Hi everyone. My name is David and I live in Australia. I will give you a bit of info about myself. Firstly I had the presymptomtic test done about 4 years ago or so. I found out that my CAG is 43. I dont know if that is high or not, but from what I remember, the specialist said that even though its on the low side, it realy is impossible to say when I will start showing signs. I could start showing them at 40 years, 50 or 60 or even later. I think the point she was saying is that the higher the cag doesnt always mean you get it earlier and the lower the cag, doesnt always mean you wont get it earlier.

My mother died about 2 years ago. I haveto say it has been a real nightmare watching my own mother suffer like that. Unable to tell anyone that your thirsty, hungry, have a headache and the list goes on. Im terrified of getting it and have been for so long now. I can put it into the back of my mind, but often it tends to come out when I might have a muscle twitch etc. Anyway no point realy in raving to much here.

One thing I wanted to actualy ask is, I remember sometime back they were doing trials on something that was in the omega3 fish oils. Supposedly a company was doing trials and they found that it would be able to treat people with a CAG of below 45 I think. Whatever happened to that?? Is it still in the works or did it flop or something? The fact is, all of the supplements they are using like creatine and everything else that can help wth HD is extremely expensive.. If it was available on the PBS (Pharamaceutical Benefits Scheme) then I could be able to afford it. But the PBS only subsidizes medications and not supplements. Anyway if someone knows anything about that trial the company was/is conducting I would be most appreciative..

MAny thanks


David..

There was an update in August 2005 on the Miraxion study .. . (EPA)

[hdlighthouse.org]

Steve



Edited 1 time(s). Last edit at 12/16/2006 01:28PM by stevei.

Dear David my mom is in her late 70,s . She has a low CAG . She has been symptomatic . Her energy and movement was going downhill ; month to month . Dad started her on Omega3 Fish oils very recently . Maybe 4 or 5 months or less. My Dad stated Mom has inproved energy wise and mind wise . I too noticed her change . My Dad as the primary caregiver strongly recomends trying this . db

Hey tallboy! I don't have any ans to your questions-I'll leave that to the experts. I just want to welcome you. You have come to the right place for answers. This place is very informative, and you will meet all sorts of friends from all over the place!

I found more muscle strength with 10-20 grams of creatine a day. This allows me to exercise more.

I am 57. CAG 39. I started creatine and my doctor told me to quit but I sent him the recent article and he looked again. He is not convinced it helps, but he says it causes no harm. I have normal kidney function.

Apple

db Wrote:
-------------------------------------------------------
> Dear David my mom is in her late 70,s . She has a
> low CAG. She has been symptomatic. Her energy
> and movement was going downhill; month to month.
> Dad started her on Omega3 Fish oils very recently
> . Maybe 4 or 5 months or less. My Dad stated Mom
> has improved energy wise and mind wise. I too
> noticed her change. My Dad as the primary
> caregiver strongly recommends trying this. db

I was wondering if you could tell me the dosage you?re using. There are so many different brands out there and quality of the Omega3 fish oil. Apparently also it?s the EPA in the fish oil that you need. Do you know how much of the EPA I will need for it to work? Usually they tell you how much EPA is in the capsules which is handy. If you know of any particular brands that have a high quantity of EPA, I would be very appreciative.

Huntington?s disease has plagued our family. My mother had 4 children. I am the youngest (33), I have a sister that?s 35, my other sister is 44 and my oldest brother is 46. I am the only one that has gone for the pre symptomatic test as it was always hanging over me whether or not I have the Gene. I have to say that knowing I have it actually helped me. My stress was dramaticaly reduced, my anxiety levels went way down and I was able to cope with my depression alot better. I have had generalised anxiety and major depression ever since I was a kid. I also have been a prescription drug abuser since I was 18. I would be taking large quantities of narcotics(tablets such as endone, dymadon forte ( Dymadon 500mg and Codeine 30mgs ) and benzo's (tablets such as Valium, Xanax, Rohypnol etc). Once I found out I had the Gene, a large amount of weight was lifted off of me. My anxiety and depression was dramatically increased from not knowing if I had it or not, and also I decided that I wanted to live the rest of my years as normally as possible. I received help to get off all the drugs I was taking and now I am on the methadone program. I have been on the disability support pension since I was 18 and have had odd jobs here and there. I feel quite angry at myself for having wasted so many years, but crying over spilt milk is pointless. I have a chance to make the rest of my life worth something. I hope I am not rambling here, I just felt that I would like to share something about myself...

I look forward to hearing from everyone.. If anyone is interested in chatting to me on msn, aim, icq or any other chat program, please send me a private message and I would love to chat with you...


Many thanks to everyone on the hdac.org forums



David.............

David,

I only have to take 7 capsules a day of Vitamin World Super Omega-3 to get the 2 grams of EPA. I have a sensitive digestive system and have tolerated these very well. At the beginning of each month, Vitamin World ahas a sale and you can get 2 bottles for the price of one. Welcome to our website.

Paula

Hi David - welcome. The drug you are talking about is called Miraxion (used to be called LAX-101). It is in Phase 3 trials in the US and Europe. They expect results in the 2nd quarter of 2007. The company who nakes it is called Amarin - there is info on their website.

I suggest you read the articles on BDNF brain derived neurotrophic factor on the lighthouse site. It may give you some insight into the comfort of the narcotic analgesics. They increase it as does valium and similar azepam type drugs.
Exercise does also, and it is free of some of the nastier effects.

When I was getting morphine for a severe broken ankle, I was thinking so clearly I was amazed. This was before my test result and knowing anything about BDNF.

Apple

Dear David I don,t know . You will have to laugh at this ; All I know is , Mom takes 1 big one(3 6 9 ) in the morning for breakie. Dad gives her a Webber Naturals Omega-3 orange flavoured soft Chews midmorning which has 120 mg . then he gives her another big (3 6 9) around launch . Followed by the Soft Chew again later in the day . Dad saids she has improvement in her walking and also her mental outlook . But make no mistake , Mom,s still sick . My Mom would remind you of someone who has had a stroke . I think many people would never guess HD . Mom seems to be following the same pattern as her own Mom . They both move their head ever so slightly off and on . Also Mom moves her feet back and forth in front of her while sitting and to the side when laying down. Her mind is in the state of deterioration . She has been moody forever . Yet on the other hand she could be kind and sweet. I get a big kick out of her when any of us tell her that we love her , she saids , " Thank You" Isn,t that just Too sweet . I can say Mom tell me you love me . And she will say I love you . But you have to say that or she saids " Thank You "Boy did I get off track . All my best. db

db I gotta say that is the sweetest thing!

Hi david
My name is Michelle, im 27, and I am also from australia...my mum has hd and is living in a nursing home...I dont know a whole lot about the fish oil and other suppliments you where talking about (it all gets very confusing!) but i am trying to find out as much as i can before i start taking them...Im also working on my brothers to take the creatine...2 of my 3 brothers have had the gene test and it came back positive...anyway just wanted to say hi and welcome you and i hope you gets some answers to your questions
Take care
Michelle