Awfully sad news. Gordon, Kirty and Micheal were great friends... love 'em all. Gordon did great work, with lots of respect for everyone. And with grace as well as humor. Just a big loss. Go Rangers!by Eric - Huntington's Disease Support Center
The fact is if anyone has to do this much explaining, it can't be good. The world is not out to get you and the fact that you brought media attention on yourself with your practices and claims is no ones fault but your own. You can back pedal all you want. Your product has no validity, regardless of your intentions good or bad. Your consultants have no validity, regardless of their intentionsby Eric - Huntington's Disease Support Center
Good luck Danielle, hope all the discussion is for nothing and you are tested negative. That would settle that...by Eric - Huntington's Disease Support Center
The thread hasn't been hijacked. It is about Danelle and if she wants to know how parents feel she is getting a taste. "It's right for me" is one way to go. Is it right for everyone? Is Matt's mom sleeping well at night thinking her window is closing before she is a caregiver again? Probably not. No matter what she says to Matt. I know I won't if one of my son's test and are positive. Iby Eric - Huntington's Disease Support Center
I am not sure what new direction you are speaking of Matt. Very few at 19 have a direction. And that is my point in a manor of speaking.. HD dictated to you through your test what life was to be. I personally think the test closes more doors than it opens as a rule. What would you have done not knowing? Most people don't know their exact fate .. especially as teenagers. They have really seldom chby Eric - Huntington's Disease Support Center
Sorry for all the questions. Testing is a personal choice, and I do feel two very good reasons to test is for a spouse/or future spouse so they have a fair shot of knowing what might be in store. Of course they seldom really get it but you can only offer for them. Also to make choices in having children. Of course testing for you tells you one thing personally, that you have the gene if positive.by Eric - Huntington's Disease Support Center
Did the counselor explain you don't have to test right now? Exactly for what reason did you chose to do so? I have noticed people in the UK test awfully young compared to the US, and am interested why that is. And for you personally of course.by Eric - Huntington's Disease Support Center
I am sorry about your HD also, but it's still no excuse to go on the attack. There are all kids of sad stories here.... and if we each used them as an excuse to to tell people to f-off.. all anyone would be saying was that. People relate to stories.. not being attacked. One can respectfully disagree. Even strongly... but not with names and disguised cussing. It may make you personally feel betterby Eric - Huntington's Disease Support Center
No it's not.. it's course of action... which you can choose to not put into action. It's something she personally has done.. had you cared enough to ask about it. That was her action in dealing with HD. And her husband is still there. She understands the deficits she has with HD. she is more progressed than you and walked 100 miles in your shoes already. You want empathy, try showing some.by Eric - Huntington's Disease Support Center
If that's how you want treat people then yes, find a place where they enjoy name calling, if you can. Or you can take an opinion of a person for what it's worth and use or ignore it. Name calling to a person who has spent her adult life trying to help others like dusty has on this forum and elsewhere will always be unacceptable. Threatening to leave is a manipulation and is not something we fallby Eric - Huntington's Disease Support Center
Hey bud, you can't be disrespectful here... you don't even know if you have HD and Dusty does... she's not a jerk. HD is not a free pass to be abusive. In the home or on this forum. Reign it in or find something else to ,o until you can. I suggest that further abusive posts be deleted until you participate correctly.by Eric - Huntington's Disease Support Center
Judgements have to made sometimes... people here are vulnerable to bad ideas, having not thought along certain lines before. People need to know the thoughts of others... not simply sympathy or empathy. We don't want this husband in jail for instance.. regardless of collecting insurance. That's a judgement. Just because a person has a plan doesn't make it a good plan. Or one another person shouldby Eric - Huntington's Disease Support Center
I have no idea where you live but here are a couple of thoughts. If you live in Washington or Oregon you have the right to assisted suicide... if you have six months to live and if you can consent. This pretty much precludes people with HD. They are unable to give consent at that time. However if they could... life insurance is unaffected. They can collect... even within the two year window of reby Eric - Huntington's Disease Support Center
A most interesting question.by Eric - Huntington's Disease Support Center
The problem is with this is it would take years and years of users smoking pot while non-symptomatic to prove anything. I have my doubts about it, but no one is going to fund a decade long trial I don't think. So we won't know.by Eric - Huntington's Disease Support Center
I would look at the stress first... but the only way ya know what's up is to eventually test. Most people do better knowing even bad news than they do dealing with uncertainty.by Eric - Huntington's Disease Support Center
Yes, be careful what you say and do with him. Part of HD is sometimes thought of as "walking on eggshells" and thinking several steps ahead of what you are about to say or do, because if you say something that might be taken wrong, even for a short time, HD can have the affect of a person acting out of impulse... with no check on the thought. You and i might have an impulse to hit, evenby Eric - Huntington's Disease Support Center
My guess is both genes are work and if the normal gene has a higher count it works "harder" doing what it is supposed to do against the the bad gene doing what it's not supposed to do. That is just my very very simple guess.... correlation doesn't always point to causation though. It could be a ten step process if that is the causation ... or as is often the case... run the same study oby Eric - Huntington's Disease Support Center
My wife recently passed away from HD. My sister in law in end stage right now in a NH with me as her only visitor. Teresa and I were her mother's guardian as well. The nursing home that i went to every single day for 5 years has 20 people with HD. I have watched HD from every angle daily for over 20 years. I understand it perfectly. You can fight the company if you want to... this gentleman needsby Eric - Huntington's Disease Support Center
I don't think he he got a "poor" review. He got a poor review. He knew he had the gene, as did others.. and HD was going to kick in sometime. The company is not going to watch out for each employee... and monitor their health.. in fact they are not allowed to do that. How well can he do his job if he now can't manage his own life? I think the review was accurate. They can't pay people tby Eric - Huntington's Disease Support Center
If you really want to know the answer to those questions, you try all of them and then live with whatever works best. I promise, no one will think you are doing it "right". They will always say, you should do this, or try that. On here we say you "might" try this or that. You won't be able to disguise a person has HD, and if they look a somewhat disheveled sometimes, or makeby Eric - Huntington's Disease Support Center
I don't think anyone throws it in your face. It's probably that you are touchy about what you chose. That happens a lot on this issue. People get defensive right away the second someone ask another to consider not to risk having HD at risk kids. It's hard to state one opinion about it, and not put another on defense. Especially if the deed is done. Just remember, this is advice to FUTURE people,by Eric - Huntington's Disease Support Center
The problem you have, as many of us have found about including myself is that you can't make up for what you didn't plan for. There are HIPPA laws, but companies can't act if they don't know. I don't know if they have a responsibility or not, in my state they wouldn't. They can fire you for a bad haircut if they want to. You will have to shop the phone book for disability attorneys. We discuss aby Eric - Huntington's Disease Support Center
I would get a hold of the patients bill of rights there in your state and learn what the rules really are. These homes will do things they aren't supposed to do, knowing you probably don't know what their responsibilities are.by Eric - Huntington's Disease Support Center
Sounds like she is having some obsessive thoughts. You might want to see if there might not be a medication that calms her mind a little bit.by Eric - Huntington's Disease Support Center
I personally don't understand not wishing HD on their worst enemy but it's ok taking a proactive chance of passing it along to your own child. Some exceptions to that is ignorance of the disease and it's affects. That happens, especially from the non-affected side of the family. but sometimes even from th affected side if they stay mum about it or various circumstances. But I can't pray for curesby Eric - Huntington's Disease Support Center
No one answered the question because there has been only one person here that pursued the treatment and at last known accounting the person was soon separated from their spouse and is now in NH placement. So that is all the answers to the original question you will get. Otherwise people here are savvy, and don't put much into the claims of this treatment. We have over the years had many people pby Eric - Huntington's Disease Support Center
Kathleen.. we don't make a habit of calling people killers here for medical choices. There are 50,000 churches where moral preaching of that sort is acceptable, but not here, You can say you are opposed to a choice based of religious convictions, and we all know what those would be. We support people's decisions here, either way, once they decide. There won't be a cure tomorrow.. we know that muby Eric - Huntington's Disease Support Center
I think the key statement is denial. Until he wants a diagnosis, and gets a diagnosis, and is willing to use it and also admitting his lost capabilities, I imagine there is not a lot to be done. Who would be his spokesman if you aren't there?by Eric - Huntington's Disease Support Center