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Old 14-08-12, 09:22 PM   #1
susanyoung
New Member
 
Join Date: Aug 2012
Posts: 2
Default Hope for us...

hello - I am newly registered to this site, I have suffered depression and constant worry for years now over Huntington's disease. I do not hold the risk personally but my husband and two sister in laws do, I have seen the sufferings of my mother in law from onset until death and understand very much the progress of HD in our family as i have seen, it is such an awful condition and I pray everyday that we do not have to suffer in that way. I live in the constant fear of the condition affecting our family(3 children), which takes over daily thinkings in an unhealthy manner.

I took the step to try and transform all of my negative energy into something positive by creating my own blog, it is not a place for me to dwell on the negative but to try and focus on the positive, to research the use of alternative supplements and ways of life to decrease our chances. It is a collective of my thoughts, a reform of thinking for me and if anybody would like to share some of the positive findings i have found then please have a look and follow my research. It is not written in my opinion but simply as statements of information i have found on the internet and I can't guarantee there accuracy but provide links to the source for further reading.

If anybody has any experience with using any of the supplements or super foods i am currently researching i would love to hear from you about your experience. My blog is: [hopeforhuntingtonsd.wordpress.com]

I would like some connection with people who understand what this horrible darkness is like, this forbidden topic, it has brought hope to me as i start on an adventure to locate every piece of positive research/trial out there! :-) Good luck to you all!
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Old 15-08-12, 03:40 PM   #2
vix
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Join Date: Jun 2012
Location: Manchester
Posts: 39
Default Re: Hope for us...

Quote:
Originally Posted by susanyoung View Post
hello - I am newly registered to this site, I have suffered depression and constant worry for years now over Huntington's disease. I do not hold the risk personally but my husband and two sister in laws do, I have seen the sufferings of my mother in law from onset until death and understand very much the progress of HD in our family as i have seen, it is such an awful condition and I pray everyday that we do not have to suffer in that way. I live in the constant fear of the condition affecting our family(3 children), which takes over daily thinkings in an unhealthy manner.

I took the step to try and transform all of my negative energy into something positive by creating my own blog, it is not a place for me to dwell on the negative but to try and focus on the positive, to research the use of alternative supplements and ways of life to decrease our chances. It is a collective of my thoughts, a reform of thinking for me and if anybody would like to share some of the positive findings i have found then please have a look and follow my research. It is not written in my opinion but simply as statements of information i have found on the internet and I can't guarantee there accuracy but provide links to the source for further reading.

If anybody has any experience with using any of the supplements or super foods i am currently researching i would love to hear from you about your experience. My blog is: [hopeforhuntingtonsd.wordpress.com]

I would like some connection with people who understand what this horrible darkness is like, this forbidden topic, it has brought hope to me as i start on an adventure to locate every piece of positive research/trial out there! :-) Good luck to you all!
Hi there would just like to say my partner has been tested for the faulty gene and he has got it, we are devastated, his mum is at the end of hers and is very ill now. his sister had the test done as she wanted to start a family and she also has the faulty gene and his eldest brother had the test who has also got it. he stil has 3 other brothers who have chosen not to yet have the test done. we have 2 children who have a 50% chance and it breaks our heart to no this. i feel i am living on a time bomb and so does my partner. the hardest thing for us is that the hospital since giving us the results 6 months ago have not been in touch to see how we are coping, we had a follow up letter telling us he had the gene 3 months ago and nothing since. i cant believe how backwards it all is the way they do the testing we both believe no amount of councilling can stop you doing the test as he was determined to have it dun but i suppose everyone thinks it wont happen to me and we got a big shock being told he did have it.
i have a question thats driving me mad. all the web sites tell u the longer the repeat tbhe earlier the signs but they dont give u any guide as to what number is long apart from 40+ repeats. iv not been on here for a while as it brings it all back to reality again but we are really struggling to cope and i believew knowing others going threw the same as us cud truely help.
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Old 19-08-12, 09:18 PM   #3
Cupcake
Approved Member
 
Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Hope for us...

Quote:
Originally Posted by vix View Post
Hi there would just like to say my partner has been tested for the faulty gene and he has got it, we are devastated, his mum is at the end of hers and is very ill now. his sister had the test done as she wanted to start a family and she also has the faulty gene and his eldest brother had the test who has also got it. he stil has 3 other brothers who have chosen not to yet have the test done. we have 2 children who have a 50% chance and it breaks our heart to no this. i feel i am living on a time bomb and so does my partner. the hardest thing for us is that the hospital since giving us the results 6 months ago have not been in touch to see how we are coping, we had a follow up letter telling us he had the gene 3 months ago and nothing since. i cant believe how backwards it all is the way they do the testing we both believe no amount of councilling can stop you doing the test as he was determined to have it dun but i suppose everyone thinks it wont happen to me and we got a big shock being told he did have it.
i have a question thats driving me mad. all the web sites tell u the longer the repeat tbhe earlier the signs but they dont give u any guide as to what number is long apart from 40+ repeats. iv not been on here for a while as it brings it all back to reality again but we are really struggling to cope and i believew knowing others going threw the same as us cud truely help.
Hi

I don't fully understand the length of the repeat, but like you thought the longer it is the earlier onset. The time bomb situation we all recognise, it is very difficult coming to terms with the situation, have you contacted your local advisor, they would be supportive to you, any maybe there is a support group close to you. I have found this site very helpful, on my down days as friends and family don't really understand the impact on us as a family, although they try.


Take care xxxxx
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