Hi all, today in my therapy session the dr thought I was much improved from my deeper depression which I'd gone through last year. Things have gotten more manageable in my life as far as my husband, mom, and other things that were worrying me. But then I started to cry because a thought came to me about HD, and I told the dr that, "I know I'm able to improve to a certain extent, but then the HD will take over and I'll get worse." She told me that I should get together some stories and thoughts about the disease which would help her know it beyond the textbook descriptions. I'm trying to figure out what I want to convey to her about the fear that is in me, and the feeling that I'm not quite the person I was. It is so hard to put into words. I'm wondering if any of you, whether pHD or caregiver, knows how to talk about the symptoms which concern the personality change or other changes which go on that make it frightening to have HD? Thanks for any help.

Kelly B just posted an article about her dread and fears about the progression of HD in herself and in others.

It's on the home page of [www.hdac.org]

Steve

Dear Alice and Steve : The article by Kelly B. is very moving . It touched my heart and mind . I hope Kelly knows that her ability to put her feelings into words is a gift she has given to all of us . Alice ; I think I would photocopy that article and maybe 1 or 2 others for your DX. But I think maybe you should consider writing down just a few sentences each day for a few weeks , about your thoughts and feelings for that particular day . Those thoughts will add up , and give you and the DX. a picture of you . I find the same as you , Alice , it is hard to put into words the thoughts roaming around my mind . My mind races ; if it was not for my Zoloft , My anxiety level would be off the charts ! Tell her you want to be the same nice , intelligent, happy, confident , motivated , zealous , good person, great neighbor , helpful friend , energetic worker .... that you have been ; and want to be ; and afraid you will lose that person to HD . And you donot want that person to go , but you have no ability to stop the changes that might happen . You want the person you worked so hard to become ; to never go away . But that this disease marches on . All my best. db

Steve and db, good suggestions. I also like Kelly B.'s articles and I'll print out a couple. That's a good idea. db, I feel that, too -- you put it into words very well. Last night I did write a page of how I was feeling and the symptoms I notice that others probably don't. Do any of you think about dying before you get too bad? Not exactly thoughts of suicide, but wondering if it wouldnt' be better to go sooner than later?

I think many people think , that if I am going to die , may it be speedy and quick . But many people do have years of bad health before they die . The trick is enjoying life to the best of your abilities even if your sick . Not always easy to do ; some days would be easier than others . I personaly would rather be alive with diminished health , than dead . I have seen people with terriable health live on for years and they were glad for that life . Of course being healthy and living , now that would be ideal . db

Thanks for writing db. I feel like I'm unimportant here -- no one much responds, even when I feel bad. Oh well, probably my sensitivity again. Never mind, I'll get better.

Oh Alice, sweetie, you are VERY important here. Don't forget that sometimes people don't know what to say in response to a post, but they do think about you and say prayers that you'll feel better.

I know I've been thinking ever since you've posted about what to reply. I'm slow about some things. The thing is that you've hit on some real areas for concern. Sometimes with friends, you can simply reassure them, you can say, Yes I think you'll meet the right man, no I don't think you're going to get fired and so forth. But with HD, we can't give simple assurances. We can't tell our friends who are testing that they will test negative because they might test positive. And we can't reassure our friends with the gene that HD won't progress because we don't know when the cure will be available and so it certainly might.

Without minimizing your concerns, I do believe that they are shared by all of us, at risk or not. We've all progressed on our journeys, we've worked hard to be the people we are and we look at old age -- or HD -- and we worry about being less than who we are now. I think we have to trust that we have created something lasting with our lives, that the people we love know how much we love them, that the world is just a little bit better than it would have been if we hadn't been here.

You ARE very important, Alice. Nearly 2000 people visit this forum every single day. Obviously most don't post. Some are shy, some think they don't have anything to add and some are very nervous about signing up to be posters because HD is very much in the closet at this point in their lives.

But they are here, they read the posts. I can guarantee you that hundreds of people around the world read what you post and say to themselves, Alice has HD but she's living positively, she's not afraid to confront this disease head on in search of the best quality of life possible, she's not afraid to see a therapist. And they are inspired by you.



Edited 1 time(s). Last edit at 01/19/2007 10:43PM by Marsha.

Alice, i'm so sorry. Marsha said what i didnt know how to say. Your question was so complex that i didnt know how to answer, and i still dont know how, because you see, if you ask how hd has effected me emotionally, i could not answer that in a nice little answer, because i have written hundrerds of posts here, and if you were to put them all together, it would just begin to tell the story, do you see? Its just too hard to answer, but know that everyone here cares, i just was at a loss for words.....smile

Hi Alice
I have such a hard time explaining my feelings that I wouldn't be able to help you. I just wanted to say that I wouldn't want to commit suicide but I certainly would want to die early rather than live in misery with HD. I don't have preventive tests for cancer because I think HD can be worse than death.
In my family, my grandfather and mother died of HD. They both lost their dignity and that is what I dread. They stayed kind.

Hi Alice,

I may not respond too often but I always read every post, yours too. Even when I've been away I have a lot of catching up to do.

Barb and Marsha are right. Sometimes you read a post but it can be so complex that you don't know how to answer. And ( I'm being very honest right now) I don't have that much experience with HD, so with difficult subjects that go deep, I sort of rely on our 'experts' to deal with that. I realize now, all of a sudden, that it is a very selfish thing to do.

So there you go, you see how important you are? By just venting your feelings you taught me something. Don't stop doing that Alice. We all learn from each other.

Thank you all. I guess I was asking a complex question because I didn't know how to describe it myself and didn't think that it would be just as hard for others to write about!

Marsha, I know I'm guilty of not responding many times, yet every post means a lot to me and I feel for everyone's troubles and happinesses, so I will remember that when I post, too, that people are reading and caring about me, thanks for showing me that.

Barb, I know I do like to read your posts, since we are both of a "certain age" and dealing with HD.

BM, I feel that dread, too, almost daily. Luckily I do pretty well most of the day. I just wish the sadness would go away.

Elizabeth, thank you for writing and making me feel special. I cried as I "vented my feelings" and then was scared to come to the forum this morning, but you all helped me get over it.

Alice I am glad you are comming up out of that depression. Maybe you will post more on the forum!? This place has become an important part of my life, and I always look forward to reading your posts. I try not to post too often because I read it afterward and think, "Why did I post that?!"And there are so many other people who have more knowledgable answers that I feel dumb to respond sometimes. I want to post about the latest "Heather saga" but I feel like I am a broken record. So please don't feel like no one cares. We all do. We just wait for someone to put the right words down.

Love, marshap

Alice - I read your post and was not sure how to reply. I am not really sure how to explain how I feel. Asking those questions now with all that has been going on the last month and all the sadness - there is a part of me that wishes that I could just go now so I do not have to feel this kind of sadness any more.

But then I remember my mom and how much she fought her battle. She was so brave for so long. She was known for her purple walker and pink helmet, she loved the NJ Devils and the Yankees but most of all she loved her grandkids. Everyone knew of her grand kids. If I can be half as brave as her then I will live life to the fullest as she would want me to do.

It scares me to know how my life will continue. I try and be as positive as I can and things are much more positive now a days. I live for my family and my friends and to fight for a cure.

Sorry - this is probably rambling - but I wanted to answer you. I am thrilled that you posted and are feeling better.

Stacy-NJ

Hi, Alice. I don't respond to a lot of posts either, but I read just about every one of them. Please don't feel like you are alone because you aren't and even if it feels that way, there are people in cyberspace who care, remember that. I've been thinking about your question a lot since you posted it and it is a hard one. I think about my mother lying in her bed most of the day in the NH unable to find anything that keeps her attention long enough to enjoy. Even sleeping is something that is difficult due to her chorea - she is in constant motion even while asleep. I guess what I would tell people about HD is that it is scary and not to shut people out because you're going to need them.

I hope you are feeling better and please don't feel like you are alone in this.

Linda

Alice - My x husband & I divorced over 35 years ago. He stopped contact with our 2 children 20 years ago. Our daughter beagn having health problems 7 yeras ago and our son went on a crusade to find their father to see if there was any medical history we should know about. Well it was the typical Good News - Bad news. He found him in a long term care facility in the end stages of HD.
The three of us traveled about 3000 miles each to meet and visit him with no real knowledge of what HD was. He could not walk or say more than 1 word. He knew who we were and cried... and said "sorry". It was heart wrenching to see him. When we were married he played baseball, basketball, hunted, fished, climbed mountains, went camping... Both children have tested CAG 43 and 47 a glance of what the future will be. Although he could not speak he spent most of our visit looking at pictures we had brought,with a child-like smile. He tried to speak but could not. He became sad that the words would not come out. When we left the room he continued turning the pages in the photo album crying. He passed away this past December.

Edina

Edina, Thanks for sharing. I just met you in the chat room tonight.

Edna,

That's a story that distresses one's soul. We received the news of my wife's father's death due to HD. Her parents divorced when she was very young and he disappeared. I never met the fellow and she didn't get a chance to say goodbye.

I think your experience was ultimately a blessing - although it was very painful.

Steve