President’s Report August 2017

Hello all, well we have great hints of spring. The daffs are out and blossoms are standing out amongst the green native forest here in Wellington, along with quite a few spring bulbs, giving lots of vibrancy. Our membership is growing. We now have 144 members from North of Auckland to Invercargill. The new Christchurch group is doing well and meeting every couple of months and the Auckland Central group had their first meeting on the 27th of August. It will also meet every couple of months. Well done to both groups for getting together and supporting each other. Palmerston
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Paddling the Whanganui

Support group member, Yvonne, doesn’t let scleroderma tie her down. Previously, she has reported from the back of a pushbike in the wilds of Otago. This time, it’s from the river rapids. Eight people, four canoes. One unforgettable journey. We put our canoes into the Whanganui River at Taumarunui, and pulled them out for the final time at Pipiriki, 5 days and 145km later. The Whanganui is a small river where our trip began, passing through farmland and gradually into native bush. That first day was a mixture of fear, exhilaration and laughter, as we learnt to control our canoes
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President’s Report May 2017

Winter is on its way, but we still have the odd day that is quite mild and pleasant. Firstly thank you all for your support at the National seminar here in Wellington this past weekend. We had some long distance travellers amongst us, Dipton in the deep South, Nelson, Palmerston North, Wairarapa, Kapiti Coast, Auckland and our folk from Wellington. Thank you to all of you for your help on the day, helping it run smoothly and the generous morning and afternoon teas, that Adrienne Burleigh, Tina Mclean and Sandra Forsyth put together for us. We had some very special
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President’s Report February 2017

It has been a very unsettled summer so far and I am keeping my fingers crossed for some more heat for February. We have had a small taste of it here in Wellington this week. It has been a busy time for Gordon and me on a personal note with four flower shows since September with our last one on the 4th & 5th of February, which was a begonia, fuchsia and dahlia show, a lot of work and support from all the good folk in Wellington and Lower Hutt and beyond. Barbara Spavin did very well in her flower
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Holiday Happiness

Have scleroderma – will travel – Barbara’s Asian and European adventure Armed with trepidation and a 3-litre click-clack of medication I went through customs. “Put your things on the conveyor belt, shoes off, belt off, jacket off, wait, get scanned, then proceed.” Then, plonk your butt onto a seat and put them all back on. Through the first check point – there were to be many more. I took a lot of medication for the 5-week trip. I took an extra week’s worth because you just never know. Travelling on Air New Zealand I thought the seats were very hard. I
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A Carer in Court

For decades full-time carers, paid by the Ministry of Health, but not recognised as employees, have scraped by on the equivalent of $3 an hour. Support group member and former full-time carer, Jan Lowe, called enough. Carer relief is a part of the health system that gives the full-time carer of an incapacitated person a break. Often the person cared for will have Alzheimers or other serious disabilities. After an assessment, the full time carer is given so many hours a year and has to choose a relief carer of their choice. This may be for a few hours at
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If you have a moment darling?

If the way to a man’s heart is through his stomach, can you reach scleroderma the same way? Support group, member, Rob Tomkies thinks you can. First, he had to convince his wife. “I have been researching food relationship with scleroderma. I think a change in food regime for 4 weeks will give some relief.” “Ok, good idea to try anything that will help” “The regime is basically a Paleo diet with some additions. I will list them for you: No dairy which includes cheese, yoghurt, milk and the like. No gluten: Bread or anything made with wheat or barley.
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Coeliac Disease – finding support

Scleroderma NZ member, Pam Dempsey, has coeliacs. here’s how she copes. I was diagnosed with coeliac disease nearly 20 years ago and a few years later with scleroderma and then later became dairy intolerant. Way back then it was difficult to be on a gluten-free diet as there was very little help available and the Internet was not an option for help. These days it is so much easier as Coeliac NZ (Auckland) is an amazing organisation that provides an excellent service to those with coeliac. There is a wonderful website providing coeliacs with so much information in every way.
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President’s Report November 2016

Seasons greetings to you all, it isn’t long now before we are all rushing around to get our last minute jobs done before we head off to get together with family and friends or just have a quiet one at home. We have had a busy time here in Wellington with the printing of the booklets which have now been sent out to those of you who have requested them. It has been a long process and one we couldn’t have managed without help from our hard-working fund-raisers: Linda Bell,Allan and Sandy Edmondson and our Specialist Nurse Maureen Anderson and
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President’s Report August 2016

Bring on Spring, we all need that boost of sunshine, and we have had a good taste of it over the last few days. I hope that you have all mostly come through the winter spell here in New Zealand quiet well. We have been reasonably fortunate throughout New Zealand as it has mostly been mild, with just with one or two heavy snow storms here and there around the country. We had a sad start to July with the loss of Valerie Smith as you will read about later in this newsletter, she will be missed by our group
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