Cbreeze - you say the future (MIL) should mind her own business, but fail to see it IS her business. Who will help her son should his wife develop (according to her she is already showing) signs of HD? SHE WILL. Who will need to help with the upbringing of her future grandchild should there be one plus the 2 that are not even related to her biologically & go through the same issues of testiby Buddybird - Huntington's Disease Support Center
It's been a long time since I was on these forums but felt compelled to add my 2 cents worth to these decisions about having children when at risk of HD. We had 2 beautiful boys before the testing process was available, my husband was at risk & we went for counselling to ask about having children & were told that my husband had a 50% chance of NOT having hd. Why did we act as though heby Buddybird - Huntington's Disease Support Center
We had Bailey on Melatonin which I didn't have to pay for as it was funded for me. It had to be done by a special pharmacy who did compounding. It was prescribed for sleep but despite changing dosages it didn't do any good. It is available at health food stores as a tablet but that isn't as concentrated as the compounded liquid form, it had no side effects but as far as stopping degenerationby Buddybird - Huntington's Disease Support Center
Thanks for your replies, I think the point I am making is would people rather "kill" a sperm & egg which join together or watch jhd kill their little child quickly. I just wanted Kathleen to think about people opting for PGD. I still feel lucky I had the most gentle, kind & loving husband who is now badly affected by HD but still has those personality traits. I was also luckyby Buddybird - Huntington's Disease Support Center
My goodness, I had never even considered this. I would imagine the Drs would just say that none of them formed well enough to implant and try again next time - maybe the idea of being tested before starting a family is the best way however hard it is. At least you could be clear to just have children without the expense and time of IVF, and if positive then the Dr can be honest and say that allby Buddybird - Huntington's Disease Support Center
Kathleen, I haven't been on the board for a long time as I've been busy but after reading your post I have something to say which won't change your mind, hopefully it will make you stop and think about PGD and people's choice to use it. I had to watch my 2 small boys go through Juvenile HD. They had seizures constantly, they lost the ability to walk, they lost the ability to be understood,by Buddybird - Huntington's Disease Support Center
My husband's CAG count is I believe about 42/43 but our first child's was 150 and our second child was around 113. Consequently our first child lived to 7, the second to 11. I do know of someone in the grey area who may never develop HD but their child has JHD, first time they had even heard of HD was when the child was diagnosed so the parents both tested to see which one of them had the faulby Buddybird - Huntington's Disease Support Center
At the World Congress there were speakers like Charles Sabine and another man who's name I've forgotten who are gene positive. Charles is 50 and worked for CNN covering the war, the other gentleman works in the scientific area of finding treatments/cure for HD. So how can the Neurologist say that by having a brilliant mind and getting honours means that you can't have HD? I agree with Brent -by Buddybird - Huntington's Disease Support Center
Does anyone know if the man's sperm changes when he becomes symptomatic? Would this create a larger chance of either JHD or just passing the gene on than it would when he is pre-symptomatic? Considering they now say that symptoms can occur up to 15yrs before onset of HD does this increase the risk of the sperm being affected and therefore passing on the faulty gene? Buddybirdby Buddybird - Huntington's Disease Support Center
Hi, I tend to agree with Blondie, if you are worried yourself about your son then make an appointment with a GP and get to a specialist who can take a look. You say not many Drs around you know about HD, I find this incredible, it affects so many people yet no Drs know anything about it? There must be a Neurologist who deals with movement disorders who knows something!! A Neurologist canby Buddybird - Huntington's Disease Support Center
Hi Kerri, I've had 2 small children with JHD, the eldest died age 7, the youngest died aged 11. The first sign was behavioural problems, however that was mainly at home not at school. Both boys related very well with other children and made friends, formed close friendships and had friends over to play as well as playing at others' homes. Social skills with the youngest were abnormal but boby Buddybird - Huntington's Disease Support Center
Barb I am so very sorry to hear of Dan's passing, I didn't know he was ill. He will still live on in your heart forever but that's no comfort to you right now. Know that our thoughts are with you. Debbieby Buddybird - Huntington's Disease Support Center
Hi Michelle, If she loves her massage so much, is there a chance of including a bathing together with the massage? Or does that mean an extra person would be there trying to sponge her down while the massage is being done? How can they boot her out, how many places would you have around your area that take in people? It sounds like she knows she's hit them and feels bad for it but hasn't anby Buddybird - Huntington's Disease Support Center
Peter are you coming to the convention on Thursday? Seeing as you are in Brisbane you could probably walk there - would be good to meet up with you. Buddybirdby Buddybird - Huntington's Disease Support Center
Fred answered 'No' but hasn't given any reasons for it. Maybe it's night time where he is and he's gone to bed but I'm curious as to why he answered this way. Fred? Fred? MMM....might be asleep on his keyboard. Please don't turn this against Brett, I know him sort of on a personal basis and he's a lovely bloke. He really needs support at the moment and I would hate to think this thread brinby Buddybird - Huntington's Disease Support Center
Hi Michelle, As you know from my experience we had the best top person who was enthusiastic about the Association, that enthusiasm rubbed on us who are carers and we formed the Community Advisory Committee to help the Association help us. It went so well for a while but personal matters came into it and people left the organisation which meant the enthusiasm dropped considerably to the point nby Buddybird - Huntington's Disease Support Center
Beautiful baby and beautiful Mum - only in hospital 6 hours after the birth. Can't believe it, they virtually had to carry me out after 3 days - I could have stayed longer with no washing, cooking, shopping etc. Buddybirdby Buddybird - Huntington's Disease Support Center
Happy Birthday Eric old fella. Imagine being 50 Must be the oldest on this board now. Most of us are still in our 30s but never mind, we'll still understand your 'old timers' talk. Buddybirdby Buddybird - Huntington's Disease Support Center
Do all of us have to stay active, exercise and eat healthy even if we don't have HD? That takes all the fun out of life. I exercise when I check the mailbox every day, I'm active when I go to the supermarket and fight my way down the aisles, I eat healthy foods like chocolate, chips, nuts etc. If it wasn't for these forums we wouldn't have a clue about the medications available for HD peoplby Buddybird - Huntington's Disease Support Center
Any room for an Aussie? I would like to be Rizzo so I can be the nasty girl, I can push them all off the seat in the playground, I can sing while dancing on the bed, I can scream from the ferris wheel "I'm not pregnant" - sorry to give the ending away for those who haven't seen the movie. lol Buddybirdby Buddybird - Huntington's Disease Support Center
Oh now Brett, you are doing so much better already. You used the words from, first and for. Well done. Hehe Oh another - fielding. I love the fact that you are going to baseball with him and equally glad that he is excited that his Dad is there with him. He doesn't care about those tests, he just wants you and you sound the kind of Dad I had who took interest in their kids and were loved in rby Buddybird - Huntington's Disease Support Center
Hi JV, I'm the same as Hope2, we had children knowing my hubby was at risk, I didn't know a lot about HD as there were no computers back then. Both our children died of JHD, one at 7 and last April my 11yr old. I would definitely be going a different way with the knowledge you have to save you the heartache of not only the worry all through any children's lives but also to avoid the dreadedby Buddybird - Huntington's Disease Support Center
Sorry to do this publicly but could I ask if JL could contact me urgently as I don't have an email address that doesn't send my emails back to me. I urgently need to ask for help on something. Thanking you Debbie PS- as it's personal I'd prefer nobody replies if thats ok? Taby Buddybird - Huntington's Disease Support Center
Hi Brett, You do realise you suck more with these tests when someone is there waiting for the answers. I was a fast typist but when doing a test I was hopeless & made so many mistakes. The same if someone stood behind me at work waiting for a letter, I would end up asking them to go sit down until I had finished because every time I made a mistake they would go to point it out. I knew I haby Buddybird - Huntington's Disease Support Center
You too Barb, sweet dreams (if it's night time). Love Debbie xxby Buddybird - Huntington's Disease Support Center
Oh Barb, That is a lovely post, I didn't see what your post said but what a lovely lady you are to publicly apologise for something you've had time to think about. I must say that my sister who reads the forums but doesn't join in has mentioned how nice you are - so you know you have admirers from places you didn't even know about. Hope all is well with you, are you still doing all thatby Buddybird - Huntington's Disease Support Center
Congratulations Michelle, Nay and Tony - I love what you have done and wish I could have passed this on to my kids to explain what was happening to them. I have sent the page to our Neurologist's Secretary who hopefully will pass it on to families who see the Neuro and don't know how to tell their children. You are fantastic people with big big hearts. I love you so much - but you already kby Buddybird - Huntington's Disease Support Center
Hi Blondie, It has just struck me that we had this trouble with Kieran and I had totally forgotten. We had a toilet chair but we'd put him to bed, attach all the tubes needed to feed him overnight with his medication and the formula and he'd ask to go to the toilet. Then he'd sit there for ages doing nothing after we took all the tubes out, then put him back and he'd want to go again. If weby Buddybird - Huntington's Disease Support Center
See Blondie thats what I don't understand. I had one child with a CAG of 150 who died at 7, and another with a CAG of around 113 who died at 11. Yet your daughter has a CAG of 200 and is 17 - this doesn't make sense as to the higher the count, the younger the child will develop it or live. Our Neuro said once it's over 100 it doesn't matter what it is (like you mention) - it's JHD and thats aby Buddybird - Huntington's Disease Support Center
Thanks for that Paula Hope you are doing well. Debbieby Buddybird - Huntington's Disease Support Center