I'm sure watching your friends go though their loss has brought up all your own feelings from losing Michelle. It's such a difficult pain to bear no matter how old they are. No matter how they go before us, the loss of a child is just... no wonder its nameless. (Really glad you shared that Blondie). I hope your friends can & will find some small comfort to know that their son is now free fby miznjoe - Huntington's Disease Support Center
I'm really sorry for your situation. You've done a very good job of explaining to us. How about you write to your daughters grandparents & explain to them how you feel, as you have to us here. Include HD information that they can read & learn from. Explain to them that this is very, very important to you & your daughter. Especially your daughter. Ask them to take notice for her sake.by miznjoe - Huntington's Disease Support Center
Thanks all. I wanted to show that life can still be very much enjoyed & a happy, despite the difficulties of jHD. It seems that no matter how difficult & sad it is, our jHD kids still keep smiling. Anna, I have messaged you. xxxby miznjoe - Huntington's Disease Support Center
I am totally made up for you!!! Fantastic news!by miznjoe - Huntington's Disease Support Center
Hi all, its not often I post any more, but I pop in to see how everyone is doing from time to time. I hope that you all remember Rikki but if not, this is how you can get to know her. If you remember her, you'll remember what a fighter she was & how brave & wonderful. I have made a video of her at long last. Its only taken me 3 years. Today is her 3rd angelversary & I missby miznjoe - Huntington's Disease Support Center
Dear Eric, when I was going through the last months with Rikki, you were there for me, helping me to look for answers & helping me to understand. When I told you I had made a mistake by having Rikki peg fed, you assured me it was ok to ask for it to be stopped. You helped me to know that the way I felt, was OK. I wasn't stopping Rik's feed for me, but for her. To stop her suffering. I know thby miznjoe - Huntington's Disease Support Center
Oh Barb, I'm really sorry to hear your sad news about Dan, My thoughts are wth you. xxxby miznjoe - Huntington's Disease Support Center
Hi Paula. Rikki used to itch a lot on her tummy. So much so, it would look as if she had been attacked sometimes. (she was adamant her nails were long painted talons... never too short!) My point though is that she never was on any meds. So maybe its not that for R either? Sorry its not much help.by miznjoe - Huntington's Disease Support Center
to you. to you. dear Eric. to youuuuuuu. xxxby miznjoe - Huntington's Disease Support Center
I'd be your Sandy (olivia) Gordon. You up for a spot of night fever?by miznjoe - Huntington's Disease Support Center
Hi Blondie, I have only just had this conversation this morning with a friend. I was telling her that I made the decision not to film my daughter with jHD, as I didn't want to remember her with it & only as the child she was before it. We do have a couple of Rik of vids with Rik whilst symptomatic but as yet I haven't been able to watch them, though now & again, I feel I am almost ableby miznjoe - Huntington's Disease Support Center
Adding my condolences. So sorry Suzanne. xxby miznjoe - Huntington's Disease Support Center
My condolences Ron. I am so sad for your loss.by miznjoe - Huntington's Disease Support Center
Happy birthday JL. Hope you have a great day! xxxxby miznjoe - Huntington's Disease Support Center
Thank you Paula. xx Sending you a hug Michelle. Going over & over these decisions is mentally & emotionally exhausting. And made all the more harder for you with your poor mum saying what she is, bless her. I suppose all you can do is reasure her that when her time comes, you won't prolong her life artificially.by miznjoe - Huntington's Disease Support Center
Good idea Barb. I'll ask him. Hmmmm, & hope he leaves room in his suitcase so he can bring it home to me.by miznjoe - Huntington's Disease Support Center
Lack of water seems harsh but not according to this article.by miznjoe - Huntington's Disease Support Center
Barb, is there any way I can pay for a ticket on-line?by miznjoe - Huntington's Disease Support Center
So sorry for your loss JL but hope that special memories will make the pain of your loss more bearable.by miznjoe - Huntington's Disease Support Center
JL, I fully agree with you & I honestly can't imagine why any parent of an abused child would accept money from him instead of justice. I know I wouldn't! Something wasn't right with him mentally & thats sad.by miznjoe - Huntington's Disease Support Center
I was told Rik could also continue to eat & drink as well but that ability was very quickly lost. I would worry more about Laura's quality of life in the long run though & I hope that they will listen to you, her mother, who has to make the best decision she can for her child. Good luck hun.by miznjoe - Huntington's Disease Support Center
No worries Eric. Rik did have the peg fitted already by the time of my first post on here. You remembered everything else right though. If I was to have one wish, it would be that I had found this site & all the wonderful advice & help before we went ahead with it. I'm sure I'd have thought twice but as you say, hindsight is a wonderful thing.by miznjoe - Huntington's Disease Support Center
Hi Yvonne, I'm so sorry to hear where Laura & you are at. Its not easy. Rikki had said in her younger years that she never wanted to be pegged but when she took ill in her later years & could no longer eat or drink, we panicked for her & asked her if she would have it done now. She said yes, but if I'm totally honest, 'yes' was Rikki's main word & she was usually agreeable to mby miznjoe - Huntington's Disease Support Center
Sorry I missed this. Thinking of you Sharon & sharing your pain. Thank you Marsha.by miznjoe - Huntington's Disease Support Center
Really proud of you Matt. xxxxby miznjoe - Huntington's Disease Support Center
Hi g, Sadly my daughter died 17 months ago age 27. I'm from the UK so as I don't know your system I can't really advise you on that but here, we claimed for Rikki's benefits immediately...well, her social worker did...& she recieved top amounts within a short time, thanks to their help... even though she had few noticable symptoms. I'm inclined to agree with others though. Apply as soon as,by miznjoe - Huntington's Disease Support Center
Addiction is a good enough reason NOT to join JLby miznjoe - Huntington's Disease Support Center
Sorry to hear your daughter has been diagnosed with jHD. My daughter was 13 when she was diagnosed. Have been through the teenage years & they were worrying times. Trust your instincts is probably the best advice though you'll always find someone who will try to answer your questions here & on yahoo jhd caregivers.by miznjoe - Huntington's Disease Support Center
I hate having these type of weird thoughts. Lou, I have had thousands of them to do with the kids. I think its just a natural inbuilt fear thing that sets them off when I least expect them rather than when I should have been more aware. So glad I'm not the only one though & have been given the oppotunity to say this outloud....not that I want to repeat what some of them have been.Some areby miznjoe - Huntington's Disease Support Center
Susan, I have no doubt how wonderful airport workers....not that this thread was about them. I, along with many others, lived a lot of years with peoples perceptions of Rikki & HD which have been very hard to put up with/live with at times & it really p**ses me off to think that while I was trying to make my daughters living years happy, I am then told that there is a name for people liby miznjoe - Huntington's Disease Support Center