I am probably taking a big risk with this note but here goes: I found this site less than a year ago and I think it is fabulous for information on what can help a person with HD - medicines, behavior, etc.

I also think it is wonderful having a group of people who understand what each other are going through. This would be the case with anything in life whether it be an illness, an accident, weight loss,etc.

I think all of you are wonderful people who have come together to help each other out and I think that is what life is all about.

BUT, it seems so much is negative lately. I know we want both sides to issues but it seems there is so much negativity about how horrible the illness is, how those with it can be so tough to be around, how many would not think of having children.

My husband has not seen this site and he is the one with HD. He has told me a couple times "I wish you would quit reading whatever site you are one because you are so depressed afterwards".

Yes, the illness definitely is not good but there are medications that can help and behaviorial changes that can help. There are also trials going on and will continue to do so until something is found that will help control the illness, prevent it from flaring up and/or curing it.
Look at what has been found for polio, diabetes, alzheimers, etc. and the list goes on.

Yes, it can be tough to be around someone with HD. It can also be tough to be around someone without HD. No doubt, I would rather not have HD in my family and those who have HD would rather not have it.
However, these are good people and they can and do make wonderful contributions to mankind. A person may be born as we call "normal" but in an instant they can be changed due to an accident, an illness, etc.
Should they not have been born due to this?

Unfortunately, in life many who are not affected with an illness do nothing about it - that is human nature - I am not saying all but many -
life keeps everyone so busy in their own world many times. Those who have a certain illness are more likely to give donations, try to find cures, etc. These people can be ordinary lay people or doctor, scientists, etc. One counselor associated with a HD clinic told me "how do you know that it won't be a person at risk for HD that finds a cure?"

Having children is a choice. Life is a blessing, a gift. Not everyone born is what some would call "perfect". I had children not knowing alot about HD but my children and their children are not mistakes. They are some of the most wonderful people in this world - I may be prejudiced a bit, of course but I also know my family and love them with all my heart. I would not want anyone else other than those in my family. Some religions would say you are taking away life by using other means of screening embryos, etc. This is a personalchoice but I get so depresssed about hearing all the negativity of those with HD having children.

Love, faith and hope are very important elements in life. Without those life would be very minimal. I have the faith that something will be found to help with HD and I hope soon and think that will be the case with computers, scientists sharing information and what has come down the pipeline lately.

I think people do better with a more positive view (not rosy but positive) than a negative one. I do.

I know I am opening myself up to being blasted by those who disagree.
I hope there are those who also believe as I do or what a depressing world this would be.

I also know all are in different stages of HD or caring for those in different stages.

I just finally had to write something. I do not want to offend anyone on this site as it is a terrific site but I guess today I just felt I had to write this.

Thanks.

Shar...its interesting that you write what you have...i was thinking the other week that sometimes it feels people are talking about a different disease to the one my mum has (which i guess just represents the many different ways this disease can effect people and families and the different roles we all have)...i mean dont get me wrong, my mum is very sick, Hd has pretty much stripped her of everthing now and its very hard...but she still smiles and holds my hand and has so much to offer...she was and still is a beautiful person.

I generally stay out of the kid debate...lol...as i guess everyone has there own choices to make...and when people have had a really difficult time with a hd parent who am i to say...oh it will be ok...i know what my experience was...and i was fortunate i could leave at 17...but hey i may have left anyway!!

I agree though...balance is good...and there are lots of fantastic people here with hd!

I also think its great you spoke up...if thats how you feel im sure there are others who feel the same...there may be some who dontbut thats ok

Michelle



Edited 1 time(s). Last edit at 09/27/2007 05:33PM by Michelle.

Hi, Shar, I understand your observations. When I came here years ago, I found that I was reading some scary and depressing stories for a person such as I was with beginning HD. Some people seemed to look on their wives, husbands as really horrible crazy people, and it made me afraid for my future. I stopped coming to this site because I thought it wasn't good for my emotions to be so scared by other people's words.

Then I had a major depression three years ago, and during a talk with my therapist, she asked if I had kept up with HD news and forums. I said I used to, and she said it would be good for me to go back and face this disease and learn all I can about it and meet people who knew about it. So I came back to the forum with a different mindset.

Now when someone is negative and sad about their pHDs, I try to realize that they are needing support and help and company in this struggle. The stories of some still scare me. I fear becoming psychotic or super angry or paranoid, all those bad ways HD affects some people. But now instead of running away I put in a kind word if I can, about how even though bad things happen, once upon a time there was good in the world (or something like that). I know things are not goody goody. I watched and took care of my dad and watched my brother go through this disease. I didn't have it as bad with my dad and brother as some on the forum had with their relatives, but I can understand it could have been worse for me, too.

Anyway, I know where you are coming from, because I also hurt when people get after those who've had children, either before or after they learned about HD. Children who have been born are delightful gifts to us all. At the same time I am glad that my husband and I weren't able to have children (I only learned HD was in the family when I was 43) and that HD stops in this line with me.

I hope you eep coming to the forum and keep sharing your feelings. It helps to have those who are hurt by negativity to teach and balance the community.

Once again I wrote a nice letter and my mouse slipped and it went to iheaven.
I shall try to remember what I said.
my genetisit as he gave me my psitive cag result said to not spend any money on cures because it would be awful. He also recommended that I stay away from brutal HD observations. He gave me a copy of the book about iother peoples feelings about genetic testing and HD.

I had genetic counselling in the 1970's, and had kids. One of my sisters was so determined not to futher fowl the human genetics that I did not tell her I was preg until the baby was born. After she died (with HD) my other sister and I eliminiated HD from our family experience which worked fine until I got it, then she had to tell her kids one of whom has a phd in neuoral medicine from Harvard.Lou gehrigs disease.
One of my son's only read the really awful stuff about HD and dropped out of univeristy from the shock of hearing that I had HD. I thought that was silly because I managed undergrad and graduate school at the same stage in my life.
The people here start off reading stuff they don't understand. Then it clicks one day and they can move up a level, or forgetaboutit.
By and large we have nice people who care about each other. Under interet health stuff, you can discuss general issues but you are supposed to take your personal needs to your doctor.
All of us are new passengers on an arc which floats over inate ignorance.
I have many ideas about HD. I also am trying to come up with a manual to take yourself from multitasking to single tasking but in the past year I have had lots of lorezepan to soften my challenges.
I also hate getting flamed because it is 1000% harder to be flamed when you have HD. So there are issues which I avid like having babies.
The only appropratie thing to do here is appreicate that so many people have done a lot of work so that you can be here
Dusty

I don't think you can have better examples of people living positively with the HD gene than Kelly with her writing -- which is translated into other languages by other groups and read all over the world, Dusty with her advocacy for children who are hard of hearing, Alice with her art and volunteer work, Barb with her crafts and family, Stacy with her beautiful twins and website work to educate others, Will with his participation in research and writing, Phil with his writing, advocacy, and tips for getting Social Security Disability and the way all of them respond to other people who need support. I know for a fact (because I hear about it) that a post from someone here that provides understanding, offers support in some way or just says that someone is thinking of the person can make someone's day. Also, researchers are amazed at the great response that putting out a call for volunteers produces. There are others here too who are gene positive who are wonderful role models for others and I apologize for not mentioning you, it's just that I know less about your lives. And I am always impressed at the people I meet at conventions with their positive attitude and enjoyment of life.

Can you avoid being sad? I don't know how you can and be involved in the HD community but I also think that's true of life in general. As Kelly said, you can't lose big unless you've loved big and who would consider it a good trade off to avoid pain by avoiding attachment to others. If we didn't know and care about Gordon and Michael through him, we wouldn't have been so sad at Michael's loss. But I'd rather have gotten to know Gordon and count him as a friend than not and I know I speak for everyone here.

I think that there are different types of support venues and not every one is right for everyone at all times.

shar,

i've been on this website about 6 months, i made some similar comments, and offended a couple people i'm sure, but the truth is, in the begining, i was looking for some miracle answer here, i was scared and i wanted to hear that its not as bad as i thought it was. i didnt hear that...

what i heard was the truth, like it or not. and it did scare me, however i've learned a hell of alot here, and now i know what to expect, and can begin to move out of the shocked phase, and move into the what am i going to do about it phase.

its not pretty, but i am beginning to feel a little stronger, i'm getting a grip... i also know that i can come here and ask any questions that i really need to ask, and i can get answers and suggestions, and even sympathy if i need that.

and amazingly, i discovered that maybe someday soon, there will be real help. i hope every day that a medicine will be discovered that will give some relief, and extend life for those suffering from hd.

and i learned that many people on this site, could be in any stage of this illness, and i will respect all those here, and not take anything said here personally.

but yes i felt that way... have you ever read 'the secret"? its that book about being positive, about mind over matter and self healing. i believe in it. i will try and be more positive k?



Edited 1 time(s). Last edit at 09/27/2007 06:22PM by skmf.

Hi Shar,

Some interesting thoughts you have shared in your post. I hate this illness as it has claimed one child and now is trying to claim my other child - but we are tough and will do everything in our power to stop it. I tell my HD husband that by having this illness and losing his job it has allowed him to be home with his children and bond with them, before HD he was leaving home at 7am and getting home at 6 pm and thats all our son was seeing of him. So that is a positive that many men living without HD don't get - time to bond with their children. Mind you he still works 2 days a week at an assisted workplace with other disabled people which is important to keep going to.

I agree with Marsha, I am glad I have met the people who come to the forum and through HD I have met many lovely people. Even a Japanese lady who came over to stay a few days and we bonded immediately and now are in constant touch - our stories are sad but we do spend much of our time laughing together (language learning can be fun).

I also hold onto the hope that a way to stop this illness isn't too far away and that is my dream. A cure would be even better.

People die of many things, even rocket scientists can be killed crossing the road. We don't plan our future to die, we plan it to live and thats what keeps us going. Through the HD experience I have encountered such strength and willingness to help - I hope others have experienced the same.

When a cure is found we can all meet up and just party party party together - our biggest hurdle is finding a place to meet up.

Debbie

Ddebbie,

how bout disneyland, we could rent the place for a day...







Edited 1 time(s). Last edit at 09/27/2007 08:00PM by skmf.

Shar said, "there is so much negativity about how horrible the illness is".

One person's "negativity" is another person's "reality", Shar! People who have lived that "reality" - and try to give others the benefit of their experience are not being "negative" - they're telling it like it is.

Because they care about people associated with HD - and want them to make the most educatated decisions possible.

How can that be anything other than "positive"?



Edited 1 time(s). Last edit at 09/27/2007 08:57PM by JL.

Well said, Alice! I'm glad you came back.

Lest I be misunderstood - I in NO WAY blame people who make the decision to have children before they know of their HD-status.

I just strongly advised (based 59 years of personal experience) that one SHOULD know their status, before making that decision.

I have to respectfully disagree with the comparison of HD with other diseases or accidents, over which one has no control.

One DOES have control over whether one passes the HD on to a child!

As noted by many here, the disease can be halted in one generation in your particular line by not having at-risk children.

Surely, that's worth it!

Wow, Marsha! I couldn't agree more! I consider eveyone's participation on this site as "supportive". Why else would they post, unless the cared a great deal?

skmf said: "what i heard was the truth, like it or not. and it did scare me, however i've learned a hell of alot here, and now i know what to expect, and can begin to move out of the shocked phase, and move into the what am i going to do about it phase."


Couldn't have said it better, S!

I vote for Hawaii, Debbie!

I would be considered one of the people who are a stick in the mud. I constantly battle what to post and not to post and sometimes make the wrong choice. I bet I have deleted 25% of things I write before I put them up. But there are realities to this disease that need to be spoken of. If you want to hear about gifts, miracles, life's journeys, monsters and dragons go to church... read romantic literature... read "I'm OK You're OK". There are dozens... thousands of places to get those messages. The truths about HD are much harder to come by. And this is the place. It has to be that. If you want to apply your faith as your sole reason to have children, that is where you should expect your positive reenforcement to come from. If you you bring the topic to this board however it is unfair to expect that people with life long experiences, that are nothing short of awful, to not express what they know. Their will be others who have experiences that were challenging but survivable. There are also many positive messages that happen here all the time.

I can tell you however that if you think the board is to open and honest now, there are still several aspects to this disease that are seldom discussed in detail. I have heard personally and experienced personally much more than is discussed. But to expect those who have had difficulty, to bottle it up or keep it secret, for the sole purpose of keeping positive messages the dominate feature for those who only want to hear those is unfair. Some are here out of shear desperation, at wits end, and have absolutely no where else to go. And where do you think all this so called "negativity" is based? Do you think it is all just a bunch of cry babies that can't look on the bright side of life? Or do you think it is real... and that they are HD based concerns that happen everyday? What is your suggestion to to the wife who is in danger? Should she not even mention it? And after it is resolved should she never mention it again because it's a downer? Never let anyone use her experience to draw upon because someone wants to hear nice stuff?

Gifts and miracles, dragons and monsters, and fanciful journeys skipping down the yellow brick road really don't help people ultimately. The collection of real life examples of successes and failures and of heartbreaks and joys is what actually gets the job done. If the facts present themselves and are being weighted more in one direction than the other... then that is how it is. This is a bad disease. Bad diseases have bad experiences attached to them. Before you ever begin to manage the disease you have to look at it for what it is...and what it can do.

ok, so thats one vote for Disneyland and one vote for Hawaii. Meanwhile Eric wants to skip down the yellow brick road (you'll do that alone Eric ) Disneyland in Hawaii would be good.

Debbie

PS. JL - 59 years of personal experience?? What were you doing the other 20 years

DEBBIE DEBBIE DEBBIE...

i like the way you think !

The yellow brick road is in Stevens NJ.My roomies dad taught at the Stevens Institute and we visited them, and were amazed by the yellow brick streets.
Dusty

Oh man, Eric! Well said!!!

Keep in mind that I AM a PHD - and I haven't wanted any sugar-coating.
I've seen lots of HD, and I know that no amount of tiptoeing around HD will make it any less harsh - nor will it will help you to deal with it. HD will take it's toll. Quite often it's a horrible toll.

The only way to deal with it, in my humble opinion, is to understand as much of the disease from all aspects (sufferer, caregiver, family member, etc, etc) - and deal with it as best you can.

I by no means advocate negativity. A positive attitude has largely contributed to my survival ("you can knock me down, but you can't KEEP me down!).

Debbie said:

"PS. JL - 59 years of personal experience?? What were you doing the other 20 years?"


You're an evil woman, Debbie!

Here's to you and the broom you rode up on!



Edited 1 time(s). Last edit at 09/29/2007 04:58PM by JL.

lol...you guys are funny

can i ask some questions? well i am going to anyway...lol

Is there a difference in the 'negativity' being discussed for when people talk about things that have happened in there past and try to educate others based on there personal experiences
and
if someone is sharing a really hard time or something really bad that has happened?

and one more question...
Do parents worry more about the impact of HD on there children...than the children do?

now i have no idea if any of that makes sense and noone really needs to answer them...they are just what my head is thinking