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Issue 92, March 2006

Guest Editorial

A Text Message On My Phone - “Dorothy Tortell QSM”.

What a fantastic start to the New Year! The award of the Queen’s Service Medal to Dorothy, our recently retired Senior Social Worker was a well deserved reward for dedicated service to the Wellington Huntington’s Association. Recognition of Dorothy’s work with families, carers and professionals, her drive, enthusiasm and knowledge is a tremendous achievement.

Dorothy’s input into the establishment of Amaryllis House, the publication of three books by the Association, the running of several camps for young people, National Conferences with excellent overseas and local speakers, and attendance and presentations at International Conferences are all projects in which Dorothy’s contribution is recognised in this award. Congratulations Dorothy. The Association is very proud to have its senior employee rewarded for service beyond expectations.

Before introducing myself as the recently appointed Chairperson of the Wellington HD Association and outlining some of my experiences with HD, I must also acknowledge the major contributions of our immediate past Chairperson, Graeme Bradley and our Secretary/Treasurer Carol Dring for their long service to the Association, both having stepped aside at the last AGM. Thank You Graeme and Carol.

My introduction to HD was in August 1997 with a sledgehammer blow. My wife Bronwynn had been unwell for some time and this was affecting my business as I had to spend time caring for her at the expense of having time to visit my clients. Income was dropping rapidly as a result so; following a suggestion from a friend we approached WINZ for assistance. A further three months on, with visits to a doctor, specialist and neurologist, the verdict was announced by the neurologist in a short consultation – “Bronwynn you have Huntington’s Disease”. Whack – no genetic test, no caring support. Results of a blood test taken the next day subsequently confirmed this.

Bronwynn’s health deteriorated rapidly and she developed severe anxiety, like being on a treadmill and unable to get off. This resulted in three stays of a week each in the Psychiatric Ward of Hastings Hospital within three months of diagnosis, an upsetting and eye opening experience for us both. Jane Harkness, Hawkes Bay Social Worker, and Dorothy Tortell both commenced their support of Bronwynn, myself and our two sons during that time and have helped us since.

WINZ came to the party. They approved a disability benefit when they received the results from the neurologist. However, after six months with limited income, we were at rock bottom financially – three months in arrears with the mortgage, and the Bank about to foreclose. I received a phone call from a young lady from the Bank telling me that they were taking the first steps to sell the house. I gave her a “Tell her like it really is lecture on HD” and I didn’t hear from her again. However, having worked in the banking industry for many years I knew that the situation was critical so I offered to pay 100% of the amount we received from WINZ. We lived off income from a part time job, which I had as a driver for a bakery delivering pies early in the morning. Our wonderful Social Workers arranged a nurse/carer to care for Bronwynn early in the morning until I returned from work, as she needed full time care.

Three years of full time care at home in Napier with several respite care “holidays” mostly at Noel Hamilton House in Greytown followed before Bronwynn was admitted into full time care at Noel Hamilton. I have always wanted the best care for her and she certainly received that at NHH. After one year of three hour drives each way to visit, and only being able to afford to do this every second weekend, I swapped our house in Taradale with a woman who wanted to sell her Upper Hutt house, and I moved south. It was now only 40 minutes each way to visit. Bronwynn subsequently moved to a temporary care facility in Upper Hutt while Amaryllis House in Lower Hutt was being built and she is now a resident at Amaryllis House where she receives excellent care.

While attending HD Support Group Meetings in Hawkes Bay, we received a request for volunteers to establish a Disability Advisory Group with Healthcare HB. On their list of objectives was to establish a care facility for disables persons aged 16 – 64. I volunteered and said that I would specifically look at that particular objective. This had been on the agenda for at least 14 years with no success. Within one year, I located a suitable facility, a recently vacated small rest home on Napier Hill and persuaded the owners, Presbyterian Support, to convert it into an appropriate facility. They spent $30,000 on renovations and “The Beacon” was born. This has proved a wonderful asset as a daycare respite service for the people of HB, a great success. My only regret was that Bronwynn moved into full time care at NHH before The Beacon opened.

HD has taught me to be very patient and my attitude is now “Don’t stress. If you can’t do anything about it, don’t worry.”

Cecil O’Neale
Chairperson - Huntington’s Disease Association (Wellington) Inc.

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