Hey Everyone,
First time poster here. I was wondering if I could get some advice.
I have Huntington's Disease and am starting to show symptoms. It has taken some time for me to admit that to myself.
I don't have any friends or family to support me.
I am very isolated and wanting any and all the support.
My mum had symptoms as early as I can remember her.
Back then I was her carer. And there wasn't much support if any for her or myself. And it was a massive struggle for the both of us!
I am hoping it's different now. But where do I look for these supports and where do I ask?
What supports are out there and how do I find them?
I hope this made sense!
Cheers,
Frances.
Hi Frances,
Welcome to the forum. Please remember that you are not alone as this forum is here to assist, learn and give some guidance where possible. You have made a big step in just reaching out and asking for advice, so well done.
Just some of my background. My best friend had this disease and her daughter is gene positive. I supported my friend during her journey until she gained her warrior wings. I was a strong advocate in ensuring her needs and wishes were able to be met wherever possible.
You may already be aware of the Huntington's Victoria website which is a great resource with lots of valuable easy to read information. I definitely recommend that you check out the website if you haven't done so already. I would also recommend that you contact Huntington's Victoria on 9818-6333.
Are you linked in with any HD clinic or HD doctor. Do you have a NDIS plan and a support co-ordinator.
Another website I would suggest is hdyo.org
Sorry to ask so many questions, it can help with where to start with finding supports.
Take care
Sue 
@sue-b Hi Sue,
Thank you for responding. I am so sorry that your best friend has Huntington's and now her daughter too. You sound like you were an
amazing friend and advocate to her.
I just linked up to a HD Clinic and am waiting for an appointment at Calvary. I dont have NDIS or support co-ordinator.
But will begin the process today.
And disability pension as well. I need to do that too
I will take a proper look at the HD website and HDYO website as well.
Thanks for your advice!
Hi Frances,
My friend was linked with Huntington's Victoria for NDIS Support Co-ordination as they are the specialists in this field in Victoria. I would recommend that you at least give them a call and sus them out.
The DSP application is a lengthy process so please make sure that you get supporting documentations from both your doctor and specialists as well.
If you are interested, Huntingtons Victoria are having a family fun day on 14th Dec at Luna Park. You can get more information regarding this by either contacting the Information Team at HDVIC or via their website under events. It's a great way to meet up with HDVIC staff members as well as other members in the community.
if you have any questions or concerns please don't hesitate to ask as I believe there are no dumb questions.
Take care
Kind Regards
Sue
@sue-b Hi Sue,
My son and I will be there!
Looking forward to it!
And catching up with everyone!
Thank you Sue,
I appreciate that.
@frances that's great France. I look forward in meeting you and your lovely son in person as I will be there as well. Take care. 
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