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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 09-10-15, 07:39 AM   #11
Tom B
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Join Date: Oct 2015
Location: Norfolk
Posts: 22
Default Re: Tested negative!

Forgive me, I am new to this posting lark, so I don't know if my reply will be shown to everyone out there, I hope it does.

It took me a few days to submit my post, I felt guilty that I was so happy. Is that weird or what? I hoped that my post would give people hope through what is a very emotional l time.

I thank you all for your kind words, it really has helped my wife and I, get through this stage of our journey. I used to dream of how we would celebrate if she received a negative result. In my mind, champagne corks would be popping, and we would cartwheel our way back home to party the night away. We drove back stunned, we were drained. My wife had a cup of tea and watched 'The Great British Bake Off'. I just watched her. The strain and worry had disappeared from her beautiful face and I thanked whoever or whatever for providing our happy ending!

We've been together for over thirty years, good and bad times (such is life) but the past year was a doozy! But we supported each other through each and every day and we came out of it smiling, and we know in our hearts that many others will too.

Our thoughts and prayers are for all of those whose lives have been touched by HD and I hope one day that they pop a champagne cork, or watch someone bake the perfect soufflé!
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Old 13-10-15, 10:02 PM   #12
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: Tested negative!

Quote:
Originally Posted by Tom B View Post
I am writing this to try to bring hope to those of you out there that have been touched by HD, specifically those that are considering being tested.

Just over thirteen months ago, my wife was told that her father and uncle both had HD. The news came a week after her mother had passed away, it was an awful time for her. She went to our GP for advice, but he knew nothing of HD. He told her he would make some enquiries and contact her. A few days later he called my wife, after the call she sat me down and discussed the situation with me and our nightmare began. Typical of any Mum, her main concern was for our two children.

We contacted the HDA for advice and everyone we spoke to was fantastic and the information given was invaluable. We met again with our GP and he referred my wife to the genetics department at Addenbrooke's. We waited several weeks for an appointment, the day of which was four months from the day we met with our GP. Those four months were seemed like an eternity.

We met with Dr. Jenny Hague, (who for the next eight months became a lifeline to both my wife and I) and began our counselling. We had four sessions in total, and Jenny covered all the bases, including how to tell my children, the thought of which was in itself heartbreaking.

Three weeks after meeting with Jenny, and four days before my beautiful daughter left home to move to London to start her new teaching job and her new life as an individual, I sat with her and her 'happy go lucky brother' (who was two weeks away from leaving for his final year at university) and through my tears I told them that their Granddad was very ill, and lovely Mum may be touched by this disease, and if so, so might they be. They each handled the news differently, but their reaction (as Jenny predicted) wasn't as bad as I thought.


Three after telling them my wife was tested. Two weeks later my boy left home and my wife and I spent the next two weeks waiting. We met with Jenny for the final time and she told my wife she had tested negative, and our nightmare was over. I cannot describe the joy we both felt, and since that day (a week ago) every emotion has washed over us. My wife had been filled with guilt that she may have passed this disease to the children, I had felt so guilty for having put them through this ordeal for two months. As a parent you want to protect your children and keep the bogey man away, not bring him into their lives, thankfully this particular bogeyman has gone, but he may still be there for you. Don't let him frighten you too much, there is hope!

I know it's easy for me to say as we have had the all clear, but thanks to the counselling we received from Dr. Hague, and the advice from the people at the HDA I felt as if they had prepared us for the worst. We knew that if my wife had tested positive we would not have faced our ordeal alone, the support was already underway. Remember that, YOU ARE NOT ALONE! These people are caring, loving and dedicated and they help you. So if like me (after getting the news) you lay in your bed at night terrified for those you hold dearest in you heart and silently screaming for help in your mind. Help is out there!

I will always stay in contact with the HDA and Addenbrooke's and will help raise funds for their charities, (we planned a 'holiday of a lifetime' if my wife was negative, but we gave the money to their charities instead, it was the least we could do.) and if we can help in any other way, we will.

When it came down to it, it was a coin toss, 50/50, and my wife won. We've won the lottery! I hope and pray that you do too!

Our thanks to all those wonderful people at the HDA, our gratitude, love and admiration to Dr. Jenny Hague at Addenbrooke's, she held our hand every step and our hope and prayers for those of you who have been touched by Huntington's Disease.
Thanks for sharing your wonderful news. Someone once said yo me your health is your wealth. You just won the lottery.
Love the "when it came down to it, it was a coin toss 50/50.
Hopefully our new campaign will take off this weekend. Give s toss for HD
So happy for you and your family
Toosh
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Old 14-10-15, 10:24 AM   #13
glasshalffull
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Join Date: Aug 2015
Location: Kent
Posts: 57
Default Re: Tested negative!

so happy for you and what a wonderful gesture of your continued support HD charities.
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Old 14-10-15, 06:36 PM   #14
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: Tested negative!

Quote:
Originally Posted by Tom B View Post
Forgive me, I am new to this posting lark, so I don't know if my reply will be shown to everyone out there, I hope it does.

It took me a few days to submit my post, I felt guilty that I was so happy. Is that weird or what? I hoped that my post would give people hope through what is a very emotional l time.

I thank you all for your kind words, it really has helped my wife and I, get through this stage of our journey. I used to dream of how we would celebrate if she received a negative result. In my mind, champagne corks would be popping, and we would cartwheel our way back home to party the night away. We drove back stunned, we were drained. My wife had a cup of tea and watched 'The Great British Bake Off'. I just watched her. The strain and worry had disappeared from her beautiful face and I thanked whoever or whatever for providing our happy ending!


We've been together for over thirty years, good and bad times (such is life) but the past year was a doozy! But we supported each other through each and every day and we came out of it smiling, and we know in our hearts that many others will too.

Our thoughts and prayers are for all of those whose lives have been touched by HD and I hope one day that they pop a champagne cork, or watch someone bake the perfect soufflé!
thank you for sharing your post we need to hear both sides of the story and yes give some hope , feeling guilty for being happy is normal when we know others have not been so lucky but rejoice you should and thank you for continuing your support .

take care .
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