Issue 100, March 2008
Auckland and Northland News
Auckland Huntington's Disease Association was the grateful recipient of funds raised by the Ambridge Rose Manor Rest Home and Hospital.
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Huntington's Disease field officer and rest-home liaison, Jo Dysart, has been successful in the placement and transfers of two Huntington's Disease patients within the 19-bed rest home. The rest homes owners and staff have welcomed the training and assistance from Jo to make the transition and integration smooth for all concerned.
The new relationship saw an approach from the rest home owners to nominate Huntington's Disease Association Auckland to receive funds raised in the lead up to the November 28th opening of the new 31-bed hospital, which is a wonderful addition to the Pakuranga and surrounding communities.
The hospital was opened by the recently retired Mayor, Sir Barry Curtis. The two patients are siblings and were transferred from separate rest homes outside of the Pakuranga and Howick areas from which they have spent much of their life. This has made travel and visiting for the families much more practical and the families wish to thank Jo for her wonderful management and care of their loved ones.
We are having a hot dry summer here in the Waikato and I love it!
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Lucky I am not a farm animal or making my living from farming, if so I would not be so happy with the weather.
I am employed by the MS Waikato Trust and was really pleased to see some clients with Huntington's and their families attend our Christmas Dinner. The Trust is here for MS, Huntington's and ME support and we want you all to feel welcome to attend these social outings.
We enjoyed a relaxing evening of chat and a lovely meal. I hope to see more of you attending our social events in the future.
In December I had a day trip to Auckland, to attend a meeting with Professor Richard Faull and his research team. The dedication that this group demonstrates is really inspiring. Jo Dysart -HD Nurse Specialist- was also present and it was great to hear about the HD conference in Germany.
I am organizing a one day meeting /hui of all the HD support workers around the country. This will take place on March 4th here in the Waikato.
I believe that by meeting and learning from each other, we will improve our services for you the families.
Our "Carers Coffee & Catch Up" support group is meeting every month from now on. First Saturday of the month 10am @ Piko the Café. See you there on March 1st April 5th or May 3rd.
Thank you to the team who put the newsletter together and congratulations on the 100th edition.
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
The Wellington Association has seen several changes in personnel during the past year.
Our longstanding Social Worker in Hawkes Bay, Jane Harkness, who was our representative in that area for over ten years, has decided to move on and we have replaced Jane with Tanya Jeffcoat, a registered nurse. Tanya has now met the families in Hawkes Bay and is continuing the excellence service which Jane had established.
The Taranaki /Wanganui/Manawatu area has also seen a changeover with Carla Perry, our Social Worker for three years, being replaced by Annette Turner-Steele, a Social Worker based in Marton. Annette has one of our cars and is moving around this large area supporting the families there.
The Wellington/Horowhenua/Wairarapa region is also in the process of having a change with Lynn Farrow, our Social Worker in this area, handing over to Caz Livesley, another registered nurse. Lynn has done a wonderful job over the past four years and is passing on her experience to Caz before leaving her position at the end of February.
Gisborne will also experience change with Gill Fraser recently deciding to leave her position and we will make arrangements to cover the Gisborne area shortly.
I would like to sincerely thank Jane, Lynn, Carla, and Gill for their wonderful efforts in supporting, counselling and educating the families and medical professionals in our region. The understanding and caring for those with Huntington's Disease is not an easy task at times and the committee and the families appreciate your work.
Welcome to Annette, Tanya and Caz who will be joining Carla and Lynn in Palmerston North to meet each other and discuss and learn from experiences.
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Hello everyone. I am in the process of taking over from Lynn Farrow and it has been an absolute pleasure to work along side her.
I was so thrilled… a) to see this job advertised… and… b) to actually get it!
I feel that I have so much to learn and I am more than happy to do whatever it takes to make a difference. I have met lots of amazing people since I have started.
I have many years of varied nursing experience both in and out of the community. My background is also in multimedia and drama and I really enjoy creative writing.
Originally I am from Liverpool in the U.K. My daughter and I arrived in NZ eight years ago and have been having the longest, most character building experience of all time. I look forward to meeting lots of you over time. I am always happy to help in any way I can, so feel free to contact me.
In the last few weeks I have been organising talks on Huntington's Disease and preparing a display for a local library.
The Hawkes Bay support group has had its first meeting for the year. New members are always welcome. Please call me for further details.
As some of you may already be aware I have decide to step down from my role as Huntington's advisor for the Gisborne region.
I would like to take this opportunity to thank everyone that has encouraged and supported me over the last two years, and for the privilege of working with such lovely families. I will be carrying on in different capacity as a volunteer counsellor which is where I began about twelve years ago!!
New Plymouth, Wanganui and Palmerston North
The past few months have been busy for me as I get to know my clients and their families/whanau.
I have been recently present at some rest homes to educate staff members new to Huntington's Disease.
Please don't hesitate to contact me should you wish to talk to me for any reason.
Annette Turner Steele
New Plymouth, Wanganui and Palmerston North
Our association has been focused over the last few months on the upcoming conference. We started off the New Year with our annual BBQ and get together at Mary and Ashley Gilmore' Home. This is always a nice time to sit round, chat and catch up on everyone's news after the busy Christmas rush.
Our regular HD committee has regular six weekly meetings, with everyone working these into their usually busy weeks of work, and caring for our family members affected by Huntington's Disease. These are squeezed in on the way home from work for most of us and others leaving the family to fend for themselves over the tea hour to attend these meetings.
When Christchurch was asked to host the next conference we set up a separate conference committee to oversee this project. A couple of new people were co-opted onto this committee, with the addition of another three people joining us over the last few weeks, to pick up jobs that will need to be done over the next few months.
This committee meets every few weeks and for those of us who are on both committees' this is a huge commitment to HD.
The venue and programme was the priority for us and now that they are all confirmed we are able to get onto all the other tasks that need to be done.
We have a wonderful array of speakers and topics and these are just a few:
Huntington's Disease An Update on research on the Human Brain
Professor Faull, Professor of Anatomy with Radiology, University of Auckland
New therapeutic Developments for Huntington's Disease
Dr Richard Roxburgh, Neurologist, Auckland City Hospital
Difficult Management Issues in Huntington's Disease
Dr Sandy MacLeod, Neuropsychiatrist, Burwood Hospital, Christchurch
Generation of a transgenic Sheep Model for Huntington's Disease
Jessie Jacobsen, Department of Anatomy, University of Auckland School of Medicine
Living positively with Huntington's Disease
Dr Fred Kavalier, Primary Care Geneticist/Consultant, Guy's Hospital, London, U.K.
We are having a dinner and dance on the Saturday night. This is something new and we thought that it would be a wonderful way in which we could all relax as well as have the time to talk with and interact with others. So don't forget to pack your dancing shoes!
I have just returned from five weeks travel in America and it is now time to reassess and prioritise for the year ahead.
I have been in this job for almost two years now - it is challenging, interesting, variable but sometimes isolating. I work from home for ten hours per week so time is limited.
There has been a lot to learn about Huntington's Disease and knowledge pours in week by week through our HD internet links from around the world and I am grateful to those who facilitate this. But, perhaps the greatest teachers have been the HD families, who bravely battle with this disease through generations - some coping with symptoms, some as carers and some experiencing guilt from a negative result, or an unknown future.
Therefore, family support is a high priority. We celebrated the New Year at a barbecue and our next family support group will be held on Wednesday 5th March at the Linwood Library Community room at 7.30 pm. You are most welcome. Please mark your diaries - 1st Wednesday of the month then alternate months thereafter.
I have been working with Workbridge to enable some of our people to continue to participate in the workforce and they have been most helpful. It is encouraging to know that Work and Income also have new initiatives to maximise workplace participation, rather than just Welfare Benefits.
Our Recreation Group will start again this month and will be limited to small group ventures.
Please contact me if you would like further information at (03) 326 5189.