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Old 18-02-16, 01:35 PM   #1
May
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Hello . I have followed this forum for about six years but never posted. Nobody in my family admits to HD. my aunt died of an illness that made her shake and loose the ability to speak. Then my mother and her brother developed symptoms. I have three brothers who won't speak to me any more saying I am stupid and such a disease does not exist. I had a test yesterday and it was positive. And despite councelling I am devastated. My husbands family are giving me a hard time though they live abroad saying that I don't get on with my family and that I have pushed them away. I have three children and my mother knew she had HD before I had them. She could have saved me from this pain. I feel terrible.
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Old 19-02-16, 12:45 AM   #2
shiraz
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Oh May
I don't know what to say to you other than...I am soo sorry that you find yourself in such a dreadful position. I guess your brothers are too scared to face up to the fact that they too may have hd....and sadly this is something that happens - families break up, secrecy and lies and denial. And so hd goes on and on.....

I take it you mean you got your test results yesterday and despite the counselling are devastated. Hopefully your husband will be there for you and friends who will rally round for you.....I am so sorry. I truly am. x
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Old 19-02-16, 09:06 AM   #3
toosh
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Quote:
Originally Posted by May View Post
Hello . I have followed this forum for about six years but never posted. Nobody in my family admits to HD. my aunt died of an illness that made her shake and loose the ability to speak. Then my mother and her brother developed symptoms. I have three brothers who won't speak to me any more saying I am stupid and such a disease does not exist. I had a test yesterday and it was positive. And despite councelling I am devastated. My husbands family are giving me a hard time though they live abroad saying that I don't get on with my family and that I have pushed them away. I have three children and my mother knew she had HD before I had them. She could have saved me from this pain. I feel terrible.
Hi May
I've replied on another post.
I think your brothers are sadly burying their heads in the sand.
That won't change anything for them. If they have the gene, they have it. No amount of not wanting to know is going to change anything. I think you have done the right thing for your children ( although not sure what ages they are). As Allan says there's lots of research going on at the moment. We all live in hope that there will be a cure found for the next generation
X
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Old 19-02-16, 01:27 PM   #4
Crystal
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Quote:
Originally Posted by May View Post
Hello . I have followed this forum for about six years but never posted. Nobody in my family admits to HD. my aunt died of an illness that made her shake and loose the ability to speak. Then my mother and her brother developed symptoms. I have three brothers who won't speak to me any more saying I am stupid and such a disease does not exist. I had a test yesterday and it was positive. And despite councelling I am devastated. My husbands family are giving me a hard time though they live abroad saying that I don't get on with my family and that I have pushed them away. I have three children and my mother knew she had HD before I had them. She could have saved me from this pain. I feel terrible.
Hello May - I know you are receiving some really good advice from others on the message board under your other post, but just wanted to say, firstly, how sorry I am that you have now received a positive result. I do not have HD, but my husband and eldest daughter do - so, while I am unable to speak from the perspective of someone in your own very recent situation (others the same as you have already posted) I just wanted to say that however devastating the situation is for you all at this moment in time, I absolutely applaud your decision to take the test - your decision - your choice! Choices that you are now able to give your own children. 'Hidden no more' - they will not blame you, like many others on this message board, we did not know that HD was in our family, until relatively recently - by which time, many of us had already had our own children. Late onset of symptoms, wrong diagnosis .... or maybe 'hidden away' - all played a part in this. I know you will need time yourself to come to terms with your own diagnosis, but if it's possible, maybe try not to leave it too long to tell your own children. Once HD enters our lives, sadly there is no turning the clock back - we have to try to move forward, to give the next generation empowerment, to make their own decisions with the knowledge that is now available to them, for their own futures and that of having a family of their own. In time, maybe to take part in research - and please do give them something positive to hold on to in this respect. Many young people with HD in their family are doing amazing things to raise awareness and raise money also for the HDA and research. It gives us all a focus and something to aim for. You and your family - and I mean 'your' family, need all the love, support, knowledge and any help that is available to you - and you can give this to each other, but only with honesty and openness that HD has entered your lives and you will find the courage and strength to get through the difficult times together and help to support each other.

I personally feel it is perhaps the best option to tell all of the children together, but I have seen the ages of your own children and it may be best (just from a personal point of view) to tell the eldest two and then include the youngest - as the way we present HD to them initially will be different and age appropriate. You may well find that they have been aware that something within the family has been happening and drawing their own (wrong!) conclusions as to what the problem may be. If this is the case, sometimes after being told, there may be a sense of relief that they now understand why things have been unsettled or tense within the home, (but I am not taking away the enormity of how difficult it will be for them and for you when the time comes for them to know). Please understand that this really is from my own perspective and each and everyone of us living with HD will have different experiences of how to tackle all the difficult decisions and emotions that we have to. You will experience relief once your children have been told I'm sure, because at the moment this is one extra burden for you to carry and it's better that they hear it from you and your husband sooner rather than later (rather than hear it from someone Else).

Sending you my best wishes and good luck with whatever decisions you make and whenever you make them. Also to always remember 50/50! May the coin fall on the right side for them.

Crystal
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Old 19-02-16, 02:53 PM   #5
May
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Thank you.
I told my children last year that my mother had HD. The genetics clinic had traced her sister, my aunts test results, and confirmed my belief. I only know about HD because I am a science teacher and was teaching a lesson on HD and cystic fibrosis. As I read about HD, it started to fit my relatives so well. At the funeral of a young cousin who died of cf, I saw all the relatives together, and my mother and uncle were hopping around whilst everyone was still. A few days later I asked my mother whether her brother had Parkinson's disease. She dismissed me saying no don't worry he's fine. I then asked if he had Huntingtons. She screamed and yelled at me asking me who told me. She has persisted in that line. She says it's nothing to do with me and the only thing she wants to know is who told me. I asked her to tell my brothers, but she won't . And now we have not spoken in five or so years. I told my brothers but they didn't want to know.
The only certainty that my mother has it is my test result. My husband rang her and asked if she had had a test, and she said she could not answer that question. The fact that people are reading this and telling me it's ok to feel rubbish makes me feel better.
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Old 19-02-16, 03:57 PM   #6
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Oh May
This just sounds so sad and like a classic case of head burying and not wanting to talk honestly. It's awful that your mother says its nothing to do with you - when obviously it most certainly is and now, through no fault of your own, your own children are at risk. How sad, and that your family are now distancing themselves from you and continue to be in denial - this is why hd continues to flourish - through secrecy,denial, ignorance, shame even. Heartbreaking to read and just adds to your distress.

My husband is the same CAG as you, 41. He's 72 now and still going strong - so just remember it's not all doom and gloom. There is still a life - a good life with fun and laughter - to be had. Honestly. I wouldn't change being with him for the world. x I just wish he didn't have hd.
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Old 20-02-16, 12:52 AM   #7
Melody
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Hello May and welcome

I'll be honest and say I read your post last night and thought ... what do I say?

Our trusted friends above have given you great advice as always. It just beggars belief that so many family members are in complete denial about this disease....... It's no ones fault, nothing to be ashamed about and your brothers really need to man up and accept the illness.... If they choose not to test, yes that's fine, but if they have children they really should let them know there is a risk, before they themselves have children.... Could be they decide to have children with that knowledge, but it is an informed decision, not like you and you are dealing with the guilt/consequences of not being told and having a family in complete denial.

Try to live for today.. Hubby seems to be supportive.. Accept all of these emotions are normal and live your life as best you can.

Take care.x
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Old 20-02-16, 06:12 AM   #8
Markoson
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Hello, even I am new to this forum. Hope I get good friends here.
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Old 20-02-16, 09:06 PM   #9
May
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Thank you all. managed to walk the dog today with my son. Hopefully will be with it for work Monday. May
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Old 21-02-16, 01:19 AM   #10
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May....that's the power of fur.....they are always there for you.
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