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Hi all,

Well, I am full of anger right now because the doctors refuse to test my unborn baby for Huntington's. The father has been tested and has the gene, yet they still have an ethical debate about testing. (Which I am sure you all know already :) ) I would like to learn more about the disease and how people cope with the symptoms, glad you all are here.

update

Hello,
it has been a while, my Mom's health has taken a turn for the worse with this disease. The trip to France is not going to happen her body has just given out even if her spirit has not. There are days that she knows who I am but not my name. She spent a week in the hospital in November and it really seemed to take it out of her physically. She had made some decisions regarding herself but she is not sharing them with me and she seems at peace so I can only guess that the end is near and I am at peace for her if that is her decision. I have finally reached a place with myself that I am ready for testing and have scheduled the blood draw for next Wed and 4 weeks after that I should have the results. I am ready for either result but of course hoping for the negative.
Its been a long time since I last posted here but thought I would post this here instead of my usual Journal.

I just came back from my family home after visiting my Mum for (uk's) mothers day.
the best thing about this trip was not catching up with Mum but being able to get the first look of my Dads head stone.

He died of Huntingtons (well associated difficulties but im sure most of you know what I mean) in 2001 but its taken almost 7 years to finally get the whole family agreeing on it all and me and my brother getting it all sorted.

headstone

Its nice to have finally have it there and although it makes no real difference it being there or not it has been a real psychological barrier for me and now it feels like he truly is at rest.

Unfortunately in the 7 years it has taken to do this My uncle has been diagnosed as having huntingtons, although if I am honest with my self I knew a long time ago that he had it.

He is being the typical stubborn yet happy guy he has always been and is refusing to accept hand outs and charity just yet. After being let go from his last job due to his symptoms interfering with his work he has been doing any job that he can get, even if it the ignorant temp agencys take him for a drunk when he walks through the doors.
Recently he has been accepted onto a Government scheme that helps disabled people find work, and although i know this must be tough for him and a shock to his pride I admire the fact that he is not just giving up as I have seen some people do. I truly do not know if I would have his courage if i was in his position.

I want to thank all of this community (no matter how silent and inactive it sometimes is) for providing a place that people can talk about Huntingtons and the associated troubles.
My thoughts go out to you all
Chris

some of the most inspiring lyrics can come from the most unexpected placesCollapse )

Feb. 28th, 2008

 hi my name is allyssa...huntingtons ...has been in my family since i was 10..atleast thats when i started to educate my self about it.  ymy moms side has it...my mom hasnt been tested yet for it..but 2 of my aunties have commited suicide because they had huntingtons..they both lived with it for about 5 years i would say each.... my other aunty was tested negative...but my mom hasnt gotten tested for it yet.  i recently got a tattoo for huntington's...i will post a picture of it when i get on it my computer.  i am in the process of doing a walkathon for huntingtons..in a small town of2800 people 3 families have it...so i am anxious to start the planning..im just waiting for hte stuff from HDSA. just thought i would do an introdcutory post!

.Allyssa

 

Hi

Hi. My name is James and I just found this community. I just turned 20. I found out about 5 to 10 years ago that I have the genetics for Huntington's Disease, and that my Grand Father died from it. I got a cat scan this summer, but I got dropped from my families health care before I got the results back. I spend months feeling normal, but every once in a while I get really depressed and... well you people know what its like. I used to cut myself all the time. Last year I promised myself that I would never cut myself again, but recently...

I've never met anyone who has 
Huntington's Disease, so I am glad I found this community. 

Hello

Hi all it's been awhile since I checked the board because it did not look as if there was any activity. I am glad and relieved that there is. It makes me feel not so alone in all of this with my Mom.

I have not done the testing as of yet...I have put it off a bit, because before the HD positive with my Mom, I was involved in a work related shooting which ended up paralyzing my partner and leaving me with PTSD and clinical depression which intensified after the trial since I was the main witness to the case. I am better it has taken three years but I do still suffer from the depression and the PTSD to this day. So my therapist and I are taking things slowly. I have actually admitted to myself that a little more knowledge and help is a good thing that I am not super woman (believe me that was hard to admit for me) I am going to attend my first HD support meeting tomorrow in Denver Co. I am a little intimidated and frightened. It feels like the final step in admitting to myself that this all really is real and that Mom is not going to get better only worse.

She's doing well all things considered. She's starting to loose a lot of weight due to the chorea and all the constant movement, it's starting to concern me. I am trying to get her in with her Huntington's Dr. to discuss it and if there is anything that I should be doing specifically for that issue. She is having more difficulty drinking liquids, she chokes on her coffee in the morning and any other liquids too. We are trying to do all the things that she want do do now while she still sort of can before it is too late. We are going to Yellow Stone next month and I want to get her to France. She has always wanted to see the louvre and she wants to walk it with her cane.

Apr. 19th, 2007

Katie Moser will be appearing on “The View” tomorrow, to discuss being a person at risk, and her experience with genetic testing. To find out the time and station in your community, please go to http://abc.go.com/daytime/theview/ then click on “When to watch” (it’s under the pictures of the show’s hosts).
After reading a recent post on this community about clinical trials in America I have been researching into current clinical trials in the UK.

There have been many advancements recently (such as finding a potential "trigger" chemical causing the onset of HD) and if it were possible in any way for me to join any of the trials I have found then I would. Unfortunatly due to either locations or the need for particular participents I am unable to so I thought I would see if any of you could help or know any one that might be able to help.

There are a few trials going on in London that require control subjects. That means that if you know anyone in London that has no family history of HD they might be able to help.
so if you or any one else can help then please have a look at the following:
http://hdresearch.ucl.ac.uk/infosheets/pdf/biomarkers-control.pdf
cant find the study sheet for this one but http://hdresearch.ucl.ac.uk/structuralplasticity.html
and if by any chance any one knows some one that has a history of HD and lives in London http://hdresearch.ucl.ac.uk/nowrecruiting.html

If someone who reads this does end up going/getting some one else to go i will forever be in your debts :)

THANKS

Article in the NY Times about HD

Here is a link for an article and related videos about Huntington's called "Facing Life with a Lethal Gene" that appeared in the Sunday edition of the New York Times:

http://www.nytimes.com/2007/03/18/health/18huntington.html

Hi All

As I have posted before, my Mum has recently been tested for HD, thankfully she doesn't have it.

Thank you to everyone in this community, you have certainly made me feel less isolated over the testing period which has been one of the most challenging things that I have ever faced.

HD will still be a part of my life - at least one of my Uncle's has it and other family members are at risk, but for now I am counting my blessings. I will continue to get strength from this community in the future.

With love,
Katie