Speaking of new Web sites, I owe Rick Fatica an apology. He asked me awhile back to share his personal photo gallery with the HD community. It is excellent work and I recommend it if you're into well done video art. "My name is Rick Fatica, an artist. I am interested in sharing my work dealing with HD... Here is a sample of my most recent work: If anyone has a personal HD relatedby stevei - Huntington's Disease Support Center
Best wishes for success Dylan, Let us know when you have it completed and we'll help spread the word about it. Steve Irelandby stevei - Huntington's Disease Support Center
You can visit to experience what an existing Wiki looks like. Although the original creator of Wiki's defined it as a simple database, the software that we are using is a super collaboration tool. Contributors have a plethora of tools available to them to communicate with each other via the "talk" and "discussion" pages. Collaboration means that we work together, thatby stevei - Huntington's Disease Support Center
This press release was also posted (with a brief summary) on the HDLighthouse at... You might find Dr. Goodman's synopsis a little easier to digest than the raw press release. We also have a photo of Dr. Hersch. If you see him on the street be sure to give him a hug (or a handshake). Also, Dr. Hersch is getting close to publishing a followup study that is possibly even more exciting. Wby stevei - Huntington's Disease Support Center
I'm not a doctor so I can't tell you what you should do. I think most doctors would ethically tell you that the side effects in 10 year old children is unknown. We know that creatine is promising but to what degree is still unknown. And it most certainly hasn't been tested on those affected by JHD. The most recent studies on the effectiveness of large dose creatine is just about to come out.by stevei - Huntington's Disease Support Center
I don?t believe that we need to have a perfect understanding of the pathology of a disease in order to start working on a cure for it. Can you imagine what it would be like to wait until researchers understood the pathology behind cancer before they started providing chemical treatments to fight the cancer? Sometimes it?s good enough just to have a general idea that pushing a lot of electriciby stevei - Huntington's Disease Support Center
My daughter doesn't like blueberries, so we take the blueberries in capsule form. Two capsules = one cup. And homeopathic remedies generally have the same positive effects as any placebo. Sometimes the mind is a powerful thing though. :-) But the positive effect has nothing to do with the treatment, just the hope. Steve Irelandby stevei - Huntington's Disease Support Center
My experience with sharing awareness of HD with others is quite different than Fred's. It's been more of a "tell me more" experience. Should we be concerned about the awareness of the culturally challenged? Probably not. Our focus should be more toward encouraging the awareness of those who have a moral and/or religious mandate to help those who need help and are motivated to do soby stevei - Huntington's Disease Support Center
It's a pain in the neck, a pain in the ass, and a pain generally everywhere. However, pain is usually caused by something else other than HD or some muscle strain caused by HD directing the body to do something unnatural. Steveby stevei - Huntington's Disease Support Center
And if a caregiver is dealing with denial, I'd recommend the book "I am not sick - I don't need help" by Xavier Amador. Steveby stevei - Huntington's Disease Support Center
It is a very hard decision when a caregiver must involve the police. I did it once, and I was very fortunate that our city, because it had a major hospital center, had an MHRU (Mental Health Response Unit) of the police force. I didn't know how important an MHRU is in the proper handling of the mentally disabled. It's important that we do what we can to inform the police in advance of potentby stevei - Huntington's Disease Support Center
I think we need a little more information from you in order to know how to answer the question. Can you provide some more details or some background?by stevei - Huntington's Disease Support Center
There was some earlier discussion regarding Namenda on this earlier thread. Steve Irelandby stevei - Huntington's Disease Support Center
The FAQ on this site provides information about the stages of Huntingon's as well as references to other sites - in particular Shoulsons "standard" stages of HD. Steve Irelandby stevei - Huntington's Disease Support Center
You might consider contacting Cheryl Lenheiser via email at txhd.socialworker@verizon.net "Contact Cheryl Lenheiser at the Texas Affiliate Helpline (972) 724-1367 or (800) 910-6111 for more information." She's the local HD Social Services workby stevei - Huntington's Disease Support Center
You're trapped...we have you forever.... bwaahh haaa hha haaaaa! Seriously though there IS a way to discontinue "the follow": Step 1) Up on the top of this page, click on Forum List. Click it. Step 2) On the top of the Forum List is the link called My Control Center. Click it. Step 3) About 2/3 of the way down is a link called Show Followed Threads. Click it. Step 4) Setby stevei - Huntington's Disease Support Center
Hi Sally, Sorry it took so long for me to respond. Personally I feel the mission of this board is to provide assistance to HD families, and that includes all categories of family members. To split the message board would most likely diminish it's value. We've been told that the stories on HDAC are hard to read. Well, I'm a caregiver and I find some of the stories hard to read too. But reaby stevei - Huntington's Disease Support Center
That sounds like a great idea to me too Fred. It just took me awhile to find the setting since the software documentation gives it three different names and it uses the least meaningful name on the admin page. Steveby stevei - Huntington's Disease Support Center
I'm not sure why I didn't get those emails. The address is good. The most obvious answer is that I DID get the emails, but when I was going through the 150 SPAM I filter through each day looking for the jewels that my spam filters flag as spam then I must have missed them. That's scary <g>, I guess I need to go slower. Send another one to that address so that I can confirm that I'm gettinby stevei - Huntington's Disease Support Center
Hello JL - Steve here. Thanks for the feedback. I've tried try to address each of your concerns below. Emails: I'm sorry, but your emails haven't reached me. Can you post the email address that you're using to send emails to me? If you're not using email but instead using some feature on the HDLighthouse that I'm not aware of - then that would be a problem. Let me know and I'll remove iby stevei - Huntington's Disease Support Center
Hi Stacy, I'm working on a position statement regarding care for those who refuse to accept their diagnosis. It seems to be a good idea to lay out the problem as I see it and then propose some initiatives. Then people have an opportunity to argue for or against the individual items. At least that's my opinion. <g> I should have it ready to go in the next couple of weeks. Steveby stevei - Huntington's Disease Support Center
Hi Gary, A lot of things go wrong as a result of HD. My wife was diagnosed when she reported that she was feeling tired and weak. After several doctors said that nothing was wrong with her we went to a neurologist who confirmed that she had HD. We knew her father had died from HD but that and the weakness was all that we knew for sure. She didn't have any noticeable chorea. Steveby stevei - Huntington's Disease Support Center
Hi Pauline, Happy New Year to you. First, we advise that one live life as if HD wasn't a concern, but prepare financially as if it were. If I had followed that guideline I'd be a happier and wealthier person now, and I'm not at risk for HD. I'm also very hopeful that a treatment will be available for you, should you test positive for HD, that will help you live a typical life. So if thaby stevei - Huntington's Disease Support Center
Depression is effectively a given following diagnosis and should not be ignored. SSRI's used to treat depression have also been shown as promising treatments to slow progression. Although you are right that there are no "proven" treatments there ARE things that can be done. Go to the . On the right of the home page, toward the top, is a discussion of the HD Triad and a discussionby stevei - Huntington's Disease Support Center
It seems that perception of temperature is affected by HD in many people. There are MANY reports of families having problems over the thermostat. I've heard of HD patients complaining of being hot when everyone else is cold and vice versa. It's not a "symptom" of HD as much as it is a result of the brain damage caused by HD. Not everyone experiences it. That's why a doctor wouldby stevei - Huntington's Disease Support Center
Hi Mark, The nice comment was donation enough. We get a thrill out of hearing that someone finds the site useful. We've never accepted donations. Web sites are time consuming but not all that expensive so our costs aren't significant. Save your money and join us at the next HDSA National Conference. Thanks for the offer though! Take care, Steve Irelandby stevei - Huntington's Disease Support Center
I think I've fixed the cosmetic problems or at least I moved them around so that I couldn't find the problem anymore. Steveby stevei - Huntington's Disease Support Center
Like Eric pointed out, there tracking of messages read appears to be available only to those who have registered. As for being able to see only 2 of 6 messages, were you unable to scroll down to see the other messages. Sometimes the first two messages takes up the who page and there isn't anything other than the scroll bar to indicate that there are other responses further down the page. Tby stevei - Huntington's Disease Support Center
The problem with the email addresses appears to have been fixed. Sorry for the difficulties. Steve Irelandby stevei - Huntington's Disease Support Center
I don't believe an email address is visible unless you set your profile to make your email visible. If someone finds this not to be true please let me know. Thanks, Steveby stevei - Huntington's Disease Support Center