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Old 10-10-13, 08:47 PM   #1
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Join Date: Oct 2013
Posts: 5
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Hi there my name is rachel and I am new to this...

I have the test done for hd when I was 18 (I'm now 22) because I cared for my mother before she died when I was 10, I decided to get the test done because I knew that I had the chance of having the gene. I was told that I do have the gene and I thought that my world would fall apart but if anything it makes me apriciate life more and look at things in a different way.

When I got my results it also helped my 3 brothers decided to get the test done aswell (Sadly we all inherited the gene). I have been with my partner for 7 years now and he has been such a rock, we have looked at different ways of having children when we decide to have them and talked about our future.

The only problem I find is that I love him so much and don't want him to go through what I went through with my mum, because it was so hard for me and he deserves so much more. Does anyone else have this problem?
Thank you.
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Old 11-10-13, 08:19 AM   #2
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Location: East Anglia
Posts: 1,490
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Please don't have guilt feelings about being in a relationship with someone you love, my hubby has the gene and has now finished work, and starting to show many symptoms, and life as you know with your mum is challenging.

He is my world, we have had so many good years together and lots of laughter and fun along the way, two wonderful sons who are not tested yet, and Iwould not change anything, apart from removing this horrible gene default from so many families. We all come this way once, some of leave sooner than others, and fate does not allow to us know the future, there are many people out there caring for their loved ones, they do for that for a reason Love! you have been open and honest in your relationship, he knows the facts and has decided to stay, if he was unhappy or did not love you he would have gone before 7 years.

Carry on living life to the full, and be happy and don't waste a second worrying about what the future holds around the corner is a cure.

Take care x
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Old 11-10-13, 10:55 AM   #3
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Join Date: Oct 2006
Location: West Yorks
Posts: 931
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Hi rachel

New to message boards but not new to Hd eh .

My mum died whne I was 12 and my brother was 6 ( our father had long since gone ) . He has now got symptoms and I am caring from him .

I have a partner who has stuck with me and the situation though not an easy situation and am not sure what would happen if I get sick ( I am untested at the moment) .

We dont have any children but do have a small dog who we all love .

It is hard to know what will happen to any relationship in the future and some people stay and somepeople leave .

I was fascinated to see husbands caring for wives with HD at the first AGM as my expereince was of a father that did not give a damn so epople do stick together with this disease .

Have a good weekend and hope you are doing something lovely .

Take care

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Old 12-10-13, 07:43 PM   #4
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Thank you ever so much it really means a lot.
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Old 25-11-13, 02:10 AM   #5
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Location: Cambridgeshire
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Hi Rachel

Sory for the late reply but I haven't been on the board for a while.

I tested positive in 2004 and fortunately have a fantastic husband, but having a positive HD result makes you look at life differently from others. I am quite pragmatic and since my mum cared for my dad until he died, I have said under no circumstances will I want my husband to do that for me.

As soon as I get to hard to handle I want to go in a specialised home. I saw what HD did to my mum each and every day and I don't want my husband to have to go through that. We have honest and frank discussions on what might happen to me and he is fully briefed on my wishes. I have also informed my mum, eldest daughter and cousin in case my husband isn't around when I start with symptoms. I have already started looking at homes and was really p'd off when Bishops Palace at Ely shut as I really wanted to live there.

I am also on the brain donor register (through addenbrookes, Cambridge) so my brain goes to medical research and if anything happens to me (not HD related) I want to be DNR. I am currently looking into living wills as I don't know when the mental incapacity will kick in and I want my rights to be upheld but I have to be of sound mind otherwise it could be contested.

I have a 50/50 daughter and a HD free daughter (by CVS testing), feel free to contact me if you need to.

All the best
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Old 24-07-14, 08:21 PM   #6
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absoultely, i dont want to put anybody through this, my husband is also a rock. I have 4 younger brothers, and 4 inlaw siblings plus parents, i really dont want any of them seeing me lke this, but i really dont have a choice. especially with my husband, he wont leave me no matter how much i fret x
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