Comments on: A Unique Struggle Against Juvenile Huntington’s Disease http://brainblogger.com/2008/10/27/a-unique-struggle-against-juvenile-huntingtons-disease/ Topics from multidimensional biopsychosocial perspectives Tue, 07 Feb 2012 18:44:48 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: nina whttp://brainblogger.com/2008/10/27/a-unique-struggle-against-juvenile-huntingtons-disease/#comment-606657 nina w Tue, 15 Nov 2011 01:29:28 +0000 http://brainblogger.com/?p=1613#comment-606657 MY SON STEPHON HAVE JHD IT WAS A HARD PILL FOR ME TO SWALLON I NEVER HEAR ABOUT THIS DIEASE UNTIL HIS FATHER GOT SICK SOMETIMNES I JUST WISH HIS MOTHER HAVE TOLD ABOUT THIS.HIS FATHER DIE AGE 29 NOW HIS ONLY SON STEPHON HAVE ITT NOW I SAW THE FIRST SIGN OF HORRIBLE DIEASE WHEN WAS 11 I WAS IN SPACE I DIDNT WANT TO BELEIVE MY WONEDFUL HANDSOME SON IS STRUGGLING WITH EVERYDAY LIVING SKILLS HES 17 NOW HE HAVE PROBLEM BREATHING NOW <strUGGLE EVERYDAY WITH HIS SPEECH, WALKING HIS JHD IS PROGRESSING FAST I JUST WANT IT NOT BE HARD FOR MY SON,I KNOW BECAUSE ITS HARD WATCHING YOUR CHILD SLOWING,DIEING AND FRONT OF YOU THIERS NOTHING U CAN DO ABOUT IT BET BELIEVE IM HERE ALL THE WAY WITH MY SON, HE HAVE DRA AND PLACE AND HES </strong> DONAR,HE NOT WORRYING ABOUT DIEING HE WORRY ABT THE PPL HE CAN HEIP WHEN HE GOES TO HEAVE, IM TRYING TO WRITE ABT HIS FATHER AND SON. MY SON STEPHON HAVE JHD IT WAS A HARD PILL FOR ME TO SWALLON I NEVER HEAR ABOUT THIS DIEASE UNTIL HIS FATHER GOT SICK SOMETIMNES I JUST WISH HIS MOTHER HAVE TOLD ABOUT THIS.HIS FATHER DIE AGE 29 NOW HIS ONLY SON STEPHON HAVE ITT NOW I SAW THE FIRST SIGN OF HORRIBLE DIEASE WHEN WAS 11 I WAS IN SPACE I DIDNT WANT TO BELEIVE MY WONEDFUL HANDSOME SON IS STRUGGLING WITH EVERYDAY LIVING SKILLS HES 17 NOW HE HAVE PROBLEM BREATHING NOW <strUGGLE EVERYDAY WITH HIS SPEECH, WALKING HIS JHD IS PROGRESSING FAST I JUST WANT IT NOT BE HARD FOR MY SON,I KNOW BECAUSE ITS HARD WATCHING YOUR CHILD SLOWING,DIEING AND FRONT OF YOU THIERS NOTHING U CAN DO ABOUT IT BET BELIEVE IM HERE ALL THE WAY WITH MY SON, HE HAVE DRA AND PLACE AND HES DONAR,HE NOT WORRYING ABOUT DIEING HE WORRY ABT THE PPL HE CAN HEIP WHEN HE GOES TO HEAVE, IM TRYING TO WRITE ABT HIS FATHER AND SON.

]]> By: debbiehttp://brainblogger.com/2008/10/27/a-unique-struggle-against-juvenile-huntingtons-disease/#comment-604549 debbie Sun, 26 Jun 2011 00:42:57 +0000 http://brainblogger.com/?p=1613#comment-604549 i hav been with my partner for 28yrs we met at 16 and went on to have 6 beautiful well mannered children when my partner stephen was diagnosed as havin hd he was only 32 life was hard as we also had a child our fourth who had cystic fibrosis and our youngest daughter was ill with chronic lung disease both had been ill from birth we both worked very hard and long hours to give them the best life possible stephen was earning less than me so it was decided he would stay home to care for the children at some point a few yaers later i noticed small changes in him i would come in frm work and the house was untidy the cuppas he used to make for me arriving home had stopped it was then i had to give my job up stephen became worse and i was now visiting hospitals every week with one of them when reece was 10 the doctors were no longer sure that reece had got c f 8 yrs of the wrong treatment had made him afraid of doctors i told them no more tests until they tested him for the most obvious illness sure as little apples he had juvenile huntingtons why didnt they listen to me years ago instead of fobbin me off saying its so rare he doesnt have that how wrong they were nd now my youngest is showing symtoms my oldest child is 25 he was always the nosey one couldnt keep a secret nd loved xmas u couldnt tell him any of his siblings presents or he would give them clues until they guessed so after breaking the news to the oldest 3 that there dad had hd my oldest said well if dad has passed it to us kids i want it to be me nd not my brothers nd sisters at 18 he had the test it was devastating news he had it aswell my life now is looking after my partner nd 6 kids 3 with jhd nd 3 at risk and terrified two of them are over 18 bt dont want a test i often cry in my room at night when i do sleep its for a couple of hours i would like to see more public awareness of this disease as not many people no what it is nd the people that do recoil in horror or pity for you i would also like to see more funding into a cure from this awfull illness lastly for all those carers and victoms out there be positive and happy with the time we have with our loved ones and maybe one day we can binn this disease i hav been with my partner for 28yrs we met at 16 and went on to have 6 beautiful well mannered children when my partner stephen was diagnosed as havin hd he was only 32 life was hard as we also had a child our fourth who had cystic fibrosis and our youngest daughter was ill with chronic lung disease both had been ill from birth we both worked very hard and long hours to give them the best life possible stephen was earning less than me so it was decided he would stay home to care for the children at some point a few yaers later i noticed small changes in him i would come in frm work and the house was untidy the cuppas he used to make for me arriving home had stopped it was then i had to give my job up stephen became worse and i was now visiting hospitals every week with one of them when reece was 10 the doctors were no longer sure that reece had got c f 8 yrs of the wrong treatment had made him afraid of doctors i told them no more tests until they tested him for the most obvious illness sure as little apples he had juvenile huntingtons why didnt they listen to me years ago instead of fobbin me off saying its so rare he doesnt have that how wrong they were nd now my youngest is showing symtoms my oldest child is 25 he was always the nosey one couldnt keep a secret nd loved xmas u couldnt tell him any of his siblings presents or he would give them clues until they guessed so after breaking the news to the oldest 3 that there dad had hd my oldest said well if dad has passed it to us kids i want it to be me nd not my brothers nd sisters at 18 he had the test it was devastating news he had it aswell my life now is looking after my partner nd 6 kids 3 with jhd nd 3 at risk and terrified two of them are over 18 bt dont want a test i often cry in my room at night when i do sleep its for a couple of hours i would like to see more public awareness of this disease as not many people no what it is nd the people that do recoil in horror or pity for you i would also like to see more funding into a cure from this awfull illness lastly for all those carers and victoms out there be positive and happy with the time we have with our loved ones and maybe one day we can binn this disease

]]> By: Professor Yasser Metwallyhttp://brainblogger.com/2008/10/27/a-unique-struggle-against-juvenile-huntingtons-disease/#comment-346235 Professor Yasser Metwally Sun, 09 Nov 2008 11:10:23 +0000 http://brainblogger.com/?p=1613#comment-346235 This post is indeed a very important one, describing juvenile huntington disease in such an easy way and a very useful and sinple way. This article is useful for both neurologists and and patients. I really agree with you about the differences between the juvenile and adult onset types of Huntington disease.Thank yoy very much for such an article Yasser Metwally http://yassermetwally.net This post is indeed a very important one, describing juvenile huntington disease in such an easy way and a very useful and sinple way. This article is useful for both neurologists and and patients. I really agree with you about the differences between the juvenile and adult onset types of Huntington disease.

Thank yoy very much for such an article
Yasser Metwally
http://yassermetwally.net

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