http://www.jhdfamilies.co.uk/jhdforum This is an XML content feed of; JHD Forum : Last 10 Posts Sun, 20 May 2012 09:11:40 +0000 Thu, 17 May 2012 18:12:19 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 8.04 30 www.jhdfamilies.co.uk/jhdforum/RSS_topic_feed.asp http://www.jhdfamilies.co.uk/jhdforum/forum_images/web_wiz_forums.gif http://www.jhdfamilies.co.uk/jhdforum http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=177&PID=611#611 Author: Paula B
Subject: JHD Kids video
Posted: 17 May 2012 at 6:12pm

http://jhdkids.com/2012/05/16/janes-jhd-kids-video/

A lovely video made by Jane Mukka of all our JHD kids past and present.]]> Thu, 17 May 2012 18:12:19 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=177&PID=611#611 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=176&PID=610#610 Author: Paula B
Subject: Please sponsor my daughter
Posted: 22 Apr 2012 at 4:16pm

My youngest daughter Sophie is doing a skydive in August to support our local children's and young person's hospice.This is where my daughter Rachel who has JHD goes for respite care.They have had 2 other previous cases of JHD since they opened back in the early 1990's,one being Danielle who used to attend the JHD weekends.Please sponsor as much or as little as you can.Every penny counts

http://www.justgiving.com/Sophie-Whitham?]]> Sun, 22 Apr 2012 16:16:49 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=176&PID=610#610 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=80&PID=609#609 Author: Paula B
Subject: Book on JHD
Posted: 22 Apr 2012 at 3:18pm

Thought I would bump this thread for any newbies browsing.A useful guide to hand out to any health/school professional who may come in contact with your child/young adult with JHD.

Here is a link to the Amazon site:

http://www.amazon.co.uk/Juvenile-Huntingtons-Disease-trinucleotide-disorders/dp/0199236127

Edited by Paula B - 22 Apr 2012 at 3:32pm]]> Sun, 22 Apr 2012 15:18:04 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=80&PID=609#609 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=175&PID=608#608 Author: Paula B
Subject: Is anybody home
Posted: 22 Apr 2012 at 2:11pm

Don't worry Coral,I do still pop on here and I will keep posting anything I think will be of interest : )

]]> Sun, 22 Apr 2012 14:11:41 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=175&PID=608#608 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=65&PID=607#607 Author: Paula B
Subject: ANTICIPATORY GRIEF
Posted: 22 Apr 2012 at 2:09pm

Thanks for bumping this back up the thread,hope it helps others to.]]> Sun, 22 Apr 2012 14:09:04 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=65&PID=607#607 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=175&PID=606#606 Author: coraljoy
Subject: Is anybody home
Posted: 22 Apr 2012 at 1:18am

Hi all , just seems to be so quite on here at the present moment. the last few weeks...... I understand everyone has important appointments etc.... Just thinking of you all, an hope that you are all coping alright. Its not an easy situation to be in, and I know I have to pull myself up and gather as much strength an courage from thin air as I can, to get through what is probably the roughest ride for my life, and my families.

Each day seems a little more difficult, but I have to be here for my children. Life takes on a new meaning when you have the worryies we have. Everyone out there knows what i mean. Take it easy, and dont be to hard on yourself. Enjoy your Now, take out of it what makes you smile. thinking of you and lots of love. xo]]> Sun, 22 Apr 2012 01:18:28 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=175&PID=606#606 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=65&PID=605#605 Author: coraljoy
Subject: ANTICIPATORY GRIEF
Posted: 10 Apr 2012 at 2:12am

Hi all, I was just reading over the old posts an I came across this one. This one hits the nail on the head ,,,,,,,, Yes it does help to cry and let your emotion's go. Sometimes it is to overwhelming to share it with your family and freinds , Because they dont like seeing you like this and think that its weak or suky, and that it is just trying to get attention.  ,,,,..........  yes, an so does writting down your thoughts for the day or week. I have lots of writings about my thoughts, if someone got hold of them , they would think that I am crazy. The first part of this post about , it change's the very stucture of our existence, this is very true. I have said that to my sister time and time again. I try so so hard to just live for today, and try to make it the best ever day i can. its difficult some times though. This reminds me of the bad aid..........when i was a kid, getting the band aid off. the quick rip or the slow tug an anticipation of the pain.....this relates to the latter............. What ever we feel an think its all ok to express . I know you all know what i feel , which is like the most important thing, to know someone else's feels how i feel, and thinks how i think. Just that gives me so much strenght. Other people will never no what we feel , because they just dont know. thats ok too, as like its been said before , this is not just a simple condition, this is an extraordinary one. One that only a few people will ever truly understand.  So thankyou for sharing it.  kindest regards to all xoxoxoxo    ]]> Tue, 10 Apr 2012 02:12:28 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=65&PID=605#605 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=170&PID=600#600 Author: Paula B
Subject: A mom's tribute to her son
Posted: 23 Feb 2012 at 8:24pm

Weird works from mine?However I've re- done the link so try again : )]]> Thu, 23 Feb 2012 20:24:26 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=170&PID=600#600 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=170&PID=599#599 Author: coraljoy
Subject: A mom's tribute to her son
Posted: 22 Feb 2012 at 9:38pm

Hi Paula , I cant seem to get into the youtube mums tribute to her son. I not sure what i doing wrong. kind regards coral

]]> Wed, 22 Feb 2012 21:38:13 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=170&PID=599#599 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=170&PID=598#598 Author: Paula B
Subject: A mom's tribute to her son
Posted: 21 Feb 2012 at 3:17pm

Here is my youtube friend Nonya paying a tribute to her son in her words and pictures.

http://www.youtube.com/watch?v=rEynId_TwDs

Edited by Paula B - 23 Feb 2012 at 8:23pm]]> Tue, 21 Feb 2012 15:17:18 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=170&PID=598#598