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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 18-08-08, 09:32 PM   #1
Tom.L
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Default To have the test?

I have been thinking of having the test for the last year now, and as much I try to put it into the back of my mind I have a couple of days where I dont think of it, and then I think about it and every outcome possible.

My mum has the gene and is 50 next year although she doesnt have any symptoms yet I do worry about her and If i can manage when she gets worse. My grandad is in the middle stages and has just been diagnosed with cancer which is really upsetting news but I have to keep strong. For the last year I have been thinking about having the test and wheather or not to have the test and when to have it.

I had my mind set on having the test 6 months ago and talked to my regional care advisor Bill, because I was worrying about shaking in my hands and had totally had my mind set on the fact that I was HD+. My mum said that its fine and its not HD but I am older enough now to realise that my mum can just be saying it to make me feel better or just to take it off my mind or just being realistic. After speaking to Bill I got another voice and realised from then on that I only have a slight shiver in my hands and notice other people do also but I hadnt really changed my mind on having the test.

I am totally stuck in the answer which will definatly change my life forever. As much as I dont want to , being realistic it will. I have saw loads of other people also struggle on the disiciton on wheater to have the test or not. People may say I am too young for it and I have my whole life to dicide and can wait to next year when I am maturer, but the result will just be the same then as it now.

On one hand I could have HD and then I could decide what I want to do in my life and make choices I may not have thought about. Although it will change the way I look at life, knowing will make me make decitions on my children and other things in life. On the other hand not having HD would mean the world and then could consentrate on life and my mum and to get married and have kids, even though I would do that with HD. I feel if I get into my head that I am living with the faulty gene then there will be no loss, as I already do live my life as normal but as I have the faulty gene and live life to the full. And then with the test I am negative it will just be amazing, although being put in to this frame of mind may effect me in post test guilt or shock.

If I would decide to have the test, I wouldnt want to tell my mum because I know she worries about my grandad and would want nobody to worry about me, but having somebody to come with you on the results day would be hard because going so far without telling anybody apart from here would be hard for me to tell people. If I am HD+ then my mum would be hugely shocked and I wouldnt know if it would be best not to tell her or to tell her?

I hope I made myself slightly clear lol and hope to hear from you

Love Tom
[Age 16] x
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Old 18-08-08, 10:08 PM   #2
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Default Re: To have the test?

Hi Tom,

Could you store it all away in a little box for a couple of years? Maybe wait until you have finished your A levels or even your degree? And then decide if you want to test or not.
I definately don't think your hands shaking are anything to worry about at all, I really don't.
HD will always be on your mind and particularly so at times like this when your Grandad is poorly and while waiting for exam results, you will feel extra sensative and your thoughts will be deep.

Personally I think its very important for you to concentrate on your A levels and maybe University, those times will be fun but also stressful. Then perhaps when you will still only be 21 you could see how you feel and decide if you are ready to test.
I think you will decide to test in the future but I am just concerned that it will affect your education if you do it now.
You will also be able to decide if you want to share with your mum or keep your decision to yourself.
I am sure you will get lots of good advice that will give you plenty to think about.
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Old 18-08-08, 10:11 PM   #3
twamoons
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Default Re: To have the test?

Hi Tom,

I can see you are a bit troubled at the moment, I can only tell you my circumstances, you are aware of HD, when my son was your age we didn't know about it. Even when we found out, we still didn't know the consequences, but we do now.

My son was 15 and had just won a scholarship to a music school in Edinburgh, and off he went, my mother in law at the same time found out what was wrong with her, as she had been adopted, there was no family history, we didn't live in the same place and for some reason she took off to London and we never saw her again, but we got odd snippets of news from other family members, of her being in a care home, etc., then we got news that my husbands brother was in the same boat, then alarm bells started ringing and I decided to find out a bit more, and now I am in the same situation, my husband got his result last year, but I knew for at least six years it couldn't be anything else.

Apart from that, my son moved on to London, to the Royal College of Music, we went to his graduation four years later and he has lived there ever since, he is aware of the situation, looked into it, even went to the HDA office when it was in London, he knows what might happen and has chosen not to test, his belief is live your life, and he certainly has, he's travelled world wide done things that I laugh about, and can't believe, played in the Albert Hall several times, done rock festivals, just living his life, he just tells his friends this disease is in the family and if he starts acting strange, just let him know, I can't tell you whether to test or not, it's hanging over him and it's hanging over you, I think at your age, you have a lot of life to live, places to go, things to do and I would put HD on the back burner for the moment, obviously you might meet somebody in the future and then you might have to make a decision, I would say get good results in your exams, plan what you want to do and do it, and be assured you're in the position whether you would be positive or not, the cure for hd is on the horizon, I wish you all the best, you have a lot of living to do, as for the shiver, nervous energy perhaps, lol, hope you have a good life,

Twamoons
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Old 18-08-08, 10:22 PM   #4
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Default Re: To have the test?

Quote:
Originally Posted by frankie View Post
Hi Tom,

Could you store it all away in a little box for a couple of years? Maybe wait until you have finished your A levels or even your degree? And then decide if you want to test or not.
I definately don't think your hands shaking are anything to worry about at all, I really don't.
HD will always be on your mind and particularly so at times like this when your Grandad is poorly and while waiting for exam results, you will feel extra sensative and your thoughts will be deep.

Personally I think its very important for you to concentrate on your A levels and maybe University, those times will be fun but also stressful. Then perhaps when you will still only be 21 you could see how you feel and decide if you are ready to test.
I think you will decide to test in the future but I am just concerned that it will affect your education if you do it now.
You will also be able to decide if you want to share with your mum or keep your decision to yourself.
I am sure you will get lots of good advice that will give you plenty to think about.

Thank you for your advice x

Although I will be 21 I know now that I wont be able to stop the pressure of it all and think about, what if this and what if that? The problem is I cant put things in the back of my mind, I think about it every day and worry about it, I have thought about having the test for about a good 9 months way before the pressure of my exams and stuff and though I have the rest of my life , It may just take my mind off it if i have the test, or just make it worse.
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Old 18-08-08, 10:26 PM   #5
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Default Re: To have the test?

Quote:
Originally Posted by twamoons View Post
Hi Tom,

I can see you are a bit troubled at the moment, I can only tell you my circumstances, you are aware of HD, when my son was your age we didn't know about it. Even when we found out, we still didn't know the consequences, but we do now.

My son was 15 and had just won a scholarship to a music school in Edinburgh, and off he went, my mother in law at the same time found out what was wrong with her, as she had been adopted, there was no family history, we didn't live in the same place and for some reason she took off to London and we never saw her again, but we got odd snippets of news from other family members, of her being in a care home, etc., then we got news that my husbands brother was in the same boat, then alarm bells started ringing and I decided to find out a bit more, and now I am in the same situation, my husband got his result last year, but I knew for at least six years it couldn't be anything else.

Apart from that, my son moved on to London, to the Royal College of Music, we went to his graduation four years later and he has lived there ever since, he is aware of the situation, looked into it, even went to the HDA office when it was in London, he knows what might happen and has chosen not to test, his belief is live your life, and he certainly has, he's travelled world wide done things that I laugh about, and can't believe, played in the Albert Hall several times, done rock festivals, just living his life, he just tells his friends this disease is in the family and if he starts acting strange, just let him know, I can't tell you whether to test or not, it's hanging over him and it's hanging over you, I think at your age, you have a lot of life to live, places to go, things to do and I would put HD on the back burner for the moment, obviously you might meet somebody in the future and then you might have to make a decision, I would say get good results in your exams, plan what you want to do and do it, and be assured you're in the position whether you would be positive or not, the cure for hd is on the horizon, I wish you all the best, you have a lot of living to do, as for the shiver, nervous energy perhaps, lol, hope you have a good life,

Twamoons
Wow, your son must be very talented, I like to sing when I am down haha hardly crack a good note though! Thanks for the advice. It is definatly hanging over me and I cant let it go or put it to the back of my mind, I see what can happen to me and wonder if i take the test I could do something about it. I already live my life to the fun and ran half marathons, done a skydive and would done anything if I enjoy it and getting the result would definatly not change my inhibitions to study or go to university just tell me " I am HD+, there is nothing I or anybody can do about it so carry on as normal and do what I was going to do with my life until it comes happen otherwise", where as If I dont have the test I could be worrying about I might do this, but I will wait to I get the test done. If that makes sense!

xx
Tom x
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Old 18-08-08, 10:59 PM   #6
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Default Re: To have the test?

Going by your family history, the likelyhood is that you'll be a relatively late onset.

So, get tested now safe in the knowledge that if you are HD+ you'll pay stupid amounts for your life insurance for the rest of your (long) natural life. And believe me, when it comes to mortgages and stuff that IS a consideration!

Or go on a gap year or three, away from anywhere you can get tested and enjoy yourself. You've plenty of time to do everything you've dreamed of.
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Old 18-08-08, 11:14 PM   #7
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Default Re: To have the test?

Hi Tom
Good advice from DH there with regard to mortgages and life insurance etc. I understand what you mean about not being able to put it to the back of your mind though, some people find that easier than others. I also understand you wanting to know before serious relationships, kids etc. Perhaps it would help you to set a date sometime in the future, when you will begin the testing process, say after graduation or after your 25th birthday or something. Then knowing that you have a definate date or deadline may help you put it to back of your mind in the meantime.

LL
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Old 18-08-08, 11:33 PM   #8
lesley.p
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Default Re: To have the test?

Hi Tom,

My Husband tested negative three years ago.
His monther had died a few years before we met and he wasn't close to his family, so whilst I knew there was a risk of Huntington's, I didn't know much about it and he very rarely talked about it. When our son was born seven years ago, his worrying began. The more he worried whether or not he had Huntington's and whether he had passed it to our son, the more symptoms he thought he had. He was very depressed and some times his hands or legs would twitch. This would worry him more so the depression got worse. This cycle carried on until May 2005 when he decided to visit our G.P. and start the testing process. On the 5th August 2005 (I will always remeber that day) he received a negative result, but did not tell any of his family that he was going through testing until he received his result. Immediatley his movements stopped and over time his depression lifted although even now he gets upset and down as members of his family either have Huntington's or are at risk and he had a negative result.

I ask him now if he knew then what he knows now would he have tested earlier and his reply is always no. He has always said that he has lived his life (he is only 33) as if he had Huntingtons, so lived for every day, always thinking at the back of his mind "I have to do this now or try this now as one day I may not be able to".

Although it is your decision to test, my advice would be not to rush into testing unless you are positive thats what you want and try not to symtom watch as stress causes some symtoms.

Good luck for your GCSE's and your future
Lesley
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Old 18-08-08, 11:33 PM   #9
lesley.p
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Default Re: To have the test?

Hi Tom,

My Husband tested negative three years ago.
His monther had died a few years before we met and he wasn't close to his family, so whilst I knew there was a risk of Huntington's, I didn't know much about it and he very rarely talked about it. When our son was born seven years ago, his worrying began. The more he worried whether or not he had Huntington's and whether he had passed it to our son, the more symptoms he thought he had. He was very depressed and some times his hands or legs would twitch. This would worry him more so the depression got worse. This cycle carried on until May 2005 when he decided to visit our G.P. and start the testing process. On the 5th August 2005 (I will always remeber that day) he received a negative result, but did not tell any of his family that he was going through testing until he received his result. Immediatley his movements stopped and over time his depression lifted although even now he gets upset and down as members of his family either have Huntington's or are at risk and he had a negative result.

I ask him now if he knew then what he knows now would he have tested earlier and his reply is always no. He has always said that he has lived his life (he is only 33) as if he had Huntingtons, so lived for every day, always thinking at the back of his mind "I have to do this now or try this now as one day I may not be able to".

Although it is your decision to test, my advice would be not to rush into testing unless you are positive thats what you want and try not to symtom watch as stress can cause some symtoms.

Good luck for your GCSE's and your future
Lesley
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Old 18-08-08, 11:36 PM   #10
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Default Re: To have the test?

Hiya Tom,

I understand somewhat...what you're going through. Having it on your mind all the time just annoys the hell outta ya. I think Frankie's advice was good, but as you say Tom it is on your mind far too much to put it away for a few years. Its tough mate. It's your choice and I honestly can't decide either way for you.

A point Dave made about onset being late in your family. That's something you should think about Tom. You may well have 40 years even if your HD pos. That's plenty of time for good treatment and a cure perhaps. So try not to worry. If you decide to test though you know we are all behind you bud. Me n Ash will help you through it as best we can.

Tc, Matt.
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