HD Australia

So today is one year since we found out James's HD results. It feels like we have known for such a short time the feelings are often still so very raw and scary. A year on I know far more about Gene's and HD then I ever knew before and ever really cared to know. We have been through so many things in 12 months but it also seems to have flashed past.

Our weekends are normally full of visits to friends or going away but strangely this weekend we have virtually nothing planned. I dont know if James realises the day and I am scared of saying anything he has been having a tough 2 weeks and I dont want to make him more upset, though I dont think it is healthy to go through today not talking about it.

Our Genetic councilor told us that a year marks a big occasion after the event and things will just seem to start getting easier to deal with I sure do hope so but for me a year passing is just another day closer to the symptoms starting and the beginning to the end of it all.

Anyways I just had to write this down it has been going over and over and over in my head and I am just so great full that I have this forum to unload onto.

Daisy.

Hi Daisy - I understand what you mean. It's totally an anniversary that you cannot celebrate, as with most other anniversaries. Yet one year since James got his results should be acknowledged, I guess. Maybe James doesn't realise it's this exact day - or maybe he has it all swirling around in his head, like you do, and he doesn't want to upset you by talking about it.
Maybe you guys can just chill (with this weather, that should be easy ) at home, watch some videos, snuggle up, and try to appreciate your time together this weekend.

I know what you mean - I know far more than I ever wanted to know about genes and all that stuff - I wish sometimes I could go back before 2006 to when all those gene type things were just an amazing mystery to me, and I didn't want to know how it all worked.

I don't know if your genetic counsellor is right - I've never heard that theory about the first year being over - maybe it marks a time when some of the initial shock has worn off - but there are still plenty of ongoing issues to deal with. Maybe others on the forum will share whether the first year of getting their results marked any milestones in their journey.

All the best, Daisy - maybe tentatively bring it up and see if James wants to talk about it, but if he's had a rough 2 weeks, maybe he wants to be distracted from thinking about his results, and just wants to focus on something enjoyable, if that's possible.

Let us know how you are both going.

sonnie

We had a very casual day. When we were out shopping we were talking about very little and I thought the time was right and just mentioned if James knew what was the date or why it might be significant and he said he couldnt think why. So straight away I was relieved that I was the only one stressing, and that he just shrugged the day off and didnt bother to worry about it. We then just had a wonderful afternoon and it was very clear that it was nothing significant to him it was just me stressing as usual.

Thanks for replying sonnie it was great to read your thoughts.
Daisy.

Hey Daisy...i know I'm late in my reply! But Im really glad to hear you guys have survived your first year of 'knowing'...and not only survived...joined a forum...started a group... and actively invovled!!! You should be proud x

Hi Daisy,

Congrats on surviving the one year mark! Perfectly natural to worry about it all though.

Cheers,

Tania

Hi Daisy,

I can totally understand where you are coming from in thinking you are one day closer to the day symptoms start, I just have to say that finding out he is gene positive doesn't make the disease come any faster. As soon as you know it's like a waiting game, watching every movement and wondering etc. It could be one year, 5 years or even 10 years and perhaps because the onset is so slow you won't even notice changes as they are subtle.

When I look back I did the same symptom watching, wondering but when my husband was symptomatic I had no idea. I can now remember saying things to him which would indicate changes were occurring but at the time it didn't click because I had never encountered anyone with HD before.

Even when he does become symptomatic you will be stronger than you thought and able to live a good life for quite a while with a few adjustments along the way. It won't just happen one day that you wake up and he's got it and you have to care for him, so try to not think about when it will happen but just enjoy your time together beforehand. My husband lived at home for 8 years before he caused problems so hopefully it will be the same for you, a very slow process that you can deal with long after symptoms are there.

It's not easy to not watch, to not think, to not worry but try to look back over the last year and think that nothings changed, this time next year its likely you will be in the same situation you are now in. No change.


Buddybird