Issue 98, September 2007
Auckland and Northland News
National first for Huntington's Disease Nursing Care!
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Auckland District Health Board has recently created a post for a dedicated HD Nurse Specialist (NS). This is, as far as we know, a first for New Zealand, and possibly a first for Australasia. The role is funded through Mental Health and the NS will work closely with the Neuro-psychiatrist, Neurologist and community mental health teams to provide optimal care for people with HD within the Auckland region. The NS will visit people with HD in the community, and liaise with the multi-disciplinary team, Family Doctor, family, and Family Liaison Coordinator at the HD Auckland Association to support people with HD who are suffering from mental health problems.
We are delighted to announce that Jo Dysart, who is the current Family Liaison Coordinator for HD Auckland Inc. has been appointed to this position. Jo will continue to work part-time for HDA Auckland, alongside her new role as HD Nurse Specialist. We wish Jo every success, and await developments!
Waikato Health and Disability Expo is on September 14th and 15th.
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I will be there to raise public awareness of HD and also work towards the aim of the expo "to empower people with the information they need to achieve a full and healthy life". Support & Education is what I am here for.
Waikato seems to have escaped the worst of the winter rains but we still seem to have had our share and I have been very wet at netball many times! Our thoughts have been with everyone in the rest of the country coping with the flooding and snow.
Because of the weather I appreciate that lots of you find it difficult to get out and about but our support groups have still been well attended.
We had a Dietician and Speech Language Therapist from Waikato Hospital talk at our last evening, this is always important for families with HD. Lots of handy tips for those who attended with positive feedback.
By the time this is printed we will have had a speaker about "Power of Attorney". A sensitive subject but one we all should think about.
Next support/education evening is the 8th of October.
"Carers Coffee & Catch Up" mornings are on the first Saturday of every second month, next one is September 8th. CU @ Piko the Café!
(Covering the following Wellington Huntington's Disease Association employee areas:
Hawkes Bay, Taranaki, Wanganui, Manawatu, Wellington, Wairarapa, and Gisborne).
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Gill Fraser - We were lucky enough to have a visit from Alice Christian of the Wellington genetic team. She gave a lecture at our local hospital and again it was open to all local agencies and interested public.
We would like to be able to invite interesting speakers at least once a year, as Gisborne seems to be a bit off the beaten track as far as this kind of education goes. We are fortunate in that we can team up with the local Alzheimer's group to organise and assist with the logistics of these events, they have been a great help. They are based at the hospital so can do the on the spot organisation.
We are still struggling to find local fundraising opportunities, and will continue to plod on.
Carla Perry - To the Huntington's Families in my Region,
It is with a sense of sadness that I share with you the fact that I have resigned from my position as Social Worker for the Taranaki, Wanganui and Manawatu regions.
I have considered it such a privilege to have walked alongside you all, and shared with you your journey with Huntington's Disease. You have welcomed me into your homes, your lives and your hearts, and that is something very precious to me.
I have accepted the position as Community Social Worker at Taranaki Base Hospital. I started on the 1st July. Until a new appointment is made, I will continue to take telephone calls and provide social work cover via the telephone.
Thank you all for the trust you have put in me, and I will continue to think of you all with love and care.
The Wanganui Support Group wishes to acknowledge the passing of a member in Wanganui.
We extend our deepest sympathy and care to the family.
Jane Harkness - Due to unforeseen circumstances Sheila Roberts, the newly appointed social worker for HB, is unable to join the Wellington HDA social work team. I will continue to provide social work services and support until a social worker is able to take up the position.
If there is anything you think I can be doing as social worker for Hawkes Bay, to support you and your family, please contact me.
The HD support group continues to meet regularly, if you would like to come along, please give me a call.
Lynn Farrow - The fortnightly swimming group at the Hutt Hospital pool is going well. Exercise, socialising and having fun is so important. If you would like to join us please do contact me.
The Carers Coffee Group continues to meet bi monthly. Our next meeting will be at the Galleria Café, Guthrie Street Lower Hutt, 9.30 on Saturday 6 October, 9.30am. New comers always welcome.
On behalf of the Wellington Huntington's Disease Association, I would like to take this opportunity to thank Carla for her hard work and dedication over the past three years. We all wish you well in your new job.
I look forward to seeing you at our AGM on Sunday 28 October 2007 at 11am in the Day Room of Watsonia Court 1A Rodney Street Lower Hutt. There will be a shared lunch, so please bring a plate.
Greetings from Christchurch, we hope winter has been kind to you all.
AGM this was held in May and we were given the opportunity to thank our long serving secretary Judith Baker as she stepped down from this role. Judith has been on the committee since the forming of the association some 27 years ago. We were delighted that Judith is staying on the committee as her wealth of knowledge is a valuable source that we all call on at times. Dedication like this is very hard to find and we are lucky in Christchurch that we have a few members that have been long serving in our association.
Our guest speaker at the AGM was Maggie-Lee Huckabee PhD who works at the University of Canterbury and the van der Veer Institute, specialising in the swallowing process. Every time we swallow 7 nerves control 32 pairs of muscles in the throat in less than 1 second. She went on to say that the swallowing process involves one of the most complex neurophysiologic and biomechanical processes in the human body. Once she explained the swallowing process you could identify why our HD people have trouble in this area.
Fundraising - our association has been active out in the community with the advertising of our Trivia Night which is to be held at the Richmond Workingmen's Club, Tuesday 9th October, 7pm. These events provide a wonderful opportunity to talk about HD to the public and make more people aware of the struggle that our loved ones face. The first trivia Night was held 2 years ago and this was such a huge success that we are running another one. Money raised from this will hopefully provide extra activities for our recreational group and other HD members to enjoy.
If you are interested in entering a team for this event it is $5.00 per person, maximum of 6 people per team, with some wonderful donated prizes. Please contact either Denise 3488174 or Dianne 9605913 to register your interest.
HD Conference 2008 the exciting news for Christchurch was being given the opportunity to host the next National HD Conference, this was readily agreed to by the committee and a conference committee has been set up. Thank you to all of you who took up this challenge. The conference will be held on Saturday 20th & Sunday 21st September 2008 at the Christchurch Town Hall. Look out for more information in the next magazine.
Winter is passing with education sessions, funding applications, volunteer recruitment plus all the usual challenges and variety.
One particular highlight was the 80th birthday "This Is Your Life" celebrations shared with family and friends. Congratulations to Doug Hoy for a life well lived and inspiring acceptance of HD.
There are many community agencies supporting our HD families and we are grateful to the speech language therapist who trialled the litewriter to aid communication. Many new electronic/computer devices are being adapted for disabilities and I am gathering information to encourage mastery in the earlier stages of the disease.
We have also received great support from Workbridge enabling a worker to continue in the workplace by offering assessments employer subsidy and travel concessions. Tasks can be modified and hours reduced to enable employment to continue.
Our groups are growing and recreation members have enjoyed bowls, movies and massage over the winter months.
The next carer support group will be held on Wednesday 19th September at 7.30pm in the Linwood Community Room. Caroline Lintott, geneticist will be our guest speaker. All Welcome.