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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 21-04-09, 11:22 PM   #91
just1moreperson
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Default Re: To have children or not?

I hate the hit by the bus philosophy. Getting hit by a bus is in no way a comparison to being at risk with HD.
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Old 22-04-09, 03:28 PM   #92
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Default Re: To have children or not?

I'm sorry you had to make that choice Megan, it's not nice at all.

Tc, Matt.
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Old 22-04-09, 05:17 PM   #93
pasnthru
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Default Re: To have children or not?

Quote:
Originally Posted by just1moreperson View Post
I would like nothing more than to see Pasnthru make a thread about their HD experiences and explain how HD has affected their family. As of yet it hasn't happened though. Until it does then we can't understand well enough to really offer the right support and advice.
I thought that I had explained that it has totally devestated my whole world. The specifics are probably the same as anyone else. Watching someone I love totally breaking down into a shell of a body. Does this not explain enough? I have siblings and nephews and neices that have decided to ignore HD and carry on like HD isn't in my their family. I will be the one left to care for these people because they were ignoring the facts. Yes I'm angry because it will be me who has to be there. Just like it was last time. No one around to take care of these loved ones. The excuses "I'm not going to worry about it". Well, guess what..I'll worry about it...
Quote:
Originally Posted by Buddybird View Post
Caz,

I have to agree with you there, some people living with a parent affected by HD would rather have had their life than not been born at all. It does sound like Pasnthru is having a very difficult time and seems quite depressed at the moment. Have you seen a Dr about depression and sought help for it? I understand many people have a bad time with HD affected family members, they can be very demanding and hard to reason with.

However I disagree that any child born to an HD affected parent can't have a good life. Caz, it sounds like your Dad is like my husband, HD hasn't affected him as far as being a parent and loving his children. Sure he is sick but he never sat back & just let it take over, he fought this disease, did voluntary work in between jobs, still works 2 days a week yet is in full time care. My son is always excited when Dad comes home and sits with him having a massage or just holding hands - he loves his Dad so much. Although he has JHD, like his Dad he fights it all the way and his determination & independent personality is likely the reason he is still with us today.

We did go for counselling before having children because Anthony was at risk, we sat with a Counsellor discussing the situation and tried to involve other couples who were in our position but nobody came forward. So we went ahead & had children, I was not fully aware of what HD was at that stage which is why we went to counselling, there was no internet to give me any idea of what to expect - I thought my husband would just get sick and die & didn't know the course HD takes.

Maybe we were the lucky ones to have Anthony with HD which, because he couldn't do his normal job any more, gave him the chance to spend more time with his children, be involved in their kindergarten duties, Dad's nights, put our son to bed every night and read him a story with a massage right up until he left home. He has never been rough with the children, from the time they were born he was totally involved in their lives.

I am sad that you feel so low at the moment and really hope you are able to get some help from professionals to at least lift your spirits a bit, I am not aware of your situation but will search through previous posts to see if you have already talked about your life with HD.

I wish you well and hope this burden lifts from your shoulders so that you can get on with life and live with this disease rather than let it beat you.

Buddybird
OK I clearly see that this has hit a nerve among alot of you. What can a professional do for me? Give me antidepressants? Tell me to be thankful that I am "negative"? I have tried their toxic drugs and believe me I am much clearer without them. As I stated before, this is my story. My opinion. Mine. My truth hurts but yours cannot change mine. I honestly think that if there were a poll for children that tested negative they would tell you that they would still have to look HD in the face(whether caring for another loved one, or having to relive the many years of watching their loved ones suffer). I think that some of the people who learn that HD is in their family run as far away from this never to look back. So what changes? The only thing that can change is my opinion of HD and it is not going to happen. Not in this lifetime or the next. I came here to vent and clearly now I need psychological help. I sincerely appreciate all of the support I have gotten from many of you, but fail to understand how my opinion can have such a backlash. I realize that those of you who are HD+ see things in a different light. Man I wish I tested negative. My perspective is from one that has and the result never really changed a thing for me. I never got married because of HD, never had children, never had any type of "normalcy" in my world..Embarrased..Anyone felt embarrased by the way HD has been ridiculed? I don't think there is a "forget HD pill" . I still maintain that life is not "healthy" with regards to any affiliation to HD unless one can totally ignore the repercussions of the disease. Only my opinion here. I thank all of you for your feedback, and especially thank those of you who do understand.
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Old 22-04-09, 05:56 PM   #94
DH
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Default Re: To have children or not?

I've avoided responding so far, but if I may I'll answer as I can. Just so you know I'm 39, HD+ but not symptomatic, with my mum in early stages.

Quote:
Originally Posted by pasnthru View Post
Having a child out of "selfishness" is not a reason to gamble passing on the gene. The only way to irradicate the disease is not passing the gene to the next generation. Doesn't this really mean having no children?
I agree completely. Taking a 50/50 chance that you won't pass on the gene is way too short odds to risk. Kids don't deserve that, not when there are ways to avoid passing on the gene (pgd, etc.)

Quote:
Originally Posted by pasnthru View Post
There will probably not be a cure in anyone's lifetime now. HD only affects a few of us and seems like research will be only for the more common diseases.
No, that's not quite right. A lot of the research by the drug companies is concentrating on finding the root cause of HD. Not because they'll make a shed load of money from "curing" HD, but because they beleive the research will open up treatments for Parkinsons and Alzheimers where they will make a shed load of money (and at the end of the day that's all they're in it for). I will not become symptomatic because some form of treatment will come along at some point that will delay the onset of the disease; that is my firm belief.

I'm not sure how to respond to the rest of your post; you have some very powerful emotions - and some of the responses you've received have not been very sympathetic. But it is difficult to know how to respond - you have your feelings, I have mine. I suspect they are at oppersite ends of the spectrum, but that doesn't make either of them any less valid. We are both correct in that we are both reacting to the hand that life and fate has dealt us. I've not been exposed to the full horror of the disease as it's only been known about for a few years in my family and even then in a "HD lite" form because my mum isn't showing many symptoms. You obviously have had your family ripped apart by the disease. I also take part in a lot of research studies where I get to talk to the researchers and perhaps some of their optomism rubs off on me?

However, please stick around and keep posting. I think this message board needs you more than you need it...
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Old 22-04-09, 06:04 PM   #95
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Default Re: To have children or not?

Hi Pasnthru,

I wanted more specifics yes. I know your life is affected by HD, we all have that link. But it's the specifics that seperate us from eachother on here.

You seem a bit reluctant to talk openly about exactly who in your family has suffered with HD but that's fine, many people do that here so don't worry. I think you revealed enough in your last post.

Now I see why your so angry even though your negative. Your angry you will have to care for other family members who aren't so responsible, is that right? You also hinted that you've been a carer for someone with HD already, hell maybe more than one person. I can see now why you would say some of the things you said previously.

The thing with HD is it's different for each family. Where you couldn't imagine a child in an HD family having a happy life, others do have that. There are so many different details that change our perspectives and how we live.

I'm sorry if you felt unwelcome, your extremely welcome here. I just wanted to try and talk about things with you because anger is not a good thing to live with.

If you don't mind me asking when did you test? Was it after you made the choice not to have children?

I hope I haven't offended you in anything I've wrote.

Tc, Matt.
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Old 22-04-09, 07:10 PM   #96
Caz
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Default Re: To have children or not?

Hi Pasnthru

Sorry if I over reacted to your previous post, everyones entitled to their own opinions and sorry for not respecting that.

Also I fully appreciate that everyone has totally different experiences, and hope that i did not upset anyone else.

I, like you DH, are on a couple of ongoing research programmes and I feel confident that there will be a treatment available in the future.

Please continue to express your opinions.

Caz
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Old 25-04-09, 01:53 PM   #97
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Default Re: To have children or not?

Hey, i haven't posted on here before but check in every now and again to see how everyones doing.

I came across this thread and have been thinking it over and i guess my love for a good debate has got the better of me and have been itching to get my views across. I get this from my dad, and i guess i'm more like him then i care to admit, lol.

Other things i inherited from my parents would probably be my stubbornness (i rarely admit defeat in an argument) my caring nature, a will to better myself and to not give up, to be kind to others, my smile (we smiths are not great at the whole 'cheese' thing in front of camera's, my youthful looks (thankyou mum ) and a faulty gene.

I have put this last as i feel it doesn't define me in the slightest unlike everything else i have been passed on from my parents. It doesn't really make me who i am or tell you what i'm like as an individual.

Since learning about the disease was in my family i have often thought about children and what that would mean for me. My first instinct was to think i cant possibly pass this on to an other child and believe me i have thought about this from every angle.

But then i realised that i have to be honest with myself. In the future i would love to have kids and its an instinctive feeling, something i believe that is as natural a yearning to our species as eating and breathing. (i do apologise guys i have been watching far too much animal park, wildlife sos and other documentaries)

I would like to go through PGD with the best hope for my children but if it were to exhaustively not work would i give up the dream and not try naturally or deny my longing to adopt if all else fails to stop the suffering that my child will experience in the future if my result was positive and for the disease to kick in?

Some may think this would be a selfish action but then i think of my mum and my childhood. My mum has deffinatley had some knocks throughout life but i would say that she is the most unselfish person. She always put a smile on for her children, she always put us first in every single aspect. Working all day everyday and coming home and putting up with 2 boys and a girl (all hyperactive and during our teens, very moody to say the least!!). Growing up now and having a job i have no idea how she had the energy or time and i admire her even more for this.

Huntington's, don't get me wrong is a devastating disease and it breaks my heart thinking about my family and others on this site. But at the same time it has given me a new perspective of life. It brings a tear to my eye everytime i think about my mum, how brave and strong she has been, and how she has not let it ruin who she is so far, she still has the biggest smile on her face when i come home, the best hugs, and the need for a gossip on the phone. It really does amaze me how people have the ability to cope and the emotional capactity we have, i guess its not just our brains but i can only describe it as a soul.

I have so much more to offer a child than a faulty a gene. I want to be a mother and could give them the same start in life that my parents gave me. Hopefully in the future there will be cure and some form of treatment for when my children grow up. If i were to have the faulty gene they could have a whole life ahead of them before the disease (if my result is positive) kicks in. And i would hope that they would feel how i do now, to cherish the times that we do have.

I cannot shun all great experiences in my life, like having a partner or children due to this gene. There are so many unknowns. I may even be 70/80 who knows before the disease started and theres so much i could give a child before this time.

Ok im starting to waffle now, and since i work nights its deffinatley time for sleep. Hope i didnt offend anyone, just being honest with myself.

Bye

(p.s love you mum - im sure your eyes popped out of their sockets with anticipation when you saw id written something!)
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Old 27-04-09, 03:01 PM   #98
Caz
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Default Re: To have children or not?

Oh Jen

Have only just found this, what a beautifiul post. I am so proud of you too for the way that you are coping. Love you so much.
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Old 27-04-09, 03:52 PM   #99
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Default Re: To have children or not?

Welcome Jen, what a lovely tribute to your Mum, she is very special.
Hi Caz xxxxxxx
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Old 27-04-09, 06:04 PM   #100
Caz
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Thanks frankie,
xxxxx
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