Hello everyone,
My name is Nellie. I am a 30 year old, Geelong mum of 2 amazing children, both of which have special needs.
My mum is 55, tested positive in 1993.
My sister and I are my mums only children, but we have 5 siblings on our dads side as well.
Both my sister and I have tested negative. I tested at 18 as I had my son at an early age and wanted to know if he had the risk of having this disease. Felt like we had won the lottery when both my sister and I tested negative. As mum said, "it'll end with me."
But honestly we don't know that as mums siblings have not been tested, nor do they want to be. Each to their own. I respect their choices. It's not an easy decision to make.
We have 3 out 8 cousins who decided to get tested and they too have come back negative.
My mum's dad and sister died from HD. I didn't see my aunt in the last 10 years of my life. Most of it was due to the distance but towards the end, I didn't go see her because it was too confronting for me. I wasn't ready to see her. To see what was going to happen to my mum. It's one thing knowing about it, a lot harder seeing it. I regret not being there for my aunt but know she had a huge amazing support system. My mum spend almost every day with her in her final weeks, after not speaking for years.
Mum is living in an aged care home, the youngest resident by far. But her facilty is unfortunately not meeting her needs of care now as she has declined so much over the last 2 years and we are in the long process of trying to find somewhere more suitable. She is having up to 3 falls daily, refusing to shower (currently has one a week but only wants one a fortnight), lost 7 kilos in 6 months and unfortunately stuck in lockdown AGAIN, as now her facility has 25 positive covid cases.
It's becoming harder and harder to understand her on the phone which makes communication difficult while in lockdown.
I have never met another person with HD.
I have never met anyone (besides my family or support workers) who knows about HD, let alone knows anyone with the disease. I have a support group on Facebook but it seems to be an American site.
I have felt pretty alone in this journey.
I'm so glad this page has been created.
Hello welcome Nellie I can understand where u are coming from my child also has special needs to my mum passed away about 10yrs ago from hd she was 2 weeks off her 50th she was also in care as well my mums been the only person I have known with hd not counting myself I was diagnosed in sept last yr I live 4hrs from melb and don't know anyone else with hd that's why I'm looking forward to the galaball in may I feel it will be a wonderful way to meet others I wish you good luck in finding a new home it can be so hard yes this pages is going to be so amazing and am so glad hv made it to
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