Issue 92, March 2006
I would like to take this opportunity on behalf of myself and the H.D families that Beth has supported educated and advocated for, for almost the past decade. Thank you for your kindness warmth and empathy during this journey. Enjoy your new beginnings and life style change.
The first open day will be on 25th March at 7a Taylor’s Road from 10.30am till 3.00pm, where Beth will be our guest speaker on adapting to change. This will also be an opportunity for those individuals and families to farewell Beth on a personal level.
The neurological support centre is open Monday to Friday 8.30 to 4.00. I will be in the office first thing most mornings to clear the answer phone, e-mails and mail etc. Unfortunately at the present time I am only able to meet individuals at the office via appointment but I am able to keep my time flexible enough to respond quickly and efficiently so please do not hesitate to contact me.
The Auckland committees are busy with the task of securing funding for the organisation and its running costs. Committee meetings are held every six to eight weeks; new committee members are always welcome.
The Association links with research team, psychiatric liaison, neurologist and regional genetics continue to be strengthened and develop but the Association’s main focus will continue to be the needs of the individuals and their families not the needs of services.
For those individuals and families that I have not yet had the pleasure to introduce myself to, I will be making appointments in the near future. Obviously I have to prioritise and respond to needs so please once again do not hesitate to contact me. I am looking forward to a positive busy year.
I’m still settling into the job, and very much enjoying meeting so many of you out there and learning as much as I can about Huntington’s.
I come away from visits with families dealing with the disease feeling humbled and somewhat in awe of the challenges faced and the courage you all possess.
As this year goes on I look forward to meeting those of you that I haven’t touched base with yet.
At the end of last year we had a very happy evening with dinner at Metropolis café in Hamilton, great to get together with the “Carers Group” and some of their families and friends.
The HD Group met a couple of weeks earlier to go over the Conference Information. That was an interesting evening.
I am currently training to ride the Rotorua - Taupo 100km Charity Flyer. This is a cycle ride, which takes place on Sunday 2nd April and can be ridden as a fundraiser. I am riding it for the MS Waikato Trust and have some others riding for the Trust, Peter Wright Neurologist being one many of you might know. If any of you out there wish to ride, give me a ring, there is still time to train, but if you prefer a more sedate approach you can help enormously by calling me and I can send you a pledge sheet which you can then gather pledges of money for the cyclists riding, or make a pledge yourself. Every little bit counts. I would also appreciate any ideas on local business, current or past employers of Huntington’s families may be happy to support this worthwhile ride, your assistance as to who to approach would be wonderful.
The meeting that was held on 13th February was to plan the year’s events and I will be letting you all know what to look forward to in 2006 in regard to Speakers and Social Activities and dates for meetings.
My hours of work have changed slightly. I will now be working, Monday, Tuesday, Thursday 8am-4.30pm and Friday 8am-12 noon. Please also note the change of email address on the back page.
Hi everyone, I am very pleased to join the HD team. My name is Gillian Fraser, usually called Gill, and I am covering the Gisborne and East Coast families.
My family, consisting of my husband, two girls, and me emigrated here from the UK 18 years ago and we have stayed put in sunny Gisborne, although the girls have flown the nest now and have done their own travelling.
I am a relationship, family and court counsellor with Relationship Services, I think this is my fifteenth year!! I also have tutored community courses at the local polytechnic and provide private clinical supervision. I am looking forward to some new challenges with this position, and also looking forward to working with you all.
I can be contacted on (06) 868-3031 or by email.
Wellington/Taranaki/Hawkes Bay News
Dorothy Tortell QSM.
Congratulations on receiving such a wonderful award, Dorothy.
It is a great recognition of all the years you have carried hope for families in the HD community; for the knowledge you have passed onto many; for the books that have been produced with your boundless energy and commitment; for the camps that have been organized and run for young people; and for the care you have offered families and workers along the way.
It is a great privilege for the HD Association to have its Senior Social Worker (oops most immediate past SSW!) acknowledged in such a special way.
Thank you again and thank you to your family for all their support, which has encouraged you to take on the many challenges of this work.
Carla, Lynn and Jane.
Lynn Farrow - Social Worker (Wellington/Wairarapa region)
Greetings and best wishes for 2006.
The Wellington swimming group recommenced on the 15th February. The group meets at 12.15pm every second Wednesday at the Hutt Hospital heated pool. New comers are most welcome to come along. It really is a lot of fun as well as being an excellent source of exercise.
My social work services will continue to be tailored to suit the needs of each individual. I am available for home visits, café meeting, telephone and email support or enquires. I can help identify what services may be available to you and how to access them. Do contact me by whichever method suits you best.
As always I would also love to hear all your suggestions of new activities and services you would like in the region.
Date for your diary:
On Thursday 16 March the Wellington Community Law Centre is running a free lunch time seminar entitled Powers of Attorney. Beverley Pearce, community Lawyer explains the differences between Power of Attorney, Enduring Powers of Attorney and Personal and Property Orders.
The seminar will be held from 12-1.00pm at Wellington Community Law Centre, Level 2, 84 Willis Street.
For further information call 04 499 2928.
Carla Perry - Social Worker (Taranaki, Wanganui and Manawatu)
I continue to travel to Wanganui and Palmerston North once a month, to visit clients and hold support group meetings in Wanganui. I visit clients in rest homes and education of support staff is one of my biggest roles with clients in care facilities.
A large part of my role is making telephone contact with clients on a regular basis.
I want to continue to increase my participation in family and service planning meetings, and continue to promote the Association, and the support it offers to families facing the challenges of living with HD.
Jane Harkness - Social Worker (Hawkes Bay)
The Hawkes Bay Support Group is a really active group of people who support many different ventures in the HD community, be it the young person’s camp, the writing of books, fundraising for conferences or supporting people who are new to HD.
One of the group members, Carly, is currently training for the SHE Women’s Triathlon to be held in Taupo on the 12th March.
Carly is going to use the triathlon as an opportunity to raise awareness and money (through sponsorship) for the local HD Branch.
A website has been built by Carly’s mother, Jan, which if you are interested to see progress, you can view at www.jsites.co.nz/carly/ . At the time of writing $1740.00 has been raised. Congratulations.
There has been a lot of telephone and email work since the October Conference, as people have discussed and thought about ideas presented during the conference weekend.
Hello to all the regions from Christchurch. We hope those who have had holidays over the summer period feel refreshed and renewed and we wish everyone "all the best for 2006".
Christchurch is preparing for its AGM, date still to be set (April or May) and local people will be notified by letter. I am resigning as Chairperson and it is with regret I announce that Shirley, our Fieldworker is resigning also. The Committee is in the midst of interviewing candidates as I write this and we look forward to introducing him/her at the AGM.
As the result of an experience by one of our HD family, one of Shirley's final jobs was to introduce an ID card. It is sized to fit in a wallet, is laminated and introduces the bearer as having HD and not intoxicated. It also has a brief description of the main symptoms of HD. We intend to see if we can get a copy of the card in the HAANZ newsletter to introduce the card to their hotels, cafes, bars. It is sad it has come to this but the card is necessary.
Did you know that Australasia (Aust/NZ) has its very own Neurological awareness week? The week of 13th March. Christchurch is busy preparing a poster, that is specifically HD related, hopefully ready to be used during Australasian Awareness Week and of course our own Neurological Awareness Week in July.
Dunedin Support Group
While I was in Dunedin over Christmas, I arranged to meet members of the HD family during that time. I met with five people and we had an interesting 'pow wow'. The problems, shortages, frustrations facing families with HD are the same everywhere. The joy is Dunedin is ready to get a support group up and running. If anyone in the Dunedin area wants further information or contact with the fledging group, please contact me at email@example.com or phone me on (03) 381-2215.
We wish Dunedin all the best with getting the group underway and if Christchurch can help further, please let us know.
Farewell to Shirley, a respected Fieldworker.
The Christchurch Association were stunned initially at the news of Shirley's resignation. Who can blame her, great plans happening for Shirley and her husband over the next few months.
Shirley started with HD Christchurch three and a half years ago. She settled into the job, got to know the committee, became familiar with families in times of need - then showed her true colours.
Shirley is a good communicator and great networker. Any problems were brainstormed at committee meetings and some good ideas were put in place.
Shirley re-introduced the HD ID card, she did her own fund-raising and represented NZ at the International Conference, she did more fund-raising and organised social outings for clients which included swimming, movies, coffee & muffin break, massage afternoon and capped it off with an Xmas luncheon which was attended by some of the wider HD community. Shirley has an uncluttered mind and can separate the bush from the forest and get things done. She has an infectious laugh and dancing eyes.
Lastly she has an empathy with, and been a great help to a number of families struggling with Huntington's Disease.
Shirley and Brian, the Christchurch Association wishes you health, wealth and happy adventures as you journey in your "middle-aged hippy" phase of life.
"May the road rise to meet you. May the wind be always at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, may God hold you in the hollow of His hand."