Top right ... above the site name. I tried to make it consistent with the rest of the site.by SteveI - Huntington's Disease Support Center
Welcome to HDLF Estrella and thanks for sharing. One of our goals for this site is to bring people up to speed on HD as quickly as possible. So to achieve that we've posted many stories that several of our fellow HD family members have chosen to share with us. We have them grouped into HD Family Life with subgroups for Living HD Positive, Caregiving, and Living at Risk. You can go straigby SteveI - Huntington's Disease Support Center
You certainly have our sympathy and understanding. So much about dealing with this disease is unbelievably frustrating. Many times it feels like we are fortunate if we can get through some of the challenges and maintain our sanity. Stay strong and best wishes to you. Steveby SteveI - Huntington's Disease Support Center
In our case a general physician gave us a referral to a local neurologist who submitted a blood sample to a lab who performed the test. No consulting and no COE. I've heard about some neurologists who still insist that genetic counseling take place but apparently not all do. Steveby SteveI - Huntington's Disease Support Center
I am reaching out to people in the New England area once again to let you know about the research being done here in New Haven, at the Institute for Neurodegenerative Disorders (IND). For many years IND has participated in Huntington's Disease research mainly as a member of the Huntington Study Group. Our goal at IND is to develop methods of brain imaging to better understand changes in the bby SteveI - Huntington's Disease Support Center
Thanks for sharing this Nila. I looked at a bit of it and it looks very well done. I'll block off a couple of hours for it this weekend.by SteveI - Huntington's Disease Support Center
Hello everyone. Will added a new entry to his blog that will have many of us (particularly Marsha and I) thinking about starting our 2013 exercise resolution. Please take a few minutes to enjoy his article. Click on Thanks Will! Steveby SteveI - Huntington's Disease Support Center
This is a nice article by Dr. Goodman of HDDrugWorks.org. It discusses why your doctor knows little (if any) about Huntington's disease. I thought it was very enlightening. Steveby SteveI - Huntington's Disease Support Center
Welcome back Barb. No, it's not spam. Spammers don't usually carry on email exchanges with me. From my rough research it has been an ongoing project for awhile. It IS about building a home for themselves but with an interesting and apparently sincere sustainability twist. Of course I can't confirm the truthfulness of the story but I actually did see some indications in the video that HD may aby SteveI - Huntington's Disease Support Center
That was not an inconvenience. I believe that was helpful to all involved. Thanks, Steveby SteveI - Huntington's Disease Support Center
Although the documentary about Kim isn't yet officially available the Web site where it will eventually be available is: Steveby SteveI - Huntington's Disease Support Center
We hope everyone has a good year. And we always hope for a kick-ass treatment for Huntington disease. May you all continue to have the courage, persistence, and love to handle all that comes your way. From Marsha and I to all of our friends, ... a Happy New year.by SteveI - Huntington's Disease Support Center
That's right LizzieAnn. With our current state of mental health services it is just about impossible to help someone who refuses help even if they are a danger to themselves. From my experience they have to have hurt or directly threaten others before mental health services will intervene.by SteveI - Huntington's Disease Support Center
Go right ahead Katinka.by SteveI - Huntington's Disease Support Center
I don't believe that she is a member of this message board.by SteveI - Huntington's Disease Support Center
Swallowing issues could be contributing to persistent coughing. You might check to see if swallowing studies are offered in your area. If she's coachable then she might benefit from some advise based on the study.by SteveI - Huntington's Disease Support Center
Here is an excellent video about Kim Lile's journey with Huntington disease. I removed the YouTube link to Kim Lile's video. I hope everyone enjoyed the preview. Apparently it's the intent of BlackCat production to use the proceeds to pay for Kim's care when it is eventually needed. I hope that works out for them. Cheers. Steveby SteveI - Huntington's Disease Support Center
Welcome to HDLF Jon. I'm glad to see that I didn't accidentally unregister you during the user database cleanup I did today. We have a lot of information on this site written by HD family members about their experiences that you might find helpful. We are working on restructuring the site to make it easier to find information that you can useful in your situation so please let me knowby SteveI - Huntington's Disease Support Center
Thanks Kelly. I took a 3 day vacation so that I could complete the restyling of the site before the beginning of 2013. Feedback is always appreciated. p.s. There should be an image of a lighthouse in the top left corner of the page instead of an image of the old blue-green and orange text. If you don't see the lighthouse image then it might be necessary to hold down the shift key and cliby SteveI - Huntington's Disease Support Center
There aren't a lot of New Year traditions going on in our household but there is a pattern of repeated futile behavior. - I always resolve to spend more time on the Web site. - I always resolve to "get my act together". - I always resolve to stay in touch with family much better than the previous year. - I always resolve to start working on my next killer app or my bookby SteveI - Huntington's Disease Support Center
My guess is that they are checking for a tumor or other physical anomoly. Also, an MRI was used to assist with an HD diagnosis for my ex.by SteveI - Huntington's Disease Support Center
I hope you are enjoying the Christmas season too. Unfortunately a sinus infection is making it a little uncomfortable today but we had a very successful Christmas. The weather stayed clear enough for the kids to join us with our new grandchild. So we can't ask for much more than that. Cheersby SteveI - Huntington's Disease Support Center
Double dittos to what Kelly said. When we set up this new site site a couple of years ago we played around with the captcha feature but I decided we would try to make a go of it without it. Since then we've had over 26,000 spammers attempt to register. This week I've flushed them down the toilet and have enabled captcha. Thanks to EricR for refreshing my memory. Merry Christmas to allby SteveI - Huntington's Disease Support Center
Read only is good. I've gone for months without posting myself. On the flip side we've had several members who have over thousands of posts - and I'm not exaggerating. If you've never logged on then please do. You don't need to post. That just helps me to know that a real person is on the other side of that registration. Thanks so much. Steveby SteveI - Huntington's Disease Support Center
Hi everyone. I was going to clean up our membership database to get rid of those who have registered but used that registration to log on to a forum. From looking at these members I can see that the vast majority of them are spammers that have registered but not followed up with spam. (Scratching my head on that one.) But it it appears that there are a lot of people who have gone throughby SteveI - Huntington's Disease Support Center
When we release the new look and feel for the HDLF.org site we are going to be putting into place a simple CAPTCHA verification.by SteveI - Huntington's Disease Support Center
I removed the Czech survey. All surveys that are posted on this message board must be HD related and verifiable. Although this one was HD related I couldn't easily associate it with any particular academic organization. Most professional and academic organizations actually request permission first, stating their purpose and how the data is to be used.. Steveby SteveI - Huntington's Disease Support Center
A doctor with significant HD experience advised that regardless of what you think will happen you should expect and plan for about a year of depression after testing. So don't be surprised if appropriate medication is needed (even after testing positive because survivor's guilt can also be a heavy burden in many situations). Steveby SteveI - Huntington's Disease Support Center
What a horrible situation. Call HDSA's support line for help: 800-345-HDSA (4372) You'll be connected with their national social worker who might be able to connect you with an appropriate local resource. Steveby SteveI - Huntington's Disease Support Center