o here we are, 12½ years since PPNWA had its inaugural meeting, 23 August 1989, to which 230 people turned up. Are we any wiser? Do we know more about "post polio"?
Our numbers now are - over 1700 registered in WA. Our newsletter goes to a number of other polios in other states, polio groups in other parts of the world and a number of local health professionals and politicians.
SO WHAT DO WE KNOW?
A recent recount of available data through questionnaire return in WA gives us the following figures. However not all people have updated their data so it does not necessarily reflect either an increase in equipment use or an improvement in symptoms eg fatigue now not a problem due to carnitine use. So if your circumstances have changed please notify us. We can send a questionnaire or do it by phone.
Post polio (PP)- simply means "after polio" so that fits every polio survivor.
Late Effects of Polio (LEOP) - a general term that covers anything that is happening to us as we get older, that can be directly or indirectly related to having had polio. eg as a result of walking with a limp, I have caused wear and tear on my good hip resulting in pain and maybe need or have a hip replacement - or the sway I need to walk has resulted in arthritis in my back or knee etc.
Post Polio Syndrome (PPS) - a symptom cluster that includes new pain, fatigue and weakness and results in declining ability and/or new disability in post polios.
Post Polio Progressive Muscular Atrophy (PPMA) - a further step from PPS that involves further muscle wastage or thinness and new weakness in muscles.
So our own local statistics show us that all the above is affecting
the majority of us as PP's.
|WHAT CAN WE DO ABOUT IT?
1. We need to take good care of ourselves.
2. Admit we have a problem and seek help.
3. Share our successes and failures.
To that end we have our own Post Polio Network - a charitable organisation of polio survivors getting help for ourselves because if we don't, nobody else will. As we tend not to complain or make a fuss - so nobody knows we need help!
Our Network is the central point for us to seek advise, direction, clinical support, up-to-date information and for us to feed information back.
This is how our research progresses - grass-root level, we drive it, we try it, we see what will work for us, we record our successes.
Our Committee consists of post polios. Our President is a doctor (a Specialist - not in polio but in radiation oncology at one of our major teaching hospitals), our Vice-President is a retired physio and our CEO is a nurse - the widow of a polio. So we have the ability to run our own in-house polio clinic and research.
We have had the support of hospital clinics to refer people to - Orthotics (calipers) and Rehab Engineering (wheelchairs and cushioning) at Royal Perth Rehab; Pulmonary Physiology (breathing) and the Sleep Disorder Clinic at SCGH (also ENT and Speech Therapy for swallowing problems). Some people are accessing orthopaedic clinics, rehabilitation, neurology clinics and podiatry.
We have identified a neurologist that is experienced in post polio and he has assisted a number of people in many ways, including finding or eliminating other causes and being able to support applications for Disability Support Pensions
where necessary. People have been slowly educating their GP's re post polio and if your GP doesn't believe in post polio, we can provide more info or find someone in your area who may have a more sympathetic GP so that you can change GP if
necessary. People in our country areas have also identified doctors willing to assist them or have been referred to specialists in Perth.
Just because we had polio doesn't make us immune to all the other diseases everyone else gets too. We are all complicated by arthritis, asthma, diabetes, high blood pressure, cancer, fractures, heart disease, stroke just the same as the rest of the population.
Our Network and Clinic aims to help the whole person not just the polio
aspect of a person. Other things that are going wrong with us may
also impact on our polio. If we are given beta-blockers to treat
high blood pressure, they will further lower our ability to use carnitine,
(an amino acid that helps muscles to work) thus increasing the deterioration
of our polio affected areas and fatigue. If we are given cholesterol
reducing drugs, there is a greater chance of muscle breakdown occurring,
as our muscles are already in a fragile state due to polio. Many other
drugs, including muscle relaxants and anaesthetics can have a
disastrous effect on muscular ability, recovery time and even breathing. We can't be complacent and say we are only involved in the polio side of a person.
Furthermore, a surprising result of our carnitine research has brought to light the fact that children and even grandchildren of polios may be experiencing muscle and fatigue problems too. (mainly due to low carnitine and magnesium levels) We are having to look at other family members too (as well as progeny). We now have a number of families registered where siblings or even parents also had polio (often unrecognised at the time) and are now deteriorating as well. PPNWA needs to look beyond just the polio survivor.
So what progress have we made over the last decade?
LATE EFFECTS CLINIC
We finally have a rehab clinic dedicated to the Late Effects of Aging with a Disability at Royal Perth Rehash, where polios can be referred and see physios and doctors becoming more experienced with the polio picture. This clinic involves a thorough muscle assessment and individualised exercise programs to prevent small problems becoming big ones.
Our successful carnitine research is being used by increasing numbers in WA and also in other states. (I have had a letter from a post polio in NZ whose daughter lives in WA. He is so thrilled with his success with carnitine that he is trying to spread the word in NZ.)
We have identified a number of other vitamin and mineral deficiencies that can be hindering the ability of the body to work.
We have been involved in dietary research with blood groups as the key, that helps to lessen the strain on the body as it struggles with deteriorating polio.
The Polio Clinic is trialling a few more possibilities this coming year (magnetic water, human growth hormone releaser, carbon dioxide levels and others like carnitine, various minerals, B12 , gelatine etc are on-going.
We have produced a number of small booklets that give helpful information on things we have found that work. One booklet is dedicated to many aspects of living with post polio. Another is a recipe book to help work out meals that will help to provide the nutrition we really need.
There are finally some doctors around Perth that are starting to work in similar fashion to our Polio Clinic. This is great to have medicos with orthomolecular experience to handle the more severe and complicated health problems.
So the future is looking better for polio in WA. Members are ringing up for support information to give their doctors, anaesthetists, physios and ward staff before they have surgery and so getting through it better than before.
We get constant phone calls to order more carnitine and other supplements. Some members pop in to pick it up. All people first starting carnitine are having their pre and on-carnitine blood levels recorded. More people are referring other family members that are struggling, to our in-house Polio Clinic for help
More people are improving thanks to the dedicated physio team at the Late Effects Clinic
The workload at the Polio Office is getting greater and greater.
We desperately need more volunteers to help sort our paperwork. The
problem is - there is so much interesting helpful stuff that we are filing,
everyone goes home armed with
all the useful things they found while they were helping to tidy up!
So how about? Come in and help - yourself as well as us! (Even just a couple of hours helps.)
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