No I am not part of the study that is going on right now. I had said "when my turn comes" but we will not be waiting long for this at all the third study is pending immediately after the second one that just ended. Happy New year Tylerfits.by Kelly B - Huntington's Disease Support Center
No I am not on anything for my movements. And most people dont notice my movements or think they are purposeful. I drop stuff all the time too as my brain signal breaks and forgets its holding something...Lexapro worked well for me. Take good care Chrisby Kelly B - Huntington's Disease Support Center
Thank you Barb and Willy. Seems like it was such a long journey with Shannon no one understands her HD around here. Only people who have experienced HD can really get it. I have had a thousand pound weight sitting on me for the past three years and now it is suddenly gone. It is going to take some time to heal from this but I know I will. I always appreciate what you write Barb. I have been readiby Kelly B - Huntington's Disease Support Center
I am guessing she is suffering from delusions...that happened with my HD sister who just passed away a few months ago. Her mind made things up all the time. I wrote a piece here called False Memories that may help you understand this more. For some reason your wife is distrusting you for reasons either real or imagined... And she is remembering the threat she felt in the trust issues she now hasby Kelly B - Huntington's Disease Support Center
Time machine sounds fun...wonder how different things are in 2036? The new upgrade sounds like it will be a huge benefit to the site and anything that gets rid of those nasty spammers is a huge plus as well...I am looking forward to playing in the new sandbox steve. Thanks for all you and Marsha Lynn do for this site. No need to complete with the computer Marsha Lynn he married you in the flesby Kelly B - Huntington's Disease Support Center
I have written a new piece called "Staying Sane". I know it has been a long time since my last written piece...It is a very heavy article but as always a very honest one...take good care...Kelly Bby Kelly B - Huntington's Disease Support Center
I was so saddened to hear of Gordon passing away, he shared alot and helped a lot of people in the time he was dedicated to the HD cause. He looked after his son for many years. My condolences to his daughter and grand daughter too. The fact he is now with Michael is the only plus here...He was an incredible person and I spent many hours talking with him. I am wishing him all the best up in Heaveby Kelly B - Huntington's Disease Support Center
So nice to hear from you Peter...It has been way too many years. Am sorry to hear Norma passed away almost 7 years ago. It will be 7 years for my Mom too in January. I am still doing extremely well especially given the fact I was diagnosed 15 years ago. My oldest sister is now in care though and I have lost lots of relatives and friends to this illness. I have been writing on the hdac/hdlf for alby Kelly B - Huntington's Disease Support Center
Thank you Mike I am glad you enjoyed my last written piece. Marsha did say alot of sweet things, but I am not suprised as she is a very sweet person. Have a great day... Kelly Bby Kelly B - Huntington's Disease Support Center
Hi Marnagay, When I went to my first HD camp retreat in Squamish BC the nurse at the camp told all of us that we had to watch our alcohol intake. She said that one alcoholic drink in the body equaled three drinks in effect on the body. So if I injested two alcoholic drinks my body would feel the effect of 6. She said this is true for not just for HD but people with neurological conditions. Theby Kelly B - Huntington's Disease Support Center
Thanks for changing the colour on the Kelly B Blog site. The old colours were really hard on the eyes. The new blue colour is much softer and does not require sunglasses. lol I had to reset my favorites button to the hdlf and resave it to be able to even find my blog. Thanks again. Kelly Bby Kelly B - Huntington's Disease Support Center
New years is a time of reflection and to set new goals for another year. I want to learn a few more songs on my quitar, to sing more, write more here as well as get my book started. To spend more time with my family. To be cured of HD. My big wishes for the new year are: No more lives torn apart. That wars would never start. And time would heal all hearts. And everyone would have a frienby Kelly B - Huntington's Disease Support Center
Steve--That was actually my watered down version. lol Merry Christmas to you too and thanks for all you and Marsha Lynn do.by Kelly B - Huntington's Disease Support Center
I think I am really me and not just a cheap spammers imitation but perhaps I better check again.lolby Kelly B - Huntington's Disease Support Center
I think any one who misuses this site for private gain is a complete and total scum bag. Not only would not a single person here buy anything from you for that reason alone but you have also made a site full of ememies here. This is a site for people who need support...how dare you try to make a profit off that. You are a rude and heartless person. Go away...by Kelly B - Huntington's Disease Support Center
Thanks Paula you are most welcome. I am proud to belong to this group. I like the fact the added they lighthouse family part into the title of the new site. Is cool. Hope you have a great christmas. Ho ho ho, Kelly Bby Kelly B - Huntington's Disease Support Center
You are most welcome Carla. I know I have not written very much lately but I am hopeing to write alot more in the new year. This disease really does suck doesn't it. I have lost so much to HD...we all have. Thanks to Eve and mrspatwolf for their comments too. I am always glad to know that what I have written has touched someone. The delusions are terrifying. I hope everyone has a excellent Chrby Kelly B - Huntington's Disease Support Center
I have experienced simular muscle weakness. At my appt last year I asked why my head dropped alot and why my knees and other parts would suddenly relax. According to my HD clinic DR its the chorea going both ways. It can make your muscles suddenly jump but it can also make your muscles suddenly relax without warning. Both are involuntary and both are chorea. I was very suprised to learn that. Iby Kelly B - Huntington's Disease Support Center
So my sister Colleen and I both found out we were at risk at the same time back in 1996. WE had identical emotional and cognitive symptoms and both had the entire list of them. She tested negative and I tested positive three weeks after her. So I knew what my problem had been all those years but she still had no answer for her symptoms. I had wondered about enviroment playing a part as she was raby Kelly B - Huntington's Disease Support Center
Marsha, I have been having a problem with motion for awhile now. I use to love swinging on swings but I have not been able to do that for years now. The motion makes me sick to my stomach in less then a minute. So I can not be on anything that sways. I run into trouble when I am keeping beat to the music with my feet and hands/arms after a minute or two I need to make my body stop moving. It isby Kelly B - Huntington's Disease Support Center
I know I am extremely sensitive to noise especially loud noises. Most places I go are much too loud. Be it TV or music blaring in the background. It has caused problems in different friendships because I just can not take prolonged noise especially at a louder volume. I know this is also true with Autistic people as loud noises can really overwhelm them. Is this an HD symptom or is it just me?by Kelly B - Huntington's Disease Support Center
Barb- Glad to hear you have found someone new as well. I just got back I have been away for about 5 weeks and got to spend sometime with him. He is also into music which is great. I have learned to never say never out of all this. I know my having HD was one of many reasons I did not want another relationship. I worried about it being wrong morally to let someone fall in love with me knowing I coby Kelly B - Huntington's Disease Support Center
Marsha, You and I were both certain and said to each other back 13 years ago that it would be the gene silencing that would eventually cure this illness. And it looks like that is finally coming to pass. I like everyone else who comes here have waited alot of years to be able to kick this HD dragon to the curb...This is great news. I would like to say I won our bet but we both bet for gene sby Kelly B - Huntington's Disease Support Center
In order how things happened for me was as follows. I found out I was at-risk in 1996 and tested gene positive in 1997. I knew from the list of emotional and cognitve symtoms when I first read them that I was symtomatic before I tested gene positive. The test only confirmed what I was fairly certain of. But because HD clinic and Drs do not like to officially diagnose you until you have chorea andby Kelly B - Huntington's Disease Support Center
Thanks Paula, It really brings home the fact that HD is a family disease because the entire family is effected when you are carring for someone with HD. I am not living with my HD sister but Colleen and her husband have been living with her for 8 months now. Relocating her was the only answer. But she has no friends here only her family. We are all hurting to watch her struggle to do things thby Kelly B - Huntington's Disease Support Center
Barb--Thanks for the Merry Christmas wishes. Before my sister Colleen could pass them on I read them myself. Our oldest sister is progressing at lightening speed and there is no way in sight to stop her decline. Eight months ago she was being a wife, was still working fulltime and raising a 7 year old. After she left her marriage and as she let go of each responsibility she let go of huge parby Kelly B - Huntington's Disease Support Center
Merry Christmas one and all. I wish each and everyone one of you a healthy, wealthy and happy new year. Ho Ho Ho Kelly Bby Kelly B - Huntington's Disease Support Center
Thehays I am glad you enjoyed the book as much as I did. Book with characters with HD in them are few and far between.. Take good care Kelly Bby Kelly B - Huntington's Disease Support Center
Stephstrong Actually it mentioned several cognitve symtpoms. At the very begining of the book she gets lost by taking the wrong arm of a river she had canoed on for many years. Then she got lost and disoriented when she is hired to do a project and the people who hired her found her lost and confused and take her back to the main camp and she is freaked out because she panicked. Some people wby Kelly B - Huntington's Disease Support Center
I am glad you enjoyed it hopingforacure. I found I could relate to alot of the thoughts and feelings expressed as well. It made me laugh and it made me cry...it was awesome...by Kelly B - Huntington's Disease Support Center