My biggest piece of advice for the next person is get tested so you have context for all that follows. Teresa went in to be tested in the early 90's. She went to two counseling apps. and came out with no test. I now know people cope with the answer... whichever answer, eventually. They also plan, discuss, and generally get treatment sooner. Once the counselor convinced her, and me for that matter, that there was NO advantage to knowing, the subject was never brought up again. Even when I knew personally she was probably showing symptoms. Literally there were years of frustration, and mistreatment for everyone not knowing. Also we lost a lot of money due to quarters not worked from the time wasted of her going undiagnosed. Considering she was there to be tested... the default should be to give the test and not be talked out of the test. As far as I know that is still the default position of some people at the COE locally.

There is a lot everyone can do with the information that is constructive... and I bet a lot of these regrets here would be averted for those that find out pre-symptomatically. Especially with the information now available, and people in families willing to mentor others. By the time one is clinically diagnosed.. a lot of water goes under the bridge. Just living your life like everyone is going to be 100 years old can bite ya. Family planning is off the table. Sufferers are allowed to live in dangerous situations, like driving beyond the time they should. All this stuff plus just understanding right away moods and behaviors have cause... would make a lot of difference. I would therefore say anyone who expresses an interest in testing be supported to follow through. The ignorance and bliss has a back end cost.

I had a lot of mistakes and regrets... most all from HD getting ahead of us, and me and Teresa working from way behind it and catching up. I would back up and change that.

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Edited 1 time(s). Last edit at 05/14/2010 08:46PM by greeneyes.

I would have been more adamant about discussing it and planning. I would have been a real stickler about the insurance, nursing home care, and her exercise, and I would have made sure she had more treatment upfront instead of waiting until she couldn't benifit from it.



Edited 1 time(s). Last edit at 05/14/2010 03:52PM by Fred.

I planned to go to the van con right up to that Ross smashed the car, costing us $9,500 in write off and new car. The HDSA conference we went to was in 2004 and a mini conference in Buffalo in 2008.

All my life I have been a victim of HD but I also have a lot of things to cope with including a child with profound dyspraxia which now help me with HD. I think if it were Tony writing instead of me there would be more sympathy. I have nothing in common with most of you with low cags My ability to type allowed me to pass as normal, but I have to single task. I have had HD actively since I was 39.

My plan to cope with HD has been shot in the head, the aquatics was so important but no research in that, the support group was also important and cancelled. I don?t have a shrink with a brain disease. Neither does anyone in Ontario.

Last fall I was attacked for trying to help. I have done a lot of sitting doing nothing thanks to that. Everyone has to stop hurting people here. Especially the older ones with high cags. I don?t know where JL is but unless she in considered as an equal partner here then you are discriminating someone with HD.

The past winter I have had med changes. Since I turned 60 I now have dementia mental health services at home, not the same as been 59 and depressed, meaning non existant.

My biggest regret is my lack of support for my mother. I left home to attend college 2,000 miles away, knowing my father was seriously ill, and never looked back. Only recently, after my mother has passed and dad has been gone for over 30 years and my sister and brother are dealing with HD do I realize the horrible isolation and pain she went through without family support.

I wish I had not spent as much time searching and reading and searching and reading.....about HD . I wish I had set aside a time period , an hour a day , or 3 hours a week something like that . Life stood still , i wish I hadn't allowed that . all my best. db

hmmm...hard question...

..id probably feel less anger towards my mum for the things she would do

...id probably spend less time beating myself up and feeling guilty for all the things i didn't do

...and maybe if i hadve known the disease was so long, maybe i would have moved away when i was younger, rather than feeling like i had to stick around to look after her (cause im still here 15 years later)

...and maybe the day she called me for the 100th time i wouldnt have yelled at her because i would have understood more about the illness

You know what i wish more than anything in the world though...i wish my mum didnt go into a nursing home so early and i wish she hadve had the opportunity to have more of a quality of life in the community. But I dont think as a young person i could have done anything too differently there (other than feel less guilt) because really i didnt have the ability or resources to...but i wish someone else did. But thats a whole other thread!

The only regret I have is not placing Jack sooner in a facility while he was still able to understand things. He never adjusted because by the time we placed him he had no reasoning or understanding left. Also, by waiting until we were in "crisis" my options for placement were very limited (only place that would accept him had HD experience and was far from home).

Vickie

I am not putting a period on this thread. But I had actually a hidden agenda. All these things are what makes HD hard. If I asked for three things you would pass on and you would have changed, a clearer picture of things would emerge.

here is NOT what people say...

I wish I worked harder for "the cure".

I wish we had more trial participation.

I wish I earned more cash or went to more walks and galas.


To me this thread should be the template of empathy that organizations need to concentrate on. This is how HD is relevant in our lives. We need these issues tackled... mentoring programs for the people of today and the immediate future who are not using catch phrases, spinning HD into being a good thing... and why we should be rah-rah about it. Peer group meetings... not lame social workers who lead the group, with misplaced understanding of what is important and how they present ideas.

I think maybe it's time for position papers to be written or at the very least editorials of issues written to be debated and settled with some authority. I personally didn't see one issue up there anyone could disagree with. Many are correctable actions if anyone was there to warn people they are coming your way... here is what to do. Or not do. All I know is there is no point of organizing without a encompassing vision for doing so. Those issues up there... those are the peoples concerns. We all missed the boat somewhere... and people are going to miss the same boat again and again unless someone helps them right now. The organizations are the blind leading the blind. What Steve is bringing up... 15 light bulbs should be going off on that board. If they don't get what he is saying... they are the wrong people for the job.

Barb Wrote:
-------------------------------------------------------
> I can't think of anything i would change. I don't
> have any negative actions to advize on, only
> positive. I would say, do as i've done. Google
> everything you can about hd. Research everything.
> Get to know what this disease is, and how you can
> fight it. Be bold and upfront about hd. Don't be
> scared to question your doctors, to be in charge
> of your hd. Don't let hd manage you, you manage it
> for as long as you can.

It's funny, this is what i said. I'm the only person that posted something like this, and i've been wondering why. I've read this thread over and over, so many times, because i'm overwhelmed with the common theme in every persons post, except for mine. The huge common element here, was each and every person is so very very overwhelmed with guilts and regrets. I'm overwhelmed seeing how much hd causes people to feel this way. I think your right Eric, that people are hurting so bad, and need help with their feelings. With hd, i think people don't know how to not feel guilt. I think people need support and help, but not only that, need to learn how to re-think, and not feel any regrets or guilt about hd, people need help with that.



Edited 1 time(s). Last edit at 05/21/2010 02:18PM by Barb.

Good points ...its funny Barb cause for the amount of guilt ive felt over the years, i found it kinda hard to pull out some significant regrets/or things i would do differently because ive done the best i can...

Guilt is a huge issue though...people feel guilty for placing someone in a nursing home too late..others feel guilty for doing it too early..people feel guilty for moving away...others feel regrets for staying...people feel guilty for being gene negative...others feel guilty for being gene positive...it goes on and on and on

i know ive had conversation with a few HD friends over the years, and at times we have a bit of a laugh...I remember one day saying how guilty i felt at my wedding because at times i wished my mum wasn't there, so i didn't have to feel responsible for her...and my friend said how guilty they felt because they didnt have there HD parent at their wedding at all...

so whatever we do we are going to feel guilty!

Connections with others dealing with the same issues really helps to put it in its place though.



Edited 2 time(s). Last edit at 05/21/2010 10:59PM by Michelle.

2 things I would change:
1. I wish I knew HD was in the family, it would have impacted how I viewed my mother for so long. Perhaps the resentment and hostility could have been replaced with empathy and patience?
2. If I knew HD was in the family, I would have tested before kids. My single most agony continues to be fear that I passed this on to them.

What I couldn't change:
1. now that I know I am proactive with supplements, exercise, and studies. Insurances are all in place. The kids are informed. I feel empowered.