Hi, I’m Tracy.
I had a normal upbringing and school life in Melbourne’s outer eastern suburbs prior to the mature age onset of HSP, as mine was. As a young child and into my teenage years, I enjoyed training for and playing Netball – a legacy which our two daughters have carried on. I was married to my soul-mate who I had met through a mutual friend. In the late 1990s and between 2000 and 2010 we had 3 children, 2 girls and a boy. Darcy is the youngest in our family.
In 2014 my HSP SPG7 was diagnosed, after much waiting and a gradual decline in my ability to walk ‘normally’. Since then, I have tried to continue doing day-to-day tasks – I can do most, I have just adapted to these taking longer, compensating for my slow and somewhat awkward walking. My hobbies include scrapbooking / craft, listening to music and reading books (time permitting). We have always enjoyed several camping trips a year as a family and still endeavour to do this, although it is somewhat modified for myself and there are a few trips that the rest of the family have gone on that I haven’t.
Prior to knee complications and reliance on a wheeled walker for balance, we travelled to Central Australia and explored Uluru and the beautiful surrounding land. A year later we explored the amazing Flinders Ranges. Opportunities that I am so grateful that I had! It really was a once-in-a-lifetime opportunity and we saw some very picturesque parts of Australia on our travels and met some awesome people through the ‘My Swag’ forum (a 4WD and camping online forum) of which my husband is an active member. We have kept in contact with the many friends that we made, who all live in various parts of Australia and shared many great times (with mostly the Victorian families ) since these special trips.
I look forward to learning more about Hereditary Spastic Paraplegia and sharing this journey with many other members – can’t wait to read their stories!
Hi Tracy, what a lovely story and also delighted to have met you. You certainly do not let your condition get you down. That is what I am finding out people are so positive which is great. I have friends say to me “I don’t know how your cope” but we do, we soldier on and nearly always with a smile.