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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 02-04-10, 07:13 PM   #11
waz1980
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Default Re: Never felt so alone

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Originally Posted by Amaryllis View Post
Wow. You really have been hit hard with this. Your mum obviously thought she was protecting you from having to deal with HD for as long as possible. Even if she didn't make the right choice in that, there's comfort to be found in knowing she was trying to do her best by you.

I'm like you in that I'm tied to my mum's locality now and I've had to overhaul my life goals. It's easy to get resentful but that can stop you finding joy in the life you can have now. Like the old saying goes, 'you could get run over by a bus tomorrow' so although living at risk of HD is hard, it's best to try to keep a sense of perspective and to remember that there are always people who are worse off.

I think you should be very careful about scrutinising yourself too much and seeing HD symptoms. What you might assume to be early symptoms could just as easily be caused by clinical depression and stress. If not knowing your HD status is eating away at you, it may help you to go through the genetic counselling and testing process. We can all be tired, clumsy or forgetful and even minor tremors can be caused by stress and anxiety. Don't be too quick to self-diagnose because that way lies a whole different kind of madness. If you're genuinely concerned, do get professional medical advice but be aware that it's quite possible to worry yourself into making assumptions, particularly given the fact you only found out about your HD risk in a very recent and shocking way.

I'm glad you have some good friends and some HD acquaintances. I'm not surprised you're still reeling from all this. Give yourself time to get used to having HD in the family and don't expect to be able to cope with everything. HD is bad enough when you know it's coming and you do have the support you need. I'm glad you're not holding back when it comes to seeking counselling and support.

Hugs x
Your comments are very very true and you have reassured me on some things as well.

If I do talk to some of my friends, they say..you wont get it, or just go for the test or something along those lines. But coming on here, people understand that these things are not as easy as they sound.

My mum may have thought she was protecting me but I may have had the chance to live a better/different life. I didnt 'come out' until I was 27 for fear of persecution, stupid I know but living a lie for so long really affected me. Then I met my current partner, all was good, then the HD bombshell and life is crap again.
If I had known about my mums risk and my risk I would have lived differently, done more things that I put off as I thought I would do them later in life....

I see you are in Kent, Im next door in Crawley Sussex. I attend at present the North Kent SG in Sidcup.

I can go several days without symptoms and some come and go for weeks. I did have some bad twitching/spasms but they seem to come and go. My memory has never been fantastic but I have had a few issues with it, but that may ben stress. I will see what the genetic counsellor/consultant says later this month. I have no visible signs, maybe its in my head, but is feels too real.

I am lucky in that I work for Virgin as an Engineer so I get amazing travel perks and go to places I could only dream of, for a fraction of the price.

Things could be worse but they could be a lot better, being in the middle will have to do for now.

I just wish I wasnt 'losing' my mum as its affecting me and my sisters, but thats another story.
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Old 02-04-10, 07:17 PM   #12
waz1980
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Default Re: Never felt so alone

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Hiya Wayne,
I dont know if there is something in the weather or if it "just" this HD effect but I am feeling low myself today but I know in a couple of days I will be laughing again as though nothing is wrong even though inside it will be the same and I will still be hurting like nobodies business to see my son of 43 being taken by HD. Even though he looks well I know, he is losing lots of his abilities to do simple tasks like reckoning up things plus his movements are a lot worse .
Wayne you are doing very well and you will pick up even though you are low at the moment.
People do get very scared of asking but it would be a very good idea to take Matts advice and talk to them about it.
If that doesnt work then stick to the ones who are close to you and will talk to you.
My friends will talk to me anytime day or night, and even though I know I wont ring them it really does help to know they are there for me.
So sorry you are feeling this way but the message board does help as we all know in one way or another what we are going through and a big plus is that we will talk about it. xxxx
Thank you for your comments. My mum is already struggling with some things and as she is a nurse at our local hospital, she is struggling with some aspects of this as well. I hope she can carry on for a bit longer as I worry for her when she can no longer work. She is already becoming fearful of going out and only seem to go to work and back.

I hope you pick yourself up in the next couple of days, we just need some warm spring sunshine!
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Old 02-04-10, 11:21 PM   #13
Amaryllis
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Default Re: Never felt so alone

I think you will definitely find it beneficial to see the genetics team. I don't know where you'll have to go but I've met quite a few of the team at Guys now and they're fantastic. Are your sisters curious about their own HD status? Is genetic counselling perhaps something you guys could do together? If you wanted to take your partner with you for support, that would also be completely fine.

Genetic counselling is really only to discuss your feelings about being tested though. I think maybe you would benefit from regular counselling sessions and that's something you'd have to access separately, probably through your GP. Because HD is very rare, GPs often know very little about it so don't be afraid to make it clear what you're going through.

I don't know whether anti-depressants would help you while you come to terms with all this. Your GP may be able to prescribe meds to help with any specific problems such as anxiety, insomnia, panic attacks and so on. I'm not suggesting you go popping all sorts of pills willy nilly but as a short term measure and combined with appropriate counselling, meds like this may help you to cope until you've come to terms with everything a little better.

Losing your mum is very difficult. My mum has been symptomatic for 7 years and most of her symptoms are psychiatric, which means her personality has changed a great deal. I can certainly empathise with you there.

I was going to pm you but you don't have private messaging enabled. To do that you can go to your 'user control panel' (top left of screen) and click on 'edit options' where you'll find a tick box to enable private messaging.
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Old 03-04-10, 09:38 AM   #14
waz1980
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Default Re: Never felt so alone

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Originally Posted by Amaryllis View Post
I think you will definitely find it beneficial to see the genetics team. I don't know where you'll have to go but I've met quite a few of the team at Guys now and they're fantastic. Are your sisters curious about their own HD status? Is genetic counselling perhaps something you guys could do together? If you wanted to take your partner with you for support, that would also be completely fine.

Genetic counselling is really only to discuss your feelings about being tested though. I think maybe you would benefit from regular counselling sessions and that's something you'd have to access separately, probably through your GP. Because HD is very rare, GPs often know very little about it so don't be afraid to make it clear what you're going through.

I don't know whether anti-depressants would help you while you come to terms with all this. Your GP may be able to prescribe meds to help with any specific problems such as anxiety, insomnia, panic attacks and so on. I'm not suggesting you go popping all sorts of pills willy nilly but as a short term measure and combined with appropriate counselling, meds like this may help you to cope until you've come to terms with everything a little better.

Losing your mum is very difficult. My mum has been symptomatic for 7 years and most of her symptoms are psychiatric, which means her personality has changed a great deal. I can certainly empathise with you there.

I was going to pm you but you don't have private messaging enabled. To do that you can go to your 'user control panel' (top left of screen) and click on 'edit options' where you'll find a tick box to enable private messaging.
Hi, I have enabled PM. I have seen the genetics people at St Georges and im off there again in a couple of weeks. My sisters are too young to be tested - 16, 13 and 8, only the eldest 2 know about HD and the eldest has taken it badly.

It was recommended that I have 'normal' counselling but my GP said that there was nothing local to me and to source it independently, which can be v expensive. But it would be good to get things off my chest more often than coming on here for a rant.

I already take lots of pills, well supplements so I guess if I really cant cope at present then some sort of help will probably get me through.

My mum has bad chorea in legs and her personality is changing alot. I see ACR-16 could help a lot so im hoping it does come out within the 12 months they are saying.
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Old 03-04-10, 09:47 AM   #15
Blondie
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Default Re: Never felt so alone

I understand what you mean about friends not really understanding HD,or the impact it has on your life.I haven't seen one of my friends for a long time due to distance and life ect.We were talking on the phone the other day and she wants me to go and spend a weekend with her sometime,alone for a break.Her comment was 'don't let this illness consume your life'.Fine in principle but practically!!?My 17 year old daughter has JHD.I said she needs me here to wash and dress her each morning,her step dad carn't do that.She said get social services in to do those jobs in the morning and evening.Oh and social services are going to battle with her every night when she gets her 'no' head on and won't go to bed and take her meds?They will stick around if she goes into a violent rage?They will pace back and forth to the toilet with her most nights and then have the battle to get her off again?She has no idea,not even kids of her own.I never said any of the above to her as there's no point.When we do have respite at the hospice I go with her and stay in a flat whilst the staff look after her.I do a lot of sleeping and just chill out.It's not just the person who has JHD/HD who suffers,although in different ways.
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Old 03-04-10, 01:05 PM   #16
Stardust
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Default Re: Never felt so alone

Hey Wayne,
I reckon it could be the time of year....I've been feeling terrible recently! and I seem to remember having these sorts of feelings at Easter last year.....I have had huge ups and massive downs since getting my positive result in December 09.

Sometimes I see loads of symptoms in myself but I don't think this has got any worse since knowing my result.

If my boyfriend tells me one more time that I could get hit by a bus I'm going to push him under one!!!!

I guess in replying to your post I'm just trying to reassure you that the way you are feeling is normal, we are a similar age and I like you have had a few regrets about not doing things that I have put off for later in life....

Any way take care mate

*Stardust*
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Old 03-04-10, 01:23 PM   #17
waz1980
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Default Re: Never felt so alone

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Originally Posted by Blondie View Post
I understand what you mean about friends not really understanding HD,or the impact it has on your life.I haven't seen one of my friends for a long time due to distance and life ect.We were talking on the phone the other day and she wants me to go and spend a weekend with her sometime,alone for a break.Her comment was 'don't let this illness consume your life'.Fine in principle but practically!!?My 17 year old daughter has JHD.I said she needs me here to wash and dress her each morning,her step dad carn't do that.She said get social services in to do those jobs in the morning and evening.Oh and social services are going to battle with her every night when she gets her 'no' head on and won't go to bed and take her meds?They will stick around if she goes into a violent rage?They will pace back and forth to the toilet with her most nights and then have the battle to get her off again?She has no idea,not even kids of her own.I never said any of the above to her as there's no point.When we do have respite at the hospice I go with her and stay in a flat whilst the staff look after her.I do a lot of sleeping and just chill out.It's not just the person who has JHD/HD who suffers,although in different ways.
Hey, thanks for the message. Sorry to hear about your situation, this HD does come from all angles.
Im just starting out in the HD world and its looks like a long old road.
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Old 03-04-10, 01:33 PM   #18
waz1980
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Default Re: Never felt so alone

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Originally Posted by Stardust View Post
Hey Wayne,
I reckon it could be the time of year....I've been feeling terrible recently! and I seem to remember having these sorts of feelings at Easter last year.....I have had huge ups and massive downs since getting my positive result in December 09.

Sometimes I see loads of symptoms in myself but I don't think this has got any worse since knowing my result.

If my boyfriend tells me one more time that I could get hit by a bus I'm going to push him under one!!!!

I guess in replying to your post I'm just trying to reassure you that the way you are feeling is normal, we are a similar age and I like you have had a few regrets about not doing things that I have put off for later in life....

Any way take care mate

*Stardust*
Hi, which parent has/had HD? I was told that if I had the gene I would be expected to get it around my mums onset age, about 46, give or take a few years. Im 29 so maybe I shouldnt be looking out for symptoms yet, maybe I am depressed/stressed/going crazy?!?!?!

I do think about the testing process but dont think im in the right frame of mind at the moment.

Thanks for the reassurance about the symptom thing, just need to convince myself!
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Old 04-04-10, 11:41 AM   #19
Amaryllis
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Default Re: Never felt so alone

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Originally Posted by waz1980 View Post
Hi, which parent has/had HD? I was told that if I had the gene I would be expected to get it around my mums onset age, about 46, give or take a few years. Im 29 so maybe I shouldnt be looking out for symptoms yet, maybe I am depressed/stressed/going crazy?!?!?!

I do think about the testing process but dont think im in the right frame of mind at the moment.

Thanks for the reassurance about the symptom thing, just need to convince myself!
HD is caused by an over-replication of genetic code on chromosome 4. If you inherit the expanded (HD+) gene from your mother, for some reason it's more stable and you should become symptomatic at about the same age, though there are exceptions to this rule, it's a trend rather than an absolute. If you inherit the faulty gene from your father, it's less stable and so the number of over-replications (also called a CAG count) can vary a lot. There's a loose correlation between the CAG count and age of onset. An extremely high count of 100 or more is known to cause JHD. Very low counts can result in late onset or even no onset at all. In the middle of the spectrum it's much harder to make correlations about age of onset.
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