14 Guinea
Iraq 1 1 0 0 10-Feb-14
Cameroon 3 3 0 4 31-Jan-14
Syria 1 1 0 35 21-Jan-14
Ethiopia 1 1 0 9 05-Jan-14
Somalia 0 1 1 194 20-Dec-13
Kenya 0 1 1 14 14-Jul-13
Total 82 0 0 82 34 0 34 416 Total in endemic 73 0 0 73 32 0 32 160 countries Total out- 9 0 0 9 2 0 0 2 256 break
Data in WHO as of 21 May 2013 for 2013 data and 20 May 2014 for 2014 data