Walk With Me 2017

Peter Wierenga (Polio SA’s Treasurer) and Brett Howard (Polio SA’s President) participated in the “Walk With Me” event in Canberra on Thursday 30th November 2017. So far we’ve raised almost five hundred dollars, and it still not too late to support us!

For those of you on the internet please go to the Polio Australia website and make a small donation to the “Walk With Peter and Brett”. Donations are accepted until the end of December, with proceeds to Polio Australia.

Summer Newsletter 2017

On behalf of the Committee of Polio SA I would like to wish you all “The
Compliments of the Season”. Another year has managed to slip past!
The great news that we heard recently: the Research Team conducting the
Sarcopenia Project has received funding to further their work. This should lead
to more knowledge about how muscle weakness and fatigue due to ageing
affects post-polio people, and perhaps some improvement in management on
a personal basis.
Earlier this month I was contacted by Paul Cavendish who runs the Clinical
Practice Workshops for Polio Australia.
The Clinical Practice Workshops are aimed at allied and other health
practitioners such as: GPs, physiotherapists, occupational therapists,
orthotists, exercise physiologists, nurses, podiatrists, speech pathologists,
dietitians, social workers, case managers, and anyone else who is interested
in knowing more about the post-polio body.
Paul wanted some input as to where to conduct workshops in rural South
Australia, and I have suggested Port Pirie, Port Lincoln, The Riverland and
Mount Gambier.
Having a “local” present to give participants some “first hand” insight into the
problems of the Late Effects of Polio is highly valuable. If you live in any of
these areas, and would be interested in assisting Paul at a Clinical Practice
Workshop, please contact the Polio SA office at 302 South Road Hilton 5033
or email poliosa.office@gmail.com and we will pass on your details.
Peter Wierenga (Polio SA’s Treasurer) and I will be participating in the “Walk
With Me” event in Canberra on Thursday 30th November 2017. So far we’ve
raised a few hundred dollars, and it still not too late to support us! For those of
you on the internet please go to the Polio Australia website and make a small
donation to the “Walk With Peter and Brett”. Donations are accepted until the
end of December, with proceeds to Polio Australia.
We’ll share photos of our trip in the next issue.

Download the full newsletter

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

How to exercise if you are living with post-polio syndrome

Source: This is an excerpt from an article by Stephen Pate, originally published by the NJN Network on 26 March 2017.

If you have post-polio syndrome, it’s vital to exercise moderately every second day to keep the muscles we have and avoid obesity, diabetes, stroke and heart disease.

Exercise also helps us accomplish more of those activities of daily living and can improve how we feel.

Why exercise?

While it seems obvious, many of us with post-polio syndrome face enough weakness, fatigue and pain every day to make exercise seem impossible. We’ve tried exercise before and many develop an attitude of learned helplessness.

Thus, we rely more and more on assistive aids like wheelchairs and scooters. Lack of physical activity contributes to weight gain, which makes things worse and we become even more deconditioned physically. It’s a negative spiral we need to fight against.

I’ll try to give you some practical suggestions that have worked for me, along with some that haven’t. And I’ll outline how I did recover some ability with the NuStep exercise machine. As a precaution, I waited until I had 2 years of experience with the NuStep before recommending it, notwithstanding most hospitals use it as standard rehab equipment.

Exercise is one of the standard post-polio syndrome treatments, along with rest, diet, energy conservation, environment adaptation. It’s also of the hardest things to do.

The Mayo Clinic sums up the exercise prescription like this:

“Physical therapy. Your doctor or therapist may prescribe exercises for you that strengthen your muscles without you experiencing muscle fatigue. These usually include less strenuous activities, such as swimming or water aerobics, that you perform every other day at a relaxed pace.

Exercising to maintain fitness is important, but be cautious in your exercise routine and daily activities. Avoid overusing your muscles and joints and attempting to exercise beyond the point of pain or fatigue. Otherwise you may need significant rest to regain your strength.”

So, the gist is get some exercise – maybe swimming or water aerobics – every second day, but don’t do too much or you’ll be in trouble.

I’ve had post-polio syndrome for 18 years and exercise is the bane of my existence. How do I get enough exercise without making things worse?

I used to hate exercise as part of the post-polio prescription. How can I exercise if I can’t walk, or walk very far? That question is part of the learned helplessness that can go with any disability.

Some medical professionals look at us on crutches or in wheelchairs and tell us to go easy. So, we assume the part of being helpless about our physical health. That’s deadly.

There is plenty of published evidence to show people with post-polio need and thrive on regular and moderate aerobic exercise. Strength training exercises for post-polio are not recommended as it may damage weakened muscles.

The principles of safe and effective exercise for people with post-polio syndrome are:

• Start gradually

• Moderate level aerobics

• At a moderate pace

• Every second day

• Supervision by a registered physiotherapist or kinesiologist with training and experience about post-polio syndrome

• Be careful

• Start gradually

If you haven’t been exercising, start gradually. At one clinic, they wanted me to do 30 minutes on day one. Luckily, I was so weak I couldn’t comply. Everyone has a different starting point and capacity.

My physiatrist recommended exercising for three days in a row about 5–7 minutes, or until I felt tired. He said I would like feel tired sooner as each day passed, which was true. Then he said to average the time for three days and use the average as the time for each session.

He suggested adding one minute every week until I was at 30 minutes every second day. That seemed to work but later I developed problems with pain and added fatigue. A more cautious suggestion is to add one minute of exercise every 2 to 3 weeks. It’s not a race.

Moderate level

If an exercise machine has 10 levels of resistance, moderate is five. When you exercise with people we seeing sweating to stay fit at health spas and workout joints, they don’t have post-polio.

Trying to decide what is ‘moderate’ is the problem. Each person has different capabilities. Studies on what level people with post-polio syndrome can handle are generally short-term and inadequate and may not be a good guide for you.

Moderate pace

Again, it’s not a race and a moderate pace is all you need. For example, I’ve seen people do 170 steps per minute on the NuStep. I tried that and my physiotherapist slowed me down to 115 steps per minute at the most. Each type of exercise will have a moderate cadence that you can use. Start slow in any event, about one third of the maximum you expect to keep up. For 115 my starting point was 40 steps per minute. Each person will have a different moderate pace set by the physiotherapist.

Exercise every second day

Whatever exercise works for you, the recommendation is to exercise every second day, resting in between. Post-polio syndrome muscles and nerves need a rest. The exercise should be moderate, not strenuous. You don’t want to be sweating or out of breath at the end of your session, nor do you want muscle pain.

Getting exhausted is not recommended. Exercising past the point of pain can harm already weakened muscles. All the popular forms of exercise can damage post-polio syndrome nerves and muscles.

The every second day advice is not always recommended by professionals who are not experienced with post-polio syndrome patients. When the sports physiotherapist told me to exercise five times a week, I had to reply that post-polio syndrome patients are advised to take a day off between exercises. She looked it up in her book and agreed. (ACSM’s Exercise Management for Persons with Chronic Diseases and Disabilities)

I recommend you try to find a regular exercise that you can do at home during good and bad weather. Exercise clubs are great for some people but you may find the effort of going there, exercising and coming home is more than you can handle every second day.

Supervised by a physiotherapist or kinesiologist

These suggestions should be taken under the care and control of a physiotherapist who understands post-polio syndrome. Don’t do it on your own. If your physiotherapist is vague about post-polio syndrome, ask them to research it before making recommendations.

Post-polio syndrome exercise is not training for sports, the Olympics or muscle strengthening. Walk or wheelchair away from sports physiotherapists. They likely don’t understand post-polio and can get you in trouble. I did work with one who looked it up in the book of sports physiotherapy and learned how we are different. Before that she kept pushing me to do more.

Be careful

In the often-cited Kriz study, 10 post-polio syndrome patients exercised for 16-weeks at an intensity 70%-75% of potential heart rate. The post-polio syndrome patients kept the same intensity as the control group who were not disabled. No long-term pain was recorded. The results of the study were that 10 people had improved cardiovascular health.

What the study did not decide was if they could keep up that level of exertion over the long term. My experience has been that post-polio patients should be very cautious. I’ve had two instances where guided physiotherapy caused me nerve and muscle damage that took 3-6 months to recover. The first time I noticed pain was nine months after starting 30 minutes every second day. It can be discouraging to stop exercising because muscles are sore, but that can happen.

Types of exercise for post-polio syndrome

I’ve tried several types of exercise and rate them from most to least effective:
1. NuStep
2. Walking
3. Hand cycle
4. Swimming or water aerobics

NuStep

The NuStep is a recumbent stepping machine that seems designed for post-polio. You sit and exercise with both your arms and legs, one or the other. The NuStep has straps for your feet, leg stabilizers for abduction, gloves for a better grip and a Polar heart monitor.
For the first 10 years of my post-polio diagnosis, I was active, perhaps too active. But I had no regular aerobic exercise routine. After a leg fracture, I became seriously de- conditioned until I had a heart attack. Afterwards the physiotherapist could not suggest anything I could do for exercise.
Then I went into Cardio Rehab where they had a complete gym with machines and discovered the NuStep. It was the only machine that I could use for exercise. I have a left leg with very little muscle strength from the hip to the toe.
With patience, I could carry out 30 minutes of aerobic exercise every 2nd day. I started at a low resistance level of 2 and worked my way up to 6 with an interval of 7. That was a mistake. A moderate level for me was 4-5.
I also tried to go too fast. Later the physiotherapist stopped me at 115 steps per minute. It’s not a race, right?
Within 6 months, my left leg – the one with no muscle function – could push the pedal at level 3-4. The physiatrist said the NuStep was strengthening my hip and back muscles.
There have been setbacks when I tried too hard had to stop for various reasons. Overall, the NuStep helped me to get my energy back and engage in more activities of daily living. The NuStep has allowed me to work too hard, which is typical of a polio survivor with an over-achieved attitude.
The NuStep is also relatively expensive – about $5,000 US with various accessories; however, you may find the cost similar to a multi-year spa membership and the convenience of your own NuStep is hard to beat.
The NuStep is a popular exercise machine at spa’s and the YMCA across North America. If you live near one, get a trial membership to see if it works for you. Since there is less preparation than swimming, you may find the effort to go to a spa acceptable and there is always the opportunity to socialize. Google “NuStep post-polio” for more articles.

Walking

Walking is the easiest and most recommended aerobic exercise, except if you can’t walk. Your body is upright and you are using your legs, arms and back and giving your heart and lungs a workout. You can control the pace and duration of your walking.
Some people with PPS can still walk with canes or crutches walk for exercise. I knew a man with PPS who walked regularly despite having moderate to severe paralysis in each leg. He used forearm crutches and wore leg braces. As he got older, he had to give up walking because it wore him out.
Even though my walking is shaky and potentially dangerous, I still try to walk with forearm crutches every day for 5-10 minutes. It’s good exercise, non-strenuous and it keeps me upright and moving. Even standing in place is a good exercise. Ironically, I had not been able to walk again until my second month of physiotherapy using the NuStep since it strengthened my leg and back muscles.

Hand Cycles

Hand cycles are a sit-down aerobic exercise that is recommended for people with post-polio syndrome, usually for those who didn’t have polio effects in their arms and upper body. Hand cycle exercise will give you an aerobic exercise but it’s terribly boring.
Hand cycles are relatively inexpensive to buy and can be clamped to a table that is suitable to your sitting height, in a chair or wheelchair.

Swimming or water aerobics

Swimming or water aerobics are often recommended for post-polio syndrome exercises, for example in the Mayo Clinic article. Water has low resistance to movement. It’s generally warm at the pool. President Franklin D. Roosevelt took water exercises for his polio.
If you have a swimming pool or one in your living complex, I recommend you try it.
However, swimming is only one task involved in water aerobics. You must get ready to leave home, travel to the pool, shower (usually one of the rules), and change, navigate wet tile floors and then you’re at the pool side. Once the 20 minutes of exercise is over, you must repeat the process in reverse.
Swimming defies the rule of conserving energy since you may spend more energy getting to and from the pool than during the exercise itself. 18 years ago, I signed up for swimming and went to only 2 classes before I got exhausted. I repeated it a year later with the same results. I was exhausted from each trip. I was also worried that I might slip, fall and break a bone.

Good luck with your exercise program and make sure you get a physiotherapist helping you.
The anecdotal comments about physiotherapists are not intended as a criticism. Post-polio syndrome is not the most common disability and even health professionals may not be fully versed on prognosis, diagnosis and treatment.

For more information check out www.post-polio.org or the post-polio organisation in your country.

Polio in my life – a story by Trevor Jessop

I was born in Victor Harbour in 1946 and when Polio came to visit me around 1950 I was probably 4 years old, too young to understand what was happening to me but definitely too young to remember much about it later. My family were living in Port Elliott at the time and I was the second in a line of four boys, luckily the only one infected by the polio virus.

Following a long period of time (most of which I simply do not remember now but apparently spent in the Children’s Hospital, Hampstead Infectious Diseases, Somerton Children’s Home and Estcourt House) I finally made it back to the family. Living in Pt Elliot did have its dis-advantages though when you had to attend the Children’s Hospital for treatment.

A letter written by my mother to her parents (which recently came into my possession) did enlighten me a bit, it reads;

“We have Trevor home again now, Somerton was unable to keep him there any longer as the Children’s Hospital was pressing the Home to take new patients to help relieve the bed shortage, he is walking 15 minutes 3 times a day and the remainder of the day he spends in his frame. I have to put him through a few exercises each day which takes about an hour. He has to go back to the Children’s Hospital for a check-up every fortnight.” Trevor is wearing an iron on his right foot as it is still very weak & wasted looking but it may return to normal as time goes by.

That check-up was part of a very busy day! The ambulance met the Victor Harbour bus in Adelaide and took me to the hospital, they gave me my dinner and tea and brought me back in time for the return journey at 5pm.With my dad working in town, he was able to meet the bus and ensure that everything was going to plan.

Unfortunately polio paid the family another visit in 1951, this time my mother along with an unborn sibling were the victims. Coincidently, the day her death notice appeared in the paper, there was also an article about the Port Elliot community fund- raising to commission the fabrication of a special bed for a young Polio victim living in the town(me).

The family was split up for a couple of years, dad was a TPI veteran, having lost an arm and 3 fingers in Tobruk in the war. Unable to find work in Port Elliot, he was working in Adelaide and living in a boarding house, only going home on the weekends so was unable to care for us boys, especially one who was tied to a frame most of the time. My three brothers were sent to Morialta Children’s Home for a couple of years and I was moved around from place to place (mostly with uncles & aunts who lived on farms in the Mallee).
I do not recall most of what happened to me in those years but dad finally got things organised, a house for us to live in and housekeeper to look after us and then school.

Surgery on my foot (bone fusion) at age 15 years relieved me of the burden of wearing a calliper and that was a life changing event. From then on life was much the same as everybody else, education, work, marriage, children and grandchildren, living the good life! (just a bit slower than everyone else eh!)

Swelling Issues and Polio Survivors-Why we need to take it seriously By Dr. William DeMayo

Question: Dr. DeMayo – My right leg has always been very thin. It’s now terribly swollen from the knee down, and feels extremely heavy (I’m having trouble transferring into the shower). The doctor did an ultra sound to rule out blood clots. It was negative. I’ve been using a power chair for 18 years. What should I do?

Response: This is a great question that pertains to many polio survivors. Before addressing the issue of swelling itself, I want to acknowledge and endorse the evaluation of unilateral swelling with ultrasound to rule out blood clots (Deep Venous Thrombosis-also known as DVT). Given that a DVT in the leg can break off and travel through the heart to the lungs, it is a potentially life-threatening condition that is easily diagnosed using this technology that involves soundwaves (like sonar). Venous clots are most common in someone who has recently become sedentary or has had an injury followed by unilateral swelling. Although they are less common in the chronic setting, it is a diagnosis that should never be missed. This reinforces the general concept in healthcare management to be sure and rules out the most serious causes, especially if diagnosis is easy. It is also important to rule out other common causes of swelling such as congestive heart failure or kidney failure but these typically present with swelling in both legs. Unilateral swelling can also infrequently be caused by issues such as tumor obstruction to blood flow. In any case, it is always important to discuss swelling with your physician before concluding it is benign.

With the above said, the most common cause of swelling in polio survivors is “dependent edema”. Swelling in the feet and lower legs accumulates due to gravity.The heart pumps fluid to the feet, but physical activity needs to pump the fluid back. Contracting muscles literally squeeze the blood in veins towards the heart and valves prevent the blood from moving back.
Any immobility, paralysis, or sedentary behavior will limit this pumping action. Fluid from the accumulating blood seeps into surrounding tissues leading to edema. The extent of edema in the tissue is assessed by pressing for several seconds and evaluating if “pitting” of the tissue occurs where fluid is pressed out of the area. The more pitting there is, the more severe the problem.
Treating lower extremity edema centers around minimizing the effect of the three biggest factors that exacerbate swelling:Sitting, Sedentary lifestyle and Salt.

Sitting

Gravity makes it more difficult to return fluid to the heart and increases the chances that edema will accumulate in the legs. The lower the feet are relative to the heart the greater the hydrostatic pressure that needs to be overcome and returning blood to the heart. Furthermore, resistance at the knees and hips in a bent sitting posture can make this return of blood even more difficult. Unfortunately, the opposite is also true if the feet are at the level of or above the level of the heart then it is easy for fluid to return. Most people wake up with less edema in the morning. Elevating the feet above the heart as much as possible will result in further reduction in swelling. If there are no heart problems or other contraindications, a brick under the foot of the bed, can result in fluid slowly moving out of the feet into the general circulation over the course of the night so it can be excreted by the kidneys. This effect of this small elevation can be illustrated if one thinks of water on a flat surface; it doesn’t take much elevation of one side to get the fluid to flow to the other side. The slight elevation is compounded over the long duration we are typically in bed at night.

During the day, support socks/stockings can often help prevent fluid from the accumulating when an individual is sitting. Support stockings can range from over-the-counter support socks from Walmart to custom stockings prescribed by a physician. Donning these socks can be problematic. This is especially true if there is upper extremity weakness. A sock-aid is a plastic sleeve with a rope pull that can be quite helpful. Despite this aid, many people abandon compression socks as being impractical. I have always found Tubigrip to be a helpful alternative to stockings – it is a tubular bandage that has enormous elastic qualities.
A double layer from the toes to the knees is usually easy to slide on and well-tolerated. Moderately severe swelling usually requires size E. A roll can be obtained on the Internet through Amazon. Some providers also sell it by the yard.
For individuals who do not respond to static compression sequential compression pumps are available by prescription (see your doctor). In some cases, these devices can be very helpful. They involve use of an inflatable “boot” with several chambers. A pump inflates the chambers in the foot, then the ankle, then the lower leg pushing fluid back towards the heart. Treatment usually takes a couple of hours a few times a week.
For those who are using a power wheelchair, lower extremity edema can be dramatically improved with a “tilt in space” option. A “tilt in space” option requires specific medical documentation to be provided to the insurance company. As the head and upper body move down, the feet are raised and the hips and knees are maintained at 90°. This is very different than reclining (when the feet stay at floor level). Tilting periodically throughout the day can drain fluid from the feet and dramatically prevent accumulation.

Sedentary Lifestyle

Many polio survivors have significant impairments in mobility. For those who are able to walk, even short walks multiple times per day can be of significant benefit in preventing swelling. While walking is clearly the best activity to facilitate muscles pumping fluid back to the heart, any contraction of these muscles will help. “Ankle pumps” are exercises that are often taught to all patients on rehabilitation units to prevent swelling and clots. They can be done in bed or wheelchair and simply involve forceful contraction of the calf muscles while pointing the toes down followed by pulling the toes up towards the body and repeating multiple times throughout the day. It is helpful to think of this like pumping the handle on a well to move fluid. Many polio survivors with severe atrophy in the lower leg may simply not have the muscle mass to “pump” the fluid. If atrophy is only in one leg, it is typical to see swelling mostly on that side.

Salt

Kidney failure leads to swelling because salt is not excreted in the urine. To keep the concentration of salt normal in the body, we then retain more fluid to dilute the salt. Most of us, especially as we get older, can see this impact even without kidney failure. Eating salty chips, soup, or other foods high in sodium can dramatically affect edema for many individuals. Evaluating sodium intake is the first step in preventing this. Talk to your doctor if the swelling continues. Physicians may recommend a “Water Pill” (Lasix, hydrochlorothiazide, or others). If one is prescribed, it is best taken the morning to avoid interfering with sleep.

Leg swelling is more than a cosmetic issue or inconvenience and donning shoes and socks. Edema can reduce blood flow to the skin and increase the chances of infection. Additionally, the sheer weight of the fluid can severely impaired function in individuals who already have weakness. Excess fluid in the legs can add up to 10 or 20 pounds of “deadweight” and lead to fatigue over the course of the day or inability to climb stairs, transfer into the tub or get in a car. Think about the impact of putting10 pound weights on one’s ankles for the entire day. Furthermore, over weeks and months this can also result in functional decline leading to a more sedentary lifestyle and a vicious circle. Conversely, removing a significant amount of edema can often improve function. A minor amount of swelling is very common and may not be problematic but moderate or severe swelling is almost always important to address with your physician. For cases that did not respond to the above suggestions, Lymphedema clinics are available. My experiences have been that many of these clinics provide short-term benefit with edema returning after treatment concludes. If, however, they can get swelling down so that compression stockings can be used then long-term management can be achieved.

I encourage Polio survivors to continue to pursue treatment of moderate or severe edema (swelling) until a customized approach is developed that meets their needs. In most cases that includes a combination of approaches with input from a treatment team including a rehabilitation physician, primary care physician, therapist, and nurses.

This article is published with permission from Pennsylvania Polio Survivors Newsletter, July 2017

Brett Howard's Polio Story

Once they found out I had polio I was past the infectious stage, so I was treated at home.
I was still confined to the house for a few weeks that I can remember.

Vivid memories I have are of having a district nurse come in and do physio in the house. When I went to bed I used to have a half cast bandaged to my leg. My sister remembers helping with some of my exercise which was horrible, because it hurt – I don’t remember it but she does.

From about age seven I had a pretty normal life. I had a weaker right leg which made my sporting achievements a bit lacklustre - I was always in D grade in Aussie Rules Football, but I still got out and had a go. I took on an apprenticeship, developed a career, and enjoyed getting out bushwalking.

Then around age 50 I started getting tired and fatigued.  You can look at it and say ‘well, I’m just a lazy old bastard,’ but there was a problem. My GP identified it as Post-Polio. I struggled with it by myself then for a while. Then around 2006 at 57 I was advised to retire.

Not long after retirement I had to have some treatment because I had a really bad back – all my spine was out because of my shorter leg. My GP suggested I have Rhizolysis where they burn the end of the nerve to stop it sending signals back to the spine. When I had the surgery in December 2006, the doctors suggested that “you’ll be back to see us for another round of this as everyone else has”.

Well I wasn’t coming back for another round, so I challenged myself! A lot of people have the Rhizolysis but then don’t keep up their movement because of pain. You have to start with what you can do, so I challenged myself by starting hydrotherapy out at Modbury. That was really the limit of what exercise I could do at the time. I got stronger and managed to start Pilates as well. I haven’t needed to go back to see the surgeon about Rhizolysis since.

I realised I could get cheaper hydro through Polio SA – so I joined. I was a member for 12 months then thought I’d better do something useful and joined the committee; in 2010 I took over the presidency after the previous president left to care for his wife, who had a bad relapse.

Most of our members are older people who contracted polio in Australia but there’s also a next generation of people who contracted polio overseas and we’d like them to be accessing the benefits we have on offer.

To everyone living with the late effects of polio - once its identified, listen to your body and don’t overdo it, but don’t do nothing either. There’s support out here for you from people like me and the others at Polio SA who can share our experiences and support.

My Polio Story - Ron Blackwell

I contracted the Paralytic Polio at the age of 9 and I led a fairly regular sort of existence once I got back into mainstream after being in hospital and enjoyed pretty decent health. By the time I was in my 40s started to experience difficulties which resulted in depression – stemmed from frustration not being able to do what you think you should be able to do.

My polio journey is unique to me but at this stage of my life my biggest issues are with fatigue – a bit of a compromise really as you need to exercise to keep your muscles in good nick, but with fatigue it’s easy to overdo it. I am involved in a lot of activities but have to be wary of the fact that I can easily overdo it.

About 20 years ago – mid nineties – I moved into the city and became involved in Polio SA and now on the committee. Good thing about being part of Polio SA being aware of what can be done – the biggest thing is having hydrotherapy plus the availability of physio and those sort of activities are really needed. And I’ve had the opportunity in recent years of sharing polio experiences with people from around Australia. It gives you heart, people who live a fairly standard sort of life really despite being affected.

Concern about people being a bit casual and not getting vaccinated. The old story is that it’s only a plane flight away – it’s still there and we need to be cautious about that. I had difficulty when the immunisation first became available, there were parents who didn’t want their kids immunised, and I spoke out about it – even though I was only in high school. I was head prefect of my school at the time. I couldn’t understand why people wouldn’t want to protect their children.

Back then I was the only person in my country town who had suffered from paralytic polio, and it was several years later that a couple of other kids contracted it, but the weird thing about it was I was the only one in that period – it was 1948 – who contracted it. I was away from home for 20months and on my return it was almost like it hadn’t happened from the point of view of other people.

I think I was well accepted, I went back to school and my mother insisted on me wearing long trousers to cover the supports I wore, and so I was fortunate to continue an average sort of life. 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. And I think that’s to do with the age I contracted it whereas those who contracted it younger, because their bodies hadn’t developed as much were more extremely affected.

Made two furtive attempts to write my polio story so we can use that in our newsletters and we’ve been trying to urge people to share their story. 

Polio then and now

Source: Polio Australia’s Polio Oz News, March 2017 – Autumn edition

A passage in Philip Roth’s novel Nemesis describes the horror of catching polio in the US town of Newark in 1944, when outbreaks of the disease were common and each summer was spent in fear of infection.

“Finally the cataclysm began – the monstrous headache, the enfeebling exhaustion, the severe nausea, the raging fever, the unbearable muscle ache, followed in another forty-eight hours by the paralysis”, it says.

Polio, or poliomyelitis, has existed for millennia. There is ancient Egyptian art which depicts a victim of the disease with a frail, deformed limb, using a staff for support.

While the paralysing effects of polio have always been devastating, outbreaks of the disease were relatively rare in the West until the late 19th century, when major epidemics swept Europe and the US.

In Roth’s story, everyone knows what polio is but no one knows where it comes from or how it spreads, with everything from flies to fast food blamed for its rapid transmission.

In fact it is passed on through contact with faecal matter, by drinking contaminated water and eating food that has been touched by the unclean hands, and sometimes through coughs and sneezes.

Once infected, the virus invades the nervous system and begins to destroy nerve cells which control the muscles, especially in the legs. If someone is paralysed by polio, there is a five to 10 per cent chance they will die when the disease reaches their respiratory system. There is no cure.

“He was there for three weeks before he no longer needed catheterisation and enemas, and they moved him upstairs and began treatment with steamed woollen hot packs wrapped around his arms and legs, all of which were initially stricken,” writes Roth, of one character’s experience.

“He underwent four torturous sessions of the hot packs a day, together lasting as long as four to six hours. Fortunately his respiratory muscles hadn’t been affected, so he never had to be moved inside an iron lung to assist with his breathing, a prospect that he dreaded more than any other.”

The iron lung was invented in 1928 by American physiologists Philip Drinker and Louis Shaw. The huge ventilator, which left only the head visible, kept polio victims alive for a number of weeks while they recovered from the illness – but those left permanently paralysed could spend their whole lives encased in one.

Dawn Varma, a 20-year-old who was paralysed by polio when she was 10 weeks’ pregnant, even gave birth while she was in an iron lung. A photograph from 1959 shows Ms Varma, the wife of an Indian scientist, inside the ventilator with a nurse tending to her healthy newborn baby, called Dilip.

In 1952, Jonas Salk developed an injectable polio vaccine and in 1961 Albert Sabin pioneered the oral vaccine drops, which had the advantage of spreading immunity through communities. These vaccines were highly effective, and cases in the US fell from 35,000 in 1953 to 5,300 in 1957.

The new oral vaccine was approved for emergency use in Hull in 1961 when an epidemic hit the city, with parents taking their children to improvised immunisation centres in their thousands to be given sugar lumps with the vaccine.

The success of mass polio vaccination in the developed world led doctors and international humanitarian organisation Rotary International to consider its potential elsewhere.

John Sever, head of the infectious disease branch at the US National Institutes of Health and a Rotary member, in 1979 proposed the idea to the group’s president (Ed. Clem Renouf), who wanted to develop a new project for Rotary that would involve the entire organisation.

“He asked my opinion of what we could do, and I wrote him: ‘If a single vaccine were to be selected, I would recommend poliomyelitis.’ At the time, less than half the children in the world were receiving any vaccine,” Dr Sever told National Geographic. “At the time, there had just been the last cases of polio to occur in the United States, and smallpox had just been declared to be eradicated. So people felt it was possible, that we could aim to eradicate polio.”

He said soon afterwards, “the legislative body that represents all Rotarians voted that we would make immunisation for the eradication of polio our number one priority throughout the world.”

That same year, Dr Sever and several fellow Rotary members travelled to the Philippines, where with the support of the government and health industry, they immunised around six million children.

Soon, the virus had been eradicated across the Americas – a remarkable feat that led Rotary International and the World Health Organization to announce the goal of worldwide polio eradication in 1988.

Now the disease is only endemic in three countries, Pakistan, Afghanistan and Nigeria, and there were just 37 cases last year. Optimistic health workers and organisations such as Rotary International say 2017 could be the year in which the world sees the last case of polio.

Serious challenges, including violent attacks on vaccinators by Islamists, poor routine immunisation coverage, remain.

But one day taking children to the doctor for polio vaccination drops may be a distant memory, and the long list of famous polio survivors including Francis Ford Coppola, David Starkey and Mary Berry will fade into history.

The hope generated by this possibility is summed up in Roth’s novel when the protagonist listens to his grandmother reminisce about diseases of the past.

“His grandmother was remembering when whooping cough victims were required to wear armbands and how, before a vaccine was developed, the most dreaded disease in the city was diphtheria,” it says.

“She remembered getting one of the first smallpox vaccinations. The site of the injection had become seriously infected, and she had a large, uneven circle of scarred flesh on her upper right arm as a result. She pushed up the halfsleeve of her housedress and extended her arm to show it to everyone.”

Roth, P, 2011. Nemesis. International: Vintage. ISBN 9780307475008

Health and Wellness Retreat 2017: look after your body, mind and spirit

What are you doing to keep your body, mind and spirit healthy? Polio Australia’s upcoming Health and Wellness Retreat will allow you to zone out of your everyday and zone in to your body, mind and spirit with your fellow polio survivors and the wider post-polio community.

The seventh Health and Wellness Retreat is being held on Queensland’s beautiful Sunshine Coast from Thursday 26 to Sunday 29 October 2017. You can come alone or bring a partner or friend to experience this with you.

The knowledge gained during previous retreats has assisted participants to better manage their own condition. Participants have also shared their new knowledge with their health professionals, facilitating improved care for other patients presenting with the late effects of polio.

The heavily subsidised registration fees start at $350 per person and include three nights’ accommodation, all meals, workshops, clinical assessments, and activities.

So if you are ready for some summer sunshine and want to improve your wellbeing, now is the time to book your place! For more information, visit www.polioaustralia.org.au/retreat-2017

The Sarcopenia Project: research into reducing the loss of muscle mass and strength due to ageing

In April, Dr Nigel Quadros and his associate Dr Kandiah Umapathysivam (Sivam) held an information session with Polio SA members about their proposed research on improving the lives of people who experience sarcopenia (the loss of muscle mass and strength due to ageing) as a result of an earlier polio infection.

Sarcopenia and polio survivors

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

Due to nerve cell loss after acute polio viral infection, polio survivors live with sarcopenia at an earlier stage in life compared to the normal ageing population. Immobility-related underactivity is likely to be a major contributor to sarcopenia in polio survivors.

There is no reliable way to differentiate age-related sarcopenia from underactivity-related sarcopenia but both contribute to weakness, fatigue and loss of function.

Both types of sarcopenia may be improved through strengthening exercise and proper nutrition.

About the research project

The Sarcopenia Project aims to improve the lives of people who experience sarcopenia as a result of an earlier polio infection. The research will:

Use current screening tools to detect the prevalence of sarcopenia in people who had polio

Determine if specifically tailored exercises and nutrition and reduce the effects of sarcopenia and improved quality of life

Document results to form the basis of a larger study.

The researchers are currently recruiting people who have had a polio infection to participate in this study.

Participation is entirely voluntary and you are free to withdraw at any stage. The researchers would like to emphasise that the screening tools used to assess sarcopenia are non-invasive and pose no risk to you. All information will be obtained with questionnaires and simple body measurements and no blood tests or radiological investigations will be performed. All data gathered from you will remain strictly confidential and not appear in hospital records.

Participation in this research involves:

• Filling out the post-polio questionnaire

• Providing an update of any other medical conditions you may have

• Providing a list of your current medications

• Returning the above information with your contact details.

If you are interested in participating in this project or would like to learn more, please contact Polio SA on 0466 893 402 or email poliosa.office@gmail.com.