I closed the CHDI and questionaire thread.

They were getting a little long in the tooth and a little tainted.

I love a good argument (one where productive ideas are exchanged), but when it degrades into name calling and someone justifying their position by trashing the board, it just doesn't work anymore.

Just a reminder. Board participants are invited to register with one profile. You can be anonymous but please don't misrepresent yourself. If you're a caregiver please represent yourself as a caregiver. If you're an HD patient please represent yourself as a patient, if you're at risk please represent yourself as at risk.

It helps those of us who spend so much time responding to your questions to be able to answer them in context of where you are. You waste our time when you don't represent yourself as who you are and it really pisses me off.

HD patients go through stages of HD. HD caregivers also go through stages of caregiving. Questions need to be answered in the context of where you are - and correspondingly the answers we provide should be considered in context of where we are.

Trust is a precious commodity among HD families. It is slow to cultivate and easy to destroy. CHDI and HDSA need to start cultivating that trust. I can see the passion in a Jane Paulsen - it's honest and refreshing.

Steve




Edited 1 time(s). Last edit at 06/10/2009 10:40PM by stevei.

I feel lied to, like there was something strange going on, thank you so much Steve

I think Louise Vetter will also be trying. She very nicely responded to correspondence. Good first step..

You're "right on" Eric.

Louise understands, and has said repeatedly, that HDSA is not the office in New York. The members of the Huntington's Disease Society of America are the chapters, the affiliates and the HD families the NY office serves. Everything she's done to date leads me to believe that she actually believes that. So is HDSA is undergoing a cultural tsunami? I hope so.

Steve

So I read the HDquestionnaire thread and although this new threat is supposed to stop that discussion, there is something that is really bothering me and I wanted to respond to: I'm young (just turned 30) and slim and even though I'm new here I already love this place. I'm not participating that much because I'm in the learning process (HD is very new in my life) so I listen (well, I read) to what others that know a lot more than me, that have lived a lot more than me have to say.

I don't think people here are old or boring or anything like that. I think they are wise and they care enough to help complete stragers whenever they need it without asking anything in return.

I know I want to be able to emulate those people that are being called "old", but then I guess I'm not hip or cool at all.

I like to hear from new people to HD despite their age, Hip is great for selling jeans. But whether young or old.. HD as a subject really lacks hippness. Even 13 on House can't make it anything but serious.

New people to HD should post, you aren't the only new person. Like Steve says.. everyone has a stage. You get to test the waters.. or get some thought or feeling validated.. or listen to others like yourself on not like yourself and sort of get your act together. I remember when I first started posting... I wasn't new to HD but I didn't have access to other people dealing with it. I would post my post, and get stuff back that really changed what I thought.

My biggest swing position was about having kids naturally ether at risk or tested positive. At first I was a "let God decide" sort of person about it. I swung way the other way and was really adamantly against it. Now I am just happy if a prospective parent will take the time to learn what all the potential challenges might be. By posting on the subject.. as a new person to posting.. I tested what I thought and other people speaking brought me to a place where I am comfortable. I am not sure had people not addressed me personally, that I would have gotten to this point. As long as you don't fear someone else having a different point of view.. or don't mind changing your views.. nothing bad happens from a post. I didn't always get validation.. I would look to see why. It was good for me. It still is. No one hear holds exactly the same opinions they did from their first post to their most current one.

As for the person who was critical about hipness.. that person had a specific agenda and never wanted to participate in the forum anyway.. so don't worry about the statement. The person was not happy the agenda was not a blockbuster with everyone is all. Water under the bridge.

Thank you Eric, and against what Stevei had to say, and I quote: "But when in doubt, agree with nothing Eric says" , I agree with you: nothing bad happens from a post. I would say that, on the contrary, a good thing happens because exchanging opinions you can change your own mind and that is what mature people do: they change and grow up. Just like you and the issue of children (BTW, I've already decided I'm going through IVF/PGD).

So, I'm not affraid of speaking up my mind and people not agreeing with me. I'm looking forward to the moment I'll be able to do that more often. In the meantime, I learn from others that know more than I do, that's why I didn't appreciate it when they were insulted.

It's okay to agree with Eric as long as you're following the last rule which is "ignore Steve".

Steve

I was wondering whether I should post and answer or not because if I did, I would be violating the rule about ingoring Steve, but then I realised I'm a rebel so, Steve, I'm LOL.

hiya: can you clear something thats really really bothering me please. I cant quite follow everything thats happened. I think we all have enough drama in our lives!
im surprised at how upset i am, and im sorry to ask, but can someone please clarrify for me if ***** ****** is real? (who isnt "real"!)
You see, i have spent a lot of time thinking about the person i suspect isnt "real": i read an earlier thread by "IT", in relation to something "IT" posted about testing and i was real worried about the research "IT" had been given and how "IT" had interpreted it. so much so i started to articulate a response to it, but i wanted to make sure it wasnt a scary response.
truth is: MY response was scary as it gave a rather negative, but realistic spec on the reality of testing positive and how that feels when your "quite young". (or i imagine at any age!).
I could only think about how much my views had changed from age 17, to age 24 to age 34. They have changed so much. And coming here i damn well NEEDED the maternal/paternal/whatever whoever support i received and i really appreciated the solid sound advise.
Unfortunatley my years of seeing HD in its "full glory" have given me too a view on life that is different to how i was ten years ago.
If this board had existed ten years ago, i may have been ******. ITS views were interesting and challenging, if a little "quirky". But i probably would have been here defending my husbands decision not to test and the fact that we were a strong family that would deal with anything!
That we had strong values, a good marriage. Family support. I was a bright and sunny dispositioned person:always saw the bright side and people often tell me off for singing so much (especially at work).
Following my husbands test i dont sing. I dont do anything like that and i am a different person, consumed by fear and i feel the services are turning their backs on me when i ask for help.
The "negative comments" are what could be labelled "depressive realism". The person of higher intelligence who is able to see the reality of a situation for what it is and is saddened by it.
But, it makes it better on this forum: such a gift from people who already give so much. PHD's those persons at risk, carers.
In summary: my concern is: have i considered all these issues and worried about ***** or someone else: actually spent emotional time, away from my kids - for a fake person?
im really really sorry if that is not the case and if ***** is real, you asked some interesting questions and id like to answer some, from my perspective. I want to help you and you have lots to learn. THis is the right place.
but if IT or anyone else is not? if someone posted here and were being pedantic and argumentative for the sheer hell of it. what then??
i cant tell you the lies and untruths i have already put up with around hd and this is a place i trust. People i trust, who have helped and i want to extend that back, where i can, despite my own stuff.
because i see how people suffer so much with hd.
earlier there was a post, saying something about "hello ..... cottage cheeze something... what is your relation to hd???"
This upset me too. I wondered if this was to the woman who had posted saying she wanted to blow herself and her kids up. I was concerned for a few days that she was going to maybe loose her thread on life and a couple of babies were going to be wiped out. Yet i understood her panic and desperation and love of her kids. I also knew, through my work that very rarely people do this.
Was this some kind of joke too? or was this a plea for help.
How do we know?
i have a message for anyone that may have done this: very shame on you.
i dont think im allowed to swear my ducking head off at how livid at the thought i am at the extent of such pedantic argumentativeness. But if its true: (and franker speech is required) i have no time for spineless arse hole wierdos who make up secondary persons (unless they are doing so cause they want to be annonymous).
How very dare you waste the time of anyone on this forum. its bloody downright wierd and in my eyes a little psychopathic.
i dont need people like you in my life.
im a real live psychci nurse and spend a good amount of my week working with the psychotic and personality disordered.
i come here for a break.
so please, please: let me have one.
(tall, thin, brunette, under 35 and not fuddy duddy, with enough self confidence that i dont need to talk about how hip and trendy i am!)
thats not the point: im here to get support and HD advocacy, which i get.
For the record: this week i took my 8 year old son to the drs and was told there were some serious concerns that he may require "those steps" into looking into jhd. My husband is no longer capable of giving much of a shit and his brother and family dont care.
The place that does care is here.
So how much disgust do you think i hold for you at this point? My safe place and you urinate on it.
Tommorow i will forgive and move on. Im sure there is a reason for what you are doing. Its the sort of thing my hubs brothers wife would do: but we suspect she has an attention seeking disorder.
You see, in time, we will all move on and you will just be another person as a group of people, we will say: remember the wierdo who did that...... Whereas you: im sure there is some sort of "facility" for people who do that sort of thing to torment vulnerable people intentionally. Its my understanding that in prisons, these people are so hated they are placed in "vulnerable persons" units, for their own safety.
but right now the only sweetness in life is that provided by human nature in the caring given of those that do so, despite facing there own problems. qualities and grace i admire so much.
how very dare you piss on this?
Shame on you. Im so fucking angry at HD and people like you make me wanna be sick.
The ONLY plausible explanation i can find is that either HD or another disorder has eroded your brain and you require help for your depravity.
Or that you created a psyedoname on behalf of a family memeber? An explanation would be great and my thread can be removed:
IN THIS CIRCUMSTANCE I APOLOGISE WITHOUT RESERVATION: PLEASE FORGIVE ME.
But i dont think i would grace you with the explanation of HD as an excuse for your actions.
if im kicked off the forum for this thread, so be it.
i feel like you peed on me personally.
And i dont need to come here for a wierdo to be protected: i need to come here for the support of the people who have given it when i needed it, to whom i will be eternally grateful.x
Marsha/steve: sorry please edit or delete if required.
i needed to write this. I am enraged. x



Edited 1 time(s). Last edit at 06/11/2009 05:53PM by trying 2 cope.

It's ok, i understand how you're feeling, and i have the same thoughts as well. Your post and your feelings are absolutely fine...just go back and edit your full F word with just an F



Edited 1 time(s). Last edit at 06/11/2009 05:48PM by Barb.

barb, im so glad your here. help me you person over 50: despite being incredibly good looking my heart is breaking!!!!
i think i have gone mad. i will ammend the f.
x x x x
ps i replaced it, but if i missed anything im sorry and i dont mean to start anything off again steve, after i just read your concerted efforts to stop any horridness.
i just wanted to clarrify who was real.
but i got carried away. sorry.
feel free to edit what needs to be taken off... but im leaving it on for any person who needs to read it who may have played a game.
i have zero tolerance for attention seekers and 100% time for hd. x
pps barb, i didnt mean help me literally, it was more a hysterical rant cause you responded so quick! i cant beleive i just posted it. i swore and was half joking about oldies vs young hip trendies.
but im glad you lot are on here.
i was distressed by the stuff. im surprised how much.



Edited 2 time(s). Last edit at 06/11/2009 06:48PM by trying 2 cope.

I ditto everything said above and more.. I DO NOT forgive sorry. I don't think I have to, NOPE don't have to and don't want to. We have enuff to deal with on a daily basis than to put up with LIARS. NO ONE in our HD community LIES to ANYONE,, Don't you GET THAT?? NO ONE. We just don't do it PERIOD. We respect each other too much. If there is something personal we don't want anyone to know we just don't talk about it, but we sure as Shlt do NOT make crap up. I have not only My kids at risk and an ex husband that I will be seeing this weekend, but my step children are at risk, and I help take care of my husband's ex wife. You DARE do this to our minds? GO to you know where.

It's ok, i think a game was played too, but i don't know. Steve said someone misrepresented themselves, and came on with several profiles. I feel very lied to, and very angry at this person too. And oh gee i didnt feel like jumping on the bandwagon and had certain cautions, wonder why????? This makes me really mad too. All these other fake profiles saying hurray hurray, if that was the case, and now my survey info that i submitted too, if that's what happened, i just wanna puke.



Edited 1 time(s). Last edit at 06/11/2009 06:05PM by Barb.

I think we deserve more of an explanation Steve. This was done publicly to all of us, so it should be fully exposed publicly, so we dont feel we dont know who to trust.

Yes someone was posing as someone else. Once in a great while it happens and we will waste time on them.. but generally when you post to one person you are also posting to many so nothing is wasted in that respect. We got played for a little bit. I had to apologize to Maggie over this as she deserved one. But that's ok, It just tightens us up a little bit as a group. This will happen again sometime. It's rare occurrence. Everything will be back to normal.. well normal as HD goes.. very soon. This person probably had no idea what they did. But the person is blocked.

I am sorry to hear you think JHD is possible. What is leading you to believe he might be having symptoms?

Barb.. I don't think we need to know everything. The person is blocked. The person has one issue and it would shine though if the person came back.

You're right Eric...oh gosh, yes, what's happening with JHD?



Edited 1 time(s). Last edit at 06/11/2009 06:30PM by Barb.

im so glad your all here i feel so sick. thanks eric.
my little boy: they wanna look into if he has jhd. im gonna be sick.
its complex: and very "this week".
i took him to the paed. and she was an asian lady. i think she made a mistake. she did these walking tests on my son and then when we mentioned hubs hd, her face dropped.
that bit was ok, i wasnt botherd by that, i just thought she didnt know what i was talking about/
then she asked how far he was into process. i said: "just softer signs".
She then said all this stuff about my son and wanted various scans to rule out some other stuff and referal to genetics, i said, no, dont bother with that, just do the scan: he is only 8. he just has aspergers...besides, all this other stuff needs to be ruled out.
she said she only needed to rule out 2 things, one was a brain tumor, which she was pretty certain he didnt have, one was cerebal pulsey and he wasnt born with that.
i didnt get it, but the stuff he is presenting with, she says: "you are aware of the symtoms you are reporting in your son" i says, "yeah, his legs are stiff and hurt him thats why we are here and he gets clumbsy".
so she asks about hubs and i says he just has "softer signs and depression" and she goes "yes, and this softer signs is what we are seeing in your son, he need genetic bloods".
i thought it was a language problem and challenged her, like "hang on, its not that obvious, its a long process, he is little, his dads cag is only 40, its so rare. look at him." But he will die!
(he had been sent out the room).
She says 4 times: "i hope and i pray it is not this, but we need to find out".
so i tell her she must be wrong. Hd is complicated, i already know the services:
she tells me she just finished working with a jhd who died.
she knows what she is talking about.
this happened tuesday.
i said do the scans, i will contact genetics myself. you write nothing on my sons notes. she says "i need to, this important information"
i said no.
i think she cant say an 8 year old has "soft signs"
she must be wrong
this is all wrong.



Edited 1 time(s). Last edit at 06/11/2009 06:58PM by trying 2 cope.

Oh my gosh...can you tell me what aspergers is? It's ok, i just did a very quick google, and will look more up too. I'm so sorry, it sounds like a type of autism. What made you go to the doctor this week with him, was some of his asperger symptoms seeming to be worse, or more symptoms than what he's previously had? My little neice has tourettes syndrome now, and her mom hasn't tested for hd yet. So we have some small worries, but yours are huge! I love all of your posts, please keep telling us more...wish i had some good words for you, but it is best for your son to have jhd ruled out, or if it is, at least he will be treated for the proper disease. It is important to find out. I'm so sorry, it might not be, but it is possible (((hugs)))



Edited 1 time(s). Last edit at 06/11/2009 07:11PM by Barb.