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WHO ARE WE? TRACEY HENDER - Family History of Huntington Disease Grandmother (died Mar 1999 of pneumonia aged 78) advanced stages Father Diagnosed 1993 aged 50, Australia symptomatic Me Diagnosed Jul 1998 aged 31, Australia pre-symptomatic Sister Diagnosed Oct 1999 aged 26, Australia pre-symptomatic Uncle 1 Diagnosed 1997 aged 43, Wales symptomatic Cousin 1 At risk aged 21 (tested, clear) Cousin 2 At risk aged 19 (untested) Uncle 2 Clear aged 55* * descendants of a 'clear* parent will not develop the disease or transmit the gene. 'I am a computer trainer and my job revolves
around fast responses, a huge knowledge of different software,
the ability to think on your toes and talk coherently. My father
is my inspiration in the way he deals with things on a day to
day basis. He has given me hope that you can still lead a good
and active life even after becoming symptomatic. The trick is
to appreciate your own limitations and do what you can while
you can. With that motivation, I have tried to do things now
that I know I won't always be able to do,- riding a motorcycle,
abseiling, caving, canoeing and so on. I appreciate that, while
I can do the job I do now at the moment, there will come a time
when I won't be able to. I am already looking at creating a lifestyle
which is not so dependent on those very skills which I will lose
when I become symptomatic. One of my dreams has always been to
ride around Australia on a motorcycle and, together with Damon,
I see that this is a wonderful opportunity to both realise my
dream and create awareness as well. This trip is another acknowledgment
that, if I want to help raise awareness of Huntington Disease,
I have to do it now. PERSONAL DETAILS
DAMON MCDONALD - Support Person and Partner In the Huntington's world, a 'support person' is much more than simply someone to have around to change a tyre. Support people play a vital role in day to day encouragement and understanding. 'Tracey and I share a love of motorcycles and, as a documentary film maker, travelling together will give us the opportunity to gather unique footage which I intend to piece together to present the positives of life after diagnosis. I have been involved with Huntington's since the beginning of my relationship with Tracey and am looking forward to speaking with others about the importance of a positive attitude and outlook and some of the difficulties that arise as a support person, thereby increasing the network within the Huntington community.' PERSONAL DETAILS
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