Hey everyone, fleur is new here, and is going through the testing process, and is wondering if others felt anxious while testing too, so i decided to take her posting from the profile thread, and start a new thread for her here. Here is her original posts:

Hi, I'm Fleur in the UK, age 48. My dear brother in the US recently tested positive with very early stage HD. I'm preparing to be tested, though I'm asymptomatic so far. My first genetic counselling appointment is in 10 days and I'm scared. I've felt quite isolated with my HD concerns and I'm just delighted to know that all of you are here. I'm married with two teenagers, 15 and 13, who dont know anything about HD in our family yet...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 participating in groups, when I monitored myself more and wondered if every little thing I did was a symptom.
But everything feels different now Ive decided to be tested. Yesterday I started cataloging in my head all my recent memory lapses, bad driving manoevres and social anxiety behaviours, some of which are like my Dad who had HD. I was thinking I was symptom free, but now I'm not at all sure. And I feel increasingly afraid.
Anyone else been there, as they prepared to be tested? Everyone's post sounds so positive, but I feel scared s***less.



Edited 2 time(s). Last edit at 09/07/2007 03:08PM by Barb.

I was scared as hell, Fleur!.

But I'm glad I was tested. Even though I tested positive.

It has allowed me to plan for the future in an informed manner.

To quote JL----I was scared as Hell!!!!!!!but the whole time I also knew I was doing the best possible thing for me and my family. I tested a few years back---the test was POS.

It took me some time to work through that {heck, I am still at times working through that} but I have now come back to the person I was before even knowing of HD--{now I just symptom watch--and question certian behaviors occasionally}

I am now in the Predict HD research project {have been for 3 years} work on 2 diff fund raisers for HD each year, and speak at a few diff HD/Support Groups each year on various issues of HD including my favorite which another HD friend of mine and I titled the "Living Positive w/a Positve Result" Panal discussion. I have met some truely couragous people on this walk.

And as Jl mentioned, it has allowed me to plan for my future--and that of my family ---prior to testing we got the proper ins set in place for when the time comes.

So in an around the tree / woods answer---Yes, it is a very aggrivating, nerve racking, scary process---and no matter the result, you need to take time after to regroup--and know that through your journey, you have friends here who have been through it and those who are going through it w/you.

Keep us informed,
Wishing you the best
DCB

This is very inspirational sharing. Thank you DCB.

Good luck Fleur.

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 time came.
But the opposite has happened. There's denial for some and less communication all around, even with sibs I was closest to, as everyone deals with it the best they can. And one still hasnt been told. The upshot is I feel alone with my worries, but I dont really want to tell them of my test plans either.
So thanks again for being there and reaching out.
x Fleur

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?
Fleur

Hi there, Im in Scotland, i replyed to Kens post about how I decided to test and how I felt. I had the 3app. 2 but really it was just basic Q`s like what if pos, what if neg...what would be your plans, in what way would it change your life, he was really pretty negitive and made me feel worse after each chat! It really was informal and not much help as i felt he skipped over Q`s to get to the end and leave!

I had the `counselling` 3years b4 i tested. Where in the UK are you from?

Welcome fleur,
I am glad I had the test for HD. It seemed like those results would never come back, but they did and I was positive. I wasn't suprised becuase for some reason I just had the feeling that i had it. Since knowing the results I have been able to following along on drug trials and get started on medicines of my own that hopefully will delay the start of the HD symptoms. I am 51 years old and just now starting to see little signs of the disease.

Teresa

Fleur-
While everyone has surely had a different experience- my genetic counselors were absolutely amazing! It sounds as though the process is probably somewhat similar wherever you live- the first appt was informational, we were counseled on issues such as life insurance, long term care- repercussions of a positive gene test, effects on relationships, etc. My sister and I were each advised to bring a "support person" to each visit...this was very helpful. Due to the first meeting, I was able to obtain life insurance...which i wouldn't be able to now.

The second meeting was more info, they did neurological exams, watched us walk, etc. The third session was pretty intense, but very helpful as far as specific info on the disease (my mother was adopted so we didn't really know much to the point). They also did the gene test at this point- a pretty significant moment for a simple blood test. We waited I think about 3 weeks, and came back with friends and family for the results.

Fleur- it's an intense process, but if you are surrounded by people you love you'll be okay no matter what the result. My test was positive- but I had been informed and prepared (as much as I could have been!) by amazing genetic counselors.

I really struggled with my results...it's such a difficult disease- I'm a mother too. But wouldn't change who I have become as a result of the test...HD positive or not.

I know you are greatly supported and understood on this site...my prayers are with you.

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 Fleur

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!
Fleur

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!
fleur

glad to see you figured out the smileys , just wanted to add since you asked what to expect during the process, thank goodness my process was very similar to purplegal, I had a very postive team of gen counslors working and helping me every step of the way. and if it werent for them I could have never came out of the process the way I did.

I believe in the "it takes a family" approach to most everything---with every major {and some minor} decisions and steps in your life you need "family" whether it be friends, doctors, advisors, etc. You need a support system. I do and will always have my support system in place, and my friends have learned through my hd walk {though so far a short one} that they now have their supprt systems in plce as well. No matter how strong we think we are, we need someone to lean {or even fall} on once in awile.

Please know my thoughts are w/you
DCB

Hi Fleur,

I am usually a lurker on this board but thought I would post my thoughts as I have a foot in both camps as it were. I am Scottish but am now living in the States and so am familiar with boths sets of protocols as I tested over here but the rest of my at-risk family is in Scotland.

From my experience both sets of protocols are very similar and much of the questions you get asked overlap. Boths sets of counceling are designed to make you look inside of yourself to see how much of an impact a postive result would affect your life. One very insightful thing my american counselor said was that most at risk people already live as if they are gene positive, and given that she asked what would really change if I were shown to be gene positive. That was very true for me.

I think the British, at least the Scottish, HD medical community tends to use testing for confirmation of symptomatic people only. Testing there is used mainly to transition a Phd into the support network. As a result I could see why some people may find the counseling process negative if they are asymptomatic. There is a good reason for this though, and that is that the social security safety net, despite it's flaws, is more generous than in the US, and as a result the need for financial preparation and family planning is greatly reduced. I know that in Scotland at least, even some cycles for PGD (in vitro embryo testing) are paid for by the State if you are verified at-risk, so choices about having a family etc are easier to make without knowing your status. So in the UK there is little advantage to knowing your status if your are an asymptomatic Phd. In the US, financially the consequences of having HD can be huge if you are not prepared, and so pre-symtom testing makes more sense to the medical community.

When I decided to get tested it was to make decisions about having children while living in the US, and the huge financial investment PGD would be. I needed to contact my mother's geneticist in Scotland to find out her repeat count, and even then it seemed that she tried to discourage me from testing.

My mother's own experience was very different though, it was clear that she was ill, and both she and I were prepared for what was obviously going to be a positive result.

I can only say that on both sides of the pond counselors have always been immensely supportive and approachable, and I echo what people have said above, that it would have been a much harder process withough them.



Edited 5 time(s). Last edit at 09/14/2007 01:30PM by BigMac.

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 friends here who know Im at risk and considering testing...but sadly no one yet in the London HD community. The HD support network is not well developed in London, which seems weird to me since its the highest concentration of people in the UK, 15 million.
Maybe that's why you in the HD Lighthouse family are quickly becoming very important to me -- youre a family that truly understands, which I havent had access to up to now.
It all feels a lot scarier to me if I cant talk about it, so having people I can be open with helps enormously. My husband is wonderful but I can tell he cant always engage with my HD anxieties, and I end up feeling rejected, so its best if I can share them around. I have therapy as well, which has helped get me to this point of being ready to test.
Bigmac, your experience is very valuable. I know a lot about HD already and have been thinking hard about it for a few years, so perhaps I wont need long gaps between counselling appointments. The gaps may be determined more by the National Health Service and when the counsellors can see me: it was a few months wait for the first appointment.
I feel ready to embark on the process now, and I hope its not too long and drawn out. The uncertainty feels pretty uncomfortable.
But hearing about your experiences gives me a framework I can think about so I really appreciate it.
x Fleur

Fleur, there's a navy blue colored "Smileys" just above where you write a response. Click on it and the smileys appear. When you are ready to insert one in a post just click on it the code appears. When you post the message it will show up.

Good for you for having therapy before testing! I have had some friends do it that way and I think it works better. That way, you know your counselor is on your side and dedicated to helping you, not a gatekeeper making you prove yourself before being allowed to test. And I also think that HD pushes all of our buttons so it's best to get all of your issues resolved. of course I am still working on that

I'm sorry you have a need to be here, but glad you found us!

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 Fleur