Wow, Martin now you're insulting the researchers too, they don't know anything about HD outside of a rat model, hmmm. And no Ellen, i won't be watching the video again. It was long and boring, then it got insulting and manipulative. I am allowed to have my point of view, and i don't change that because someone suggests others might folow me? I didn't like the tone of the presentation, period.

And Martin, I don't care if it was or wasn't geared towards people with hd, or just to researchers, i have hd, and i am part of the hd community, and i am allowed to have an opinion on what is said to researchers too. Don't bother insulting me, i don't need that from anyone today, or pressuring or manipulating me.



Edited 1 time(s). Last edit at 05/14/2009 07:17PM by Barb.

Steve said:
"It was shared with me that Charles Sabine wasn't particularly happy with Julie's use of the term "Owls and Ostriches". He used it as a metaphor for a personal decision. Should he be an owl or should he be an ostrich? I can easily imagine how uncomfortable he became when he saw how Julie used it, expanding it as a choice that every HD family member has to make - "Are they an owl or an ostrich?" It's easier to lay that burden on yourself than it is to lay it on others."

Thank you Steve, for helping to validate my feelings on this

Barb, I have to admit I'm a little surprised by your reaction to the video. I knew there HAD to be some negative reactions to the message which is why I wanted to hear some feedback from our community.

If this isn't the message you want communicated, then what message would you give researchers who can't find enough clinical trial participants to produce a meaningful result?

Steve

Well, you're asking two separate questions in on Steve. Which question are you asking me?

What message to give researchers?
or
How to get more people to participate in trials?
or
How to get researchers to get people to take part in trials?

Barb, I am new to this board and my diagnosis. I found you to be so offensive that I no longer want to be a part of this community board. I see you are the most active poster here and I prefer not to have you comment negatively on everything I post.

I met Charles Sabine too and he applauds her work. I wouldn't know about the Owl Ostrachis thing. I only met Julie once and in that 5 minutes she had given me a whole new positive view on my life with HD moving forward.

Negativity is infectious and I don't want to catch it.

As for the rest of you... Thanks for your support. I have enjoyed hearing from you, and I'm sad to say from now on I will only be an occasional lurker here.

Martin, i didnt insult you in any way. I spoke my opinion about a video presentation. I only asked you not to insult me. I don't go for the pity party routine. There was nothing i said here that would cause you to say that i was so offensive to you. Absolutely nothing. So if that's all it takes for you to leave, it certainly wasnt anything to do with me.



Edited 1 time(s). Last edit at 05/14/2009 07:40PM by Barb.

I guess I'm asking what steps you're taking to try to find a cure for HD? You're all about getting on the message boards about your experiences and how others don't understand what you're going through.

Are you willing or able to step up to the plate?

ellenc Wrote:
-------------------------------------------------------
> I guess I'm asking what steps you're taking to try
> to find a cure for HD? You're all about getting on
> the message boards about your experiences and how
> others don't understand what you're going through.
>
>
> Are you willing or able to step up to the plate?

What????? Step up to what plate? You mean the plate of having hd, and taking care of my hd? I do that every day

Ellen, i dont really understand your question. What steps am i taking to find a cure for hd? I'm not a researcher, so i don't know what you mean. What steps do i take to cure my hd? Is that what you mean? I have had to struggle very hard, to get the right meds for me, so that my hd improved. That was a very hard battle in itself. Not too many people with hd even acknowledge they need meds, or fight to get the right ones. Im not against trials, i'm very excited about them. Why don't you tell me what you think i should be doing? Do you mean i should be in the ACR16 trial? For the betterment of the whole community? No, i come first. I would have to go off my meds that i've fought so hard to get right. Is that what you're asking of me? What do you mean i just say that people don't understand me? I share my experiences, as hard as it is sometimes to say the same things over and over, because then someone else is able to say ooooh, i'm not the only one that has gone through that, and thanks for showing me there was a good outcome, i thought thats what the forum is for. What am i doing? I tell my own doctors and researchers thank you, by giving them a beautifull wallhanging quilt for the waiting room, and they were all in tears how thankful i was to them. I'm trying to raise money for research through my raffle quilt? What else? I have hd. What else is it that you want me doing? Everything i do is hard for me to do, very hard, yet you want more, what is it you think i should be doing? I think my only job is to try and live my hd good, and try and make life as easy as i can for my husband. And you want more?

Steve, here's your answers from me:


What message to give researchers?
Researchers need to hear big thank you's. They need to know that what they are doing is making a difference, a huge difference, and that we are cheering them on.

or
How to get more people to participate in trials?
I only know the anser for me on this one. I know guilting and manipulating the hd community into trials will do only one thing, create anger and resentment. For me, i will go in a trial when things aren't going right for me. Right now i have the closest thing to a treatment, with my memantine, and i don't want to mess with that. When things get worse, then i would have to look at dif trials. Which ones do i think would actually be helpful to me? Will i have to change my meds? Will i have side effects? How promising does the trial look, and do i think it will be good for me. If i do good on the trial, will i be able to continue the drug after the trial? All these things are what help weigh my decision.

or
How to get researchers to get people to take part in trials?
This question i think is irrelevant, because it implies co-ersion. I think people will only take part in what looks promising, and will not be harmful to themselves.

Martoid,
I wish you wouldn't leave.......I felt like I had alot in common with you. However, I do understand, I wish you and your family the very best. I need strong people like yourself to get me through.

Martiod I am also new here and learnt alot in a weeks time, I hope you will not let one persons opinion make you leave. I do think everybody that comes into this site is for one purpose and that is to fight this horriable hd and come together on that one purpose. WE do not have to agree with each other but we should be able to listen we are here because we are all living this thing one way or another. And I hope and pray each one of us can knock one more brick off this wall one brick at a time and in our own ways.Please keep on looking up that is the one thing that gets us into the next day. God Bless and take care of yourself and family hope to here from you soon.

Martin, i'm really sorry. I really didnt know if i had insulted you in any way, but i must have, i dont know how, but i am sorry. I guess my opinion on this was too strong? I guess it was, but it really doesnt matter, it's just an opinion. It wasn't anything towards you, or against you for bring this topic up. I was glad you did, so we could give opinions. Didn't mean i didn't like you bringing it up. I didnt know you didn't want opinions though, and that's all it was, not every person is always going to agree with every topic that is brought up, i wouldn't think that you would expect that. I've been happy seeing you on here, and bring up new topics, i just didnt know that you didnt want an opinion, or i wouldnt have said anything to make you feel not wanted here. I dont see any reason for you to be upset or want to leave, but if its because of me, then i'll keep my opinion to myself on this thread now. My opinion isn't needed, and no harm was meant, really.

I don't know how to address researchers in the best way. This seemed as reasonable an attempt as is possible. If you have less than an hour to engage a person, why not this way? There is no reason to be clinical. They already know that part. It's about as good as you can do and try to represent every person connected to HD and how they each struggle with HD. I am not sure researchers are the best recruiters however. It might be time to have some sociologists look at the population since we have new goals and needs. The general at risk population behaves as a group a certain way for certain reasons. Maybe our conjectures why they choose how they choose is not correct. Maybe it's not gene testers that are discouraging? What is the first thing we olders tell young people they should do to test? Get insurance.. and getting it right is time consuming and expensive. You knock out the 18-25 yr old crowd to test right there. Is that a factor? I don't really know. Common sense says to someone it may be, but is there a hard number on how much of a factor? If it is a factor is it purely practical or practical turned emotional? Assuming a 35 year old mother of two and a 21 young man are weighting concerns about testing the same way doesn't make sense though.

Are testing centers bias or is the truth in itself actually discouraging? In which case, is there anything ethical about withholding truths? I am beginning to wonder if we know why things go the way they do. If we don't, then time is being wasted barking up the wrong trees. I mean, asking a person to work for the greater good is fine if that's their soul concern.. but if their main concern is that they don't have $200 a month for insurance,, well the greater good has to wait. And pumping them on the greater good point is moot and a waste of time. And that's just a single example of many possibilities. I suspect a blanket solution to encouraging testing will only encourage a certain percentage of people and that percentage may be too small. But I am not sure if we have relevant data anywhere concerning this, with the dynamic of real possibilities of real treatments, and how that affects thinking.

I have just watched the speech and thought it raised some interesting points but was at times lacking in delivery.

I don't however think the tear jerker finale was over the top particularly when many in the audience were researchers I who guess can spend month/ years examining cells under a microscope and perhaps do not have much contact with families who are living and breathing HD every moment of their lives ( do correct me if I am wrong here ).

I am at risk and untested. my sibling is symptomatic but does not acknowledge the HD so would be unwilling to participate in any trials.

Jaq

I am wondering if the researchers can't use at risk persons in their research, do the genetic test without revealing the results, and put them in whichever group the results dictate: if they are positive put them in the drug group, if they are negative, put them in the placebo group. As long as they are professional and never reveal the results to the patients, then they can participate in drug trials and help further along research without knowing their fate. I know it raises the threat of the results being 'accidentally' revealed but I am sure the ethics committee can draw up a list of stringent guidelines to ensure the persons in direct contact with the patients don't know the results either - this is a double blinded requirement already I believe. Just my thoughts on how we can solve this delemma.

Barb dont ever stop giving your opion, I thought that this page is what that is all about giving one another opions, advise, support, facts, what works for each individual. Everybody's opion matters.

Shy, those who are gene negative can't be in the placebo group because that group also has to comparable to the treatment group.

What researchers can do and what some think it may come to and to recruit at riskers for early treatment trials and have the gene test be part of what is double blinded. That would mean twice the research subjects, twice the cost, and half the people would get a treatment that can't possibly benefit them. If it's something like creatine or fish oil which is safe that would be one thing but I don't see how they could ethically test a drug which altered a target that is functioning perfectly normally in half the subjects.

So Marsha, if they can recruit the at-riskers for early treatment trials like you said, can they give the gene positive ones the drug and the gene negatives a placebo so it won't adversely affect them. I understand the double costs because they still need to keep up the fascade so they don't know their results, but at least the placebo can ensure they aren't adversly affected by the drug.

No they can't because the groups have to be comparable. They'll be monitoring biomarkers which change early on in HD and not in those who don't have the gene. If the drug is effective, the biomarkers will normalize in the treatment group and not in the placebo group.

One day people will have a gene test to get treatments to prevent the disease!