Preventing Complications in Polio Survivors Undergoing Surgery (or) Receiving Anesthesia

Unfortunately, only a handful of specialists treat Post-Polio Sequelae (PPS) - the unexpected and often disabling fatigue, muscle weakness, joint pain, cold intolerance, swallowing, sleep and breathing problems - occurring in America's estimated 1 million polio survivors (40 years after their acute polio).1,2 However, all medical professionals need to be familiar with the neurological damage done by the original poliovirus infection that today causes unnecessary discomfort, excessive physical pain and occasionally serious complications after surgery. This is a brief overview to inform patients and professionals about the cause and prevention of complications in polio survivors undergoing surgery.

PRE-OPERATIVE PREPARATION

The pre-operative period is the most important, since it is when polio survivors must establish communication with the surgical team. After the second opinion and a polio survivor's decision to have surgery, the patient needs to ask the surgeon to read this article and the references cited. Then, surgical candidates must meet with the surgeon and anesthesiologist to discuss in detail patient’s complete polio and general medical histories and the problems that will likely arise before and during surgery, in the recovery room and on the nursing floor. It is also recommended that the polio survivor meet with the Supervisor of Nursing on the floor where they will be transferred after surgery to discuss likely problems during the post-op and recovery period.

Lungs. We recommend that all polio survivors have pulmonary function studies as part of their pre- operative. This is vital for those who had bulbar polio acutely, whether or not they used a respirator or an iron lung. But, polio survivors who have (or had) neck, arm or chest muscle weakness or have swallowing problems should also have their lung function tested 3 so there will be no unpleasant surprises coming off the respirator at the end of the operation. Polio survivors with a lung capacity below 70% may need a respirator or respiratory therapy after surgery. 1 Of course, polio survivors who use a respirator during the day or at night must discuss their respirator use and maintenance in detail with their surgeon, anaesthesiologist, the nursing staff, and with their own pulmonologist, before admission to the hospital.

Physical Assistance

X-rays are a normal part of pre-op testing. Because of workers compensation concerns, many hospital staff are not eager to move or lift patients. Unfortunately, X-ray and examining tables are built at heights that are convenient for the professional, not the patient. Many polio survivors cannot step on a stool to get onto a high table, or even pull themselves over onto a table from a stretcher. Thus, polio survivors must ask for help in transferring. Since most polio survivors have no experience asking for help under any circumstances, they need to find a phrase with which they are comfortable that will communicate whatever their needs are. Long explanations about having had polio or PPS or the specifics of which muscles are weak or paralysed are not necessary. (For example, a simple "My legs (arms) are paralysed and I can't get onto table” or “I will need help" should suffice). This phrase may have to be repeated before the polio survivor will be assisted. If the professional replies, "Oh, I bet you can move by yourself if you try!" or "Don't expect me to lift you," an appropriate response is "I cannot get onto the table. Please ask someone else to help me or let me speak to your supervisor." A pleasant but steadfast refusal to do difficult or dangerous transfers is the polio survivor's best defence against injury before or after surgery.

General Anaesthetics

Polio survivors are exquisitely sensitive to aesthetics. It has been known for 50 years that the poliovirus damaged the area of the brain stem - called the reticular activating system (RAS) - responsible for keeping the brain awake.4, 5 Because the RAS was damaged in those who had paralytic (1 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016) and non-paralytic polio, a little anaesthetic goes a long way and lasts a long time. For example, the pre-operative medication used to "calm" surgical patients - sometimes Valium or Vistaril - may by itself put polio survivors to sleep for 8 hours. (Such excessive and prolonged sedation does occur when low-dose Propofol is used alone in patients undergoing invasive but nonsurgical procedures, like endoscopy.) Add to a pre-operative "calming cocktail" an intravenous anaesthetic (like sodium pentothal) or a gaseous anaesthetic, and polio survivors have been known to sleep for days. Propofol is the drug of choice for polio survivors. In addition, polio survivors with respiratory problems may have trouble clearing the gaseous anaesthetics. A number of our patients have awakened from anaesthetic on a respirator in I.C.U. to the frightened faces of their family, surgeon and anaesthesiologist several days after surgery.

Here is the first of rule of thumb - we call "Rules of 2" – for polio survivors having surgery:

Anaesthetic Rule of 2: Polio survivors need the typical dose of anaesthetic divided by 2.

This first "Rule of 2" is certainly NOT intended to dictate the dose of anaesthetic, but merely to remind anaesthesiologists that polio survivors need much less anaesthetic than do other patients.

This does not mean that a given polio survivor might require less than 1/2 the typical anaesthetic dose, or that another won't need more anaesthetic. As always, the dose of anaesthetic must be individually adjusted (for body weight, lipid space, etc) and be adequate to keep patients under during surgery but not cause them to sleep for a week. We have found Desflurane to be the best tolerated anaesthetic when used with BIZ brain wave monitoring.

Even applying the "Anaesthetic Rule of 2" polio survivors may be very sedated, if not asleep, for many hours after the surgery. This is one of the reasons why same-day surgery - even for complicated dental procedures - is not advisable for polio survivors.

Sleeping or excessively sedated polio survivors cannot be expected to return home and take care of themselves after same-day surgery, since surgical complications may go unnoticed and sedation-impaired coordination makes falling likely. In spite of insurance company pressure, NO POLIO SURVIVOR SHOULD HAVE SAME-DAY SURGERY except for the simplest procedures that require only a local anaesthetic.

Nerve Blocks

However, there are also problems with local anaesthetics that numb only one area of the body. Spinal anaesthetics, like epidural or saddle blocks used for childbirth and lower body procedures, often allow surgery without the patient being asleep and are therefore more desirable for polio survivors. However, the injection of a local anaesthetic near the spine results in both pain-conducting nerves and motor neurons being anaesthetised. Polio survivors are very sensitive to anything that further impairs their poliovirus-damaged motor neurons and a spinal anaesthetic may cause polio survivors to be paralysed for many hours. If a spinal anaesthetic is used, polio survivors cannot be expected to get up and walk after surgery. Curare-like drugs that are intended to paralyse muscles (e.g., succinylcholine) are typically used during major surgery to relax muscles that are going to be cut and make it easier for the ventilator to fill the lungs while patients are on the table. Again, any drug that interferes with muscle functioning will prevent polio survivors from walking or even moving for hours longer than it would for patients who didn't have polio. Regardless of whether a local, spinal or general anaesthetic is used, the following applies:

Post-Anaesthetic Rule of 2: Polio survivors require 2 times as long to recover from the effects of any anaesthetics.

Blood and Guts

There are yet additional concerns. Polio survivors with muscle atrophy, especially in the thigh muscles, will have a smaller blood volume than would be expected for their height or weight. Therefore, bleeding during surgery may be more of a problem. Polio survivors may want to bank their own blood slowly over the course of weeks, even for procedures where excessive blood loss is not typically expected. However, since polio survivors may be significantly more fatigued and prone to faint after giving blood, relative's blood may need to be banked instead. Also, polio survivors can be sensitive to atropine-like drugs used to dry secretions during surgery. 6 Atropine-like drugs also slow the gut, and polio survivors may be excessively constipated after surgery or, in some cases, actually have their stomachs and intestines stop (2 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016) moving (gastroparesis; paralytic ileus) for a period of time. These problems can be treated symptomatically as they would in someone who did not have polio.

Positioning

One overlooked problem is the positioning of the post-polio patient on the operating table. Muscle atrophy, scoliosis and spinal fusions may make certain positions problematic, especially those involving extension of the spine. Since the polio survivor is usually unconscious during positioning, there will be no report of pain that would normally warn of potential damage. A number of polio survivors have experienced severe back pain for months post-op, and even permanent traction injuries of nerves, after being placed for hours in damaging positions. It would be advisable for the patient to be awake during positioning on the table to prevent such post-op complications.

POST-OPERATIVE

Cold

If the dose of anaesthetic is carefully regulated, a polio survivor's first post-op experience will be waking in the recovery room. Often, polio survivors awaken from anaesthetic shivering violently. Research has shown that polio survivors are extremely sensitive to cold because they have difficulty regulating their body temperature. Polio survivors' automatic (autonomic) nervous systems were damage by the poliovirus from the brain (hypothalamus) through the brain stem (reticular formation and vagal nuclei) to the spinal cord (intermediolateral columns). 4-8 Polio survivors cannot control the size of their blood vessels, since the nerves that make the smooth muscle around veins and capillaries contract were paralysed by the poliovirus. Therefore, polio survivors' blood vessels open under anaesthetic and dump the heat of their warm blood into the cold recovery room. Recovery room nurses need to know about this problem and help polio survivors stay warm. Additional blankets will help, and the surgeon can even write an order for a heated water blanket to be used in recovery.

Vomiting

Another post-op problem related to brain stem damage is vomiting. As in anyone who receives a general anaesthetic, polio survivors can develop nausea and vomit. However, polio survivors are more apt to faint (have vasovagal syncope and even brief asystole’s) when they attempt to vomit. 6 It is very important that post-operative emetic control be discussed with the anaesthesiologist and administered before polio survivors go to the recovery room and that additional medication is written as needed in the post-op orders.

Choking

Yet another concern is difficulty swallowing as the patient is awakening. 9 Polio survivors who are aware of having swallowing problems, and sometimes in those without apparent swallowing difficulty, cannot clear secretions and may choke (or feel like they are choking) when they are lying on their backs, still half asleep, as the anaesthetic is clearing. Polio survivors' secretions need to be monitored in the recovery room and they should be positioned on their side if possible so that secretions can drain.

Pain

The single most troublesome problem after surgery is pain control. A number of studies have shown that many surgical patients are under-medicated for pain. Under-medication is a serious problem for the post-polio patient since two research studies have shown that polio survivors are twice as sensitive to pain as those who didn't have polio. 8 Increased pain sensitivity is apparently related to poliovirus damage to endogenous opiate-secreting cells in the brain (Para ventricular hypothalamus and periaquiductal gray) and spinal cord (Lamina II of the dorsal cord). 4,8

Rule 2 for Pain: Polio survivors need 2 times the dose of pain medication for 2 times as long. Polio survivors are known to be extremely stoic and are very unlikely to abuse or become dependent upon narcotics.

RECOVERY

In keeping with the "get 'em up, move 'em out" trend in medicine, there will be the tendency to get polio survivors up and walking almost immediately after surgery. This is not advisable for a number of reasons. When polio survivors reach the nursing unit, they may still be twice as sedated from the anaesthetic as are other patients. Since polio survivors need a very clear head to be able to control their weakened, polio- affected muscles to stand and walk, a fuzzyheaded polio survivor is at serious risk for falling. Even if a polio (3 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org

Rev. 2016) survivor's head is clear, the anaesthetic or other drugs may have temporarily weakened or even paralysed the muscles needed to stand and walk. What's worse, the surgery may have cut muscles (especially abdominal muscles) that substitute for muscles paralysed by polio (it is often muscle substitution that actually allows polio survivors to stand and walk, even though the muscles that are typically needed to walk were permanently paralysed). Not only will post-polio patients be unable to stand or walk, they may also be unable to even move to position themselves in bed. Polio survivors may also have low blood pressure after surgery that could itself cause light-headedness, fainting and falls.

Rule of 2 for Recovery: Polio survivors should stay in bed 2 times longer than other patients.

Under any circumstances, polio survivors should get up slowly, first sitting up in bed, then sitting with feet dangling, then getting into a bedside chair with assistance, then standing with assistance and finally walking with assistance and appropriate assistive devices. With the necessity of additional bed rest, anti-embolism stockings and medication to prevent blood clots may be a prudent precaution. Gentle physical therapy in bed may be advisable to maintain range of motion and for stretching, since polio survivors are prone to developing painful muscle spasms if they are not up and moving.

Rule of 2 for Length of Stay.

Polio survivors need to stay in the hospital 2 times longer than other patients. While polio survivors may become deconditioned with bed rest somewhat faster than other patients, because of autonomic nervous system damage, the dangers of getting them up and walking too quickly far outweigh those of moving too slowly. Polio survivors have learned to be very aware of what their bodies can and can't do. They are the best judges of when they can move, stand and walk safely.

Nursing Care and Nurse Caring

Polio survivors often have difficulty merely being in the hospital. They may have insomnia, anxiety, and even have panic attacks. These symptoms are easy to understand when it is remembered that as young children, polio survivors were ripped away from their families and admitted to rehabilitation hospitals for months or even years. 2,10,11 Post-polio children underwent multiple surgeries and painful physical therapy, procedures administered often without explanation and certainly without their consent.

Many post-polio patients have had multiple experiences of psychological, physical and even sexual abuse at the hands of hospital staff. Questions or complaints about painful and frightening therapies were not infrequently met by staff anger or punishment. Patients report having been locked in dark closets overnight when they asked questions, spoke out or cried. Necessary nursing care could be withheld for no apparent reason.

Many post-polio children were slapped and some were actually beaten with rubber truncheons by physical therapists to "motivate" them to stand up and walk. 10

It is not surprising that polio survivors can be terrified of again becoming powerless patients at the mercy of hospital staff.

Nursing staff's appreciation of the childhood trauma polio survivors experienced at the hands of medical professionals and taking a moment to actually listen and respond to the real needs of the adult post-polio patient, will go far toward making the patient feel safer and more comfortable during their stay.

RETURNING HOME (There is another Rule of 2 for Returning Home):

Rule of 2 for Work: Polio survivors need 2 times the number of days of rest at home before they return to work or household duties.

For all of the reasons described above, the entire recovery process takes longer for polio survivors. It is not uncommon for typically overachieving, For all of the reasons described above, the entire recovery process takes longer for polio survivors. It is not uncommon for typically overachieving, hyperactive Type A polio survivors, who were taught as children to "use it or lose it," to return to work or household duties the day after they return home from the hospital.10,11 Polio survivors must be encouraged to rest and to return to activities slowly, especially if they are somewhat deconditioned and feel weaker or more fatigued post-op. Polio survivors should ask their surgeon for a note that allows them to stay home from work twice as long as the typical patient. (4 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016)

POST-OP PPS?

The 1985 National Survey of Polio Survivors has shown that emotional stress is the second most frequent cause of PPS (after physical overexertion).11 Certainly, there are few emotional or physical stressor more potent than surgery. So, polio survivors should expect some increase in fatigue and muscle weakness resulting from the combination of the physical and emotional effects of the surgery, anaesthesia, other medications, and bed rest.

However, only a handful of post-polio patients permanently lose function after surgery. Strength or endurance lost after surgery are typically recovered. To aid recovery, gentle physical therapy may be advisable. Passive stretching, range of motion exercises and slowly increasing endurance are more valuable than muscle strengthening exercise which can actually cause muscle weakness. Especially if a polio-affected part of the body has been operated on (stomach, back, arms or legs), a physiatrist who is thoroughly knowledgeable and experienced about the care of polio survivors and PPS should be consulted before surgery so that a post-op rehabilitation plan can be in place. A short stay in a rehabilitation hospital after surgery (especially after back or leg surgery) may make polio survivors recovery safer, faster and more complete. Polio survivors need to remember the:

Rule of 2 for Feeling Better: Polio survivors need 2 times longer to feel "back to normal" again.

CONCLUSION

All of the "Rules of 2" are suggestions for polio survivors and the surgical team; they are not a substitute for specific information about the individual patient and communication among all members of the treatment team, including the patient. All polio survivors must be evaluated and managed according to their individual needs. Please take the time to read the following references so that you will be fully knowledgeable about and be able to help meet polio survivors' special needs.

Polio survivors pre-op checklist

Give this list of the articles in this article to your surgeon and discuss:

· Pre-op lung tests with measuring of carbon dioxide.

· Possibly having lower blood volume and blood banking or bloodless surgery?

· Authorization for a longer stay in the hospital if needed.

· Orders for post-op anti-vomiting medication.

· Positioning and cushioning on the table during surgery.

· Orders for staying warm in the recovery room.

· Difficulty clearing secretions in the recovery room and on the nursing unit.

· Orders for increased dose of pain medication.

· Physical therapy for stretching and range of motion in hospital.

· Placing articles about polio in the medical chart.

RREFERENCES

1) Bruno RL. Ultimate burnout: Post-polio sequelae basics. New Mobility, 1996; 7: 50-59.

2) Frick NM, Bruno RL. Post-Polio Sequelae: Physiological and psychological overview. Rehabilitation Literature, 1986; 47: 106-111.

3) Bach JR, Alba AS. Pulmonary dysfunction and sleep disorder breathing as post-polio sequelae: Evaluation and management. Orthopedics, 1991; 14: 1329-1337.

4) Bodian D. Histopathological basis of clinical findings in poliomyelitis. Am J Med. 1949; 6: 563-578.

5) Bruno RL, Frick NM, Cohen J. Polioencephalitis, stress and the etiology of Post-Polio Sequelae. Orthopedics, 1991; 14: 1269-1276.

6) Bruno RL, Frick NM. Parasympathetic abnormalities as post-polio sequelae. Archives of Physical Medicine and Rehabilitation, 1995; 76: 594.

7) Bruno RL, Johnson JC, Berman WS. Vasomotor abnormalities as Post-Polio Sequelae. Orthopedics, 1985; 8:865-869.

8) Bruno RL, Johnson JC, Berman WS. Motor and Sensory Functioning with Changing Ambient Temperature in Post- Polio Subjects. In LS Halstead and DO Wiechers (Eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation, 1985

9) Bucholtz DW, Jones B. Post-Polio dysphagia: Alarm or caution. Orthopedics, 1991; 14: 1303-1305.

10) Bruno RL, Frick NM. The psychology of polio as prelude to Post-Polio Sequelae: Behavior modification and psychotherapy. Orthopedics, 1991; 14: 1185-1193.

11) Bruno RL, Frick NM. Stress and "Type A" behavior as precipitants of Post-Polio Sequelae. In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987. 6 Preventing Complications - Polio Survivors & Surgery Richard L. Bruno, HD, PhD www.papolionetwork.org Rev. 2016

Hydrotherapy session at the Repat pool

The Polio SA committee is excited to announce that our members can attend a hydrotherapy session at the Repatriation General Hospital pool, off Goodwood Road. If you are interested in attending the sessions, held every other Thursday from the 31st January at 1pm please contact Peter by clicking on the link below.

You may be eligible for the SA Medical Heating and Cooling Concession!

If you have medically diagnosed Post Polio Syndrome you may be eligible for the SA Medical Heating and Cooling Concession.

The Medical Heating and Cooling Concession is an energy concession assisting South Australians on a fixed or low income who have a qualifying medical condition requiring the frequent use of heating or cooling in the home to prevent the severe exacerbation of their condition.

Polio Survivor Information Sessions

Polio Australia will be hosting a South Australian information session in May in Berri

15th May 2019 – Berri

o  Location: Berri Hotel Riverview Drive, Berri

o   Time: 2:30 - 4pm

The information session will cover

• Current information about the Late Effects of Polio

• What to tell your health professional

• Self-management strategies

• Q&A

• Local connections

To book or for more information

The information sessions will be hosted by Stephanie Cantrill of Polio Australia. If you would like to attend or for more information please send an email to Stephanie by clicking here

Polio Australia will be hosting two South Australian information session in February:

23rd February 2019 – Naracoorte

o  Location: Naracoorte Public Library, 165 Smith St, Naracoorte

o   Time: 9.30am - 11.00am

24th February 2019 – Mt Gambier

o   Location: North Gambier Football & Netball Club, Vansittart Park Commercial St West, Mt Gambier

o   Time: 2.30pm - 4.00pm

The information session will cover

• Current information about the Late Effects of Polio

• What to tell your health professional

• Self-management strategies

• Q&A

• Local connections

To book or for more information

The information sessions will be hosted by Stephanie Cantrill of Polio Australia. If you would like to attend or for more information please send an email to Stephanie by clicking here

Trial to establish a private hospital clinic for polio survivors in Adelaide

Griffith Rehabilitation, based in Hove, are looking to establish a specific service for polio survivors. They are interested in running an intensive polio clinic in January 2019 to see if there is demand for doing this on a continual basis.

Eligibility

This is a Private Hospital. All participants would need to have Private Hospital health fund coverage. There are usually no out of pocket expenses, however checks are completed for each participant to identify any specific exclusions or co-payment rules that may exist with some funds so people can make an informed financial choice. Please note, they are unable to advise on eligibility/costs with the interactions outside of private health cover (i.e. the NDIS).

A GP referral is required. Griffith Rehabilitation can guide someone through this process.

To be admitted into the program, participants need to be medically stable and able to participate in a short stay, individualised rehabilitation program. All participants are admitted under a Rehabilitation Physician who will oversee each rehabilitation program.

The program is aimed at people who can complete 30 minutes of rehabilitation over the course of a day. This program is not set up for someone with a respirator, but can include people who use of oxygen via a concentrator or cylinder.

For people with more significant needs, there is another small group program available at Griffith Rehabilitation Hospital.

Proposal

Participants would receive an assessment and a program that includes fatigue management, pain management, appropriate reconditioning exercise, hydrotherapy, balance/falls prevention and other services which may become apparent through the initial assessment and goal setting.

An overnight stay for 5, 6 or 7 days (this is flexible). Griffith is seeking feedback on what may work best from participants to develop something that will work.

All meals are provided on site.

Register your interest

Please click on this link to register your interest in participating in this program.

About Griffith Private Hospital

Griffith Rehabilitation Hospital have a multi-disciplinary team consisting of:

• Rehabilitation Specialists

• Medical Officers

• Rehabilitation Nurses

• Physiotherapists

• Occupational Therapists

Other Allied Health staff are also available (e.g. Exercise Physiologists, Speech Pathologist, Dietitian, Podiatrist, Psychologist) as deemed appropriate by the multidisciplinary team.

The Hospital is a 46 room, 64 bed, Private Rehabilitation Hospital, staffed 24 hours per day, 7 days per week with highly skilled nursing staff. Allied Health rehabilitation staff are onsite from 8.00 am to 4.30 pm (Mon to Fri); 8.30 am to 3.00 pm (Saturday) and approximately 3 hours on Sundays.

There are GP’s and Rehabilitation Physicians available at differing times during the week but there are NO staffed after-hours doctors. In the event of a significant medical concern patients are transferred by ambulance to an acute hospital facility for appropriate assessment and care.

Please note, no family members of can stay overnight at the hospital but there are Motels, Caravan Park etc nearby. All participants must also have a known discharge destination.

Growing Up Disabled in Australia - Call for Submissions

Black Inc. is pleased to announce a new anthology in the Growing Up series. 

To view the original post or listen to the story please visit: https://www.blackincbooks.com.au/news/call-submissions-growing-disabled-australia

A new anthology is open for submissions from all writers in Australia who identify as disabled, deaf, Deaf or chronically ill (under the social model of disability).

The collection will be edited by blogger and appearance activist Carly Findlay, author of the forthcoming memoir Say Hello. Carly has been widely published, including in The Guardian, The Age, The Sydney Morning Herald, Daily Life, Mamamia and Frankie.

We are looking for non-fiction pieces that deal with any aspect of growing up chronically ill, deaf, Deaf or disabled. Submissions can be in any manner, tone or style, but should not be academic or scholarly. They should be written in first-person and be honest accounts of lived experience – positive, negative or anything in between.

Editor Carly Findlay says: ‘I want young disabled people to read this anthology and know what’s possible for them, to see that other disabled people have had similar experiences, and to feel the impact of visibility and positive representation. While I have had a life-long chronic illness, I first identified as chronically ill and disabled when I heard other chronically ill and disabled people’s stories.’

A donation from proceeds of the anthology will be given to Children and Young People with Disability Australia.

Submissions should be between 1000 and 4000 words, and must be received by 5pm on Friday, 31 May 2019. Late entries will not be accepted.

Please email submissions to GUD@blackincbooks.com . Submissions will be accepted as Word files or audio files.

FAQ

What is the social model of disability?
According to the social model of disability, disability is socially constructed. This is in contrast to the medical model, where a ‘disability’ is a health condition managed by medical practitioners. According to People with Disability Australia: ‘The social model sees “disability” is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.’

What if I have an impairment or chronic illness but don’t like being called ‘disabled’ / don’t identify as ‘disabled’?
Please submit anyway – and feel free to discuss this in your piece. We know that not everyone agrees on what terms should be used.

Do I need to have been born in Australia?
No – but you should either live here currently or have spent a substantial part of your life here.

What does ‘growing up’ mean?
‘Growing up’ can refer to childhood, adolescence or your evolving identity as an adult.

I’ve never been published before. Does this matter?
No.

Will you accept poetry?
Yes, as long as it is based on your lived experience. Poems should be no longer than seventy lines.

Should I avoid writing about abuse / self-harm / sex / illegal drugs, etc?
We encourage all contributors to write honestly about their experiences. As the anthology is partly aimed at teenagers, during the edit process we may suggest some modifications to avoid unnecessarily explicit content but pieces will not be excluded on this basis.

Where can I go for help to write my story?
The following organisations can offer advice and support:
Accessible Arts NSW http://www.aarts.net.au/
Writers Victoria – Write-ability https://writersvictoria.org.au/writeability
Access 2 Arts SA https://access2arts.org.au/ https://access2arts.org.au/project/writing-me/
Arts Access Australia https://artsaccessaustralia.org/
Belconnen Arts Centre https://www.belconnenartscentre.com.au/
Arts Access Victoria https://www.artsaccess.com.au/
Arts Access Darwin https://artsaccessdarwinblog.wordpress.com/
Access Arts QLD http://accessarts.org.au/ DADAA WA https://www.dadaa.org.au/
Incite Arts https://incitearts.org.au/
Writing NSW https://writingnsw.org.au/support/writers-with-disability/
Scope Australia writers program from 2015 https://www.scopeaust.org.au/news-event/calling-writers-artists/’

Can I write under a pseudonym?
Yes, but you must sign your contract using your real name so please give us both on submission.

Will I receive payment if my piece is accepted?
Yes, all contributors will be paid.

When will I find out if my piece has been accepted?
Due to the large number of submissions, selection can take quite a long time. You will receive a response letting you know if your piece has been accepted or not by 1 October 2019.

If you have further questions, enquiries should be addressed to Kirstie Innes-Will: kirstie@blackincbooks.com

Summer 2018 Newsletter

From the President

Polio Australia Information Session

Polio Australia, hosted an information session at “The Hub” on Saturday 6th October. Experts discussed exercise guidelines and how occupational therapists, rehabilitation physician and physiotherapist can help us all. How the NDIS and My Aged Care systems work and we received an update on the Sarcopenia Project. The 56 who attended all took something away to help them in the future. If you missed the session, visit www.poliosa.org.au/resources to hear the recordings.

Health and Wellness Retreat

Polio Australia held the Health and Wellness Retreat in Glenelg from the 11th- 14th October, and I was lucky enough to attend my first Retreat. The first official event was held on Thursday afternoon when those who were able to, took part in the 10th Annual Polio Australia ‘Walk With Me’. Around 40 “walkers” wearing the official orange neckerchief walked along the Glenelg esplanade from Jetty Road to Pier Street, a great experience. Thursday night saw Parliamentary Friend of Polio Australia and Member for Hindmarsh, Steve Georganas officially opening the Retreat. A big thank you to him.

The next three days were filled with a range of activities, surv ivors sharing their story and professionals sharing helpful advice. We had wonderful dinners with people from across Australia, New Zealand and Taiwan. The best fun of all was the sing/dance along after the Saturday night dinner. The whole entourage joined in as well as they could, Lyn Lillecrapp could certainly swing that wheelchair! Thank you to the “Celtic Music Club of South Australia” for the enjoyable music, their soloist could really sing.

Hydrotherapy Sessions

Polio SA is planning a second hydrotherapy session at the Repat pool, giving our Southern Members the opportunity to benefit from hydrotherapy. This is something the Committee has been working on since we lost the use of the Balyana Pool 5 years ago. To allow everyone to benefit, members will have a maximum of four (4) massage vouchers per year. Each voucher is worth $40, delivering members $120 value for your subscription of $15.

Volunteers wanted

If you, a family member or friend have some spare time and energy, please contact me. The more hands on deck, the more we can do to inform and support our community.

Member services: After many years of friendly efficient service Maureen, who’s been distributing treatment vouchers and answering the phone, needs to retire, through age and ill health. This role involves talking to members and making sure they get their vouchers.

Website and newsletter: Secondly we are looking for two people to compile/edit this newsletter and our website news section. Our new website is easy to use, and only requires basic computer skills - if you can make a Facebook post, you can do it! The people at Community Business Bureau will also provide training.

Brett Howard, President, Polio SA

bihoward@bigpond.com | 0403 339 814

3 children paralysed by a Polio-like illness in Montreal

This article was taken from The Province newspaper, Canada.

This year, six children in Quebec are suspected of having developed acute flaccid myelitis, although that number is not considered official because of a lag time in verifying and reporting cases.

Currently, doctors at the Montreal Children’s Hospital are taking care of two children with the debilitating disease, while two others who partially recovered have returned home. At Ste-Justine Hospital, two children are receiving supportive care and are being infused with intravenous immunoglobins to try to accelerate improvement.

Preliminary data in the Montreal area suggest that preschool and elementary schoolchildren are most at risk of developing the illness. At the Montreal Children’s, the average age of the patients is four.

“I’ve been working (in this field) for 14 years and I have not seen this before,” Dr. Christos Karatzios, an infectious-diseases specialist at the Montreal Children’s, said in an interview.

“We do see neurological illnesses, you know. There’s viral meningitis, they can come in with neurological illnesses following a viral infection. But I have not seen this kind of disease, and not only this kind of disease, but three cases in three weeks?”

“I remember texting my wife,” he added. “I was here late every night because I had some weird cases, and I was saying, ‘Another paralyzed kid?’ Something’s going on. So we have this impression that something’s peaking. The surveillance is still ongoing.”

Dr. Christian Renaud, a microbiologist and infectious-diseases specialist at Ste-Justine, emphasized that it’s premature at this point to declare an outbreak in Montreal, along the lines of what has occurred in the state of Colorado. On Oct. 9, the Colorado department of public health confirmed that “as part of an outbreak,” there have been 14 cases of acute flaccid myelitis (AFM).

“If the four actual cases from McGill and our two are confirmed, then it would be a little bit higher,” Renaud said. “It’s kind of difficult to say it’s really an outbreak, but we seem to have more cases this year.”

AFM is not polio, because it’s not caused by the poliovirus. But the disease does affect the grey matter of the spinal cord, as polio does, and it can cause paralysis, too.

At the height of the polio epidemic, the U.S. reported nearly 58,000 cases in 1952, one year before the development of a vaccine. By comparison this year, the U.S. Centers for Disease Control has confirmed 62 cases of AFM out of 155 patient reports.

“CDC continues to receive reports of children with acute flaccid myelitis,” the agency says on its website. “CDC is working hard to find the causes of these AFM cases.”

In general, the CDC notes that less than one person in a million in the U.S. develops AFM each year.

Scientists have not developed a vaccine for AFM, largely because they haven’t nailed down the viruses that cause the disease. In Colorado, 11 patients tested positive for enterovirus A71, one tested positive for enterovirus D68 and two tested negative for enteroviruses.

“While all the patients were hospitalized, nearly all have fully recovered,” Colorado’s public-health department stated. “There have been no deaths.”

Both Karatzios and Renaud warned, however, that some patients who do recover from AFM can suffer from permanent paralysis.

“We know that for D68, A71 polio-like illnesses, after a couple of years, patients still are significantly affected,” Karatzios explained. “We know that poliomyelitis left lifelong neurological sequelae back in the day.”

At the Montreal Children’s, doctors have hooked up the patients to CPAP machines to help them breathe.

One patient at the Montreal Children’s has tested positive for D68 and at Ste-Justine one patient has tested positive for A71. A child who fell ill with AFM in August and who was hospitalized at the Montreal Children’s did not test positive for either virus.

All but one of the affected children live in the Montreal area. The exception is a girl who lives near Gatineau and who was transferred to the Montreal Children’s.

Despite the unusual number of cases, Montreal officials are urging parents to stay calm.

“I think the first thing is, don’t panic,” Karatzios advised. “It’s still quite rare. Even if you do get infected with enterovirus or even the enterovirus D68 or A71, it does not mean that your kid will go on to develop flaccid myelitis or a polio-like illness.”

Enterovirus infections typically arise in late summer and fall. Enteroviruses can be spread through contact with a person’s feces; eye, nose and mouth secretions; and fluid from blisters.

“You have make sure to teach children and yourselves, wash your hands before you put them in your mouth, wash your hands before you eat, wash your hands after you go to the bathroom,” Karatzios said. “Use soap and water or these portable sanitizers with alcohol in them.”

Polio outbreak in Papua New Guinea

Papua New Guinea health authorities have confirmed that the country is experiencing its first polio outbreak in 18 years, after one case of the virus was confirmed in an urban settlement in the country's second largest city.

Key points:

· The virus was first detected in late April, and confirmed in late May

· Experts say the virus is now "circulating" in the affected community

· PNG was certified polio-free in 2000, and has not had a case since 1996

PNG's Department of Health is working alongside the World Health Organisation (WHO) to respond to the outbreak of the potentially deadly virus, which can cause lifelong paralysis in children.

There has been one confirmed polio case in the Lufa Mountain settlement in Lae city, which was first detected in late April.

The victim was a six-year-old boy who developed weakness in his lower limbs, later confirmed to be the result of a polio virus infection.

"We are deeply concerned about this polio case in Papua New Guinea, and the fact that the virus is circulating," the country's health secretary Pascoe Kase said in a statement.

"Our immediate priority is to respond and prevent more children from being infected."

Authorities have confirmed that the polio virus is circulating in the Lufa Mountain settlement, after experts isolated the dangerous virus in stool samples from two healthy children there.

Polio spreads through the accidental consumption of faeces of an infected person, usually through contaminated water or food.

The WHO's PNG representative Luo Dapeng told the ABC's Pacific Beat program that settlements like Lufa Mountain face a greater risk of infection.

"This is an area which has poor coverage of the polio vaccine, poor sanitation, very crowded conditions. That is a high risk area," he said.

Most of the people who live in urban settlements in PNG's cities and towns are migrants from rural areas, who move to urban areas seeking work.

The country has not had a case of polio since 1996, and was certified as polio-free in 2000.

Low vaccination rate an issue

The version of the virus circulating in the settlement is a "vaccine-derived poliovirus", meaning it is a mutated version of the weaker polio virus used in vaccinations.

Vaccine-derived polioviruses are rare, and tend to occur in populations with very low vaccination rates. They develop when children who have not been vaccinated come into contact with the excrement of vaccinated children, and are exposed to the weaker virus.

This is not necessarily a bad thing as this exposure can give "passive" immunity to those unvaccinated children — but it can become very dangerous in communities with low vaccination rates.

The weak polio virus ends up infecting more people, stays alive longer, and eventually mutates into a more dangerous form of the virus capable of causing paralysis.

The WHO and PNG authorities have launched an emergency immunisation campaign to try to prevent other children from becoming infected.

Lae is located in PNG's Morobe province, which reportedly had a polio vaccination rate of 61 per cent prior to the outbreak. Authorities said 845 children had been immunised since the virus was first detected.

The province-wide campaign will also target neighbouring Eastern Highlands and Madang provinces, and will include two rounds of immunisation starting from July 17.

The WHO said it has mobilised $680,000 to support the PNG Government's actions.

The importance of friends with similar disabilities

This article was published online: https://www.psychologytoday.com/blog/de-stressingdisability/201801/the-importancefriends-similar-disabilities

I was surprised when my niece Sophia told me that she had applied for a summer staff position at Landmark College, which she had attended for three weeks the summer between 11th and 12th grades.

At the time, she, who at that time knew everything, had grumbled about how unhelpful the program was, how she hadn’t learned a thing, and that her favourite memories were trips to Brattleboro and the fresh produce and cucumber water available at almost every meal. So I was happy to read her letter of application. She explained that her summer at Landmark was the first time she knowingly had friends with learning disabilities like hers and, also, unlike hers, as she also had enjoyed meeting the students with Asperger’s in the social pragmatics program.

At my niece’s public high school, teachers never shared what other students had disabilities; it was only through noting who else was assigned to the disability resource room during the same class period as her, that she able to identify some other teens with disabilities- and for Sophia, those tended to be highly active boys she considered annoying (she was sure that foot tappers contributed to her inability to focus) or students on the autism spectrum appearing more disabled than she.

Though the Family Educational Rights and Privacy Act (FERPA) is likely well-intentioned, it makes difficult the ability of students to find friends who share one’s disability experiences; its enforced secrecy also perpetuates disability stigma. Thus, I was struck by the research described in the recently published November 2017 article in Rehabilitation Psychology, “Solace in Solidarity: Disability Friendship Networks Buffer Well-Being authored by Arielle Silverman, Ivan Molton, Amanda Smith, and Mark Jensen, of the University of Washington, and Geoffrey Cohen, of Stanford University. Although the two studies they conducted were with adults with legal blindness, muscular dystrophy, multiple sclerosis, post-polio syndrome, or spinal cord injury, there is little reason why the results, succinctly summarized in the article title, would not generalize to adolescents or to those with learning disabilities or mental health issues.

In fact, results of American and European studies comparing adolescents’ relationships with parents and friends suggest that not only are friends highly important in young people’s lives but in many ways, they are even more important than parents.

Classic studies by Reed Larson and colleagues using the Experience Sampling Method indicate that adolescents report that their happiest moments are when they are with friends, and they are generally much happier with friends than with family.

Imagine the emotional support and nurturance students might receive from having friends who can laugh about positive disability-related events and commiserate about bad ones as well as, or in conjunction with, the more common friendship topics of budding romantic relationships, school, and sex (Youniss and Smollar, 1985). However, as Silverman and her co-authors note, “social support” is not always beneficial and may sometimes have detrimental effects, especially if friends are coping poorly or are feeling quite distressed.

For adolescents, too, friends can also be the source of negative emotions such as anger, sadness, frustration, and anxiety, and their attachments to friends leave them emotionally vulnerable (Larson and Richards, 1994). However, connecting with peers who experience disability may help normalize disability-related challenges. As Silverman and colleagues explain, friends with disabilities can offer invaluable emotional support as well as tangible help and information on how to cope with disability-related stressors. And certainly, there is a greater likelihood that a friend with similar disabilities might “get” you in a way that those without disabilities do not. Thus, school counselors and school psychologists might want to consider introducing students, with their permission, to peers who share their disabilities and maturity level, not necessarily with the expectation that the kids will become best friends but rather as peer to peer support.

One exemplary program is Eye to Eye, which matches college mentors with middle school mentees who participate in group programs that encourage not only mentoring relationships but also those between peers; all students have voluntarily self-identified as learning disabled by just participating in the program. Another model is Active Minds, which aims to empower college students to speak openly about their mental health in order to educate others and encourage help-seeking.

Whatever the mechanism, it is important for those who work with students to encourage friendship building between those who share similar disabilities. As Sophia, in hindsight now strongly endorsing the Landmark high school summer program, summarized it, “That was the summer I finally fit in!”