Huntington's Scene In New Zealand
|Articles taken from the JUNE 2002 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand|
Welcome to 2002 may all
our readers gain renewed strength and hope from the exciting research and potential
therapeutic benefits of that research.
Talking of research: the active research projects involving families and individuals within families continues from Auckland University. Dr Lynette Tippett, Professor Richard Faull and Virginia Hogg are the researchers involved. I attend the HD Research Group meetings and have been a source of contact for people.
Virginia is looking for more individuals from Auckland-Hamilton areas to participate in one of the projects. If you are interested contact me and I will discuss it further. She particularly needs to increase the number of participants who are:
1. Presymptomatic and have been tested gene positive
2. Symptomatic but with later onset, say 60 years plus.
In participating you will learn how your brain is currently functioning and thereby understand how to best plan and manage you life.
Northland families the visit for 2001 has eventuated, but in March 2002. At the time of writing I had received six replies from a mailout to 22 addresses and expect to be visiting people in Kerikeri, Mangonui, Kaitaia, Kaikohe, Whangarei, Dargaville and Warkworth. The plan includes a Whangarei meeting organised on our behalf by the Northern Disability Resource Centre: Tuesday March 5, 10.30am.
PROGRAMME FOR 2002
17 March Family Day at the Zoo meet at 1.30pm outside
9 April Gene Positive Group and Carers Group 7.30pm
18 May Saturday Seminar 10.00am
June AGM Saturday Date to be confirmed
31 August Saturday Seminar 10.00am
24 September Gene Positive Group and Carers Group 7.30pm
30 November Saturday Seminar 10.00am
HERES A TIP: COPING STRATEGIES FOR APATHY
Do not interpret lack of activity as laziness
Use calendars, diaries, planners, schedules and routines to keep active
If unable to initiate activities, have other people encourage and coach
Be guided by others and enjoy small levels of participation
Start with 30 minutes a day and build up interests and social contact
OPEN OFFICE HOURS FOR 2002
Just a reminder that the Office is open every Wednesday 11.30 12.30, so feel free to drop by and see the resource, photocopy information or meet with me. Other visits can readily be arranged at other times. Just phone. See our new pamphlet.
, Field Officer
Ph 09 815 4264 (Office answerphone)
LIVING WITH HD
Living with HD has been
extremely difficult.With the lack of sleep, difficulty to go to sleep and to stay asleep.
And therefore this has brought about lots of arguments with my wife and family.I used to be an extremely calm person and never had arguments with anybody.This change led to my wife wanting to separate and to me thinking of wanting to kill myself.Luckily, I didnt carry this out but I still felt miserable.I used to feel very lonely whereas previously I laughed and joked a lot.Ive been single again now for about seven years.The HD was picked up when I was 42 and I am now 49.Luckily, I made contact with the HD Assn and the Field Officer/Beth Gordon and this has proved invaluable.Lots of close friends and family at this same time have also helped tremendously.Friends in the Salvation Army community continue to be an extra large help to me.
Mike Heaphy/Mickey Finn (my nickname) Feb 2002