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19 September 2015

"Come and meet Barry"

Barry Holland, Polio NZ President visits the Waikato Support Group

Last Saturday the guest at the Waikato Support Group meeting was Barry Holland. Although there were apologies from all around the Waikato, the room was full with 20 locals and members from as far away as Thames and Pukekohe.
•    Barry began by sharing his polio story, growing up and having an interest in sports although he was rarely competitive. He joined Radio 1ZB, first as a technician, but then as a broadcaster. He’s an extrovert and loves to be doing the talking. One day trying to step up onto a platform, he found his polio leg wouldn’t respond, which ushered him into the world of Post Polio Syndrome.
•    Then Barry shared about Polio NZ – he has been the President for a year now, and leads a Board of 7 other volunteers. Most of the funding comes from a Lotto Grant and membership subscriptions.
•    Barry also mentioned the Duncan Fund – from donations from the Duncan Family who started the Duncan Hospital in the 1940’s and 50’s. This fund is to help polios with living needs that are not easily funded by regular sources (DHB or MOH etc), like scooter batteries, house ramps and mods, and other gadgets. There is still plenty of money in the Fund and he encouraged members to apply for a grant.
•    This year POLIO NZ’s AGM will be held in Wellington at the Kingsgate Hotel on October 21st from 9.30am.
•    Polio NZ to Parliament: On the previous day 20th October, there will be a gathering at Parliament in association with CCS Disability Action and Rotary. This initiative is actually sponsored by the Green Party, and expecting at least 15 MPs from various parties. There will be a “demonstration” of “We’re still here” on the steps of Parliament followed by nibbles and drinks to meet with the MPs.
•    Future Alliances: There is a need to grow synergies with other Neurological groups to get more recognition for the needs of PPS. Barry detailed 3 areas that were identified at last year’s AGM: A Centre of Excellence (Clinic specialising in treating PPS), Polio Retreats, and Orthotics problems.
•    Polio Clinics: Two possible partners have been identified: Massey University who are interested in working with polios, and Auckland Institute of Technology who have a Stroke and Neuroscience course wanting to collect a database of PPS information. QE Health in Rotorua is accessible by people in some DHB areas but not others. (Waikato people can go to QE Health)
•    Retreat: Congratulations to Sue and all the volunteers.
1. We could learn from the guest speakers
2. We could learn from each other
3. We will do it again next year!
•    Orthotics: Polio people’s need for orthotic devices is not well funded, nor is there the wide range of devices that are available overseas. But Polios are not very good at making their orthotic needs known. (“Nobody listens.”“Given up trying.” “My old brace is still better than the new one.”“New shoes don’t fit properly.”) A survey taken in Christchurch of 100 polios only produced 12 replies.
•    Barry then talked about ongoing ways of promoting Polio NZ, through media:
Facebook: The Facebook page has brought a lot of visibility to current action in Polio NZ.  www.facebook.com/groups/436756456489069
Website: The website is again being updated.  www.polio.org.nz
Newsletter: The newsletter has  been downsized to 12 pages, and because of postal costs, some members now receive their newsletter by e-mail.
•    Waikato Website: Can I remind you that we also have a website for our Waikato group, where we post items of local news, and this report will appear there shortly. Please keep that bookmarked and check it occasionally for updates.  www.catchword.co.nz/pps.html
•    Edith also runs a local polio facebook page: Polio Catchword. Please check this out too.  www.facebook.com/poliocatchword
•    Barry finished with Polio NZ’s Statement of Intent, which is worthwhile stating here to encourage us:
Goal: To maximize independent functioning and wellbeing in New Zealand’s adult and aging population of the long term neuro-musculoskeletal disabled.
How: By establishing multi-disciplinary, appropriately skilled clinic(s) offering holistic assessments, individualized programesa and reviews to those experiencing aging and the effects of long term neuro-muscular skeletal impairments.
•    Finally, we announced that our group would be applying for a grant to fund our stand at the Waikato Show next April, and on Monday the details arrived by e-mail and the grant application is under way.

Thank you to all who attended, and to those who were not able to make it I trust these notes help you to feel as much a part of Polio NZ Waikato Support Group.

Noel Morris

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