Barb, I think you need to go back and read what I "said," and it's really the assumptions that I take issue with, not the opinions. You did a pretty good job of doing this right now, and maybe only convinced me I did have a point. Writing a sentence that starts with, "I'm not trying to be mean.." does not make one feel welcome here. What I have written has been in an effort tby Brett T - Huntington's Disease Support Center
Marsha, for the very reasons you cite and I agree with ( well maybe not SOME of the unconventional wisdom ) I think it is crucial that this site attracts and retains as many new people out there suffering alone now as possible. I mean just recently we heard from a woman in Montana who literally has no support around her at all, and if she wants some she is going to have to create a group herselby Brett T - Huntington's Disease Support Center
I have never participated in an internet forum ( of any kind ) until just recently ( this one and one other ). But one thing I can say about being new here is you do pick up a vibe, at times, that some feel there is a conventional wisdom, which has already been established - and anyone who runs against it must be in a state of denial, or is not equipped to understand what they are really saying.by Brett T - Huntington's Disease Support Center
rj, in my case it is hard to say. As both set in before they were really on my radar, but out of all my symptoms depression was far and away the most prevalent and maybe came first. I am glad you are reading about it and appreciate your question as lucy48 just pointed out most of us have so many, each additional one can be a gift. Brett Tby Brett T - Huntington's Disease Support Center
Thank greeneyes, Sara and everyone else. Greeneys, if there is maybe one thing HD has done for me, I would say that it has got me used to things being a little more difficult. Yes I still work ( I have no choice ) and remain quite active in my community ( I also coach a 4th grade boys travel basketball team from oct - march, sit on the board of my town's little league program, and coach a team tby Brett T - Huntington's Disease Support Center
Eric, I am just throwing out what I think, or am asking questions. I am not looking to challenge anyone's experience, validate mine, or say what people should do or accept. I fail to find a whole lot of sunlight between what either one of us have written or examples of where I dispute what you say. I appreciate your time trying to help me or explain things from your view, but I am not looking toby Brett T - Huntington's Disease Support Center
From the point of view of a phd, some of this sounds confusing ( and not b/c I am a phd ) If some say it is a fact that permanent brain damage causes this rage, due to missing parts of the brain, which otherwise healthy brains use to control emotion ( and this can be proven by looking at images of hd damaged brains ), how, then is "tough love" or ultimatums the answer? If the phd has prby Brett T - Huntington's Disease Support Center
thanks paulahouck for saying that. I am not sure if that word really applies to me, but I'll take it.by Brett T - Huntington's Disease Support Center
Thank you greeneyes, for answering my question, and jl for reminding others we are not all the same. At the risk of sounding redundant, if in fact rage is its own, separate symptom... ( I am often told it is just b/c I have depression ), I think this symptom runs the full gamut, as far as degree in which phds are affect by it. Some none, other out of control, ( I have witnessed this personally )by Brett T - Huntington's Disease Support Center
I am not sure but I posted this on a differant HD forum about a month ago. I did not get much response regarding my question(s): "With the ( perceived ) understanding that medications can work differently for each individual taking them, would any of you be willing to share what meds you have found that help control "rage attacks" ? Also, if anyone has an opinion as to whetby Brett T - Huntington's Disease Support Center
about 38 years for me, countless generations in my family. But no more. About a month ago I wrote this to 100 or so people I know rather well on facebook ( I do not use fb to talk about personal things in my life - just to keep in touch with old friends - this was not easy to do): ****************** "I would like you to all simply think I am who you see on the pages of my"wby Brett T - Huntington's Disease Support Center
I can only speak to my own experience, while I'm relatively new to knowing what HD is and that I have it, I am not new to living with it. ( I have about 40 years of this, whether it be 1st hand, or living with a pHD or being around their mother ) All I am trying to do is share my experience not to diminish others or sugar coat it. Perhaps this thread was intended more for caregivers, and it woulby Brett T - Huntington's Disease Support Center
I appreciate being able to read the sociological aspects of my condition in the same place where I may find medical advice. In my case HD has effected each person in my family very differently, and their experience with it has really been their own ( for the majority of the time they lived with it (which did not help us knowing it was in the family)). This of course does not help other family meby Brett T - Huntington's Disease Support Center
Nila, I hear what you are saying, and believe many share these same sentiments. Not that you need to hear it from me, but thank you for loving the HD afflicted members of your family and those at risk. I have done some "fictional" writing to try and become closer to my wife, I'm not sure if it makes sense, or is any good, but this is a passage from it expressing how I feel. Warningby Brett T - Huntington's Disease Support Center
Thanks Will, My new years resolution was to become more proactive in dealing with my HD, and I planned on taking all three of those items you cited. The Creatine was the only one I was unsure about, but you have cleared it up for me. Also, know I plan doing a lot more running this year. I don't know if you ever do any road races, but I live on Cape Cod and we have a pretty fun one in Falmby Brett T - Huntington's Disease Support Center
Not to sound flippant, but you really can't make it up. Brett Tby Brett T - Huntington's Disease Support Center
Which brand of creatine do you buy and how much do you take? I have read in order to get most out of it you may want to consume 20 grams per day ( 2 10 gram doses ), but need to be under a doctors care to do so. Is this true? Also, do any of you buy a medical grade version of this product, and if so how do you get it? ( sorry if this topic has already been covered on this site ) Thanks,by Brett T - Huntington's Disease Support Center
Best of luck, Michelle and hope it will be another great event. Looking out my window today ( seeing lots of snow ) makes me wish I was going to be attending. Please keep up the good work for all of us and continue to let us know what you are up to regarding these matters. BTby Brett T - Huntington's Disease Support Center
Gene, do have any insurance now? I was under the impression you did given you had been seeing doctors and assumed you were talking about adding to your plan long term care insurance. Which would ask you if you knew of any previous conditions such as HD, but would not test for it. To my knowledge no companies do this, but like jl says if you take the test first and it come back + this would preveby Brett T - Huntington's Disease Support Center
I wholeheartedly believe what jl is saying, and am glad she made this clear. I was trying to make two point; 1. You may want to think about getting tested and talking to someone about this may help ( not whether you should or should not ) and 2. When weighing the best long term plans for you and your family try to be in the best condition possible to ensure the right choice(s) are made. I can tby Brett T - Huntington's Disease Support Center
Welcome Lisa, I am glad to see you are reaching out for support now ( sooner rather than later ) as the one thing I can tell you about HD is everyone in the family defiantly needs it. This site I believe can be a great resource for you both as you can hear from many people who are not new to HD. Have you tried calling the Shodair Hospital Department of Genetics in Helena? Their number is (8by Brett T - Huntington's Disease Support Center
Hi Gene, I am a 40 year old guy who is HD +. After reading what you wrote I believe you may benefit from receiving some counseling, that can further explore the idea of being tested. Also, if your antidepressants were helping, and if you can still get them, I would recommend getting back on them before tackling any hard facts about HD. In other words first work on getting your state of mindby Brett T - Huntington's Disease Support Center
Hello Raven, Thank you for putting that together and showing your mother so much love. Your message to me has just the right blend of what it means to have it, and how you can try to face it. Also, Matt thank you for your work on facebook. You are a good man for offering support to this particularly, heartwrenching aspect of the disease. I'm not sure if I could face that wall everyday. -by Brett T - Huntington's Disease Support Center
Hi Brent, Welcome. I hope someone here can address this for you. I do not know, but can tell you I experience a lot of stiffness and some aches. I am 40 and HD +. Brett Tby Brett T - Huntington's Disease Support Center
Thanks db and sara, and please know I did not take it as something negative either, but rather was just making fun of myself. Also, just to clarify - one point I was trying to make was, that if "we" expect people ( who are new to learning about HD too ) will be immediately excepting of who we are and what limitations we must struggle to overcome/accept we may be let down. For this canby Brett T - Huntington's Disease Support Center
Welcome solvery7, I am new myself, but would like you to pass along to your husband an invitation to please feel free to drop me a line anytime. I too am HD+ and lived most of my life not knowing anything about it. If he would like to speak with a fellow guy who also has "at risk" kids, I would be happy to speak with him. Being a father who has HD I believe brings many challenges, oby Brett T - Huntington's Disease Support Center
Thank you all and db, yes I do like what Marsha writes ( here and other places on this site ) Keep it up, Marsha please. I live in the US. I hope my poor grammar did not lead you to think maybe English was not my 1st language ( joking ). BTby Brett T - Huntington's Disease Support Center
For years ( what should have been some of my prime earning years ) I lived suffering from the symptoms of HD, while not knowing it, or even really knowing what it was. Then I found out, and for some reason felt relief? For there was an explanation to why I was the way I was. Previous to this I had been beating myself up pretty good, struggling to comprehend why I could not live up to my own expby Brett T - Huntington's Disease Support Center