Clinical Practice Workshops for Health Professionals

Help your health professionals help you!

Polio Australia are hosting clinical workshops especially for health professional to learn more about the Late Effects of Polio and strategies to treat the symptoms. Suitable for:

• General Practitioners

• Physiotherapists

• Occupational therapists

• Orthotists

• Exercise physiologists

• Nurses

• Podiatrists

• Speech pathologists

• Social workers

• Case managers

...and anyone else interested in knowing more about the Post-Polio body.

Download the flyer and give it to your health professionals.

Health professionals can book here

Late Effects of Polio Information Session

What are the Late Effects of Polio (LEOP)?

The LEOP (including Post-Polio Syndrome) can cause symptoms such as fatigue, new or increased muscle weakness, pain, sleep problems and difficulty with breathing or swallowing.

Hear from key professionals specifically addressing the needs of Polio Survivors:

• How is medical management necessary?

• What should I expect from an Occupational Therapist or Physiotherapist?

• How much exercise or activity is safe?

• What is the National Disability Insurance Scheme (NDIS)?

• How does My Aged Care work for me?

Date & Time

Saturday 6th October 2018 1:30pm - 3:30pm

Venue

Margaret Bond Room 2, Glenunga Hub, 70 Conyngham Street, Glenunga

Register

Online: www.bit.ly/InfoSessionAdelaide0610

Phone: 0466 719 013 or email: paul@polioaustralia.org.au

Presented by Polio Australia

Spring 2018 Newsletter

From the President

I am pleased that Spring is just around the corner the cold of winter has been bone chilling for me this year.

The AGM for Polio SA was attended by over 25 members and friends who saw the Committee reappointed with one change. Mr. Nik Surikov did not nominate for another year, but Jo Gordon has nominated and will join the Committee. Thank you very much Jo. I would like to take this opportunity to thank Nik for his enthusiasm in promoting Polio SA; in particular increasing awareness of post-polio syndrome with politicians.

At the AGM we were fortunate enough for Dr. Nigel Quadros to update on his and Dr. Sivam’s Sarcopenia Study. Nigel was then kind enough to draw the names of the two members who won tickets to Polio Australia’s Health and Wellness Retreat. Congratulations to both Margaret Leonello and Kim Duong, a new member. I look forward to seeing you both as well as other members at the Stamford Grand, Glenelg in October. We then retired for “afternoon tea”, after which everyone enjoyed for the screening of “Breathe”. All in all a good day for our members who attended.

There may be an opportunity for a second hydrotherapy session to be held at the pool at the Repat Hospital, Daw Park. For this to happen Polio SA needs to have a definite assurance from members that they would attend these sessions. If you wish to attend the hydrotherapy session please email or leave a voicemail on 0466 893 402 before October15th. The committee will then discuss the feasibility at the next meeting and will advise you of the outcome.

Paul Cavendish will be hosting another information session for polio survivors on the 6th October at Glenunga Hub. This is new information, so whether you attended the May information session or not you will find attending invaluable. There are only 60 places available so registration is essential, full details follow on page 2.

The 10-year anniversary “Walk With Me” event will be on Thursday 11th October at 3:00pm. The walk will begin from the front of the Stamford Grand Hotel in Glenelg and the group will walk along with esplanade. Please come along and join in or feel free to sponsor a participant.

Download the newsletter

Brett Howard, President, Polio SA
bihoward@bigpond.com | 0403 339 814

Flu, Fatigue and Post-Polio Syndrome Dr. William DeMayo, MD - DeMayo’s Q & A Clinic

This article was published online in http://www.papolionetwork.org/demayos-q--a-clinic.html

QUESTION
I was diagnosed with the flu in early February. I had extreme fatigue for a full month. Yesterday, I spent a full day in the E.R...Nothing except dehydration showed up on tests.  Could this be post-polio syndrome fatigue, along with fatigue from flu and a secondary infection?   How long will I have to deal with this ?  

ANSWER 
To provide a specific clinical answer to the above, much further information would be needed, including information regarding age, prior diagnosis of post-polio syndrome, level of disability, medications, sleep patterns, and other diagnoses.  The question does, however, provide the opportunity to talk about the issue of fatigue and post-polio syndrome. 
First, is important once again to remember that the diagnosis of post-polio syndrome is a diagnosis of exclusion. Therefore, all other causes of symptoms such as fatigue, would need to be excluded before concluding the cause is post-polio syndrome. It is interesting that many patients and clinicians jump to the conclusion that post-polio syndrome is the cause of fatigue, when in fact this is one of the few causes of fatigue that has no specific treatment. As a rehabilitation physician, I am always focused on issues that we can do something about and pay less attention to the things that are not under our control. Therefore, I will use this opportunity to focus on some of the many causes of fatigue that are treatable.  
Secondly, the word “fatigue” can be used in a variety of contexts.  One can complain of physical fatigue, including a sense of exhaustion or feeling physically drained.  Additionally, emotional fatigue can occur over time due to a variety of stressors and contribute to a feeling of being weary/worn out.  Some individuals can also experience cognitive fatigue as the brain simply does not process information as efficiently over time. For purposes of this article we will lump these together, but when reporting symptoms to a clinician, it is sometimes important to be very specific.
Here is a partial list of some of the most common causes of fatigue:
Insomnia (lack of restorative sleep). Lack of appropriate duration OR quality of sleep can lead to somnolence (an intense feeling of sleepiness).

Chronic lack of restorative sleep can be a major contribution to physical, emotional and cognitive fatigue. Poor sleep habits, sleep apnea, restless leg syndrome, medications, pain, and other factors can compound this problem.
Depression/anxiety/stress These common causes of fatigue are often overlooked or unaddressed.

Medications Always check with your pharmacist regarding side effects of medications you are taking.

Over activity or ”Overdoing it” Does this sound like anyone you know? This is certainly not an uncommon issue in the polio population.

Under activity and deconditioning  This is a problem that is not unusual for individuals who adhere strongly to the “conserve to preserve” * mentality.  At the same time, it is also a problem for many individuals who regularly “overdo it” causing so much pain that they then need to “rest” for prolonged periods of time.

• Medical issues

• Infection - either bacterial or viral

• Dehydration

• Endocrine problems
  o Thyroid disease
  o Adrenal disease
  o Diabetes
  o Other

• Anemia
  o Due to chronic blood loss/iron deficiency
  o B12 deficiency, kidney disease and other causes

• Cardiac disease and congestive heart failure

• Pulmonary diseases

• Chronic Fatigue Syndrome

• Neurologic disease and autonomic dysfunction

• Other

• Poor nutrition

• Chronic pain

Management of fatigue often requires more than one approach since the above contributing factors rarely occur in isolation.  For example, chronic pain can contribute to sleep problems and depression as well as poor nutrition. Subsequently these can worsen fatigue.   
Some of the interventions most helpful for fatigue, that I would recommend for you to talk to your physician about include the following;

• Appropriate testing and management of underlying medical conditions

• Appropriate goalsetting and pacing

• Use of adaptive equipment, braces, mobility aids, or wheelchairs/scooters (when appropriate)

• Behavioural management and counselling

• Physical Therapy and Occupational Therapy

• Energy conservation techniques

• Appropriate home exercise program

• Aerobic

• Strengthening

• Flexibility

• Yoga or Tai Chi (preferably with an instructor familiar with disabilities)

• Meditation or scripture

• Medication changes

• To remove medications that might be causing fatigue

• Consider talking with your physician about any medication or supplements that might reduce fatigue

A pessimist might see the interrelationship of multiple causes of fatigue as being problematic. At the same time optimists, including myself, will focus on the fact that any of the above interventions will have a “spill over effect” into other areas.  
Addressing medical problems can significantly increase exercise tolerance and both lead to less fatigue over time.  Physical exercise (as appropriate for your limitations), professional counsel and meditation can all have a profound effect on mood and emotional fatigue.  As one factor improves there is a “snowball effect” on other areas.   
In summary, I greatly appreciate the above question as a lead-in to even better questions - “What would be causing fatigue other than post-polio syndrome?” and “Where can we intervene to eventually improve disability?”
 

Did the Polio Vaccine Cause Cancer? By Vanessa Schipani

This article was originally posted on April, 2018 on https://www.factcheck.org/2018/04/did-the-polio-vaccine-cause-cancer/

FULL QUESTION

Were people infected with cancer through the polio vaccine?

FULL ANSWER

Many of our readers have asked us whether people have developed cancer because they received the polio vaccine. Facebook users also have flagged stories on this topic as potentially false. The bottom line: It’s highly unlikely that the lots of polio vaccine contaminated in the ‘50s and ‘60s have caused anyone to develop cancer.

Polio, or poliomyelitis, is a disease caused by the poliovirus. About 1 in 200 people who contract the virus develop the disease, which involves loss of movement in the limbs, explains the Centers for Disease Control and Prevention.

Nearly 3 out of 4 people who catch the virus have no symptoms. About 1 in 4 experience less severe symptoms, such as a sore throat, tiredness, nausea or fever. In rare cases, the virus can cause death. Immobility can also occur decades after a person seems to recover from the infection, says the CDC. Experts classify this as an illness different from polio, namely post-polio syndrome. Between 25 percent and 40 percent of “polio survivors” develop this syndrome.

In 1954 — the year before the polio vaccine became widely available — the U.S. saw more than 18,000 reported cases of paralytic polio and more than 1,000 deaths due to the virus, according to the CDC. By 1964, those numbers had dropped to 106 and 17, respectively.

Because of the vaccine, the U.S. has been virtually “polio-free” for 30 years, says the CDC, though “the disease still occurs in other parts of the world.” The agency still recommends that children get four doses of the polio vaccine, each of which increases immunity to the virus. In 2016, 93.7 percent of children under 3 years old had received at least three doses of the vaccine. The CDC says children should get the fourth dose between the ages of 4 and 6.

To develop the vaccine, the epidemiologist and physician Jonas Salk, who died in 1995, grew the poliovirus in a culture (think, petri dish) of monkey kidney cells. He then used a chemical called formalin to kill the virus, rendering it unable to cause polio. When this dead virus is introduced into people’s bodies, it teaches their immune systems how to build up defenses against the virus. In this way, the polio vaccine, like other vaccines, shows the body how to develop the tools it needs to fight off the live virus, if exposed to it.

But in the early years of the vaccine’s administration, two unexpected issues occurred. In 1955, some lots of the vaccine produced by one company actually contained live poliovirus, explains the CDC. This led to more than 250 cases of the disease polio and 10 deaths.

The second incident pertains to our readers’ questions. In 1960, scientists discovered that some of the monkey kidney cells used to make the polio vaccines were contaminated with simian virus 40. For monkeys, this virus is harmless, producing no symptoms. But in high doses, SV40 can cause cancer in rodents.

Starting in 1961, authorities required new lots of polio vaccines to be free of SV40. Still, many vaccines produced prior to this year weren’t recalled. Altogether, scientists estimate that around 100 million U.S. residents received one or more doses of the polio vaccine between 1954 and 1963, including those who were vaccinated during a clinical trial in 1954.

To be clear, not all of the vaccines given to people during this period were contaminated with SV40. Out of those that were, the formalin used to kill the poliovirus killed all or most of the SV40 as well, explained Keerti Shah, now a professor emeritus of molecular microbiology and immunology at Johns Hopkins University, in a 2006 review. Published in the International Journal of Cancer, the review adds that the number of people truly at risk — those exposed to live SV40 remains unknown.

Research on SV40

Since the 1960s, scientists have continued to research the relationship between the polio virus, SV40 and cancer.

In 2002, a committee at the National Academies’ Institute of Medicine (now the National Academy of Medicine) reviewed the available research on the subject and found “that the evidence was inadequate to conclude whether or not the contaminated polio vaccine caused cancer.” Why did the committee make that decision?

Studies had consistently shown that people who received the polio vaccine in the 1950s and 1960s had no increased risk of cancer, but these studies had “substantial limitations,” the committee said. For example, these studies were “ecologic,” the report explained. Ecologic studies look at groups — in this case, people who received the polio vaccine in the 1950s and 1960s — not individuals.

If the polio vaccine contaminated with SV40 did cause cancer, scientists would expect to see an increased risk of cancer in the population of people who received the vaccine. But just because they didn’t find this effect in the group doesn’t rule out the possibility that some select individuals did develop cancer because of the vaccine.

Given the inconclusiveness of this research, the committee looked at other lines of evidence to elucidate whether SV40 can cause cancer in humans. For example, the committee found that studies have shown that the virus can cause cancer in rodents. But just because a virus causes cancer in lab rodents doesn’t mean it can cause cancer in humans. How viruses affect one species is not necessarily how they affect others.

The committee also found that studies have shown that SV40 can “transform” human cells in a culture — that is, cells in a petri dish, not in the body. This means the virus can change genetic material within human cells, a process that’s necessary for a person to develop cancer from the virus. But this is still not enough evidence to definitively say SV40 causes cancer in humans — how a virus affects cells outside of the body may not be how it affects cells within the human body.

The report also pointed to some studies that have found the genetic material of SV40 within human tumors. But again, the “detection of SV40 in tumors does not, by itself, demonstrate a causal relationship,” the report explained. “SV40 could be a passenger virus, infecting the cells but causing no pathology.”

The National Academies’ report concluded that — even if researchers do uncover conclusive evidence for a causal link between the polio vaccine and cancer in the future — evidence accumulated up to 2002 is “sufficiently robust to suggest that the relative contribution of SV40 to overall risk would have to be small.”

Research published since 2002 has only swayed the scientific pendulum toward a lack of a causal link, says Shah at Johns Hopkins. In his 2006 review of the literature, Shah concluded that research published since the 2002 committee’s report “does not support the notion that SV40 contributed to the development of human cancers.”

For one, studies that found the genetic material of SV40 in human tumors were likely “false positives,” he wrote in his paper published in the International Journal of Cancer. Shah also pointed out that four additional studies published since 2002 found no link between those who may have been exposed to SV40 via the polio vaccine and a higher prevalence of cancer.

Like the 2002 report, Shah said that “these data by themselves do not disprove the role of SV40 in human cancer because the exposure to SV40 by the vaccine is not known at the level of the individual.” But given this more recent research, it’s “very likely that SV40” is “not linked to any human cancer,” he concluded.

As we pointed out last July when we wrote about a controversial European Union court decision about vaccines, it’s difficult, if not impossible, for scientists to definitively rule out that a vaccine causes a disease. We cited a 2012 report by the Institute of Medicine at the National Academies on vaccine safety to support that point. The report states that it’s “virtually impossible to prove the absence of a relationship with the same certainty that is possible in establishing the presence of one.” Why? Because “studies may not rule out the possibility that the reaction is caused by vaccine in a subset of individuals,” the report explains.

This argument also applies to the case of the polio vaccine and cancer — evidence suggests the contaminated vaccine in the 1950s and 1960s doesn’t cause cancer, but it’s difficult for scientists to rule out the possibility that it may have done so in a handful of people.

Bruno Bytes April, 2018 Dr. Richard L. Bruno, HD, PhD www.papolionetwork.org

A Polio Survivor Story by Julian Swinstead

I was born June 1949 and contracted polio when I was about 2 years old and was sent to Escourt House for around 2-3 yrs.

My parents were poor and had five boys. They could only come and see me occasionally on weekends. When they did, Dad unscrewed a door from home and tied it to the roof of the Volkswagen Beetle. They would come and get me and strap me to the door on the roof (outside) for an outing. Later they got a bigger car and could slide me through the back windows (on a board) where my brothers would torment me.

I cannot remember anything much about that time. I was in plaster from the hips down, or so I have been told. Matron Macdonald at Escourt House told my parents she was experimenting with a new technique for handling polio which she had heard of from America. It involved NEVER allowing the affected limbs to be free of restraint — such as keeping them in plaster or calipers, especially overnight. NEVER allowing the bones to deform. Apparently my Dad said I was in great pain continually, and I do remember being put in the big bathroom at Escourt House (the empty bath) with the door shut, because I screamed so much. I do remember that that was very scary. But boy it must have worked. After leaving Escourt House I then wore callipers and attended the Adelaide Children’s Hospital for several years for therapy.

I apparently recovered despite a deformed left calf muscle and a leg that was measured as half an inch or so shorter than the other one. I managed to play A grade SANFL football for Central Districts and football in Melbourne for Port Melbourne. I was also active in many other sports including running, tennis, swimming etc. When I finished football (at age 32) I took up martial arts and have done that (seriously) for 30 odd years, as well as tennis, cycling, swimming and stand up paddling.

I have recently returned to Adelaide to live after 25 years away (Darwin). I had a period where I simply would run out of “juice” and my legs were sore. That was around 10 years ago. I had to pretty much give up karate kicks above hip height. However I have since decided “stuff it” and have resumed serious training. I have had a total knee replacement, ironically on my other leg. That also set me back as I had all sorts of warnings about not doing too much.

I now walk at a very fast pace around five kilometres at least every second day, interspersing that along the walk with challenging exercises, including push-ups, chin ups, squats, rowing and cycling; and stretching routines. I walk on unpaved areas wherever possible to exercise my ankles etc. and thick grass to force me to lift my legs. While my left calf muscle remains deformed (seriously under developed) I am feeling more and more comfortable in my fitness. I am also playing tennis again.

My orthopaedic guy says the other knee is going to have to be replaced, but at present it is fine.

That’s my story. Hope it is of interest to someone. If, for the purposes of research, you needed more information, my older brothers know much more about that time than I do. Although I have not spoken to them regarding this note, I am sure they would not mind speaking about it.
 

Ground breaking research into the Late Effects of Polio continues in South Australia

Following the success of the Sarcopenia Project last year Dr Nigel Quadros and his associate Dr Kandiah Umapathysivam (Sivam) are recruiting people to participate in the second phase of the project. For more information please contact Dr Sivam phone: 0434991583 or email: Kandiah.umapathysivam@adelaide.edu.au

Sarcopenia and polio survivors

Sarcopenia is characterised by progressive and generalised loss of skeletal muscle mass and strength or function as we age.

Due to nerve cell loss after acute polio viral infection, it is likely that polio survivors live with sarcopenia at an earlier stage in life compared to the normal ageing population. Immobility-related underactivity is also likely to be a major contributor to sarcopenia in polio survivors.  While there is no reliable way to differentiate age-related sarcopenia from underactivity-related sarcopenia, both contribute to weakness, fatigue and loss of function.  This translates in daily life to having difficulty or being unable to do many simple activities such as walking, stair climbing, house hold chores, etc, a common phenomenon seen in the ageing polio survivor.  Previously, this functional decline has been called post-polio syndrome, however, in recent times it is referred as the late effects of poliomyelitis (LEOP).

The complications of LEOP and its relationship with sarcopenia need to be explored in polio survivors. The dilemma being, the norm for post-polio has been to advice against exercise but the most effective therapy thus far for sarcopenia is exercise.

About the research project

The research aims to improve the lives of people who experience LEOP by exploring if sarcopenia has a significant role.

By measuring muscle mass, strength and function the research aims to determine if these factors contribute to LEOP, in addition to the natural ageing process.    As well as reviewing current methods for management of sarcopenia such as exercise and nutrition to ensure healthy ageing and the best possible quality of life.

How it will help polio survivors

Developing methods to measuring sarcopenia in polio survivors can lead to develop methods to treat it.  The research will enable Rehabilitation Medicine Physicians in conjunction with your General Medical Practitioner to help provide holistic care for polio survivors in three ways:

Liaison with general practitioners, providing them with more information on LEoP and post-polio syndrome as well as advice on pain management, orthotic devices, exercise therapy etc.
Liaison with allied health practitioners with an interest in LEOP to provide specifically trained physiotherapist, occupational therapist, dieticians, psychologist, orthotists to devise individualised programs catering to the specific needs of the polio survivor.
Provide group therapy programs at private and public rehabilitation centres in SA.

Principal Investigators:

Dr Nigel Quadros, Senior Medical Staff specialist, Department of Rehabilitation Medicine, The Queen Elizabeth Hospital Phone: 82227322 email: nigel.quadros@sa.gov.au

Dr Kandiah (Sivam) Umapathysivam, Senior Lecturer University of Adelaide Phone: 0434991583 email: Kandiah.umapathysivam@adelaide.edu.au

Associate Professor Dr Solomon Yu, Clinical Deputy Director, Aged & Extended Care Services (AECS),  The Queen Elizabeth Hospital

Associate Investigators:

Dr Anupam Datta Gupta, Senior Medical Staff Specialist Department of Rehabilitation Medicine, The Queen Elizabeth Hospital

Professor Renuka Visvanathan Director, Aged & Extended Care Services, The Queen Elizabeth Hospital.

---

Winter Newsletter 2018

Wow, what a great turn-out at the Late Effect of Polio (LEoP) Information
Session at the Tea Tree Gully City Library. There were over 120 members,
friends and most importantly new members in the meeting; listening to Paul
Cavendish tell us all about our life with the LEoP.
Paul was able to cover a very broad range of subjects, at least some of
which affect all of us Post Polios. Discussing how ageing and LEoP can be
a very debilitating combination, but how with help and information from Polio
Australia and Polio SA improvements in lifestyle are possible. All in all, a very
successful afternoon. I must extend my gratitude to all Committee Members
of Polio SA for conducting this information session in a professional way and
apologise for my lack of attendance, thank you all.
While speaking about successful functions I would like to remind you all that
the Polio Australia Wellness Retreat will be held from the 11th-14th October
2018 in the Stamford Grand Hotel in Glenelg. As part of the program a “Walk
With Me” event will be held on Thursday 11th October at 3:00pm and finish at
approximately 5:00pm, we will be walking along the Glenelg Foreshore. We
will be looking for sponsors and walkers to take part in this event, if you are
interested please contact me. Every little bit you can do will help make this
another successful occasion for Polio Survivors in South Australia.

Download the full newsletter

Polio Health and Wellness Retreat 2018 – Expressions of Interest

Polio Australia will once again be facilitating its 4 day / 3 night Polio Health and Wellness Retreat for polio survivors and their partners/family members from Thursday 11 to Sunday 14 October, 2018 in beautiful Glenelg, South Australia. The holistic ‘Body / Mind / Spirit’ theme will continue and may include sessions such as:

• Interactive group sessions and one-to-one consultation opportunities with a variety of allied health professionals

• Hydrotherapy and exercise options

• Latest orthotics, aids and equipment displays

• Seated Yoga and Meditation Sessions

• Activities To Keep The Mind Active

• Creative Workshops

See details of previous retreats at www.polioaustralia.org.au/retreat-2017/

If you are interested in the event please email office@polioaustralia.org.au with your name, address and telephone number.

Approx. cost of registration fees for 3 nights accommodation, all meals and most activities $450 pp double and twin / $500 single.  Mix of ocean-view and mountain-view rooms available. All fees yet to be confirmed.

Walk With Me Fundraiser October 2018

There are an estimated 400,000 polio survivors in Australia. Many are now experiencing the Late Effects of Polio (LEoP) and struggling to access appropriate health care and support. Polio Austrlaia’s “Walk With Me” event aims to raise awareness about the LEoP and fundraising efforts will allow us to continue to support polio survivors and provide education to health professionals.

WHEN: Thursday, 11th October 2018

ASSEMBLE: 3:00pm – Between Moseley Square and Glenelg Pier

WALK: 3.30 pm – A relaxed 1km walk or wheel in the sunshine, along the beautiful Glenelg beach esplanade.

DONATE HERE.  Whether or not you are walking on the day, please donate (donations for this event will be accepted until 31 December 2018).