HD Australia

So after being inspired by the Melbourne group I posted on this forum to see if anyone was in the Sydney basin and wanted to catch up. I was so please to get an email from Tania. Tania and her partner were also keen for a casual group catch up. Tania and my partner James are both gene positive and pre-symptomatic.

Today we met up for the first time at Darling harbour and it was fantastic. We casually talked about lots of things HD related and also just finding out about each others interests. We are going to make it a regular thing and catch up again in a few months. I will post the date here and also inform the HD association of NSW so if anyone else would like to come along they are more then welcome.

As it turned out Tania got her testing done through the same facility that we did so it was nice to have some common ground and we all agreed about feeling so lost after we got the positive results. This we agree is not due to the facility just that there really is so much conflicting advice and information it is hard to research and know what to believe.

We are all hoping that more people will read this and email me or Tania and join our little group it sure was nice to catch up with other people who just get you and how you feel without even having to say anything or explain anything there is just kind of a knowing about it all.

Thats all for now, I will post the dates when we know what we can fit in but it will probably be around August I would think.
Daisy.

Hey Daisy - that's great - you did it, congratulations ! I definitely think there is a need for getting together with others and their partners/families for gene positive, pre-manifest people. As we've said before, it's difficult to talk to family and friends about HD. It must feel good to chat to people in person who are on the same wavelength and understand what you've been through, and what you're going through, all your fears and anxieties, questions, feelings etc.
The shared experience of testing and getting results must help create a very strong bond - as we have here on the forum. You've taken it one giant step further - out into the real world for communication, support and friendship.
Please post the next meeting date on the forum - I hope others are able to come along and join the get-togethers.
I'm really pleased that you made it happen, Daisy. You deserve a medal!
All the best,
Take care,
sonnie

Thanks sonnie for your kind words and no, no medal needed here. I just knew sort of what would be helpful for us and was very much hoping other people felt the same and as it turns out we found a wonderful couple who did.

Our (being the 4 of us) biggest wish now is that MORE and LOTS more people work up the courage to come and meet up with some strangers and just chat. I got alot more out of the experience then what I thought I would have and hope the other 3 did also but I can feel confident in saying I think they did.

It was amazing to talk with people who just get it you dont need to get emotional you dont need to talk about the feelings or any of that side of things there is just a knowing which is wonderful.

I will post the date on here and also forward it in time to get in the NSW HD association newsletter so we can get the word out there.

Daisy.

Daisy that is absolutely wonderful news   It does take an amount of courage to do something like this...so good on you and Tania for making the connection and taking it that step further to meet!

I know exactly what you mean in the feeling of they 'just get it' It was very much like that when I met Nay for the first time...and has continued to be that way whenever i meet someone new, who is living in a similar situation with HD. Its certainly a wonderful feeling to finally get that sense of "there are others out there!"

Im sure your group will continue to grow...i think you have started something pretty wonderful! I hope the NSW Assoc. is able to support you guys in whatever way you need. Great work Daisy!

Michelle x

Hi Everyone,

Just wanted to agree with Daisy that it was definitely a positive experience for me and I'm sure for Sarah too. If anyone else is considering coming to the next one, I would definitely recommend it. Thanks again to Daisy for taking the iniative to try and organise a Sydney meet up!

Cheers,

Tania

That’s great Daisy! Hope to catch-up, tried last time with the Carer’s support group NSW but it was not a good location and timing for me. Hope that you will do it again around Sydney Darling Harbour caused my work place was just in the same building where the Sydney IVF was located. Kind of coincident though, that I got my 3 kids and totally unaware of HD. And now I’m just working at the same place that a clinic could have made my kids worry free of HD.

Jimmy  

Hi Jimmy,

After reading more and more on this forum I have read that you are the main carer for your wife who is showing symptoms at this stage in her life. What we are setting this group up for is really forpre-symptomatic people/couples and families.

At this stage I feel that catching up with someone who does have symptoms or partners or familiescaring for someone who is symptomatic would be just so confronting and wealready face it with James's mother.

What we are looking for is to get a verydifferent experience. I do feel awful in not including people with symptoms within the group but we really do need to get something going for theyounger group of people who are being diagnosed and just feel so alone in thisworld after being told such life changing information.One day we will be in the group of people who are symptomatic and I hope at this stage there will be groups for us to join and catch up to swap information.

I would suggest you maybe try and start a group it really is simple just pick a date and location and get people to let you know if they can come you don't need a leader you can be a leader. Maybe talk to the association again things might have changed. I do hope you can find some help as talking always helps.

Daisy.