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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 25-07-15, 01:03 PM   #1
Lovelf
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Default Worried girlfriend

Hello.
I am very scared and need to hear some other people's views about what I am going to say.
My boyfriend, who is 22 years old, is at risk of having HD. His mother is now having it.
When my boyfriend is falling asleep, I can see that his fingers and toels (and rarely face as well) are mildly twitching. When he is finally sleeping there is no twitching anymore. Also, he is sometimes stuttering, and he says that he has been doing that since he was small.
I have read about pre-symptomatic HD carriers and it is written that sometimes symptomes can be seen even in the young age.
I am really scared and I would like to know if this twitching while falling asleep might be a symptome of HD?
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Old 27-07-15, 12:41 AM   #2
shiraz
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Default Re: Worried girlfriend

Hi Lovelf

I've just stumbled across your post which appears to have gotten lost in this clunky old system again....just like it says it is your ninth post but it's your first right? Gremlins again

Anyways, all I can really say is given that you know your boyfriend's family has a history of hd you may well be symptom hunting. It is a ghastly disease. But, when I'm real tired I twitch and itch all over....or suddenly jump in bed like I feel I'm falling. Hubs twitches - not that you would notice - all day long, you just have to hold his hand, touch his arm, his thigh - it's like little butterflies and random involuntarily movements and it doesn't stop whilst he sleeps, nor does his mouth/tongue. So,maybe you are over analysing out of fear and panic - maybe not. What you are really asking is....I'm scared so help!!! I love this guy what should I do...

That's entirely up to you. You can stay and love him for who he is - is he thinking of getting tested - and play it by ear as it were? or you can say I can't do this I have my whole life ahead of me.....All I can say is that we are none of us dealt a perfect hand in life - we all suffer some tragedy/heartache/illness. I wouldn't change my husband for the world because of the lovely times we had in the past. But...you are so young and so many possibilities lie ahead - for both of you, together or apart. I am (at least I feel it) so old and and I am a wife, I am legally bound.

In essence..you need to talk to your boyfriend about your emotions and really think hard. Wishing you well - good health, good luck, good fortune - whatever you decide.
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Old 29-07-15, 01:40 PM   #3
smile
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Default Re: Worried girlfriend

hi,

i am 31 and my partner is 32, he is positive for HD. he is showing sligh symptoms now, moods & twitching. it is a very scarey time when you think what you future may hold. you need to do what is best for both of you. talk to your boyfriend and tell him your fears or maybe even speak to a professional, they may be able to answer any questions that you have.
take care
x
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Old 29-07-15, 07:39 PM   #4
Stuart
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Default Re: Worried girlfriend

Hi there,

Twitching while falling asleep can be perfectly normal.
Here's a link to an article about it:

http://www.livescience.com/39225-why...ng-asleep.html

The article says that it's thought that 60 to 70% of people do it.

I understand your concern for your boyfriend and hope this makes you feel a little bit better.

Watching for HD symptoms is common for those at risk and their loved ones too and can become a very stressful problem all by itself. There are many people who have posted here who've been convinced they are showing symptoms of HD but have then tested negative.
Talking about your fears with your boyfriend and finding good professional counsel is the right idea. It must be very hard for you both dealing with his mother being ill with HD and I think seeking support and advice will help help you cope much better and feel less scared.

All the best
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Old 29-07-15, 08:53 PM   #5
Lovelf
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Default Re: Worried girlfriend

Quote:
Originally Posted by shiraz View Post
Hi Lovelf

I've just stumbled across your post which appears to have gotten lost in this clunky old system again....just like it says it is your ninth post but it's your first right? Gremlins again

Anyways, all I can really say is given that you know your boyfriend's family has a history of hd you may well be symptom hunting. It is a ghastly disease. But, when I'm real tired I twitch and itch all over....or suddenly jump in bed like I feel I'm falling. Hubs twitches - not that you would notice - all day long, you just have to hold his hand, touch his arm, his thigh - it's like little butterflies and random involuntarily movements and it doesn't stop whilst he sleeps, nor does his mouth/tongue. So,maybe you are over analysing out of fear and panic - maybe not. What you are really asking is....I'm scared so help!!! I love this guy what should I do...

That's entirely up to you. You can stay and love him for who he is - is he thinking of getting tested - and play it by ear as it were? or you can say I can't do this I have my whole life ahead of me.....All I can say is that we are none of us dealt a perfect hand in life - we all suffer some tragedy/heartache/illness. I wouldn't change my husband for the world because of the lovely times we had in the past. But...you are so young and so many possibilities lie ahead - for both of you, together or apart. I am (at least I feel it) so old and and I am a wife, I am legally bound.

In essence..you need to talk to your boyfriend about your emotions and really think hard. Wishing you well - good health, good luck, good fortune - whatever you decide.
Thank you.
I'm sorry for asking, I just didn't understand some of your phrases (I'm not a native speaker). So do you say that if there are symptomes, then they are seen (or felt) not only when a person is falling asleep, but during the whole day? Like when I hold his hand, right?
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Old 30-07-15, 04:02 PM   #6
shiraz
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Default Re: Worried girlfriend

Hi Lovelf

I think we are trying to say that without him being tested you can't be totally sure he even has hd - it's a 50% chance - because if his behaviour and mannerisms are normal apart from just a bit of occasional twitching whilst falling asleep, it could just be you already being fearful about what lies ahead. In most cases symptoms don't start to 35 - 50, so may be just worrying. And you are wondering should I continue in this relationship/what does our future hold - all perfectly normal. I would have done the same. You both need to think and talk through this to allow your romance to grow and flourish, or not.

See I read in literature that the hd movements stop whilst you are sleeping, but I can feel tiny little twitches here there and everywhere. Before Hubs was on medication he would fling his arms and legs about whilst sound asleep. Wouldn't wake him up, but it sure woke me up.
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Old 31-07-15, 12:57 PM   #7
Lovelf
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Default Re: Worried girlfriend

Quote:
Originally Posted by shiraz View Post
Hi Lovelf

I think we are trying to say that without him being tested you can't be totally sure he even has hd - it's a 50% chance - because if his behaviour and mannerisms are normal apart from just a bit of occasional twitching whilst falling asleep, it could just be you already being fearful about what lies ahead. In most cases symptoms don't start to 35 - 50, so may be just worrying. And you are wondering should I continue in this relationship/what does our future hold - all perfectly normal. I would have done the same. You both need to think and talk through this to allow your romance to grow and flourish, or not.

See I read in literature that the hd movements stop whilst you are sleeping, but I can feel tiny little twitches here there and everywhere. Before Hubs was on medication he would fling his arms and legs about whilst sound asleep. Wouldn't wake him up, but it sure woke me up.
I have told it to him many times that I notice his twitches while he is falling asleep. He doesn't pay attention to this, thinks it is normal. And tells me that there is nothing to worry about. He doesn't want to be tested now, cause he believes that his life won't be the same after that. He will do it before we decide to have children.
I know that I cannot leave him, whatever the result will be. I love him and I feel that he is the right man for me. But I feel very scared about our future... I would be the happiest person in the world if his result will be negative...

What I wanted to know from all of you is have you noticed any marks of HD before the symptomes actually started? Can a young person show any marks of this disease before the onset?
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Old 31-07-15, 01:39 PM   #8
Allan
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Default Re: Worried girlfriend

Quote:
Originally Posted by Lovelf View Post
What I wanted to know from all of you is have you noticed any marks of HD before the symptomes actually started? Can a young person show any marks of this disease before the onset?
Hi there

I am an old man who doesn't have hd - but I have "twitches" [body and limb movements], I have moods, I get angry with certain people, and if I listed all the hd symptoms I could say that throughout my life I have experienced many of them, anxiety and irritability spring to mind. All that activity is known as "normal".

If you study Sleep Science outside of hd I'm sure there are many instances of "twitching" whether it's body or limbs as one is preparing for the sleep mode.

Does he have glazed eyes - and that far away look? If he does that means he is in love with you too.

.
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