I tested positive last January. I think it was one of the biggest decisions I have made to date. I was 18 when I started the testing process and I had to wait an entire year to get my results (they were secretly hoping that I would wait until I was older to receive the results).
It is a very nerve racking experience. I remember having these days where my emotions would get away on me and I would sit there and cry. I was the last of my three siblings to get my results. My brother and sister both tested negative.
I brought my parents and their spouses and my boyfriend to get the results. I already knew what they were going to tell me and to get the process over was a relief and numbing.
It was a tough experience, but it has given me so much more drive to do better for myself and to get involved in my own life. I know can plan ahead for finances and for my family, although I can always hope that in another couple of years there will be a cure :)
Feel free to ask me anything!
hi guys my name is Nicholas Duncan. I'm 26 yrs old.Hd has been big part as of my life for as long as i can remember! my grandad had the gene but back in those times they didn't know what it was so they just thought he was a nasty drunk. he passed away at 38. he had 5 kids only 1 tested negative the strongest case in that generation was my uncle he was symptomatic at 18 and was dead by 30. he had a son who also tested positive and was symptomatic at 9 still alive now but wont make it to 25. my dad started showing symptoms at 30 he is 56 and he died over the weekend. was the longest survivor of this thing in my family's history and truly my inspiration. i was his registered carer for 15 yrs since i was 16. so i have seen how it effects people from day one till the end! i had my test results done at 18 also took me a year of counseling. and i am have been symptomatic for the last yr but very mild issues mainly memory lose. i think the test result didn't really shock me cause they where only telling me what i already new.i have my own son and when he was 14 weeks in utero we took advantage of the testing before birth and we both agreed that if he had it we would of aborted because i have the power to stop this disease and to make sure it don't go past me and because its the only avenue to beat it we had no option.. thank the gods my boy tested negative. was the best new of my life and im just glad he got the better half of me!! well that's my experience with HD and im alwasy open to talking about it with anyone who needs just someone to talk to that is on the same level as them... well wishes to u all and good luck!:D
Hi Nick from Australia! I'm from Australia too and help out with this website and few HD websites in Australia. (www.hdaustralia.org and www.ourhdspace.org) Thanks for sharing your story. It sounds like you have had a lot to deal with in your experiences with HD...beautiful news about your son! Yay! Where in Australia are you? Im helping put together a young adult conference in Melbourne in 2 weeks time...so if your in Melbourne and interested let me know and I can pass on details! Michelle
I'm Kathleen from Montreal in Canada. I'm 29 years old, mother of 2, and was tested positive in April 2010. My granddad has HD, my aunt, and my mom.
The testing process isn't very long here. I had a first appointment with the genetic counselor in January and I had my result 3 months later.
Knowing my condition is a kind of relief for me. Not knowing was a torture.
While I was waiting for the result, I had very mixed feelings, but I think that's just normal.
Now I can hope for a cure. No matter what, I'll be prepared.
If you need any help, I'm in. I'm more comfortable in french though, english is my second language.
Welcome to the forum and thanks for sharing your experience of testing positive. HDYO is always looking for more translators to translate our material for young people worldwide. If you feel you'd like to help translate HDYO into French you can email email@example.com and we will discuss it further.
Hi my name is Brett Minnice. Im 29 years old, live in Oldham, England. The gene in my family comes from my fathers side my grandfather had HD and and my father was diagnosed with HD in the 90s so we have always been aware of condition. Me from my personal point of view i never thought that the predictive was for me at that point in my life. Then in early 2011 my brother when for his test without telling me because he didnt want to push me into having mine done but thankfully his came back negative. Then after nearly 11 years after being able to have the test my life had changed a lot i have a very understanding partner who i dearly love and two beautiful children and a very supportive family. There are also other reasons for me having the test, so towards the end of 2011 i went for my test. I received my results on the 6th january 2012 and it is a very daunting time waiting for the results there is a lot of stuff go through your head good and bad you have to have positive mind set. I got my results back and they were positive but i have always thought i had the gene anyway so i guess i was right. I wont lie and say its been easy to cope with cause it hasnt but like i said before i have a very good family. I couldnt pitcure going through this on my own i couldnt of done it on my own. I hope this help in some little way if any body else is thinking about having the test please make sure its the right time in your life there is no rush.
Thanks for posting. I think you are absolutely right about it needing to be the right time in your life to be tested. I figured that when I had more days that I thought I wanted to know than days that I wanted to wait, then the decision was made to get the testing done. For those of you on the fence, I think you'll know when your time is right... This is definitely not something you want to rush.
Brett, each month will be better than the last, and you'll start feeling more normal at about a year. I know it may sound like a long time away, but it comes quickly. Hang-in there, and if you need to chat, don't hesitate to use the forum.
thanks a lot katie and thanks for the advice i hope that it comes good cause i really feel down at the moment. Im trying to keep things in really i dont want my family any more up set than they already are so its good to have people outside the family to talk to about it who know what we are going through. Im struggling to sleep really badly as well i dont know how you was but im just so teird all the time thanks a lot for everything
Hi Nick, sorry for the delayed reply..ive just got back from a HD young adult meeting. Have you met Greg the youth worker in Perth? I reckon he would be really keen to hook up with you and get you involved! We have just started a National Youth Alliance also and looking for interested young people to get involved. Send me an email if you like to firstname.lastname@example.org and i can link you in
Brett, everything that you are feeling and going through is perfectly normal. After testing positive many people go through the stages of grieving (denial, anger, bargaining, depression, and finally acceptance). Everyone goes through them at different rates and may hit some of the stages in different orders.
I think the important thing here is to not stay in the denial stage for too long. It's okay at the beginning as it can provide emotional protection, but the sooner you get out of that stage the sooner you can learn to accept this.
I know the thing I struggled with the most was the fact that I couldn't "fix" this. I am a problem solver and so not being able to do anything about this test result really weighed me down. I've since accepted that and choose to try and control other things around me that will make a difference in my day to day life and future health. For me, it's working out... I know I feel way better after going to the gym, both physically and mentally. Brett, do you have something you can lock your teeth into? A hobbie perhaps?
Now to tackle your question about sleep... honestly, we all struggle. The day is busy, with many distractions to keep your mind from racing about HD... then the night falls, everything is quiet, everyone around you is sleeping soundly. At first I was analyzing my days: was I productive enough, was it a really great day, did I live it fully... I was putting way too much pressure on myself as I was seeing it as one day less on our timeline. Sound familiar? Other nights you may be tired as anything and as soon as your head hits the pillow you're wide awake.
The good news is that it does get better with time. The more time that passes after testing the easier it becomes to sleep. Again, I would say that many of these things will start to calm down around the year mark.
Make sure you aren't so hard on yourself. You've been through something really intense and you have to allow your body and mind to heal... Fatigue, lack of focus and concentration, insomnia, anxiety, can be symptoms of trauma... which is what you just went through. Give yourself some time to heal.
I think it is far too easy to get focused on the negative things around testing positive that I thought it would be nice to explore the other side; it would be great to start a discussion about the good things that come out of testing.
For example, after testing positive I know say "yes" more often to new experiences. Whether it's checking out new bands, traveling to different regions or meeting friends at a pub after a long day of work.
So I'll throw it out there for discussion... tell us what are some of the good things that have come out of you testing positive?
Good things that came out of testing positive.... hmmm
* Meeting kick ass people like Matty... etc.
* Appreciating life more... especially the little things.
* Realizing I should not settle with anything. (Relationships, friends...etc.)
* Getting to (sometimes) feel a sense of accomplishment if I am involved in helping others
* I got a cool tattoo...
* I don't care so much about things others worry about... (cancer, getting old, dentures, diversifying my stock portfolio...)
Hmm... that's all for now...