Polio still affecting the young

October is Polio Awareness Month, with Polio SA highlighting that while many think it a disease of the past, over 400,000 Australians have had polio at some stage and, with this year’s outbreak in Papua New Guinea, it has never been more important to vaccinate our children against this debilitating disease.

Polio Australia will be hosting two large national events in Adelaide in October, with interstate guests to descend on the state to raise awareness and funds at the annual ‘Walk With Me’ walk and four-day Health and Wellness Retreat.

Many Australians don’t remember the terrible impact that the poliovirus had, which initially presented as flu-like symptoms and went on to cause paralysis in 1 in 200 cases, with some children being sent away from their families and put into care homes for years at a time.

Download the full release

“Have you ever had Polio?” The key question to ask patients

400,000+ Australians have had Polio, however, the public and medical professionals often think of it as a disease of the past which could be leading to misdiagnosis.

Decades after the poliomyelitis epidemics in Australia, the aftermath of the disease is now becoming evident in our ageing ‘polio population’. An estimated 400,000 people may be experiencing the Late Effects of Polio (LEoP) or Post-Polio Syndrome (PPS). A younger population who have migrated to Australia also require management and support.

For older patients presenting in clinics with increasing muscle weakness, increasing or new pain or multifactorial fatigue and decline, Polio SA president Brett Howard advises health professionals to ask, ‘Have you ever had polio?’.

“It is common that those who had Polio when they were younger, like myself, have fought hard to overcome Polio and simply aren’t aware of the late effects of the disease. So, when weakness and pain return, it can be hard to face”, says Howard.

PPS tends to be more noticeable as people begin to age, says Dr Nigel Quadros, Senior Consultant, Rehabilitation Medicine at The Queen Elizabeth Hospital and a specialist in PPS.

“Having polio in the past may contribute significantly to multifactorial decline and fatigue that often presents among ageing patient populations. People who contracted Polio in Australia are now in their 60s at the youngest – and will hopefully enjoy a long life thanks to modern medicine. So they are going to have more problems related to the effects of Polio.”

Where PPS is suspected, a proper medical evaluation to identify and treat reversible causes of fatigue and weakness, such as diabetes, or thyroid disease is advised.

There are minimal studies showing any benefit of medications to treat fatigue and weakness in postpolio patients. The main advice is lifestyle modification – healthy diet, losing weight, and energy conservation. Adapting clinical practices to the suit post-polio body is essential to prolong daily functional ability.

“Doing tasks you are able to do, knowing your limits and having frequent breaks is really important for polio survivors because they were real go-getters – they had to prove as youngsters that they could keep up and to find that suddenly they can’t anymore can be difficult”, says Dr Quadros.

Allied and other Health Professionals supporting patients who have ever had polio can visit PolioSA.org.au/health-professionals to access clinical practice guidelines, and register for Polio Australia’s upcoming Clinical Practice Workshops.

Download the release

Hundreds turn out for free public information session

Hundreds turn out for free public information session ‘The Late Effects of Polio’, hosted by Polio Australia’s Clinical Health Educator, exercise physiologist Paul Cavendish, was held at Tea Tree Gully Library. As well as the expertise being shared during the presentations, many enjoyed the chance to meet with fellow members of the polio survivor community, exchange stories, and chat over a cup of tea.

The late effects of polio (LEoP) refers to the decline in function in later life by polio survivors, after a plateau period of improved function – sometimes of decades – that follows an acute episode of polio. Some survivors may be diagnosed with Post-Polio Syndrome (PPS) a neurological condition associated with significant decline in functional capacity.

More significantly compared to the general ageing population, polio survivors may experience a loss of motor units (polio survivors have fewer motor units available after their illness, so their bodies need to work harder to move); sarcopenia (a loss of muscle mass and function); reduced proprioception and coordination, creating a falls risk; and a decrease in respiration capacity (1.9% decrease per year for polio survivors, compared to 1.1% per year for the average population).

Pain, muscle weakness, post-exercise fatigue, cramps, joint pain, and heat and cold intolerance can also be experienced as late effects of polio. In addition, the revival of upsetting childhood memories relating to the disease, a sense of losing independence, and the prospect of returning to rehabilitation, can all have negative psychological impacts.

Compounding these factors is that some medical practitioners have limited understanding of LEoP, attributing these symptoms to simply ageing. Providing polio survivors with information about LEoP and the supports available to them within the medical system, and empowering them to share this knowledge with their medical team, was a key objective of this session.

Mr. Cavendish highlighted the benefits of learning to navigate the health system to identify potential avenues of support. “Seeking assistance can be challenging,” he said, “but medical professionals have knowledge and skills that can help.”

These avenues include:

• The National Disability Insurance Scheme (NDIS) – those under 65 years should register
• Aged care funding / My Aged Care – those over 65 years should register
• Private health insurance – ask your fund what is available
• GP Management Plans, including the Chronic Disease Management Plan and Mental Health Care Plan - funded by Medicare, these plans are coordinated by your GP so you can see other health professionals at a subsidised rate
• Rehabilitation physician interventions such as assessments of secondary medical conditions and management of conditions such as pain and fatigue in liaison with the GPs
• The Department of Veterans’ Affairs
• Orthotists who provide more specialised treatment than podiatrists
• Dietitians for healthy weight management - extra weight means extra force needed for mobility, which puts extra strain on muscles
• Speech pathologists for speech and swallowing difficulties
• Occupational therapists for strategies to manage fatigue, considering planning, pacing and prioritising what you do with your day, and practising good sleep hygiene
• Aids and equipment.

Pain management, respiratory issues, musculoskeletal health, and orthopaedic management (including anaesthetic sensitivities) are also common medical considerations for those living with LEoP that can be improved with the support of an informed medical team who are prepared to identify suitable new methods and strategies.

Attendees were encouraged to explore the Health Professionals Register, compiled by Polio Australia and accessible on its website, to locate health professionals who are experienced in and informed about treating polio survivors.

“Plan ahead and future-proof your life,” said Mr Cavendish, “even if you feel you don’t need this support now.”

Dr Nigel Quadros, Senior Medical Staff Specialist from the Department of Rehabilitation Medicine at the Queen Elizabeth Hospital, also presented during the session. He is currently undertaking a longitudinal research study, Understanding the ‘polio survivor’ and promoting healthy ageing, with his fellow principal investigators Dr Kandiah Umapathysivam (Dr Sivam) from the University of Adelaide, and Dr Anupam Datta Gupta from the QEH.

The study is non-invasive, measuring loss of muscle mass, strength and function of polio survivors aged over 65 years, on an annual basis. It is aimed at promoting understanding among the health professional community about the situation of polio survivors, and where necessary, develop models of care to assist polio survivors to age healthily.

This study will form the basis for the establishment a comprehensive registry of polio survivors, monitor their general health and medical status in a dedicated clinic to be established at The Queen Health Hospital.

Dr Quadros told the session that the key aspects of physical ageing experienced to greater extents by polio survivors compared to the general population, sarcopenia and frailty can be reduced by the right exercise plan, good nutrition, and falls prevention. Medication has been trialled but has not yet been proven effective.

To enquire about Dr Quadros’ study, please telephone (08) 8222 7322 or email. Attendees were invited to ask questions of the presenters. These covered topics as diverse as nondisclosure of polio survival status to medical professionals, fatigue after exercise, lack of symptoms of LEoP in later life, medications that are contraindicated for polio survivors, and negotiating with medical teams about the level and type of anaesthetic provided during surgery.

The session presented a valuable opportunity for polio survivors to come together and share experiences and information with each other and the presenters, in the hope of improved outcomes for those living with LEoP. “You are all resourceful, independent people – but please don’t underemphasise the situation,” Mr Cavendish concluded.

“Find out what supports are available to you.” Polio survivors are encouraged to join Polio SA, and direct their health professionals to the website to subscribe to updates about professional development workshops, clinical practice resources, and the latest research about polio: www.poliosa.org.au/health-professionals

Download Release

Age With Dignity: 400,000 Reasons To Attend Polio Australia's Free Post-Polio Workshops

The 12th of April, 2018 will mark the 63rd anniversary of the life changing Polio vaccine, first created by Jonas Salk on April 12, 1955. Known as one of the most prevalent public health problems in the world, Salk extended his polio research into finding a vaccine, and seven devoted years later the most elaborate vaccine trial in history was a success.

Whilst the global impact of this historic medical breakthrough stopped polio epidemics in their tracks, many people who overcame the disease are increasingly seeking answers from health professionals relating to new symptoms they are experiencing.

To help clinicians recognise and manage these symptoms, Polio Australia, with funding from the federal government, will be delivering a series of Clinical Practice Workshops facilitated by Clinical Health Educator, Paul Cavendish.

To complement the workshops for health professionals, Polio SA will also be hosting a free information session to polio survivors, presented by Cavendish, on the Late Effects of Polio, a condition that can occur often decades after overcoming the disease.

Years after the poliomyelitis epidemics in Australia, the aftermath of the disease is now becoming evident in our ageing ‘polio population’. There are an estimated 400,000 people who may be experiencing the Late Effects of Polio (LEoP) or Post-Polio Syndrome (PPS), often up to 50 years after the initial infection.

Polio Australia is providing free Clinical Practice Workshops for health professionals to identify common symptoms of LEoP and PPS and develop their understanding of the ongoing consequences across our ageing population.

Polio SA is inviting all individuals and families who have been impacted by polio, to attend Mr Cavendish’s FREE information sessions.

The FREE information session for polio survivors, on Saturday the 12th of May, will cover:

• The latest research regarding managing the Late Effects of Polio
• Education on what makes the Late Effects of Polio different from the ageing process
• Key information on how to work with your health professional
• Proven self-management strategies to help maintain function and independence
• An opportunity to ask questions and discuss your post-polio health

Featuring the latest research involving how to best manage the Late Effects of Polio, Cavendish is aiming to connect with and equip the polio community within Adelaide through his free information sessions.

“I am keen to share the findings of the work that I have been a part of since 2005 working in allied health and multidisciplinary clinics. The collective research that we will be presenting at the various workshops across Adelaide, aims to unpack the Late Effects of Polio and teach health practitioners how they can assist a polio survivor to maintain function and independence.”

“With Australia’s vast post-polio community, I believe it’s of the utmost importance to discuss what makes the late effects of polio different from the typical ageing process, and work with health professionals to ensure this is correctly managed. I think it is important as a professional community we do not expect or rely on Polio survivors to research and find out what to do for their condition due to the limited support and understanding they have received for many years. While I am delivering these workshops to health professionals, I will also be providing an overview to polio survivors and their families at Tee Tree Gully, Adelaide on the 12th of May on key information they can take away with them on working with their health professionals and self-managing their condition.”

Download the release

Clinical Practice Workshops Announced – Demystifying the Late Effects of Polio and Post-Polio Syndrome

It’s often thought of as a disease of the past, but more than 400,000 Australians who have ever had polio could be experiencing the Late Effects of Polio (LEoP) or Post-Polio Syndrome (PPS). Do you know how to recognise LEoP/PPS in your practice?

Decades after the last poliomyelitis epidemics in Australia, the aftermath of the disease is now becoming evident in our ageing ‘polio population’ who may present with increasing muscle weakness, increasing or new pain or multifactorial fatigue and decline. There is also a younger population who have migrated to Australia who require management and support.

There are many cross-overs in the treatment and management of other chronic diseases and LEoP/PPS, and there are also some very significant differences. If LEoP is not identified, the client can experience rapidly worsening symptoms due to inadvertently incorrect care.

During May, two Clinical Practice Workshops will be held in Adelaide by Polio Australia, to demystify Late Effects of Polio and Post-Polio Syndrome and present practical strategies to manage the symptoms.

For many LEoP/PPS clients, biomedical and pharmaceutical treatments have limited efficacy, and Polio survivors are turning to allied health practitioners to help them improve their quality of life.

General Practitioners, physiotherapists, occupational therapists, orthotists, exercise physiologists, nurses, podiatrists, speech pathologists, dietitians, social workers, case managers, and anyone interested in knowing more about the post-polio body are encouraged to attend. 

Download the release

We’re still here: Hope and help for Polio Survivors in SA

Now eradicated in the western world and most of the rest of the globe, Polio is often thought of as a disease of the past. But for the estimated 400,000+ Australians who have ever had Polio, the fight is far from over.

This month is Polio Awareness Month, and while the campaign to end polio continues worldwide, here in South Australia work is happening to create hope for those living with the late effects of Polio, or Post-Polio Syndrome (PPS).

Polio SA member Ron Blackwell contracted Paralytic Polio in 1948 at the age of 9. Living in a small South Australian country town, at that time Ron was the only person affected with the paralytic form of the disease.

“I was away from home [in Hospital] for twenty months and on my return it was almost like it hadn’t happened from the point of view of other people. I went back to school and my mother insisted on me wearing long trousers to cover the supports I wore. I played sports and did a lot of different activities, so it didn’t have the impact on me that I’d seen in others who contracted it younger, while their bodies were still developing – they were more extremely affected.”

Ron enjoyed what he describes as ‘pretty decent health’ up until his mid-40s, when he started to experience difficulties related to his past Polio infection. “The difficulties I started having resulted in Depression – that really stemmed from frustration, suddenly not being able to do what you think you should be able to do”, says Ron.

Now in his late 70s, Ron’s biggest challenge is fatigue. “It’s a bit of a compromise really, as you need to exercise to keep your muscles in good nick. I am involved in a lot of activities but have to be wary of the fact that with the fatigue present I can easily overdo it.”

Weakness and fatigue, and increasing or new pain in either polio-affected or non-polio affected muscles are key features of Post-Polio Syndrome (PPS). PPS can occur at any time post-polio, but tends to be more noticeable as people begin to age, says Dr Nigel Quadros, Senior Consultant, Rehabilitation Medicine at The Queen Elizabeth Hospital and a specialist in PPS.

“It’s vital that people who think they may be experiencing PPS get a proper medical evaluation to identify and treat reversible causes of fatigue and weakness, such as diabetes, or thyroid disease”, says Dr Quadros.

The first step is to go to your GP and discuss your problems. There are specialised approaches to treating Post-Polio, and GPs and other health professionals treating post-polio patients can access clinical guidelines available online from Polio Australia”.

The main advice: following a healthy diet, losing weight, and practising energy conservation - doing tasks you are able to do, knowing your limits and having frequent breaks.

“Many polio survivors were real go-getters – they had to prove as youngsters that they could keep up, and to find that suddenly they can’t anymore can be difficult”, says Dr Quadros.

“It’s important for those around them to understand their limitations and provide them with support and understanding.”

Polio SA operates a support group providing information and practical support – including low cost physio and hydrotherapy - for people experiencing the late effects of Polio.

Yen Tran, 57, contracted Polio in Vietnam c.1960, when she was aged just 9 months. “Polio has caused problems for me my whole life… often people who contracted Polio overseas were affected when very young. We just had to get on with our lives”, says Ms Tran.

“As I’m getting older my muscles are getting weaker so I looked for help from the physio, and they suggested I join Polio SA.

“It’s good to know that around you there are people with similar problems. There’s a network, and we get information from professionals about how to manage our condition better, and conserve your energy to be able to do the things that are important to you rather than let the condition run your life”.

Through Polio SA, Yen and Ron stay in touch with the latest research into PPS, such as the study currently being planned by a team from the University of Adelaide’s School of Medicine’s GTRAC (Geriatrics) centre and the Queen Elizabeth Hospital. This non-invasive study has recruited 30 participants and is seeking further volunteers.

“As we age, everyone experiences a reduction in physical strength and increasing frailty – known as ‘sarcopenia’. It’s a normal part of ageing, and in most people its progression can be delayed with a healthy diet and exercise.” says principal investigator, Dr Kandiah Umapathysivam (Sivam).

“But where people have an existing neurological disability like Post-Polio Syndrome, their capacity to exercise is reduced.

“Our study aims to better understand how sarcopenia affects people with Post-Polio, compared with the ageing process in someone without post-polio. This is the first step towards developing a screening tool, and identifying which types of exercise, dietary changes and other wellbeing interventions work best to keep people with PPS active and healthy for longer”.

For now, there are a number of steps people who have ever had Polio can take to keep fighting the disease and improve their quality of life.

“If you’ve ever had Polio the first thing to do is visit www.poliosa.org.au and join Polio SA”, says Brett Howard, President of Polio SA.

“Registering is free, and will keep you up to date with the latest information, Polio research and news by email. There’s no pressure to come to meetings or events – unless you want to.”

Membership costs $15 per year, and includes access to an hour of free hydrotherapy every week, up to six free massage vouchers each year, and a quarterly printed newsletter. 

Polio SA encourages everyone who has ever had Polio, whether contracted in Australia or Overseas, to be counted on the Australian Polio Register.

Managed by Polio Australia, the register numbers 2,857 people of the estimated 400,000+ people in Australia who’ve ever had Polio.

Polio survivors can request to be added when joining Polio SA, or register directly with Polio Australia at http://www.australianpolioregister.org.au/register-today/

“It’s important for all people who’ve ever had Polio to be counted”, says Brett.

“After the vaccines were introduced, many medical records about Polio in Australia were destroyed – it was assumed it was all over”.

“But we’re still here.”

Download the release