Issue 95, December 2006
Seasons Greetings to all from Jo.
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I have had a wonderful year; full of unique experiences, of which I am privileged to be part of.
To all the new families - I would like to offer a warm welcome from the H.D population and look forward to see you at the planned events next year.
I have been fortunate enough to have the Auckland committee fund raise and support my attendance at the forthcoming conference in Melbourne where it will also be an opportunity to meet with my colleagues from New Zealand and Australia. Will report more in the New Year.
There is to be a Fun day with the Fire Brigade for all HD families, date to be confirmed but possibly 16th Dec 2006 this will be a good one for young kids and the not so young like me. Please contact me for more information
Office Hours are by appointment, my time can be flexible to meet the needs of the families. I currently work Monday, Tuesday, Thursday 8.30-5.00pm and Weds 8.30- 7.00pm.
Carers Seminars will continue to be two full days twice a year.
Gene Positive Group will be on Tuesday evening twice yearly. If any body is interested in an AT RISK group please let me know
Annual General Meeting will be June/July a good opportunity to hear about the latest research developments from Prof Faull and Dr Roxburgh and associated teams and to offer your support to the Committee.
Northland Visits will be twice yearly but will also be tailored to meet the needs of the families in the Northland area. So please do call when you need to. Do not wait until my next visit.
Information Services are always available.
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
Carla Perry - The Wanganui support group had an enjoyable social outing at McCafe. We are going to focus on social activities over the next year, rather than group meetings.
I also had a very productive meeting with medical professionals at the Palmerston North Hospital. The sharing of knowledge about Huntington's Disease was helpful to all of the multidisciplinary team members who attended.
Jane Harkness - Community groups continue to ask for information about HD and recently I have spoken to a day care facility. This was well received by those who attended, as evident by the wonderful questions asked at the end of the presentation. My hope is that this is a reflection of the increasing understanding of HD in the community. I am very willing to provide information and support to groups and organizations who are interested to know more about HD.
Carly is training well for the Ironman next year and is building fitness and stamina by entering many events. Check out the website.
The HD support group is meeting again in December for an end of year celebration.
Lynn Farrow - Over the past few weeks I have been talking to various community groups and government agencies about Huntington's Disease and related matters. I participated in a lecture to the fourth year medical students at Wellington Hospital on the subject of 'Ethics and HD'. The students knowledge and enthusiasm to learn was very encouraging. Further education sessions are planned with other agencies in the coming weeks.
The Wellington carers coffee group met again in October and will meet again on 9th December. The swimming group will finish on 6th December and resume on 14 February 2007
I attended the Australian Huntington's Disease Conference in Melbourne on 15 - 17th November. I look forward to sharing my experiences with you next year.
Gill - At our last support group meeting, we were busy discussing fund raising options. We have just drawn a raffle that some of the group put together and it has been very successful. I would love to hear from any locals with fundraising ideas.
Our next support group meeting in early January '07.
Annual Camp for Young People - We now have several names of young adults aged 12-18 who wish to attend the next HD camp on 18-21 April 2007. Please keep the calls coming in. It helps with planning and funding if we have the number of attendees well in advance. The camp is sure to be fun. We have lots of activities planned and there will be ample opportunity to ask questions and spend time with other young people from Huntington's families.
All our support groups welcome new people, so please contact us if you would like to attend a meeting in your area.
Wishing you all a very Merry Christmas and a Happy New Year.
Carla, Jane, Lynn and Gill
Pak 'N Save Lower Hutt,
In September the Wellington HD Association held a carer's retreat in Palmerston North. It was a very successful weekend with people from Taranaki, Palmerston North, Wellington and Hawke's Bay attending. The weekend was supported by social workers from Taranaki, Wellington and Hawkes Bay.
The intention for the weekend was to provide an opportunity for carers to relax, have fun and have time to meet others who were also walking similar journeys. And it was our hope that those who attended would be supported in their caring and would also experience a sense of community.
We hoped the retreat would, in some way, acknowledge the contribution carers make to the lives of people with HD.
At 10am, Saturday morning, we gathered in the conference room of a Palmerston North motel. Greetings and introductions were shared around a cup of tea. A loosely structured discussion followed and then it was lunch. The afternoon was set aside for fun and relaxation, with various optional activities. Saturday evening we had a meal together at a local restaurant - within walking distance.
The weekend concluded Sunday lunchtime following breakfast together and discussion.
The feedback received from those who attended the weekend, indicate that it was a very worthwhile project and something they have asked to be repeated.
A big thankyou to all the following business's, who provided all the snacks and pamper products for the carers -
Pak 'N Save Porirua,
Dispensary First, Naenae
North City Pharmacy, Porirua
Life Pharmacy Westfield Queensgate Lower Hutt.
Jane Harkness, Carla Perry, Lynn Farrow - Social Workers
Caregivers Weekend Retreat
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Who ever decided to do this for us is a true gem. We who went would tell you what a fabulous time we all had. We got to meet some amazing people walking the same path as us. Okay some are in different stages of that path. Some have had to go over bigger hills than others. But some have gone down the hill further than others... But we all got reminded, no matter how big the hills are we go over or how far down the hill we go, we are still all on the same path, so we are never alone.
Although sometimes more often than not we feel alone on that path. Over the weekend we got to spend sometime hearing about each other's stories or at least some of it. Also we found out some very interesting things about each other. We had some, well more than some, don't like chicken leg soup, and some don't like cheese and tomatoes. Which made very interesting talks between everyone.
We also found out who was really good at tenpin bowling and who (like me) are not so good. Some of us enjoyed go-cart racing, some enjoyed going for relaxing walks together and some enjoyed the movies. Then most (not I) went out and had a lovely dinner together. Through this weekend we got to know another side to our wonderful social workers, which was a good thing. We had heaps of time to look at how they (the social workers) can help us more or better. But also we found out how we can help them. e.g. back them up in talks with med-students etc.
We also got reminded that we need others to talk to, about what's going on at home behind the closed doors, and that we don't need to hide anymore and not to feel we have to do it all on our own. Also, that we are still human, and we do have emotions, wants and needs of our own, that sometimes we need to fill those things not only for ourselves, but to help our loved ones in a better way. Because if we are too tired and stressed we can't do the best of them. And that was good, because we all need reminding at some stage. What better way than spending time making great new friends?
But out of the whole weekend we all got reminded how to have fun and that we have no reason to feel guilty about doing so and that how nice it is to have fun with friends and family.
So, with much love and many thanks to everyone who helped make our relaxing and stress free weekend happen.
Stephanie & Brendon Reardon
A warm hello from Christchurch to everyone.
We are starting to enjoy the warmer weather now and this certainly makes a huge difference to everyone's outlook on life.
Our association has had a few productive months since our last newsletter with positive spin offs for everyone. Our field worker Lynne has been very busy getting up and running a second permanent group offering carer support and education for our Association's members, as well as continuing to run a monthly recreational/support group.
The carer support groups' aim is to combine educational support, informal chats and net working with other carers and the chance to share any concerns, worries or advice with others, the night is finished off with a cup of tea and something to eat and the chance to stand round and chat some more. This first meeting held in October was well attended with 12 carers, parents, partners, and children from our HD families gathering with Dr Caroline Lintott being our first speaker, Caroline shared her knowledge with us all at a level that we could all understand, and gave us the chance to ask questions. This group will continue to meet on the first Wednesday of every second month, at the Linwood Library Community Room at 7.30pm. Our next speaker will be from Work and Income talking about entitlements this will be in December. Meetings for 2007 will be held in February, April, June, August, October and December. All carers are welcome to share in these friendly gatherings.
The Recreational support group for our HD people meets monthly on the 4th Wednesday of each month, between 1pm and 5pm. Transport is provided and outings are planned in consultation with the HD people that attend. These have included visits to the Antarctic Centre, Mini Golf, Ten Pin Bowling, and Sensory Centre to name a few. Each outing is always finished off with a visit to a cafe for coffee and cake.
Lynn is going to the conference in Melbourne and hopes to share ideas from Australia in the next newsletter and is grateful to the local association for the chance to attend.
Our association would like to take this chance to wish all the readers of this publication, a very happy and safe Christmas, with the chance to recharge those batteries over the holiday season and to look forward to a wonderful 2007 with loved ones and friends.
Kindest regards Dianne and Lynne
Dianne Collins 03 9605913
Lynne Switzer 03 326 5189