Thanks very much, Evie. What about you? If you dont mind me asking, where are you in the thinking process about testing? I think its just so individual, whether or when you want to be tested. There is no right or wrong view or position, if you are at risk -- there is only what's right for you now. And people do change in how they feel about it, as the years pass. For example, I felt surby fleur - Huntington's Disease Support Center
Thank you so much, really. I havent forgotten any of you at all and am so glad to see your names and posts again. But it's been hard to look at the messages on this site since I started the testing process. while there is fantastic support from you all in this community, there are the difficult realities of HD as well that come through in the posts, which get scarier to think about as my resby fleur - Huntington's Disease Support Center
Hi Evie, I live in the UK, and I am going through the testing protocol now. I had my blood drawn last week and I find out the results this week. How much would you like to know? I have known HD is in our family for 28 years, and that I was at 50 pct risk for 15 years since my dad was diagnosed. My brother was tested in the US in the past couple of years. When he told me early last year, Iby fleur - Huntington's Disease Support Center
Hi Evie, I live in the UK, and I am going through the testing protocol now. I had my blood drawn last week and I find out the results this week. How much would you like to know? I have known HD is in our family for 28 years, and that I was at 50 pct risk for 15 years since my dad was diagnosed. My brother was tested in the US in the past couple of years. When he told me early last year, Iby fleur - Huntington's Disease Support Center
Hi Ken, It sounds like you've tried almost everything over the years. It's good the meditation is helping a little lately. It is intriguing though, that your insomnia only happens on Sundays. It makes me wonder whether you are really busy during the week, with work and other activities, so you dont have much time to worry or think about difficult things Mon to Sat. Maybe Sunday iby fleur - Huntington's Disease Support Center
Not crazy, no way! I've heard that a combination of therapy and meds works for many people and it's really good you've found yourself the support you need. Im definitely needing extra support in my life since HD has progressed in our family... fleurby fleur - Huntington's Disease Support Center
Dear Michelle, I'm very moved by your post, and by your mixed and unexpected feelings after getting the result. Thank you for sharing them. I related to what you said so well, and you put it so beautifully, the idea that testing negative can be emotional in all sorts of ways. The way I feel is that even if I test negative, family members have it and that is just hard and unfair. Like you,by fleur - Huntington's Disease Support Center
Michelle, What brilliant news!!! How fantastic for you. I'm so delighted for you and your family. Thank you for letting us know and giving us something wonderful to smile about today Well done for having the courage to go through the process. xx Fleurby fleur - Huntington's Disease Support Center
Hi JL, thanks for adding that. Youre right, everyone has to find their own personal solution, and for some people medication works best. I'm sorry you never found a therapist that helped you -- it must have been discouraging to say the least. But it sounds like anti-depressants are working well and you are feeling better, and that's what's important. I'm glad they've been helpful. Fleurby fleur - Huntington's Disease Support Center
Hi Bo, Congratulations! That's great news. I wonder how you are feeling now. Are you exhausted? Im planning on getting tested soon too. I was wondering if there are complicated, unexpected and difficult feelings even with a negative result. Very best wishes! fleurby fleur - Huntington's Disease Support Center
Hi Kensanto! Im an insomniac when Im worried or hormonal and this morning I've been awake since 4 am. I'm going to my first genetics testing apptmt on Friday and Im preoccupied with that. I used to stress about waking early, but it never helped me go back to sleep. My strategy is to get up and read with a cup of Sleepytime herbal tea, or take a bath with aromatherapy oils (sleep-inducingby fleur - Huntington's Disease Support Center
Hi G, Sounds like a very distressing incident! I only have little experience of my HD+ dad losing it occasionally, mainly because my step-mom made sure he took his anti-depressants, and because he self-medicated with a coupla beers at lunch and a few around dinner (and I live in UK while he lived in the US so we only saw him for visits). I think he was a handful on a day-to-day basis though.by fleur - Huntington's Disease Support Center
Hi G, I was delighted at your reference to Mars/Venus! Self-help books can be so annoying but there was certainly a golden nugget in that one, about the different way men and women communicate. Your wife is lucky that you have that in the back of your mind! Im a woman at risk and feel very strongly about pgd, if that is the name of the procedure you can use to make sure your fetus doesby fleur - Huntington's Disease Support Center
Dear Michelle, I woke up before dawn here in the UK and I know in Oz you are up and probably on your way to your appointment by now. Thinking of you with lots of love today. x Fleurby fleur - Huntington's Disease Support Center
Hi Barb, Im a few days late for this chat I know, but I wondered how to get in on them. Do they take place the same way as these messages, or are you instant messaging or what? And what time zone are you in? Im five hours ahead in the UK so it might not be possible for me... Thanks! And thanks for all your admin help on this site so far. fleurby fleur - Huntington's Disease Support Center
Thank you Marsha ! The smileys list is so exciting, and now I feel Im really part of the club. Ill try not to go too crazy with them but its tempting! Yeah, the counselling has been the best thing Ive ever done. Im still working on it all too, its a lifelong project Thanks again x Fleurby fleur - Huntington's Disease Support Center
Ill be thinking of you this week Michelle. I can relate to your agitation because for me uncertainty is the worst. But I guess thats what living at risk is all about. I hope you are doing something you enjoy this weekend...sometimes distraction is just the thing! x fleurby fleur - Huntington's Disease Support Center
So how do you get the cheerleaders and the cloud 9 guys? I have so much to learn! Thank you dcb and bigmac for your support and thoughts. I agree with you on family completely, dcb. Regarding support, my extended family is in the US, including my HD positive brother and uncle (Dad died of lung cancer 9 years ago when he was in the middle stages of HD). I have good support here, a few frienby fleur - Huntington's Disease Support Center
I was just rereading your excellent post dcb, and wanted to say thank you for your empathy and sharing the benefits youve experienced from getting tested. How do people get the smileys on their post? Hey, I did it! fleurby fleur - Huntington's Disease Support Center
Thank you Barb, for sharing what you went through. And for the hugs! It helps me understand my brother's reaction to his positive diagnosis that much better, and gives me hope that his distance now may not last forever. It sounds like you've come out the other side, and that gives me hope too, for myself if I get a positive result. x Fleurby fleur - Huntington's Disease Support Center
Hi Lou, Im in London. I'm really sorry you didnt have a better experience. I hope I will get someone who's helpful, but I know its not guaranteed. Thanks for your feedback -- it helps to be prepared for anything! Fleurby fleur - Huntington's Disease Support Center
Thank you so much purplegal, that's really helpful and kind. It's good to have an idea of roughly what it might be like. I can focus on one step at a time that way... X Fleurby fleur - Huntington's Disease Support Center
Ladycashel, Im so sorry about your test result. Wow. It's very good of you to share it as its still so recent. Yet you seem to have a fantastic attitude and I'm inspired by your outlook. I also hope to get some relief from the anxiety of not knowing...though Im sure there will be new worries with either result. I have two kids too. There's a Grateful Dead song I've always loved, "by fleur - Huntington's Disease Support Center
Can anyone who has been through the testing protocol tell me what to expect in terms of what happens in your counselling appointments? It might be a little different here in the UK but apparently there are three apptmts, spaced apart to give you time to think things over. What's it been like for you? Fleurby fleur - Huntington's Disease Support Center
Barb, what an amazing story. You went through so much alone, and on so little information!What a difficult time you had. I hope you are at a better place in yourself now. I appreciate your sharing it here -- thank you. I can relate to that lost feeling. Thanks too for reposting my mini-blog as a thread last week. Im not sure how everything on the forum works yet. x Fleurby fleur - Huntington's Disease Support Center
Hi Willow, I can definitely relate to the emotional process involved. I guess everybody has to go at their own pace on this, and only you know what is best. Sounds like you have a good doctor too. I am starting the pre-test counselling soon. But Im keeping my options open to change my mind at any point and postpone the test, like you did, if I realise Im not ready. Thanks for sharing youby fleur - Huntington's Disease Support Center
Thank you all -- it means more than you know to hear your experiences and know some of you have been there too. There are so many challenging aspects of this. For starters, I was completely unprepared for how a positive diagnosis of a sibling could affect the family. I had a fantasy we would come together, communicate and support each other with comforting chats on the phone etc. when this timeby fleur - Huntington's Disease Support Center
Hi everyone, Your thoughts on this are vitally important to me right now! Im two weeks away from my first genetics counselling appointment in the testing protocol in the UK and Im really anxious. So I really appreciate your different takes on this. I've decided to get tested because my brother two years older tested positive, and the news proved a turning point for me in terms of my abilby fleur - Huntington's Disease Support Center
Hi Sylvia. I will be thinking of you and your family and I know you will find the strength to cope with whatever comes. I am planning to be tested soon also and I too am very anxious. The uncertainty feels very hard sometimes. Look after yourself during this time of waiting. best wishes!by fleur - Huntington's Disease Support Center
Thanks Barb!Im excited to listen, learn and share. My latest hurdle is worrying that all my ordinary quirks are HD symptoms. My genetics counselling appointment is two weeks away. Er, anyone think there could be a connection? As an at-risk person, there have definitely been times, like when I flew to the US to attend a few amazing HDSA AGM meetings and was listening to lectures and partiby fleur - Huntington's Disease Support Center