Marsha, Barb, an d myself are on the Huntington's Disease Support Group.by howard - Huntington's Disease Support Center
I realize that this site was much busier before the advent of Facebook. I just never took to the facebook sites. I used to be on this site all the time back in the day. Today I lost my daughter and best friend Allison to JHD. It was about a 19 year battle. She was home with me until the end. If any of the oldtimers are still around, please remember her. Stephentown, NY Allison S. Kiby howard - Huntington's Disease Support Center
Pulling a feeding tube out does not kill you .In fact, it does not even hurt. My daughter has accidentally done it many times. I now keep a spare and have learned how to reinsert it. I get so tired of people who disparage someone who wants to have a tube. The feeding tube actually makes the dying process much more tolerable. Nothing wrong with that.by howard - Huntington's Disease Support Center
My daughter is 33 and late stage JHD. She got a feeding tube three years ago. Everybody had an opinion but ultimately the choice was hers. She has maintained her weight and enjoyed better physical health with the tube. It was not an easy decision. The factors leading to her decision and the pros and cons are outlined in chapter 12 of the book describing her HD journey. Here is the link:by howard - Huntington's Disease Support Center
Any old timers still around here probably remember us. My daughter Allison was diagnosed with JHD many years ago. It has been quite a journey which has not ended yet. In her honor I have written a book about this journey. I hope that our experiences can lend aid to other people going through a similar experience. Please feel free to share with anyone who might benefit. Here is the link to the booby howard - Huntington's Disease Support Center
Haldol is usually avoided. My daughter has juvenile HD. Bipolar was her first diagnosis back in her teens. Officially diagnosed with juvenile HD at 19. She is now 33, living at home with me, and in late stages. Still aware and enjoying her life.by howard - Huntington's Disease Support Center
She's in the hospital with an infection. It's kind of uncertain right now. Thanks for caring.by howard - Huntington's Disease Support Center
Don't worry Joe, I am not going to let hospice anywhere near Allison. We had a brief introduction to them last year and it wasn't pleasant. This latest foolishness has reminded me of that and convinced me that hospice is not something that will benefit us. Quite frankly, the people at the local hospice are creepy. Howardby howard - Huntington's Disease Support Center
I have posted many times about my daughter Allison who is 33 and in the final stages of JHD. I am a longtime member of HD Lighthouse. Today Allison went to the hospital by rescue because she was choking. After eight hours I was told that she could either go home with me or go to Laurel Lake Nursing Home, a nearby home that takes HD patients. Many years ago Allison used to live at Laurel Lake, wby howard - Huntington's Disease Support Center
My daughter's blood pressure is also very low. Usually around 90/60. She is 32 and had JHD for about 15 years.by howard - Huntington's Disease Support Center
HDSA cut their funding to COE's significantly this year. I received a fundraising appeal from our COE in March explaining these cuts. I have also heard that the COE at Emory University in Atlanta has closed due to a lack of funding. This was the first COE established in the U.S.by howard - Huntington's Disease Support Center
I take care of my 32 year old daughter who is late stage JHD by myself. I have learned that there is very little support to be had. I have reached out to so many. With the exception of Dr. Rosas at MGH most "health care professionals" know little or nothing. I recently had one who told me that she thought my daughter's problem was early onset menopause. When I told her she was wrong shby howard - Huntington's Disease Support Center
My wife was diagnosed at age 26-27. She was adopted so there was no family history to go by and no reason to suspect HD. CAG counts did not exist back then. The HD gene and CAG count was discovered in 1993 by researchers at Mass General right about the time that my wife died. There was therefore no way to know her CAG count. Adoption medical records were sealed back then and unavailable to us. Doby howard - Huntington's Disease Support Center
It doesn't hurt! My daughter who is about 16 years into Juvenile Huntington's Disease at age 32 has a physical therapist who comes to our house twice a week. She can still get around with my assistance. I attribute it to keeping her physically active. Repetitive activity helps keep people with HD functioning. She also plays her computer games for four hours a day. I know that this keeps her meby howard - Huntington's Disease Support Center
I don't think that they care what perception we have of them. Over the years I have contacted HDSA and our local chapter many times with concerns and not once have they been back in touch with me. I was once a faithful financial supporter, not anymore! I don't know if they read this site, but I doubt it. (maybe they have a troll assigned to it) This is what happens when organizations are run byby howard - Huntington's Disease Support Center
I don't think that they care what perception we have of them. Over the years I have contacted HDSA and our local chapter many times with concerns and not once have they been back in touch with me. I was once a faithful financial supporter, not anymore! I don't know if they read this site, but I doubt it. (maybe they have a troll assigned to it) This is what happens when organizations are run byby howard - Huntington's Disease Support Center
Today I received an appeal from Dr. Rosas and Dr. Hersch from the Mass. General Center of Excellence. The letter stated that HDSA has slashed their funding and that in order to survive they were asking for donations. Since most major HD discoveries have come from MGH, I find this lack of support from HDSA appalling. Has anyone else heard similar stories from their Centers of Excellence? Thisby howard - Huntington's Disease Support Center
A CAG count in the 30's wouldn't be called negative. It would probably be presented as "in the grey area" or inconclusive.by howard - Huntington's Disease Support Center
My daughter is 32 with a CAG of 60. She has JHD and has been symptomatic for about 16 years. I care for her 24/7 and she can't do the things she used to do. She does still enjoy her life and is playing her video games right now as she does every night. She also enjoys watching DVD's, going for rides and generally enjoys life. She says she's here for another 8 years at least. The key to a successfby howard - Huntington's Disease Support Center
Will, I'm very sorry about the loss of your brother. Having endured two generations of HD with my wife and daughter, I fully understand what you've gone through. I also share your feelings about Dr. Rosas. She has been so kind to us. She goes so far beyond what most doctors do. I'll never forget when she called me from Texas where she was attending her father's funeral when Allison was having a pby howard - Huntington's Disease Support Center
Way back about 12 years ago, my daughter hit a curb and blew out a tire. She thought the best thing to do was to drive home on the rim. Of course she got pulled over. The policeman thought she was DUI. She told him she had HD. As luck would have it, his wife was a nurse who had actually worked with HD patients and he was familiar with it. Instead of escalating the situation, he called me and I gby howard - Huntington's Disease Support Center
Clonazepam (klonepin), valproic acid (depakote), fluoxetine (prozac), and mirtazepine seems to be a combination that has worked well for quite a while for my daughter. She has had JHD for about 16 years and is still doing pretty well. Her mental state is better than it was 10 years ago!by howard - Huntington's Disease Support Center
I will no longer waste my time with you. I suggest everyone else follow suit. You are sad.by howard - Huntington's Disease Support Center
It is about time you grew up and faced reality. My daughter DOES have HD, has a 60 CAG and WAS symptomatic in her teens. Right now you DO NOT have a confirmed case of HD. Unlike you my daughter took the mature approach upon diagnosis. Unlike you (who again has not even been diagnosed with HD) Allison did not quit her job, bypass school, and generally act like a total ass. Instead she worked two jby howard - Huntington's Disease Support Center
My daughter was diagnosed with a CAG of 60 at age 20 and used it as an incentive to go on to graduate magna cum laude from college. She simply wanted to accomplish it despite having juvenile HD. All these years later, she is refusing to give in and is still as sharp as ever.by howard - Huntington's Disease Support Center
Actually no counseling is required for HD testing. It is optional. Any doctor can order the test without requiring any counseling. My daughter never went through counseling and I know very many people on this board who didn't either. On her first visit to the neurologist the test was ordered and the next week someone came to our house and drew the blood, We had the results in a few weeks.by howard - Huntington's Disease Support Center
Still a two year wait for medicare. You can go on line (maybe, if you're lucky, if the stars are aligned,etc. etc. etc.) and choose a health plan which may be subsidized based on your income. Good luck!by howard - Huntington's Disease Support Center
Sorry Barb, Your family is an example that HD does not have to destroy life. What a shining example of how to take the adversity of HD and run with it to make it the best it can be. I know you can follow his example and make sure your mom and sisters will be OK. Stay strong, Howardby howard - Huntington's Disease Support Center
Everyone with an interest in HD is welcome to post here. I was glad to see you, Pioneer 7 as a new participant. Your posts however are quite vague and don't really fit the topic. Your connection to Huntington's Disease is not clear. I now notice that your posts are being used as a link to a company called Med2Shop. We are here to support each other, not as an advertising vessel for an internet buby howard - Huntington's Disease Support Center