Hi!

Im at risk for HD. 1 year ago i think i started showing symptoms HD. I struggled with sleeping. I Could lay in the bed for 3-4 hour before falling asleep. I was getting more angry and had a lot of discussions with friends and family. I was dropping things and my fingers were moving involentary. I felt my memory was weak. I struggled with motivation too. I exercised 6-7 hours a week. After reading about HD, to me these symptoms sounds like a diagnosis. I am not tested for HD.

6 Months ago I was told I was at risk for HD and I took immidiate action. I quit my job and started exercising a lot. 3-4 hours a day. I made sure i slept for at least 8 hours a day to reduce stress levels as much as possible. Then i read about LDN. A medication that increases the levels of beta-endorphines by 300% . And it is said by doctors that LDN is most beneficial taken between 9 in the evening and 3 at night. Exercise also increases levels of beta-endorphines. I started exercising every day at midnight to get the most benefit from the exercise. I also exercise 3 o clock in the afternoon. In that way i would have increased levels of beta-endorphines during the whole day. The interesting thing is: After like 2 Months my motivation got a lot better. I sleep much better. I can handle my emotions much better. And not to mention: my fingers stopped moving! I literally feel like a new person.

Once again: i am not tested and i am 20 years old.



Edited 1 time(s). Last edit at 07/07/2014 11:16AM by Runningforlife.

[www.sciencebasedmedicine.org]

Your exercise routine is ridiculous and will hurt you in the short run no matter what kind of drug you're taking. I suspect you're a LDN Troll. If you are really at risk for HD, wait until something has gone through proper clinical trials.

Will

An update on how I am doing: small symptoms started showing up 2 weeks ago. I decided to take Creatine straight away. 10g/day. I feel a lot better. I am slowly becoming me again. Wish u all the best of love

very good

I see some guys recommend Coenzyme Q-10. What dosage do you take?

type in Coenzyme Q10 in the search engine and you can see past posts. Some people feel it's too expensive to be "worth it". Many feel Ubinquinol is a better absorbed form of CoQ10

Something is very off-kilter in your thinking, if you think exercising at midnight is good for you or for hd, because exercise arouses a person, and everyone, especially people with hd or at risk for hd, need a proper nights sleep for their health. I can't even imagine how you decided that's a good thing to do. As for Q10, not everyone is for Q10, including me. Q10 is now questionable as to whether it is actually bad for hd

Why are you exercising at midnight?

Because my symptoms went away.

Mate: My symptoms disappeard when i started late excercising 20h/week. Thats why I continued staying awake until 3 at night. I am 100% commited to this project; surviving the most devasting diseas in the world, with a large CAG count. I quit my job and I am going to make soccer comeback. I made that decision 7 Months ago on the day I got the news I am at risk of HD. I never knew my dad had HD. He became a monster over around a 6-7 year period. He Even treatned me to death when I was a 10 year old. At one point I had to make an escape, running away from my house to my best friend. At that time I had 10-12 best friends, like 20-25 close friends and around 100 friends; as a 12 year old. You know. I was like a family member to 5-6 of my best friends. It was an amazing time. Every day we played soccer at school. We played before school, between the clases we played soccer, and After school we played. And when I came home i Played fotball inside our house. I was in love with the most beatiful game in world. And I became the best soccer player at school as a 5th grader, beating all the 5th, 6th and 7th graders. I controlled every game and when I was 13 i entered Oslos best 91 model team. I am 93 model.

I was like a children celebrity. Everybody knew me. Everybody thougt i was a hero in my Chilhood. And They were right. I was the best in everything. In maths, soccer, running, norwegian, geography, video games. Pretty much everything I did, I did better than everybody Else. My teacher considered me as the biggest multi-talent in both sports and at school ever in her 25 year long career as a teacher

I Ask my self today: why was I the best? And now I have the anwser. I am most likely HD positive with a large CAG expansion. Scienthists now has proven HD positive people learn at double speed of HD negative people. And thats great knowledge. Because I can Get my life exctending supplements today and increase my survival chances.

When I was 13 my dad struggled a lot. Most psychologicaly. He turned more or less into a human monster. He hit me. He was angry at me. He insulted me. He stopped driving me to soccer training. He even raped my mom, and She became pregnant. His HD turned my life from heaven to a living Hell. You know. With me being so famous the rumours about my family quickly spread. Suddenly all of my friends started to talk about my dad instead of their interests. My 25 really close friends stopped invating me and they declined all of my invitations. Over the first 2 years at junior high school They isolated me and I lost all my friends. I had no one to hang out with. Nobody. It was unreal. I couldnt belive it. I obviously became depressed. I Even quit playing soccer.

The last year at junior high school my earlier close friends started bullying me. They managed to Get the whole school to hate me. I can tell you that guys. That period was much tougher than losing my dad to HD. I think most people would commit suicide. At least start drinking, quit school or try drugs. But to me that was never an option, because I knew times will change. And again I was correct. I survived a very dangerous spot.

I still find it hard to forgive my mom for not taking any action. She let me down and only cared about her selves having a rough time. And yes it is true. Her spot was horrible too. And She had deserved much better. But She still let me down by all means. Why didnt She force me to change school? Why didnt She force me to play soccer? I Asked her for advice so many times and everytime She answered: hold on son. It will be better one day. How is that possible? It was her fault. How can you watch your own son lose all his best friends. And then watch him Get bullyed by more than 50 people. And than watch him Get isolated. And when he Asks you for advice you say: keep going to the same school. Keep getting bullyed. Keep losing grades.. Keep quiting soccer. What She did is unforgivable. In my opinion She risked her own son commiting suicide and start drinking. Only because She didnt have the heart to leave her husband. She felt sorry for him. And by doing that She let her kids down.

She left her husband when I was 16. Way too late. But of course I came back. How could I not. I made dozens of new friends at high school. And today I am living a great life entering the Norwegian University of Economics next year. But i still suffer from my father having HD with only just a fem very close friends and no dad.

This my friends is the reason why I will commit my life not to have HD. I am willing to do everything. If takes 5k/year for a medicine that only probably is lifeexctending. I will commit those 5k/year. If heavy exercise increase lifetime., i will do it. No matter what ever it takes I will do it. The last 7 Months I sacrificed my job to read about HD. And over the next 5 years I am going to spend 30k$ on most likely life exctending supplements.

Together we can fight this disease my friends!

Have you been tested? What is your CAG count?

Will

Are you delusional, or what??? You said:

"I was like a children celebrity. Everybody knew me. Everybody thougt i was a hero in my Chilhood. And They were right. I was the best in everything. In maths, soccer, running, norwegian, geography, video games. Pretty much everything I did, I did better than everybody Else. My teacher considered me as the biggest multi-talent in both sports and at school ever in her 25 year long career as a teacher
I Ask my self today: why was I the best? And now I have the anwser. I am most likely HD positive with a large CAG expansion. Scienthists now has proven HD positive people learn at double speed of HD negative people. And thats great knowledge. Because I can Get my life exctending supplements today and increase my survival chances."

Nothing you say is coherent or makes any sense, and everything is grandiose and delusional for sure! And what's this about scientists have now proven HD positive people learn at double speed of HD negative people. That is a bunch of crap, unless you can show where you read that, because NO, most people with hd struggle all their lives in school and in work, to just try and keep up with others, that is my experience for sure, and the experience of most I know.

And this is crap too, you quit your job so you can read about hd??? Huh? You can't do that after work? And exercising from midnight 'til 3 in the morning is the best time to exercise for hd????

I am very serious, you need some very serious help.



Edited 1 time(s). Last edit at 07/05/2014 06:41PM by Barb.

Will: I have not been tested. But I am most likely positive. 7 months ago my fingers were moving, I was a bit angrier than normal people and I struggled sleeping a lot.

Of course it is possible this is not HD. It is possible I was in a angry mood. It is possible my fingers were moving because of stress. YES: that is definatly an option.

And yes i am 20 years old and I have lived a very healthy life. There is really no reason for a 20 year old living healthy to have very early stage HD.

I wish that I am negative from the deep bottom of my heart. But I cant Lie to my self and ignore the symptoms.

I would say about 30% probability for me having very early stage HD.

HD is progressive. The mutant huntington is accumulative. Therefore the best way to treat HD is treating it very early. I happily sacrifice my job for extending my life to gene theraphy is availible. And it most likely is availible within few years. Fantastic!

Barb: Of course I know my statements are controversial. What I do makes no sense to most people. But my experiences are true. I was a living legend in my childhood. I had a happier childhood than you ever can imagine. And that fantastic childhood combined with dads HD was the reason my best friends started bullying me and made my life a living hell over 3 years.

I am so proud of my self. Making it through those years is a great accomplishment. I hit the weakest card in the deck, but I didnt let it stop me. Instead I rised and came back stronger and reached a whole new level of self confidence.

I do what most people dont do. I trust in myself. I am honest with my self. Always. That is the secret to success.

I am currntly making comeback on the Soccer field. All because of HD. I want to succeed so bad. All because I want tell the HDstory to the world. I want people who are struggeling with ugly diseases not to be ashamed. I want them not to feel weak. Not to feel like a burden to others. I want them to be honest to themselves. I want them to be proud of how great they are dealing with the nasty card in the deck. We have all reason in the world to be proud of ourselves.

Look at Ireland. They dont Even talk about HD. What a shame. It is so sad. It is our task as a human being to help each other.

I am 100% honest with you now: Being at risk of HD is the single thing I am most proud of in my life

Barb: In an article from 2012 on sciencedaily scientist more or less proved that HD positive people learn at double speed compared to HD negative people. All because of large CAG expansion. The more CAG. The faster learning was their statement.

Absolutely horribele News for me of course. But I have to be honest. It is true.

Here it is: HD people are superhumans pre symptomatic

[www.sciencedaily.com]

Completely devastating to read this article of course. But the fight is obviously not over. We are lucky to learn faster. We are superhumans. We can take better decisions than everybody else. Therefore we have more self confidence than everybody else. We have every reason to succeed!
For me the correct decision is to sacrifice money for life. To sac job for HD knowledge. Sac some friends for Exercising and exctended life. Its obviously though but living with HD is obv thougher.

To me it would be unforgivable to get HD because I didnt work hard enough.

As I see it we have most likely already found the cure. It just has to go through clinical trials. That is inspiering!

In the mean time there are life exctending supplements out there and I think people should know.

I was told by profesionals the disease was incureble and untreatable. My experience is that most HD at risk people also was told that. It is a huge lie. Unforgivable lie. How can we let people suffer from HD when we could have saved them from a devastating faith??? We can definatly fight this disease together. We are so close to the finish line guys!

Superhumans? No. They learned to detect differences in light intensity faster than people without the HD mutation. That says nothing about mathematical ability, reading comprehension, and numerous other tasks.

I admire your enthusiasm and positive attitude but I am very concerned about your living your life as if you have HD. What about college? What about work? Will someone support you while you do this exercise regime? Are you sure that it is the right thing to do to put your life on hold this way because you have a 50 percent chance of having the gene? I do understand waiting to test until major treatments become available but maybe it would be better to test and find out for sure rather than focus your life on HD.

I am very, very sorry for what you have gone through in your life. You are in good company. Unfortunately, we find in the HD community that some family and some friends will let us down. At the same time though, other people come forward and step up to the plate. I don't think that many people these days have learned to deal with the hard realities of life and all too many people tell me that they can't visit hospitals, go to funerals, etc. While I wish none of us ever had to deal with HD, I would not want any of us to live our lives in denial about bad things happening to good people. We are only going to be here once and we need to take opportunities to do good for others when we see them. I feel sorry for the family members and friends who cannot face adversity of any kind and feel that if they avoid others who are struggling, nothing bad will ever happen to them.

I am all for exercise to fitness - but not beyond - and for a high quality diet for those at risk. I personally think that creatine is a good bet but I encourage everyone to review the evidence about supplements and decide for themselves. We will have the answers about creatine and CoQ10 from clinical trials soon.

Thank you Marsha, you always have a nicer way of saying things than me.
Runningforlife, the only thing that that article proved, was that people with hd detect changes in light intensity faster than others. I found their conclusions from that to be ridiculous though.
The only thing it proved is this, that we already know, is that people with hd are very light sensitive, and most people with hd find bright lights extremely irritating and agitating. That is not being superhuman, it's being sensitive and easily agitated.
This has nothing to do with cognitive ability or anything else, other than light sensitivity.
I found the conclusions in the article to be very ridiculous and irresponsible.



Edited 1 time(s). Last edit at 07/06/2014 03:07PM by Barb.

Thanks for Nice posts guys. You are a smart guy Marsha. You really touched me. And what you are saying about the society is absolutely true. In my opinion most people are very scared. Scared not to fit in socially. Scared of being alone. So they cut bonds to good people who bad things happening to. Because they are scared of being watched hanging around with these people. Most people are victims. I used to be that person before I knew I was at risk of HD too.

The absurd thing: I feel so much happier After I was told I was at risk of HD than before. Be honest with ourselves: Fighting this disease is really a great accomplishment. Represent HD is a great accomplishment. Not hide HD is a great accomplishment. Being proud of HD is a great accomplishment. Look at other people: They start drinking when something bad happends to them. They eat till they are diagnosed with diabetes. Only because of small problems happening to them.

And here we stand on the top of the podium. After losing our grandparent, our parent, and knowing we have 50% chance of losing our brothers future, our sisters futrure, our own future, and not to mention our kids future to the most devastating disease in the world. You are all heroes.

I can tell you this guys: these drinkers and heavy eaters. They would never stand a chance in our spot. Never! I have won tomorrow. You have won tomorrow. We have won tomorrow. And we know that day will be the happiest day of our lives yet to come. So we live the moment. We live it 110%. We appriciate our loved ones. We laugh with our friends. We hug that boy or girlfriend. We love them so much, even God would be proud.

This is us. This is the people of HD community. Winners!

If Marsha is a smart guy, than I am a crafty woman. LOL

Runningforlife has a way with words. He or she may want to note that Marsha is in fact a woman, and this "guy" here, is a man.



Edited 1 time(s). Last edit at 07/06/2014 07:04PM by TylerFitz.

Now Tyler, are you really really sure that you're a guy??? I mean, a person these days really needs to be in touch with their own sexual identity, to really know for sure LOL

Of course you are a woman, Marsha Dont shoot me, haha . I am norwegian and never been to America. Americans names is not my best skill, haha