I cant remember my mum and dad ever sitting me and my brothers down and having a big talk about us all being "at risk" I think it was just a "known" in our house as there were a few family members with HD in my mums family that you pick up pretty young that this is passed on...its weird i cant ever remember an exact time of knowing i was "at risk" I do know when i feby Michelle - Huntington's Disease Support Center
Oh Eric...Im so sorry to hear this very sad news...your love for T has shone through in all that you have done, and all you have contributed here on the forum over the years. Ts stories and memories will live on. Thinking of you all and sending lots of love xxby Michelle - Huntington's Disease Support Center
You continue to amaze and inspire Barb...big hugs xxby Michelle - Huntington's Disease Support Center
Sending my love to you Marsha and Steve...take good care of each other xxby Michelle - Huntington's Disease Support Center
Eric just wondering how everything is going?? Thinking of you guys xby Michelle - Huntington's Disease Support Center
Barb you are very inspiring...big hugs for you ((((hugs)))) and love your lemonade quote that Gordon has remembered...will keep that one in mind! Love you xxxxxby Michelle - Huntington's Disease Support Center
Eric you guys have done an incredible job caring for T (even though i know it was far from perfect)... as sad as this stage may be I also hope it brings some relief and peace to you all. T will live on in the hearts of many...Take the time to cherish these moments with her and your boys. Lots of love to you all Michelle xxxby Michelle - Huntington's Disease Support Center
Oh Barb...biggest hugs to you...I am so sorry to hear this sad news. You have given so much love and care to people over the years, I hope the love from your friends and family brings you comfort during this time. You are an incredible women...and it sounds like from erics post you continue to be incredible in the face of this loss. Im sending you all my love...Michelle xxxxxby Michelle - Huntington's Disease Support Center
Hey Liz, Sounds like your sisters experience is very normal...sometimes when I was young it felt like there wasn't alot to really like when my mum was changing with HD. All my 3 brothers relate differently to my mum, some visit some dont visit so often...everyones copes differently. Your sister really needs to be able to express how she feels about your mum openly. She is only very young. Iby Michelle - Huntington's Disease Support Center
Liz, Looking back Liz on my life, one of my biggest 'regrets' (only word i can think of) is not doing what i wanted to do because I had the responsibility to care for mum. I didnt leave my mum to go to uni with my friends because i felt guilty that she needed me, and that my dad needed me to help look after her...and well, I'm still here 15 years later. I know its not easy, but you are young, yby Michelle - Huntington's Disease Support Center
Carell...thankyou for your post...makes me smile, even though I know its not really a smiling situation...but I have to smile when you describe it all so well ...Reminds me so much of mum... Gosh I remember when she had a toilet fixation...i think I spent half my life in the toilet! Thanks for your honest sharing...Michelleby Michelle - Huntington's Disease Support Center
Well mum hasnt hit anyone for a few days. They are using extra valium and an extra nurse and it seems to be working . So my daughter and i made a really big deal of it and we ate 2 litres of ice cream together I spoke to the manager and she was really supportive of a meeting, so she will organize one. Sometimes, sadly, it feels like depending on the day, who is on, what mood they are in, wiby Michelle - Huntington's Disease Support Center
Judy This may not be very reassuring... but from my experience sometimes it feels like HD sets everyone up around it to fail, because there is no "right" way. I look at my life over the last few years, the nurses don't get it right, my dad and my brothers don't get it right, I dont get it right, it feels like no one can possibly get it "right". All we can do is try and doby Michelle - Huntington's Disease Support Center
My mum had pain for a while...she is in the later stages though so it may have been caused from her laying and having very little ability to move...they gave her different pain meds like nurofen and regular panadol. They did try a Norspan patch for a while but it was terrible for her, she was really wiped out. Did they do blood tests to rule out other causes? Take care Michelleby Michelle - Huntington's Disease Support Center
Thanks everyone. Ill take these thoughts and ideas in with me to the meeting. Yeah I know what you mean fred about it being serious, they have booted her once because she was hurting staff and patients...and i really don't want it getting to that point again. Fortunately now for them she cant walk, so i guess that's why they put her in bed cause she cant get up..but i don't like it. I like thby Michelle - Huntington's Disease Support Center
Hi Donna, Just a little something that might help your girls, or may help you to talk to them...this is an Australian website but most info is relevant to any young people Having grown up with a parent with HD I think the more info/support your given the more your able to live a positive life with HD. Take care Michelleby Michelle - Huntington's Disease Support Center
Wow that's incredible! Take really good care of yourselves..its an exhausting and emotionally complex process...so take the time you need to just sit with your news. I tested negative a few years ago and while there's the pure relief, there's a whole range of other feelings as well. So take the time you need to process it all! Awesome newsby Michelle - Huntington's Disease Support Center
Hey eric she did hit them yesterday during the bowl bath (maybe i didnt write that clearly) would that change why we think she is doing it?? Unfortunately she hits really hard. For someone who can hardly move, when she throws a wack it is in full force! I'll suggest we have a meeting. Yeah barb she does get really depressed. I asked her yesterday if she wanted a shower in the night and sheby Michelle - Huntington's Disease Support Center
Hey guys thanks so much for your thoughts. Yeah it has kinda come out of the blue...she used to be fine in the shower...probably over the last month or so this has started. I thought the same eric that it might be something simple...but im not sure... To be honest I always feel really awkward about suggesting i go in to watch staff do stuff, as the staff are really sensitive to any feedback..eby Michelle - Huntington's Disease Support Center
All the best guys...it truly is one of the longest and hardest day of your life. But there is life on the other side. Thinking of you Michelleby Michelle - Huntington's Disease Support Center
Hey guys! Just curious...my mum is in the late stages of HD. At the moment she has started hitting the nurses when she has a shower. She has given a few nurses big fat lips and its starting to become an issue for the staff. Ive given the NH a handout that Jimmy created on showering a HD patient (Im sure they dont follow all those directions, but they have it!) They give her extra valium at shoby Michelle - Huntington's Disease Support Center
Oh wow that's awesome!!! Well done zach...great work!!by Michelle - Huntington's Disease Support Center
Hey elle, When i read your first post i thought you were very brave asking the questions you did ...i think that in itself says sometime about you, your not just sticking your head in the sand, your asking the tough questions...but that doesn't mean some of the reality stories are easy to hear! You've obviously been through a hell of a lot already in life...my advice would be to pace yourselfby Michelle - Huntington's Disease Support Center
Matt you deserve to boast far and wide!! You guys did a brilliant job!! The pictures and news report of facebook is very inspiringby Michelle - Huntington's Disease Support Center
yeh sorta funny lol.. although when i went to bed after posting that i thought...gee i hope noone thinks im promoting alcohol as a way of coping! Cause it can be really dangerous! So glad you saw the joke..lol ...i really dont drink that much, but more its nice to go out and have some fun now and again! You deserve a life for you too. Yes! If you can afford it pay someone to do some of the crby Michelle - Huntington's Disease Support Center
Hey Liz, I can totally relate to your feelings "i hate seeing my mum slowly dying" It breaks my heart to watch my mum be so sick for so long. Its absolutely life shattering at times. But somehow we have to draw on what we have to pull through...some days are easier than others though i know. I wonder if you need some time out for you... to take care of you. I only visit myby Michelle - Huntington's Disease Support Center
Hey blondie...my mum, who is in the late stages of HD, has had itching spurts...we have never been able to pin pointed the cause. She will scratch her arms and legs til they are bleeding. So we pretty much do what your doing to minimize the impact. She has had a few months now where she hasn't been scratching so im hoping its gone! I hope your able to find the cause, and treat it, to allow yby Michelle - Huntington's Disease Support Center
yeah..i was thinking the same...she has to have the teeth removed due to pain...the plate/teeth are provided by medicare (free) So financially its not an issue...im just worried about how she will go managing them...but its no big deal if she cant...she can just throw them at the staff.by Michelle - Huntington's Disease Support Center
Hmmm implants would be a better idea...but they have measured her mouth for a plate.by Michelle - Huntington's Disease Support Center
Has anyone ever given a late stage person with HD false teeth? Mums having her 2 front teeth pulled out, as she has grinded them away, and they are replacing them with two false teeth. Mainly i guess for her dignity, as she doesnt eat solid food anymore...but I have no idea if she is going to be able to manage having false teeth in her mouth??.... i guess if she cant they can just sit in herby Michelle - Huntington's Disease Support Center