This is Marsha posting on Steve's computer. Of course it is not easy to have your spouse receive a positive diagnosis and then wait for symptoms to start. Nor is it easy to cope with end stage HD, to make sure the person's needs are met, and have to say good bye. But the hardest period is after symptoms start Twenty-five years ago, a sociologist named Rosabeth Moss Kanter wrote an articleby SteveI - Huntington's Disease Support Center
We know that Huntington's Disease causes brain deterioration starting years before signs of chorea or something else that can easily register with a doctor. We also know that the damage can manifest itself in multiple ways ranging from simply slow response to to psychotic behavior. But the doctor shouldn't discount other causes. People can become psychotic, depressed, schizophrenic, or soby SteveI - Huntington's Disease Support Center
HD Awareness Month is here, and it’s time to raise our voices to educate Congress about Huntington’s Disease and generate support for the Huntington’s Disease Parity Act (S. 648/H.R. 718)! Click here to watch a video about the Let’s Talk About HD campaign. Members of Congress need to continue to hear from HD families to support the Huntington’s Disease Parity Act. Each week this mby SteveI - Huntington's Disease Support Center
Michael Hayden is our researcher of the month. He'll be at the Centre for Molecular Medicine and Therapeutics. For details go to: Steveby SteveI - Huntington's Disease Support Center
Started the ball rolling today with a short blog entry and will take small bites out of it every day or so. Hopefully on weekends the bites will be bigger.by SteveI - Huntington's Disease Support Center
Jake does have that "I play REAL hockey" look about him. And he demonstrated the hockey attitude in his interview. No question was too tough. He just slapped it back. I enjoyed it.by SteveI - Huntington's Disease Support Center
Thanks Will. I'll use that as the template. We haven't even discussed whether this should be a non-profit venture or a for-profit venture. But I'm leaning toward the non-profit angle. Regarding the monstrous size of this effort, it seems that the only approach is to take it in small bites. I'll building the business model on the hdlf.org Web site in a bookish structure. Since I can only dby SteveI - Huntington's Disease Support Center
Eric's the funny guy. I'm just the straight man. Also. I'm talking about real physical building the provides badly needed services. Cyber services certainly should be possible. We're tired of reading the stories about HD families unable to get help. There has to be a way to make this happen ... when we decide what "this" is.by SteveI - Huntington's Disease Support Center
Let's add remote consulting to list of possible services to be provided and flesh it out. HDSA periodically explores this issue with medical service providers and finds that there continues to be either legal obstacles or just simply fear of being sued for misdiagnosis. However, I know there are some pilot programs that were started to see how beneficial this would be. Also, another questiby SteveI - Huntington's Disease Support Center
Cost of Care I was reading the Delaware Ombudsman Annual Report and they referenced the Genworth site for cost planning. I found the following page interesting and might be useful.by SteveI - Huntington's Disease Support Center
Sorry. I'm still sober. It will make much more sense after I've had a few drinks later this evening.by SteveI - Huntington's Disease Support Center
I'd like to publically explore a fantasy of mine. Hey! Get your mind out of the gutter. No. What I'd like to do is put together a business plan for an international network of HD Service Facilities whose primary focus is servicing the needs of HD+ clients. Of course, clients with Alzheimer's and other neurodegenerative diseases might also be able to part of the market base, but I'd likeby SteveI - Huntington's Disease Support Center
How does one milk a hemp?by SteveI - Huntington's Disease Support Center
The Huntington's Disease Society of America invites you to attend a new Caregiver's Corner webinar on WEDNESDAY April 27, 2011 at noon EDT. Our webinar will feature Drew Yeannakis, who will do a third webinar on applying for Social Security Disability with HD. In "SSDI Strategies III: Denials and Appeals," Drew will discuss what to do if your Disability claim is denied. Pleaseby SteveI - Huntington's Disease Support Center
How can anyone sleep with all of this chatter going on? Oh well. I guess it's time to wake up.by SteveI - Huntington's Disease Support Center
Those are good questions. Unfortunately the answers are less so. It seems to many of us that onset progresses in a series of plateaus. The brain is an amazing creation that has the ability to adapt to damage. In HD it demonstrates an ability to adapt to a range of progressive damage at which point there seems to be a sudden decline. Then there is another plateau that the brain seems to beby SteveI - Huntington's Disease Support Center
I think mmebrady is in a good position to make the call and she sounds like someone who is doing their best to do the right thing. It doesn't sound like she's judged the guy to be a pedophile ... just a HD patient whose filters have gone. (Or at 74 other things could be going.) She's kicked the guy out to protect her daughter. I believe I'd probably make the same call in her situation. I coby SteveI - Huntington's Disease Support Center
You're right. It was a fun site and the critique was ludicrous.by SteveI - Huntington's Disease Support Center
Did the poem stink? (sorry, couldn't resist the stinky feet pun).by SteveI - Huntington's Disease Support Center
I thought it poorly done. (The doctor's monologue should have been edited out, but wasn't). But I thought the demonstration of the chorea was interesting. So I went to the premixed url which is below There are other related educational videos demonstrating other types of gaits. Thanks for finding this Eric. Steveby SteveI - Huntington's Disease Support Center
Hey guys and gals. I just had a report that someone had to log back in everytime they closed their browser. Neither Marsha and I are having that problem. I believe that if the cookies persist between browser sessions then everyone should stay logged in. Is anyone else experiencing this?by SteveI - Huntington's Disease Support Center
Check it out at .. http://www.hdlf.org/node/830by SteveI - Huntington's Disease Support Center
In my annual effort to avoid doing my taxes I spent Saturday trying to clean up some of the topic pages. One of the topic pages that I "finished" Saturday is the Testing for HD page. http://www.hdlf.org/testing4hd/ The page provides a summary of what we know about Testing for HD. On the left hand side it lists links to related research and related stories. Hopefully you'll fiby SteveI - Huntington's Disease Support Center
Okay ladies. I surrender. The apostrophes are back. Maybe I'll try again when everyone is distracted by the discovery a new treatment.by SteveI - Huntington's Disease Support Center
Thanks. I'm just excited that all of the HDAC articles and all of the HDlighthouse articles are now being served up from the same system. There are a lot of old HDlighthouse articles that are old school HTML pages that I need to figure out how to migrate to the database. There's always one more project in the queue.by SteveI - Huntington's Disease Support Center
Disappointing, but not a surprise. This result was anticipated back in January. Steveby SteveI - Huntington's Disease Support Center
I agree with Dusty. That's why I'm trying to kill off Huntington's a couple of characters at a time. However, since Marsha wants them back I know I'm on the losing end of this argument. The apostrophe and s will soon return.by SteveI - Huntington's Disease Support Center
Hello all. My objective for this weekend was to migrate all of the HDAC articles (over 600) over from HDAC.org to HDLF.org. The data transfer took longer than I expected (as always) but is reasonably complete. I have a few things I'd still like to do to. There are a few anomolies from the migration that need cleanup. We also have several static pages from the hdlighthouse.org Web site thby SteveI - Huntington's Disease Support Center
The HDAC Web site was relocated this morning to a new ISP. A couple of the features like the photo gallery and the HD recipe section were not carried over, primarily because I would have had to rewrite a large chunk of the pages and I don't think there is enough interest in those sections to justify the effort. For a photo gallery I'm leaning instead toward having a "gallery like" pby SteveI - Huntington's Disease Support Center
Okay. The smileys are back.by SteveI - Huntington's Disease Support Center