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Original poster

DP has spoken to the Doctor about getting tested for Huntingdon's

35 replies

boyoboy · 09/05/2011 19:21

He has a 50/50 chance of being positive....we have 5 children and it is for their future benefit he is being tested..

I am glad but I am scared to death, not only do we have the prospect of DP sufering with this incurable disease but also if he is positive our children could also have it.

If he tests negative then all is ok...non of our children need ever worry as they will not have it...

I dont know how I will cope with a positive response and Im scared we are in for a rough time if it is.

We have only just recently discovered that DP's father and brother suffer with this disease (once we had our own children! Sad)

DP's mother is insisting that he doesnt get tested, I dont think she can face another of her children tesing positive....I have said to DP we owe it to our children to know, it will either completely clear their mind or it will prepare them and them allow them to make their own choices...

Anyone any experience of this...I feel a little bit out of control

OP posts:
Northernlurker · 09/05/2011 19:24

No experience but you poor things. What a thing to face! Has he had the chance to talk to a geneticist about the condition and the testing?
Also horribly practical question but once he is tested if he is positive it will be very hard for him to get insurance. Have you everything in place that you would want - because tbh it's too late to apply now you know this is a possibility (iyswim)

Original poster
boyoboy · 09/05/2011 19:28

TBH Northern..Im pretty sure an insurance company wont touch you with huntingtons and the fact that the family history is know it would be invalid now if we took it out before testing anyway...

DP doesnt have insurance...very stubborn and short sighted of him Sad...I will certainly raise it with him thankyou for your very practical suggestion....my head is in a real whirl...if he does have it, selfishly Im going to have to look after him and possibly any of our children.....what a selfish thought...a positive result would change things so much

OP posts:
Original poster
boyoboy · 09/05/2011 19:31

We have read a lot about Huntingtons and I understand how it works..we have also discussed the testing in great detail...

He is going to ask his GP to refer him. He spoke to the GP today (which means he is serious about it as DP isnt really a great talker)

Think I feel a bit like im in a bubble

OP posts:
activate · 09/05/2011 19:33

good luck and stay brave

I'm sorry you're dealing with this but I think it's the right decision to find out for the sake of your family - you will need pre-test counselling of course

Northernlurker · 09/05/2011 19:33

I don't think it's selfish to think that at all. That is what a positive result may well mean and it will change things - which is why you both need counselling befor you embark on testing. I honestly don't know what I'd do in your dp's place. I think you do get to a point where you have to know though.

Whatever the test result though - that doesn't mean you will know exactly what will happen to dp and when. The course of the illness is variable and by the time your dcs get to the age that symptoms start there may be many more effective treatments. That's if he's positive of course.

Sorry about the insurance. I feel like a mercenary wench for even mentioning it but you do have to think about this sort of thing as part of your planning.

Original poster
boyoboy · 09/05/2011 19:38

Northen not mercenary at all....:) it is a very practical thing indeed and such a polic could potentially make a massive difference..

Thankyou activate....not sure how to sort out pre testing counselling I wouldnt be able to take it seriously until I knew for sure...dont think I could put myself through the thought process :(

OP posts:
lilyliz · 09/05/2011 19:44

I know a family who have been devastated by this,one branch of the family had 6 kids,now grown,some of them got tested some did not.Some decided to get sterilised and not have families and some went ahead and had kids,it's all up to the individual and what they feel they want to do.Hope you are the lucky ones.

Northernlurker · 09/05/2011 19:44

There is a Huntingtons disease association. The website doesn't seem to be working tonight Hmm It's www.hda.org. From what comes up on google it looks like that has a message board as well as other useful stuff.
I can see what you mean about not wanting to go through the though process BUT if dh has the testing and the gene then you may find yourself having to do a lot of thinking very quickly. It may be useful to sort of 'try the thoughts on' first because that may inform the decisions that both of you make.
Is DP totally set on testing?

Bumperlicioso · 09/05/2011 19:47

Goodness, what a thing to be going through. And of course you are having these feelings, there's no right or wrong way to feel.. Your poor DP and family. Hoping for a good result, and lots of strength.

Perhaps be aware that in the advent of a positive result you will need to support your husband, and while I absolutely think you and he will have to have some frank discussions, you may need some kind of separate support system in place where you can deal with your feelings without burdening him too much, at least in the early days.

nevergoogle · 09/05/2011 19:48

guardian article
interesting article linked here, apologies for title but it discusses the 'to test or not to test' decision well i think.
good luck boyoboy.
why were you not told this was a possibility?

Northernlurker · 09/05/2011 20:04

That is a fantastic article. Not easy reading at all but so worthwhile.

Op - I really, really hope you get some peace of mind for you and dp whatever you do and whatever results you get.

Original poster
boyoboy · 09/05/2011 20:10

nevergoogle....that article is amazing if not a little scarey

Not sure what you mean by "why were you told this wasn not a possibility"?

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nevergoogle · 09/05/2011 20:13

yes, very powerful article, very blunt.
I mean, why didn't you know your FIL and BIL's diagnosis earlier?
Is it all very recent?

TheVeryAngryMumapillar · 09/05/2011 20:19

I can only send you a lot of poitive energy...a prayer if you're religious...and one if you're not....I wish you all the luck in the world with the outcome oof this.

xxx

ChristinedePizan · 09/05/2011 20:28

Oh blimey - what a horrible thing to go through. My sister was diagnosed with cystic fibrosis last year (very late in life) and I couldn't decide whether to get tested or not but in the end I decided I needed to for the sake of my DS. I'm a carrier so he may be too and I suppose at least it means he can make an informed choice when/if he has kids although I feel really weird about possibly having passed on something really horrible to him.

I found the genetic counselling really, really helpful and there is absolutely no pressure at all to get tested at the end of it. If he is happy for you to be there, I really recommend that you are as his decision to be tested affects both of you and your children so it's something you both need to agree on if you can. There is no way of unknowing these things.

I haven't read the link but I'm assuming it's to the charlotte raven article which was very moving.

Northernlurker · 09/05/2011 20:32

Yes it is the Charlotte Raven article.

nevergoogle · 09/05/2011 20:33

yes, it's the charlotte raven article.

YeahThatsTheBadger · 09/05/2011 21:04

This reply has been deleted

Message withdrawn at poster's request.

Original poster
boyoboy · 09/05/2011 21:14

thankyou mumapillar....for your kind prayers

nevergoogle..we found out about DP's brother first about 3 years ago, from thier DP's father was diagnosed....previously through family history there had been a trait of what had been thought to be dementia, but as this quite often doesnt show till later age (nearly 60 in DPs fathers age) many have died fromm something else before the Huntingtons has got them...

Sadly DPs brother is very badly effected and is only in his early 40's, I dont think he would survive without the care he receives now :(

Our children range from 28 to 9(non of the older children have kids of their own yet).....the older children know about the illness but DP has said to save them all testing he will be tested...only if he is positive will they need to face getting tested.

OP posts:
Original poster
boyoboy · 09/05/2011 21:17

oh badger...Im sorry..gosh how you must have felt, how you must feel now :(

I would love to talk to you about what you want through if you are able and it isnt too imposing

My biggest fear is for the DC's...I will do anything for DP but the thoght of the DC's being ill too and us mybe not being here for them...it doesnt bear thinking about :(

OP posts:
nevergoogle · 09/05/2011 21:21

ok, 3 years doesn't sound like rushing into getting a diagnosis.
definitely go for the counselling too, well worth exploring how the result will affect you all, positively or negatively.

ChristinedePizan · 09/05/2011 21:26

Gosh how absolutely awful for you all :( Huntingdon's is an absolutely horrible condition.

I don't think they will test without counselling if your DH is not exhibiting any signs of the condition - certainly that was the case for my family.

springbokscantjump · 09/05/2011 21:28

Oh I am sorry you have to go through this Sad

I think that it is a good thing to get tested - I couldn't bear the unknown. I'm afraid it is sitting down and thinking through the practicalities. But rather than just thinking of the 'down' things, I would think of the things that you and your husband want to do together. Me and dh have a list Blush that we would do if one of us got a terrible diagnosis.

Original poster
boyoboy · 09/05/2011 21:31

Now you've said it, 3 years does sound a long time doesnt it...Its been a quick 3 years though when we look back, a lot of it spent watching how this illness has swallowed up DP's brother from a strong independent guy to someone who has mad mood swings but needs his food cutting up to pea size incase he chokes :(

it has taken this long for DP to take the step to go and see the GP and to tell his mother (who has her head in the sand) that he is going to be tested...

I supposed that while he is showing no symptoms we forget for a while (and I suppose badger will know whe im coming from).....every little stumble, every little facial twitch, every little memory lapse...and im wondering, is this it? ..

We just want to know once and for all, so we can front thins thing, so our children can go on and have normal lives or face thier own choices..

I cant think why it has taken so long to come to a decision...I watch our children playing in the garden and think "50/50 chance...but there are 5 of them, will it be 2 or 3 ??" ......DP is also 1 of 5....howmany o his siblings are affected, they all have children too :(...but we cant decide for them

OP posts:
bulby · 09/05/2011 21:41

Boyoboy I'm sorry for you and your family and my thoughts are with you. You might be interested to know that huntingtons disease is currently on the additional applies science GCSE course ( AQA board although it is going from the new spec.) and it often leads to discussion with pupils about what they would do if they found themselves in your situation. The reason I mention this is because you mention you have children and depending on their age this maybe something that will come up in lesson and they or their teachers may need warning about extra sensitivity or if they are older it maybe a starting point for discussion.