I am American and have travelled to Norway with the United States Marine Corps. I have fond memories of the beautiful country you live in. Most of the Norwegians I met were calm, cool and collected. You have become totally obsessed with being at risk and it has become your whole life. I have the gene, but am not obsessed with it. The only time I think about it is when I'm writing here.

I think you're afraid to test for fear that it will be negative and your whole fantasy life will collapse.

Will

So Nice you have been to Norway It is a beatiful country. I would recommend visiting the fjords on the west coast of Norway. If you want to experience the mid night sun I would recommend visiting Lofoten in the north. It is just absolutely beautiful Norwegians are shy. It is polite not to interrupt, so dont get offended if they dont talk that much

My purpose for writing this is to show young people who has got the "at risk for HD News" that it is OK to not go to work. It is OK to not follow your parents advice. It is SMART to take a step back and look at the bigger picture. It is a LIE that HD is UNTREATABLE. And I want everybody to know

In the beginning I was ashamed of HD. And I think some young people are. You know it is a really though beginning on life. After taking a step back and look at the bigger picture I realized there is no reason what so ever to be ashamed of HD. I have every reason in the world to be proud

It is the character that defines the person, not unlucky bad cards.

Will: It is not very Nice acusing me for living in a fantasy world. You are an old man with a lot of experience. You should know better.

Will is not accusing you of anything, so don't give him crap. What he said sounded very wise, and he is worth listening to.
You say you came here to tell other young people to quit their jobs?????????????? You are REALLY F'd up, and really starting to piss me off.
You are DELUSIONAL, whether from hd or not, you need to be on meds for this. I would wonder if you aren't bipolar or schizophrenic, and that you need some serious help. You are at the point that being at risk is driving you nuts, and that's the point that a person needs to test

Oh and guess what, I agree with Will:

"I think you're afraid to test for fear that it will be negative and your whole fantasy life will collapse".

Will does not have an unkind ounce in his body, he's telling you the truth



Edited 2 time(s). Last edit at 07/07/2014 04:57PM by Barb.

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 jobs, graduated summa cum laude from a university, and treated people with dignity and respect.Unlike you, she did not disparage her parents, insult elderly folks, nor live a bizarre lifestyle. I can guarantee she knows more about HD than you'll "read" in your lifetime. She exercises sensibly, takes supplements with care, and participates in every clinical trial she can get admitted to. Sixteen years after being diagnosed with JHD she is still living an enjoyable and meaningful life.(This is unheard of) Quite frankly she is amazing. She, not you, is the shining example of how to act when faced with Huntington's. You are very young and exceptionally immature. Youth and immaturity is the foundation of your bizarre behavior. Still you have no right to come on this site and disrespect the hard working lady responsible for administering it. Nor do you have the right to disparage Will, a decorated veteran who unlike you really does have HD and has done an incredible job of keeping it at bay with reasonable actions. I am a 32 year veteran of the HD battle. I have lost my wife to it at age 33 and my 32 year old daughter is battling it admirably. Through it I have managed to keep my thoughts and emotions in good order and have given back a lot to the HD Community. DON'T YOU DARE start insulting me as you have done to other folks here. I am not a doctor. I am a retired lawyer. You do need help and not "HD" help at this time.. As Barb said you need some very serious help. Your insecurities are so very obvious. I'm sorry your childhood was not ideal. Few people's are. If you ever want to gain respect on this site and in the HD community, stop insulting folks here, toss your delusions of grandeur, and change your approach!



Edited 2 time(s). Last edit at 07/07/2014 07:48PM by howard.

Im honest my friends. I think it is wise.

No, my lady. I am not delusinal. That is a very serious accusation Barb. And especially to people younger than yourself. I think nobody at risk of HD should be accused of being delusional. It makes them worry more about having HD. Remember this a forum to help people with HD. I have an unbreakable heart and commitment to everything I do. And I want to share it We all need it Remember this: A soccer player cant be delusional that is the main reason i quit job and made comeback. That way I dont symptomhunt it helped a lot

Howard: I want people to belive in future. I want people to be healthy. What I am telling you is my story. My choices. My longterm decissions. My dreams for the future. I want people to see how I deal with HD in my family. And if they want to: they can choose to follow me. It is all up to individuals to decide for themselves

Well, my final words to you on this topic are that you have very delusional and grandiose thoughts about yourself, and that you do need to get some help. What you do with that advice is up to you

I will no longer waste my time with you. I suggest everyone else follow suit. You are sad.

Howard, every time I hear your story, and your daughter's story, I am so amazed. She has been so lived so positively with her hd, and how you take care of your daughter, there is no price tag on that. I was very happy to get your pm, I will write you back with an update in a few days, I just don't have the energy right now, just like I know that took energy for you to do such an indepth post, thank you Howard, you're one hel'of'a guy Everyone can learn from you, and we're all on this journey together



Edited 1 time(s). Last edit at 07/08/2014 03:15AM by Barb.

Running for Life, listen to Howard. He and his daughter Allison know a great deal about HD, especially about living positively with HD.

Will has the HD mutation. He is in his late sixties. He has had two good careers, one in the military and one in public service. He has a happy marriage, good friends, and hobbies. He helps with this website. Yes, he exercises and takes supplements, but he does those things as a small part of his life. I hope he lives a long, symptom-free life, but even if he were (God forbid) to get hit by a truck tomorrow, he has had a rich and full life. I am very glad he didn't drop out of life at age twenty.

Barb has HD. She is not at risk, she is symptomatic and yet she has been living as full a life as possible and has been as far as I have known her.

I cannot express my admiration for these four people strongly enough.

People at risk should not quit their jobs to exercise. There is no evidence at all that exercise beyond physical fitness delays HD onset. If you are at risk for HD, plan as if you have it, live as if you don't, but definitely eat well and exercise as we all should do. When the thought of HD consumes your life, get tested, then you know what you are dealing with.



Edited 1 time(s). Last edit at 07/08/2014 04:38PM by Marsha.

Dont get me wrong, Marsha. I truly, honestly, do not advice people at risk to drop out of life or quit their Jobs or sacrifice friends or sacrifice tons of money for supplements. I just want to tell these people my story. For me; those sacrifices are the correct decissions.

I have not droped out of life. I have taken 8 months off because I needed some time off after recieving the HD Message. Especially when I experienced some symptoms that might be HD. HD is frightning and my biggest fear.

For me quiting job helped a lot. It gave me time to stress down, play Soccer, hang out with friends and enjoy life And I am so glad I didnt give in to the pressure from society. My motivation has increased so much and will Benefit me in the long run

When I was told about HD by professionals they said it was untreatable. They said there were nothing I could do to delay or prevent symptoms if I had the HD mutation. And that scared me. Like a week after I was told I was at risk I recognized symptoms. It was so frightning. You know. Sleeping bad is one thing. Everyone can have a bad period of sleep. But rapid finger movements, low motivation, me arguing with many people, me being tired all day. All these stuff worried me a lot. At that point I thought I was a dead man. I saw no future. I thought I would change like my father. Turn into the same monster. He tortured me psycologicaly. He argued with me all the time. He called me a loser. He called me a devil. He called me weak. He said the world would be better without me. He ruined my life. He made my closest friends bully me. He made me quit my by far biggest passion in life, soccer. I was scared being home when he was there. He hit me. He treatned me to death. He raped my mom. He completly ruined my life, my brothers life and my mothers life. It was unbelievable.

To a boy at age 20 the thought of becoming that person is very frightning.

To me there was only 1 choice: quit job, stress down, exercise, eat healthy, play Soccer, enjoy life, live every day like it is the last and read about HD.

And then after few days I see these articles about Gene Silncing. I see ISIS and Roche commiting hundreds of millions dollars to cure HD. I see articles about Creatine.
It was so inspiering!

I see the HDDW observational trial proving more than 3 year delayed onset when taking supplements. I see articles pointing towards excercise delay onset by 4,6 years.

And I am thinking: 3+4,6 is 7,6 years. That is motivational!

I see some guys talking about SSRIs. They say it delay onset with years.

And I realize: We might be looking at 10 years delayed onset!

I see scientist having a goal curing HD within 2020. Look how far we have come in the last 20 years. Imagine were we are in 10 years!

I realize. This HD gene might not kill me. My odds are great. Our odds are great. And they get better day by day

But then I read people at this forum worrying about them starting to devolope symptoms. I see people say there is nothing to do with HD.

Then I think: These people has to know! It is my duty as a human being to let these guys know there are treatments out there. There is actually a great chance these people can get saved from HD.

There is a great chance we already have found the cure. We only have to prove it is safe. Phase 3 trial will be here soon So inspiering! I am so greatful to everyone who has helped participating in trials and searching for a cure of HD.

This website was founded on hope! There is no one here saying that there is nothing you can do to delay onset. No one at all. We have an 18 year history of looking at mouse studies for 'best bets' and reviewing the literature and advocating for clinical trials. The original HD Lighthouse was founded in 1996; Steve and I took it over in 2004 when Jerry Lampson died. We started HDAC in 2000 and merged the two sites a few years ago. I also reported on research for the HDSA for five years.

Some people here are worrying about symptoms because they have them or because a loved one has them and they need to be treated. It's important to share information about what medications have worked because no one medication works for everyone and no medication works indefinitely. Usually it's a process where different meds and doses are tried until the best combination is found.

We also have a long history of people who think that they may be starting with symptoms who test negative, so we are aware of how stress can mimic HD.

And you have no idea who you are speaking to, when you say everyone is so hopeless and it's YOUR duty to tell everyone the positive. Huh???? Do you know you are speaking to Marsha??? Do you know who Marsha is????? SHE is the one who has written all the positive research articles one this site! And we're all a bunch of dummies that don't know the latest research and know how to live positively with hd??? So YOU are the one, the appointed one, to blow the trumped, well thank you grandious superhuman person. Wow, what would we have done without you.

Thank you so much Marsha for all you do, and for your kind words

Dont Get me wrong my friends:, I know you are working hard. I got a lot info through this site. You guys have for certain helped exctending my life if I have the mutation. You are doing brilliant! I am proud of you

I just want to cooperate, my friends. I want to share my story. Every can choose for themselves if they want to listen to it or not.

I want an own thread for how we can delay onset of HD just to make it easier for people at risk to find the medicines

Barb-

I agree, Running's posting is kinda worded in a condescneding manner. But maybe we can give him some lattitude, knowing he is writing in a second language?

Nope. Being delusional and in need of psychiatric help/and or meds, is the same in any language.



Edited 1 time(s). Last edit at 07/09/2014 02:20PM by Barb.

I say cut some slack too.

While we all get irritated with comments now and then (I am still upset over the stem cell thread), we should remember that we are all part of the same community. We are bound to get on each other's nerves, just like family members do.

I do not chime in very often on here as I am awaiting results from HD testing (cross your fingers) but I too take issue with Barb. She basically scold's everyone and seems to be the self-appointed spanker of everyone on here whose post's she does not agree with. She may think she is helping folk's but I think she actually discourages people. I know the moderators that run this site have a particular fondness for her but would advise them to at least reign her in a bit. Just my opinion....with the terror and fear that comes with awaiting HD results or HD experience Barb is the last person you want input from. Take particular note Marsha...

I'm sorry ken, and yes ive been a bit over the top, and I do need to tone things down, so im very sorry, and I'm sorry that ive made your waiting for your results more stressful, we all have stressful things going on, and I wish you the best with your results, again sorry, I have been over the top

We stand beside you Ken in your wish for a negative test result.

However, I am unable to ignore your chastising post.

I particularly find being told publicly how and who to moderate particularly indelicate and particularly offensive.

We've shared the journey of many HD family members over the last 14 years and I will testify to the fact that Barb has added much more to this site than even she is aware of. Pointing out a simple fact, you have 5 posts on this site. Barb has 6,231 posts – so you can appreciate why we like Barb here. She has contributed a LOT to our journey. If you continue to tolerate us then hopefully you will find that over the long term that the balance will be that the posts are more useful to you than annoying to read.

Over the 14 years I've been criticized numerous times for not blocking this person or that person and that’s okay – I usually have my big boy pants on. But this board is not only for HD caregivers but also for HD patients. When I block someone I always get criticized (usually by those who have been helped, supported, or encouraged by the person I am temporarily blocking.) My introduction to this, which was shocking to me was to be called "a godless nazi" for blocking someone who was out of control at the time. I took no pleasure doing it and it was purely for the protection of the community dynamics.

My latest blocking policy has been forged in the eternal fire of Huntington’s Disease Web Dynamics. (Yes, that’s a little melodramatic).

* I assume people that participate on this site know that we are here for HD families ( "by HD family members for HD family members" ). I don't block HD patients for posting their opinion.

* I don't block HD caregivers for their opinions.

* I only block when a person has clearly demonstrated to me that they can't get off of a topic (i.e. always having the last post plus a few more). OCD is a symptom of HD and I've learned that this is destructive to the board. The only way to protect the board from serious degradation is to temporarily block the person. Of course, we've also had caregivers here that seem to go OCD on particular topics.

Our goal is to provide a place where people can ask questions and get a variety of answers and support. We even allow posts that we disagree with but will respond with our perspective. If misinformation is being provided we try to jump on it ASAP but surprisingly that doesn't happen very often. We know that Huntington's disease is a family disease and caregivers often become patients. We are not going to lose access to valuable insight simply because someone might be more direct or opinionated than we would like.

Those who can't handle opinions that are different than their own usually find a more comfortable format and we have never been offended by that, even though sometimes the person leaving the board went away in a less than delicate manner. I've said many times that if this forum isn't your cup of tea then then there are many others that you can select from. So if you decide to stop contributing we totally understand. You are more than welcome to continue to read the posts. If you decide that you can't read the board because it seems like we are fighting among ourselves and you want a "quieter environment" then we understand that too. There have been periods of time when we too have had to step away from the board for awhile.

I do not apologize for being biased toward this group. I am very grateful for those who take so much of their personal time to contribute as it can take a LOT of time to compose a three start post. I’ve learned a lot here and have been blown away by posts that have provided unique insight, or support that was expressed in an amazingly compassionate way.



Edited 1 time(s). Last edit at 07/13/2014 09:13PM by SteveI.