tardive dykinesia, which i cant be bothered to spell correctly is specifically associated with long term side effects of "Old style" antiphsychotic medications. i think the word "tardive" is derived from the word "late" either in latin or french in similar - because the effects come later after years of using this medication and are irriversable. lots of people inby trying 2 cope - Huntington's Disease Support Center
just read this post... im so pleased for you and your family. What a massive massive relief. What an awfully worrying time this has been; well done for staying strong for your daugther and finding out all you can in order to try and prepare for the worst case scenario. I hope that now this nastiest of illnesses has been ruled out, whatever lies ahead you can in some ways go forward and know tby trying 2 cope - Huntington's Disease Support Center
the horrific subject of "drip feeding" the three kids, all under 11 information about hd has started to stalk its way into our household. With the death of MJ, my little 8 year old nearly-diagnosed-just-waiting-final-confirmation-of-having aspergers, has, quite predictably, become fascinated by the story of MJ, death, dying, disease and what ultimately causes a body to die. (in a verby trying 2 cope - Huntington's Disease Support Center
hi, i had a read. loved it, made me laugh but sad at the same time. that juggling with the kids and hubs is so hard isnt it? the bitter irony thats there and my life is just like that - only made worse by the mother in law who condones the chair sitting, as "having a rest!"... hd denial in families is a whole new issue.... i started a diary too, but didnt dare put it online. the hd peoby trying 2 cope - Huntington's Disease Support Center
Do you say perv - "o", we, in England use the word: "perv -y" "pervee" as in per===veeeeerrrr---tttteeeeddd. Just HAD to make that interesting observation barb: pervo is pervy in england. at least it is according to me! anyone who disagrees can (_x_), cause im a (_E=mc2_) !!! (hehehehe).by trying 2 cope - Huntington's Disease Support Center
i have been thinking about the people taking part in the drug trials. its ironic: im doing a post reg course on nursing research ethics and of course the old "Hd chestnut" came up (it always does and i always sit there, listening, blanked face: determind not to say anything, then i cant help but correct people when they are wrong: like the senior lecturer, who was a dr......). they askby trying 2 cope - Huntington's Disease Support Center
i will have a read..... love reading......by trying 2 cope - Huntington's Disease Support Center
hey alice im sorry that the mj death, media and public response has raised issues for you; and im sorry it got you to thinking that maybe you were feeling that way because of hd. i dont think so. i think when he died it was inevitable that there was going to be a public split. There is no getting away from that. The people who morn MJ, (he had a sell out tour here in england for next monthby trying 2 cope - Huntington's Disease Support Center
hi brian. my husband is 37. he tested positive in january. im 34. welcome to the forum. im sorry to hear your positive. there is a lot of support here.by trying 2 cope - Huntington's Disease Support Center
im having one of those weeks eric! hubs came back from drs today, being told to contact hd services himself to ask what meds they recommend now... am going round in lovely little circles .... cause he wont contact them .... and when i do......; blah blah.... so i rang my dad and he came over. just had a big hug and cry with my dad and now worried i will give him a heart attack at the age of 57.by trying 2 cope - Huntington's Disease Support Center
in fact: here is the funny thing barb: my mum is on quitiapine for bipolar: you remind me of my mum. she speaks like you. says what she thinks. i pick up her meds for her sometimes. i got some of her meds.... i found they really help with the sleep when you are up all night worrying about your hd husband....purely by accident. my husband decided i had the same illness as my mum and he didnt haby trying 2 cope - Huntington's Disease Support Center
do you know what, bizarrely, it isnt me thats delaying him being on meds: ages ago when i came here at the end of my tether i read what people were on and asked the hd services about meds for hubs, other than antidepressants. they rambled on about ethics of oversedating him and i didnt do myself any favours, cause im very plain spoken, laughed at them and told them that at least if he was quietlby trying 2 cope - Huntington's Disease Support Center
marsha, if this drug is "coming to europe" is it coming as a trial or being marketed? only im at the end of my tether with the old man (who incidently isnt old). do i wait for this one or push for my hubs to get put onto something more immediately; i know they will suject one of the atypical presently, so i have kind of been holding out for one of the wonderdrugs, but does it mean youby trying 2 cope - Huntington's Disease Support Center
marsha, if this drug is "coming to europe" is it coming as a trial or being marketed? only im at the end of my tether with the old man (who incidently isnt old). do i wait for this one or push for my hubs to get put onto something more immediately; i know they will suject one of the atypical presently, so i have kind of been holding out for one of the wonderdrugs, but does it mean youby trying 2 cope - Huntington's Disease Support Center
sorry, cant read through all these, stopped at barbs. (always love barbs posts) now daughter pulling at me to read story, but gotta say, in england and im pretty sure, everywhere, olanzepine isnt actually serequel. they are two different drugs that do similar things olanzepine is also called zyprexia (in england) and quitiapine is also called serequel. had to chuck that in there causby trying 2 cope - Huntington's Disease Support Center
i dont know how it is in america, but in england, there is such specialist services for "minority groups"; howevver, this is NOTHING TO DO WITH ILLNESS Its all to do with ethnicity or meeting the needs of ethnic minority groups. there is specific funding, jobs and services for these "disadvantaged" groups. perhaps the hd community need to be recognised as at least equby trying 2 cope - Huntington's Disease Support Center
bless you aud. many social workers dont even know what hd is or how it might apply to their criteria. i am a mental health nurse and i nearly had a full blown argument with a colleague friend of mine who refused to section someone with hd, as she believed it was a physical illness and the thought that she was depressed was "normal within the context of having such an illness".by trying 2 cope - Huntington's Disease Support Center
hi casey: first of all, let me pass on my condolences re your mother. Im so sorry that in such a relatively short space of time you have had so much to process; believe me, i know how hard it is to take on board that positive test result, but combined with the loss of your mother and the perceived implications of an increased cag, you must have been scared right out of your mind. You have beeby trying 2 cope - Huntington's Disease Support Center
patricia: know that people around the world are so happy for you and your son and his family at this time. its wonderful news and i hope you feel that new thrill every time it sinks in over and again. Fantastic news congratualtions!!by trying 2 cope - Huntington's Disease Support Center
i know dystonia refers to muscle tone ect. I think you may be right in thinking his movements are a form of dystonia: i would probably ask the dr about it - that way, if there is any help he can have in terms of physio or even basic advice as to anything may make him more comfortable. Dystonic reactions can sometimes occur as a result of certain psychotropic medications (ie side effects) but,by trying 2 cope - Huntington's Disease Support Center
cheers all. Protecting the kids is not her agenda; Their children are adopted (not due to HD, for other reasons). But yea, my kids are important; i blocked my son from computer usage at the moment (he only has "friends" that are family - i thought they would be safe!!). Im not in a position to address any wide scale family denial on my husbands side of the family: they have made it qby trying 2 cope - Huntington's Disease Support Center
i didnt think they could tell. sorry for venilating so much: i was feedling extra sensitive about the scan issue cause of my son having had one too. I think its sad really: they have joyessly celebrated (very publically) with sentiments like "surely god is in his heaven and all is well in the world!" on fb and i hope they are right. Thanks for the replys, its all very confusing.xby trying 2 cope - Huntington's Disease Support Center
hello, i wonder if someone can help with this? My husband is recently diagnosed with early signs HD, (soft signs) that are more psychiatric than motor, apart from restless legs. I asked about him having a brain scan to clarrify things and was told that this wouldnt be useful or necessary as, in early stages, nothing would show and if it did: it couldnt necessarily be attributed to HD. He is laby trying 2 cope - Huntington's Disease Support Center
good luck yvonne! her care team should be ensuring your daughter has capacity to make an informed choice, not just presenting her with a solution to the problem around chocking. If she does not have the capacity to make an informed decision (ie if she is unable to understand the choices and implications/consequences, is unable to retain the information and weigh up the pros and cons and clearlyby trying 2 cope - Huntington's Disease Support Center
hiya yvonneg, im sure you will make the right choice with the information you have/had at the time. I think the forum is good here, cause sometimes the medical profession can show you the instant solution, but the longer term implications are not always "in the best interest". But i think that people have given a good overview of both the positives and the potential negatives of a pby trying 2 cope - Huntington's Disease Support Center
oh barb, your so lovely: look at you googling aspergers! dont go worrying about that. i love my boy the way he is and compared to the grand scheme of things, thats a walk in the park. i wouldnt change that bit about him. i kind of darent open a new thread and i just ranted earlier cause i was so upset about the week i had with my son and to come here and see someone had been playing games, i felby trying 2 cope - Huntington's Disease Support Center
yeah, sorry barb: im gonna actually remove this lot cause im not sure about the rules re threads and the subject is Message from admin moving on! aspergers is just a form of high functioning autism: like the character in the film "rain man". My son is intelligent, with the social skills of someone of a much lower age has some odd behaviours and interests. he is very interesting. Itsby trying 2 cope - Huntington's Disease Support Center
im so glad your all here i feel so sick. thanks eric. my little boy: they wanna look into if he has jhd. im gonna be sick. its complex: and very "this week". i took him to the paed. and she was an asian lady. i think she made a mistake. she did these walking tests on my son and then when we mentioned hubs hd, her face dropped. that bit was ok, i wasnt botherd by that, i just thoughby trying 2 cope - Huntington's Disease Support Center
from agnostic-wanna-be-christian-spiritual-humanist to HUMANIST FULL STOP with wierd belief in strengh of human spirit. xby trying 2 cope - Huntington's Disease Support Center
barb, im so glad your here. help me you person over 50: despite being incredibly good looking my heart is breaking!!!! i think i have gone mad. i will ammend the f. x x x x ps i replaced it, but if i missed anything im sorry and i dont mean to start anything off again steve, after i just read your concerted efforts to stop any horridness. i just wanted to clarrify who was real. but i got carby trying 2 cope - Huntington's Disease Support Center