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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 30-09-15, 06:37 PM   #11
Dolphin
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Default Re: First meeting with Guys last Friday - so confused :(

Hi Bell

The thing about testing is that you may think you want to know but actually you don't. I was quite sure that I did but left a couple of years between appointments whilst I was still not sure deep down.

Most people don't really want to know their status.

On the other hand I did test in the end as I just knew that it was going to be positive and I felt my life was on hold.

If you have a good counsellor they will let you both explore how you're feeling and it is good to have time to have more perspective and take it gently.

If it is positive then not only do you open the box but you have to live in it too and that takes a lot of strength.


Dolphin
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Old 30-09-15, 07:40 PM   #12
Jenny66
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Default Re: First meeting with Guys last Friday - so confused :(

Hi
My husband has a HD predictive positive result, we also attend Guys. The staff there are wonderful, helpful, sympathetic, empathetic and most of all know what they are doing. I felt I wanted to know, our eldest son also wanted to know but hubby didn't until earlier this year when we started the process. All I can say is ignorance is bliss and we have had an awful few months but he remains symptom free. He chose to take the test as our sons are adults and thinking of having children of their own. Our HD area advisor came to our home a few weeks ago and met with us all including the girlfriends and gave us lots of positive ways to move forward. Don't feel you have to have the test just to have a family, ask about the options available. I know exactly how you feel although obviously I'm a lot older but the emotions are the same. Good luck in whatever you chose to do xx
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Old 01-10-15, 08:56 AM   #13
Joseharry
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Default Re: First meeting with Guys last Friday - so confused :(

Hi All,
I am going to Queen Sq today with my sister-in-law Jane aged 53. She is the last of 4 siblings to be tested, the other 3 including my Husband Roger were all positive and their tests were diagnostic rather than predictive.
Jane is not showing any symptoms but feels she owes it to her (grown up) kids to get tested.
Does anyone know if she will have to go through months of counselling. She is adamant that she just wants the test...she has had 3 years to think about it since HD first entered our lives.

Brenda x
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Old 01-10-15, 11:05 AM   #14
shiraz
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Default Re: First meeting with Guys last Friday - so confused :(

Hi Brenda....I can only say that Hubs did not have any counselling. It was offered but he just said what for? Just give me the tests (blood and brain scan) and so that is exactly what happened. He is not the chatty type anyway, so one day we saw someone who straight away said have you heard of hd? (no) and a month later he went for the tests. I'm not sure if it made a difference that he was full of symptoms but I doubt very much that you have to have counselling if you are an adult. If she has made her mind up then I imagine they will accept that decision. Good luck this afternoon.
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Old 01-10-15, 12:17 PM   #15
Crystal
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Default Re: First meeting with Guys last Friday - so confused :(

Quote:
Originally Posted by Joseharry View Post
Hi All,
I am going to Queen Sq today with my sister-in-law Jane aged 53. She is the last of 4 siblings to be tested, the other 3 including my Husband Roger were all positive and their tests were diagnostic rather than predictive.
Jane is not showing any symptoms but feels she owes it to her (grown up) kids to get tested.
Does anyone know if she will have to go through months of counselling. She is adamant that she just wants the test...she has had 3 years to think about it since HD first entered our lives.

Brenda x
Hi Brenda

Hubs never received any counselling - but was symptomatic and known to the Neurologist for many years although HD never suspected by either GP or Neurologist for many years and at that time we did not know HD had affected other family members. His two siblings (late 50's) both received counselling before having the test and one after a lengthy period of counselling was still told she would not be able to have the test as they did not feel she was ready emotionally to take/receive a result! She was offered extra counselling which she accepted and was eventually able to take the test. Neither had any symptoms at the time of counselling.
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Old 01-10-15, 09:34 PM   #16
Joseharry
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Default Re: First meeting with Guys last Friday - so confused :(

Hi All,
Thank you for your replies.

It was a very interesting afternoon which ended so differently to what we had expected.
Jane is Roger, my husbands sister. We have known each-other since we were 5 years old and have literally grown up together. We are the very best of friends, so much so that we can actually have a good row on occasions!
We have worked together, lived next door to each-other, laughed together and cried together...
We rely on each-other so very much.

Jane decided that she just wanted to be tested and asked me to go with her.

The Doctor explained from the start that as it was a predictive test and not a diagnostic one she would not have bloods taken today and she would need to attend at least one other session where bloods may be taken if the docs thought she was ready.
Although she is only 52, Jane is in quite poor health. She is an insulin dependant diabetic who had a heart attack 2 years ago. She is also partially sighted ( hopefully temporarily ) but it has been well over a year now since her sight went.
One of her main concerns was that she will literally drop down dead one day and if she has not tested would leave her husband and kids in limbo.

She is particularly concerned about her 28 year old son, currently in prison for harassment of a girlfriend. Jane was really worried that his obsessive behaviour could be attributed to HD.
So off we went to the hospital.....
Jane told the docs all of the above.

The Doctor told jane that she is currently displaying no signs of HD.

She also explained that Jane could have her bloods taken now and stored so that if she did "drop down dead"the results would be accessible to her family after her death. (That was a bit of a wow moment!)

She also said that Janes sons' behaviours could not be attributed to HD because it is impossible for a child to develop Symptoms of HD before its HD parent...so as jane has no symptoms nor has her son......( double wow moment)

So although we went there thinking we knew what Jane wanted the urgency to test has been taken away and Jane feels under so much less pressure.
We are going to her caravan again this weekend with some of the family to drink lots of wine, laugh , cry and ponder further.
What a day....
Brenda x
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Old 01-10-15, 10:24 PM   #17
banda
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Default Re: First meeting with Guys last Friday - so confused :(

OMG wishing you all a hair down weekend.....that is all so complex bu8t go for it. Take care xxx
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Old 02-10-15, 10:31 AM   #18
shiraz
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Default Re: First meeting with Guys last Friday - so confused :(

Enjoy your weekend - the wine, the laughter, pondering and even the tears - hopefully they will be of joy...

I find the comment that it is impossible for a child to display symptoms of hd before a parent strange....what about jhd? I'm confused by that. No doubt - well I hope - Allan might explain....

Have a good weekend with your good friend
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Old 02-10-15, 11:01 AM   #19
helen
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Default Re: First meeting with Guys last Friday - so confused :(

I just wanted to clarify that it is possible for a child to show symptoms of HD before a parent, although this isn't very common. If anyone has any more queries about this, please do get in touch with your local Specialist HD Adviser or Head Office.
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Old 02-10-15, 11:40 AM   #20
Joseharry
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Default Re: First meeting with Guys last Friday - so confused :(

Hi All,
Thanks Helen for the clarification.
We spent a long time on this subject and the Dr Rosser at Queen Square was adamant that Janes son did not have symptoms HD as Jane had no symptoms.

We really pushed on this point Shiraz and mentioned JHD but again she said even if the parent had not been diagnosed they would certainly be symptomatic.

The only thing I can think is where the parent is in the "grey area" and symptom free but the child displays symptoms.

Is this what you mean Helen?

Allan, passed on your good wishes to Dr Rosser, lovely Lady.

Kind regards to you all,
Brenda
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