NEWSLETTER l AUGUST 2018

 FREE PHONE: 0800 4 POLIO (0800 476 546)  I  P O BOX 791, NEW PLYMOUTH 4340

CHARITIES COMMISSION NUMBER: CC 25022

Polio NZ is an Incorporated Society dedicated to seeking support for people who have had poliomyelitis.  It does this through information
shared and where possible, assistance to Polio NZ members and their families.  
The Society's Board of Management meets regularly by teleconference, and occasionally in person such as at the Annual General
Meeting of members coinciding with the Retreat usually held the first week of October.  
Polio News is published three times a year (April, August and December) and sent to all members either by mail or email.
Contributions are welcomed and the deadline for copy is the 5th of the month before publication. 

RETREAT UPDATE
Isn’t it great knowing that in about 8 weeks we will be
gathering together again in Rotorua! Meeting old and new
friends in ‘our’ place (QE) and going to workshops and talks,
sounds so appealing.

Luckily there are still some vacancies left. If you sent in an EOI
and are not able to attend, please let us know so we are not
holding a place for you. As registrations arrive, we are filling the
accommodation spread sheet and this is something that we
would like to have completed shortly so please do not delay.

Please remember there will be a 15% discount of all the fabulous treatments the spa offers for those who have registered for
the retreat. It is strongly recommended that if you are interested in taking advantage of this great offer that you do so well in
advance of the retreat. Ideally you will book online as soon as possible by going to https://www.qehealth.co.nz.

Be sure to check the retreat program so you can book your treatment during a time when you won’t miss the topics that interest
you.

We have booked the karaoke machine and there are 2000 songs to choose from so there will be something for everyone! As
well, we are holding an auction to raise money to go towards Dynamic Braces. These braces will potentially improve mobility
and decrease medical issues for many of our members. Please consider appropriate items to donate such as artwork, knitting,
quilting, jewellery, photography, pottery etc. If you are traveling by bus or plane and your item is quite large, let us know and
we MAY be able to assist you. We hope to use a professional auctioneer just to add to the festivities!

We are now in the very final stages of organizing the retreat and are confident that it will be a memorable weekend. Hope to
see you there!

Retreat Committee
 Official Mailing address:
P.O. Box 791 New Plymouth 4340
Toll free: 0800 4 POLIO or 0800 476 546
e-mail: secretary@polio.org.nz
Website: www.polio.org.nz

President:
Barry Holland
Ph 09 520 3679
e-mail: president@polio.org.nz

Secretary and Treasurer:

Jeannette Aldridge
P O Box 791
New Plymouth 4340
Toll free: 0800 4 POLIO or 0800 476 546
Ph 06 758 0507
e-mail secretary@polio.org.nz

Newsletter Layout:
Hilary Cross
e-mail: hilarycross6@gmail.com

Polio NZ Inc. Bank Account:

For subscriptions or donations.
SBS 03-1355-0383041-00

________________________________________________________________
Charities Commission Number: CC 25022

RIP JB MUNRO QSO

by Jeannette Aldridge,
Facebook Polio New Zealand
6 June 2018 
It is with tears that I write to acknowledge that JB Munro died aged 81 on June 4. It is a poignant sorrow of a little Scots man
that moved mountains with his sheer will and determination to leave the world a better place than he found it, and he did
exactly that. JB stepped down from major responsibilities a couple of years ago acknowledging that his massive brain was
deteriorating with one of those things that we don't know much about but happens all too often, even to the very best of us.

He faced his end directly and as matter-of-factly as he did everything. Diane and I helped move boxes from his garage in
Mosgiel as he tried to hand over a fraction of a lifetime of work. I feel so sad that he has gone, and so relieved that he didn't
linger. I learned this morning, and I've been trying not to remember all day. But it is true, and it also comes at a time when
everything JB had worked for is again making progress. My thoughts and love go out to Val and their children.

(Editor’s note: A member of the Board travelled down to attend JB’s Funeral Service)
Much has been written about JB in our Newsletters in previous years.

See also https://www.stuff.co.nz/national/health/104709087/jb-munro--a-human-dynamo-on-behalf-of-the-disabled

 From the President's Desk
For nearly 30 years Polio NZ has been endeavoring to get the public health system to provide a
comprehensive assessment and on-going care plan for those who have had polio.

I’m excited to tell you we have had a breakthrough. Work started by Gordon Jackman when he
was our National Programme Manager has resulted in the Canterbury DHB introducing a clinical
pathway for the late effects of polio.

Health Pathways is web-based information portal supporting primary care clinicians to plan patient care through primary,
community and secondary health care systems within Canterbury. It is like a 'care map', so that all members of a health care
team – whether they work in a hospital or the community – can be on the same page when it comes to looking after a person.
Health Pathways now includes the late effects of polio.

Health Pathways are designed to be used at the point of care, primarily for General Practitioners but is also available to
Hospital Specialists, Nurses, Allied Health and other Health Professionals within Canterbury.

This is a huge step forward because the constant complaint of our members for 30 years has been that their doctor knows
nothing about polio! Now every doctor in Canterbury has access to all the information they need without leaving their desk!
Canterbury is the first DHB to use this system which is intended to be available through all DHBs eventually, and interest has
been shown from Capital Coast and Hutt DHB and Waikato DHB.

My letter with your membership invoice explained our efforts to improve orthotic services in New Zealand by getting a small
cohort of people using the carbon-fibre dynamic braces so we can monitor their progress and develop case-studies that
demonstrate their cost-effectiveness. Our goal is to have this technology be the standard for orthotics in New Zealand
provided by the Ministry of Health. With help from the Freemasons Foundation we have brought dynamic braces expert
Marmaduke Loke here three times during which time he has provided training for orthotists in the public health system and
private practice and assessed and identified a small group of people who will be suitable for this project. We are engaged in
fundraising to help some of the polio people get these braces as they are currently very expensive. The information we will be
able to gather from them will be critical in securing the support of the Ministry of Health to do what needs to be done to make
reliable and effective orthotics available to all New Zealanders.

Another exciting development, also in Canterbury, is the cooperation between The Duncan Foundation and Multiple Sclerosis
& Parkinson’s Canterbury. Multiple Sclerosis & Parkinson’s Canterbury have a gymnasium specifically equipped for people
with neuromuscular disorders and this gymnasium has been made available for a specific exercise programme for people who
have had polio. This class is facilitated for us by physios from On the Go Physio who have undergone training in the late
effects of polio. This is a unique opportunity for Polio NZ members in Canterbury as such a facility is not presently available
anywhere else in New Zealand. If you would like to discuss being involved with this, please call 0800 000 856 to make an
appointment to discuss your needs. Tell them you are a member of Polio NZ

There is a lot happening in Canterbury and so the Board is coming to Christchurch on Saturday 18 August to meet with people
who are involved in this progress and to talk with members. If you would like to come and have lunch with the Board and
discuss the work of Polio NZ in Canterbury, please call our FREEPHONE 0800 476 546 or email secretary@polio.org.nz so
we can arrange catering. We will be meeting in the Christchurch Airport area.

The retreat at QE Health in Rotorua is all set to go and the AGM will be at the retreat venue at 2pm on Saturday. All members
are welcome even if not on retreat, but if you can let us know you are coming we can be ready with the cup of tea afterwards.

The Board has been discussing “succession planning” to ensure Polio NZ remains strong and progressive. We need to
strengthen the Board’s fundraising capacity and sustainability of our administration and compliance responsibilities as a
registered charity. We invite nominations for the Board from people with skills and experience to contribute to our fundraising
efforts and to support the Secretary and Treasurer roles. This is important because of the vulnerability of our dependence on
those roles.
From the President's Desk continued ......
I want to thank the hundreds of people who have already sent in their $17.25 (incl GST) for their membership which goes
some way to covering the cost of producing and mailing the Polio News three times a year. We are very grateful to our team of
volunteers that produces the Polio News.

We regret we had to add GST to the membership fee but we were having to pay GST on the $15 which meant we only got
$13.04 which definitely didn’t cover the cost of the Polio News not to mention any of the other work we do to get information
out to people. Only four people chose not to pay the GST on to the subscription but more than half of the hundreds that paid
the $17.25 also added a donation ranging from $5 to $200 to their payment. It is a wonderful feeling to see how much people
support what we are trying to achieve. I also thank the people that sent letters with their subs saying they wish they could give
us more. Your letters of support mean as much to us as your dollars, so thank you.

Best wishes,

Barry Holland MNZM,

________________________________________________________________
President, Polio NZ Inc.

The above invite is: Julie Rppe, from the Duncan Foundation is holding a clinic in Palmerston
North on Friday 21st September 2018. If you interested please register on the
www.duncanfoundation.org website or contact me Gordon Jackman via
email dalandbrian@outlook.com

________________________________________________________________
The Duncan Foundation sent out a survey, if you have not had a
chance to complete this the emailed link is still valid. If you are more
comfortable completing this verbally please feel free to call
Gordon Jackman on 021 101 8948
 FATIGUE 
Fatigue is one of the most frustrating and least understood
outcomes of late effects of polio, by us and family members who
don’t get why we can no longer manage walking round a
supermarket; deal with large and noisy crowds; think rationally or
remember what was said yesterday.

From Post Polio

Health International
Losing a grip

FATIGUE is one of the most common symptoms expressed by polio survivors with a variety of possible causes.

Fatigue is a nonspecific term that polio survivors often use to describe decreased muscle stamina and endurance. Survivors
also describe a global or generalised exhaustion that can affect mental alertness. Many polio survivors describe a major
decrease in stamina following illness, surgery or trauma, and recovery may take three to four times longer than for people
without prior polio.

To treat fatigue adequately, first identify the contributing factors. For example, many medical conditions may result in fatigue.
Some of the more common medical disorders associated with fatigue include anaemia, diabetes, thyroid disease,
fibromyalgia and depression. Dealing with disability and lost function is emotionally draining for many and can lead to
depression with decreased attention, decreased ability to concentrate and increase in fatigue.

Fatigue occurring upon awakening usually reflects sleep disturbances that can be the result of a variety of conditions
including musculoskeletal pain, restless leg syndrome, or respiratory abnormalities, such as sleep apneas and difficulty
breathing due spinal curvatures. Survivors may have new respiratory muscle weakness, which results in inadequate
breathing and ultimately excessive fatigue.

Prescription medications such as beta-blockers and sedatives contribute to feelings of fatigue. Narcotics used for treatment
of chronic pain may also disturb sleep and can contribute to a feeling of fatigue and irritability. Chronic musculoskeletal pain
can also lead to de-conditioning, another contributing factor to general fatigue. While staying
"in shape" or "in condition" is important, each survivor must find the balance between overworking polio muscles
and appropriate conditioning exercise. A safe approach is for survivors to start a realistic supervised exercise program and
slowly add additional exercises and repetitions to it.

The management of fatigue follows many of the same principles as interventions for weakness and pain. Thus, improving
one symptom will often result in an improvement in others.

It is important first to identify what is contributing to the fatigue. Many health care providers use a fatigue scale to establish a
baseline score or a survivor's current type and level of fatigue. They use the scale again to measure how beneficial their
suggestions, such as braces, canes and breathing machines, are. With time and persistence, most people DO feel better.

You should encourage your parent or friend to make meaningful changes in their daily activities to help reduce fatigue
.
Fatigue (PHI's Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors)
 GLOBAL POLIO ERADICATION INITIATIVE
Summary 2018  by Susan Kerr
Only three countries remain where Polio is endemic Afghanistan, Pakistan and Nigeria.
Of the three strains of the virus, (type 1, type 2, and type 3), wild poliovirus type 2 was
eradicated in 1999 and no case of wild poliovirus type 3 has been found since the last
reported case in Nigeria in November 2012.

Sadly, after more than two years without the detection of wild polio in Nigeria, the Government reported three laboratory
confirmed cases of wild poliovirus type one (WPV1) in 2016. In addition to the wild polio cases reported, a vaccine-derived
poliovirus type 2 (cVDPV2) was also detected in specimens collected from a healthy household contact of one of the WPV1
cases.

In many countries, polio vaccine includes live, attenuated viruses which breed in the recipient’s intestines and then enter the
bloodstream, thereby triggering a protective immune response. An attenuated virus is one that has been weakened to a form
which is not hazardous to health but remains potent enough to provoke the immune system into providing lifelong cover
against real infection. Occasionally, though (less than once in every 17m vaccinations), the replication of such an attenuated
virus throws up a mutation which creates a new strain.

According to World Health Organisation (WHO), a country is regarded as polio free if no cases have been detected for a year.
However, no cases of the virus have been reported in the last twenty months in Nigeria, but it is feared that it is still possible
polio circulates under some prevailing circumstances as was the case, in 2016. Even a single case is considered an epidemic.

Throughout his year, there has been a flurry of activity on our Facebook page concerning suspected Polio outbreaks. In June
there were unconfirmed reports of a 34 month old child contracting polio in Venezuela, but final laboratory tests confirmed the
cause of the paralysis was not wild poliovirus nor vaccine-derived polio.

Again in June, 3 cases of polio were confirmed in Morobe, Papua New Guinea. These were derived from an oral vaccine which
uses the weakened polio virus. This means that at least 80-85% must be fully immunised to ensure that polio cannot spread
among unvaccinated individuals. In Morobe province, where the three children involved live, just 61% of children have
received the recommended course of vaccinations. In Papua New Guinea. Less than half of the country’s population has
access to clean water and 81% do not use proper toilets.

Now polio continues to spread across the Democratic Republic of the Congo despite efforts to contain the disease, sparking
concerns it could spread into neighbouring countries and perhaps even further across the African continent. 12 Jul The
Telegraph reported that 29 children have been paralysed in the outbreak which was first reported in June 2017 had since
spread to several provinces of the country.

Almost as soon as cVDPVs were discovered in 2000, the World Health Assembly in Geneva declared that all use of OPV must
stop when the wild virus was gone. In 2016, with the threat of cVDPVs looming larger - they now cause more cases of
paralysis than the wild virus. GPEI decided waiting was no longer an option. By then, poliovirus type 2 had been eradicated in
the wild, which meant that every type 2 virus originated from the vaccine itself.

According to WHO, fears the disease could spread are compounded by population movements between Ituri, Uganda, Central
African Republic and South Sudan as well as the upcoming rainy season which helps the virus transmit more easily.

To fight these outbreaks, GPEI created a closely guarded stockpile of a new monovalent OPV type 2 (mOPV2), which can only
be released with the approval of the director-general of WHO. If mOPV2 is used judiciously and sparingly, it can stop an
outbreak without starting a future one, Zaffran says.

Speed is essential because population immunity to the type 2 virus is waning now that it has been removed from the vaccine,
setting the stage for an explosive outbreak. The type 2 vaccine has been released to fight outbreaks in 10 countries, and so far
the strategy seems to be working, although a type 2 outbreak in Syria paralyzed 74 children before coming under control last
year. References to article on following page:
 Reference from article: GLOBAL POLIO ERADICATION INITIATIVE

https://leadership.ng/2018/04/02/dangote-intensifies-effort-in-making-nigeria-polio-free/

http://polioeradication.org/news-post/update-on-suspected-polio-case-in-venezuela/

https://www.economist.com/science-and-technology/2018/06/30/polio-has-been-reported-in-papua-new-guinea

https://www.telegraph.co.uk/news/2018/07/12/uncontrolled-polio-outbreak-continues-spread-drc/

http://www.sciencemag.org/news/2018/07/polio-outbreaks-congo-threaten-global-eradication
.

________________________________________________________________
WALKING INTO THE FUTURE
By Brian Robinson
Early 2000’s I started to notice changes that were causing me to have some pain
issues with my leg joints, mainly right knee and my polio leg left ankle. My left
foot was rolling outwards causing my ankle to feel like it was dislocating. After a
visit to the orthoptist, I was fitted with a plastic orthotic which stopped my foot
from rolling outwards but did not really do anything for my stability. I blundered on
thinking that was it.

Ten or so years later I was getting arthritic pain in my right knee, and when
standing in one spot for long periods, the pain on moving off was quite
excruciating. Visits to orthopaedic surgeons and X-rays showed arthritis and bone
on bone. My left ankle, also on X-ray, showed deterioration in the joint. After a lot
of asking for something to be done the surgeon decided to do a full right knee
replacement. To fix the ankle they would have to fuse the ankle joint so it was
decided to leave at present.

2013 saw the knee replacement done. Up until then I was hyper-extending my leg to try and stay stable and to prevent falls.
In four years the replacement has started to fail.

Luckily, in 2016 I met Julie Rope from Rope Neuro Rehabilitation while in Hamilton and she put me in touch with Jessie
Snowden from On the Go Physio in Christchurch. A physio assessment session was organised in Nelson in 2017 where five
polios were assessed including me. Jessie videoed my walking and gait, sent it to Gordon Jackman who in turn sent it to
Marmaduke Loke, Dynamic Bracing Solutions.

Marmaduke decided that I would greatly benefit from Triplaner Bracings and in May, castings of my legs were taken in
Wellington at The Artificial Limb Centre. Full KAFO’s were recommended for both legs. At the moment, the bracings are
being made in America with the view of having them fitted around September/October this year.

It is going to be a huge journey learning to walk differently and training the brain and body to get out of the old habits that it’s
been used to. Many people are showing great interest and are excited in my progress including two physios at Nelson
Marlborough DHB.

I have many people to thank and in the next issue of the Newsletter I will have a list and a report on my progress.
 NOTICE OF ANNUAL GENERAL MEETING
POLIO NZ INC.
Registered Charity No: CC 25022; Incorporated Society No: 485143; IRD No. 62-049-111
All donations over $5 are tax-deductible; Bank: SBS Bank 03 1355 0383041 00

SATURDAY OCTOBER 6, 2018 at 2PM

QE Health and Wellness Spa, 1073 Whakaue Street Rotorua
ALL MEMBERS WELCOME
_________________________________________________________________________
AGENDA
1. Welcome by Chair Barry Holland, MNZM
2. Apologies
3. In Memory of departed members.
4. Roll Call
5. Proxies
6. Minutes of previous AGM and Matters Arising
from Minutes
7. Presentation of the Annual Report, including
Financial report
8. Election of Officers, Board Members, and
confirmation of Patrons.
9. Appointment of Reviewer: Ann Hatch of New
Plymouth
10. Correspondence
11. Remits
12. Motions
13. Any other business

Afternoon Tea will be served after the AGM

Current Board Committee:

President: Barry W. Holland, MNZM Brent von Sierakowski (Auckland)

(Auckland) Brian Robinson (Nelson)
Vice President: Sue Griffin (Waikato) Steve Griffiths (Auckland)
Treasurer: Jeannette Aldridge (Taranaki) Susan Kerr (Picton)
Secretary: Jeannette Aldridge Marlayna Zucchiatti (Rotorua)

For nomination, proxy, or postal voting forms please contact the Returning Officer Jeannette Aldridge
secretary@polio.org.nz PO Box 791 New Plymouth 4340 FREEPHONE 0800 476 546 (0800 4 POLIO)
 PLANING FOR THE FUTURE
.
bY Jeannnette Aldridge
It has been a very exciting few years on the Board of Polio NZ Inc. and it has been my great pleasure and honour to serve in
the capacity of Secretary and Treasurer.

In 2014 the membership that gathered at the conference in Christchurch set the course for the organisation for the next five
years and a comprehensive Strategic Plan was developed to achieve the goals set. To put it in a nut shell, the membership
wanted access to better informed health professionals and better orthotics.

These desires had not changed in 25 years and were the very reasons the organisation was founded. It was very clear that
as a 100% voluntary organisation with no funding from the government, we could not achieve our goals without collaboration
with others, – and through a chain of serendipitous events, The Duncan Foundation was established with a commitment to
providing health professional education, and assessment clinics for people who had polio, and the most advanced orthotic
technology has now been introduced to the orthotists in public and private practice. We have one DHB running the pilot of a
managed clinical pathway for the late effects of polio which will be rolled out through all DHBs when it is refined.

There is still a lot to do because to make this progress sustainable, the Ministry of Health must pick up the mantle so that
polio-educated health professionals and useful, affordable orthotics are available to all New Zealanders. This is our mission
for the next year: - along with putting considerable time and effort into fundraising, we must get a small cohort of people using
modern orthotics to be able to demonstrate the cost-effectiveness of upgrading the orthotics provided by the Ministry of
Health.

Fortunately, we currently have an effective and cohesive Board that works well together to achieve our goals. The only
person we don’t have on the Board at present is someone with professional fundraising experience who can focus
exclusively on this aspect of our work. We would dearly love to receive a Nomination from someone with these skills,
experience, and networks.

The other serious issue for the memberships’ consideration relative to new Board members this year is “succession
planning”. I came on the Board in 2013 for a very specific reason:– to ensure that the information passed to us from GM
Jegasothy at the conference that year was translated into clinical services available here for people who have had polio. That
has been done via the clinics established by The Duncan Foundation.

As mentioned above, we still have work to achieve with the Ministry of Health and that will be a major focus for the coming
year. I am making a commitment to Polio NZ Inc. to serve as Secretary and Treasurer for another year to ensure that the
Board has the full support it will need to complete what we have started.

In a nutshell, what we need to achieve over the next 12 months is an agreement with the Ministry of Health to implement the
clinical pathway for the late effects of polio throughout all DHBs with the resources for all disciplines including social and
mental wellbeing, and the funding model for dynamic carbon-fibre orthotics to be available to all those who can benefit from
them.

Therefore, it is important that we have people on the Board over this coming year who will be able to support the roles of
Secretary and Treasurer and be prepared to take on these roles when I am no longer available. I trust that our success will
mean that much of the current intensity of those roles will have settled down and should not be as demanding as they are
during this progressive time.

We are very keen to hear from anyone who is highly organised with good secretarial and/or bookkeeping skills and highly
proficient computer/internet skills.

Come and join a fabulous team of happy cooperative people doing exciting things that are changing the disability sector in
New Zealand not just for people who have had polio, but for everyone.
 Planning for the Future continued....
Beyond the succession planning for the administration of the organisation, the membership also needs to be thinking about
leadership.

Barry has done five years and that’s enough for anybody. He has turned this ship around and set its course. When he is
ready, he needs to be allowed to let it go so he can take care of himself and his family and do what they love to do.

So we need to think about leadership. The President doesn’t need to be a Member of New Zealand Order of Merit with a
face that everyone knows on radio, but they need to have those qualities that can front to both the media and policy-makers.
These are the Skills Polio NZ Incorporated Needs on the Board from 6 October 2018 to AGM 2019 for succession planning.
President: Leadership, Vision, understands the Strategic Objectives and can effect progess.

Vice President: supports the President and takes responsibility for special projects. While Sue Griffin was Vice President,
she established the annual retreat. Sue is available to serve the Board but is not available as Vice President. This position is
not essential for a functioning executive body but we do have some special projects that need doing including someone to
take responsibility for the annual retreat.

Secretary: Excellent Communications and Technology proficiencies. social media savvy, youthful vision, Word 360 and
excel, cloud storage and file sharing.

________________________________________________________________
Treasurer: Xero

WE WANT TO HEAR FROM YOU

by Susan Kerr
Our website has been updated and looks very attractive. There are lots of
different “pages” on the site, and it takes a while to get used to getting round
them, but one of the most interesting new aspects is The Social Hub which will
allow you “have your say” in a different way. The address of the website is
https://polio.org.nz and useful tips are given on how to use The Social Hub are
given on https://polio.org.nz/social-hub-help/

Here you are advised how to register, and create a profile. Once your account is activated you can pop into the forums
and introduce yourselves. You can create a topic and join in discussions with other members. You might want to start off
with just going into the Home page on the site and see where it leads you.

___________________________________________________________________________________________
DISCLAIMER: The views and opinions expressed in this newsletter are those of the authors and not necessarily
those of the Polio NZ Inc. Polio NZ accepts no responsibility for accuracy of information contained within this
newsletter. 'Polio News' is strictly a newsletter about the disease. It does not provide medical advice, diagnosis, or
treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Always seek the advice of your physician or other qualified health provider with any questions you may have
regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something
you have read.
___________________________________________________________________________________________
ALL SOURCES ACKNOWLEDGED BY THE ARTICLE, ALL IMAGES NOT PERSONALLY PROVIDED AND ARE
SOURCED.