I wish that this web sight would stop publishing such downer articles like "Living in the Bull's Eye (At Risk..). What a crock of Bull! People who are at risk (like myself) do not benefit from such negetivity. Don Cleaveland states that HD is the "worst possible nightmare for a human to contend with." Give me a break!!! Did you ever hear the expression that "life's a bitch, and then you die"? It is true. Life is difficult for all of us - we all have some cross to bear. And we all die in the end, often at a young age. Most of the time we have no control of how we die. But life is also precious and wonderful. We only have one short life on this earth, and it is up to us to make the best of it.
The author also states that thoughts of HD are "taunting every waking moment" of his life. Don may never get HD or maybe he will be and old man when he starts showing symptoms. Ruining one's life with worry over something we have no control of is the real nightmare. Sound like some of us could benefit from serious therapy ----and GET A LIFE!!

Dear Friends,

I agree that life is precious and every moment should be cherished...I do this everyday of my life with no regrets. My life is full of life, love and exceptional happiness. I worship the people in my life and I treasure their love. The problem is many wonderful people affected by HD either by at risk, positive with HD, family or friend with HD deal with their own nightmares. Many are affected so differently and so profoundly that so many of us could never imagine the pain they are going through or the suffering they feel. My compassion is for all affected with HD because we all deal with these issues differently, our chemistry is different in all of our bodies and brains. Some of us like myself choose to "smile all OVER IT" regardless of the pain I feel inside. Losing a grandparent, mother and siblings to HD in the devestating end of this horrible disease is not pretty for anyone. None of us have a right to judge how any one should feel or react to these terrible tribulations. I've witnessed an incredible women losing her only son to this horrific disease and do not know how I would handle it if it were my child. Watching your child become crippled mentally and physically within just a short span of a few years is not a lifetime of negativity..just reality. Watching your mother or grandmother choking to death and struggling for every breath they take..is not negativity..just reality. Watching productive grown men lose their mentality and struggling to keep sane ...is not negativity..just reality. Every person I witness dealing with the catastrophic affects of HD do not wish to live this way..It's just the hand that has been dealt to them. Actually, I've met so much of the HD community and they have embraced me with such kindness and love...and positivity that I commend them with my strength and understanding of this disease. We are all in this together and compassion from one to another is so needed. We need each other so much and we understand truly what each of us is going through. They are the sunshine that brightens my day and warms my heart ever so much. I love them all and salute each and every one of us. I met my dearest and closest friend through HD and I'm grateful for her every day because if it wasn't for her strength and love for her HD affected family..we wouldn't have become soulmates. We understand each other and will be the best of friends for a lifetime. So let's just hold each other, love each other, and strengthen those around us. Thanks Jules and all of the HD community..Smoochie Woochies, hugs and all the "SUNSHINE" in the world! Warmth and love to ya'll!

Dear Diane,

Ron Cleveland's viewpoint is but one of many. Being at-risk for HD is more difficult for some people than for others and at HDAC we try to give everyone connected to the disease a place to express their feelings and fears in a positive non-judgmental atmosphere.

I am the spouse of an at-risk person and the mother of an at-risk child. Some people thought I shouldn't worry about it and just "get a life." Instead I started this website with two friends and and in our first year we have helped 60,000 people. We have recently been recognized by CNN as a top HD information resource, and we have been invited to Stanford University to consult and advise on their HD research web project. Yours is our first complaint.

My at-risk husband gave his first HD presentation this morning that brought tears to people's eyes and support to our cause. Behind the tears was the recognition that with HD comes suffering, but that even throughout the suffering there is hope and joy. We have published several articles about living positively with HD from people with the illness but have not received any submissions from people who want to talk about living positively at-risk. If you have found what you feel are more positive ways to live at-risk for HD and spread HD awareness then you are welcome to share them here. However, we do ask you to avoid personal attacks on others in the HD community

Sincerely,
Cristy Wolf
Co-Administrator
Huntington's Disease Advocacy Center

I think Ron's story is right on the money.. and I didn't find it depressing at all... just honest and strong. My husband has HD and I have 2 boys at risk... and the ONLY good thing or positive thing to come out of this are the friends I have made. I am closer to them than I ever thought I would or could be to ANYONE. I do not feel this close to my own blood family as they just DON'T KNOW what it's like... I have GREAT hope for a solid treatment or a CURE for my children. But I also have dispair.. Sometimes I cannot breathe with sorrow I feel... I watch my kids and know that they have NOT grown up in a "normal" household.. The father I THOUGHT they would have... full of humor, jokes, and laughter has not been there for many years.. HD robbed him of that... Robbed my children of the father they COULD have had..NOT publish depressing articles???... it IS DAMN depressing...and I'm glad to see someone talk about it... too often we feel we have to push those feelings aside and put on a happy face... I cannot always do that and feel guilty when I cannot. So to have permission to express myself freely about my sorrow AND ALSO about the joy in my life is a relief. AND to share it with my HD family whom I know understands why I'm happy when I am... and why i'm not happy when I'm not is conforting. I'd like to read more articles about people's lives and how they are dealing with this disease... either at risk.. positive or caregivers... happy or depressing... I can find myself in almost each story.

Now I understand the purpose of publishing this article. Thanks for the feedback!

Hi Diane, You sound like an amazingly strong young lady,and I am sorry to hear that you are faced with dealing with this disease in your life. I wish I had the strength you claim,years ago I did have.I am not what could be called an old man yet,and I have had a very enjoyable life that I continue to enjoy each and every day. Were I an only child, I doubt that the thoughts of this disease would take the toll on me that it has recently, But I come from a large family of 6 Boys and 4 Girls,I am the youngest of the boys and the last Symptom Free Male in my Family,So far ,in addition to My Father,Aunt,and 1 uncle,I have lost 1 Brother,have 3 brothers,all Late stage,1 Brother who has just become Symptomatic,and 1 Sister late Stage in a Nursing Home,and oct. of 2000 I lost a Niece.The large part of my waking day is spent in my mind trying to remember my family as it was before this disease,and trying to deal in my own way with the tremondous sadness in knowing how My Brothers and Sister are suffering.Get a life you say,I have a wonderful life with my wife of 27 years, Get therapy you say,this group is my Therapy,you see, they stand in my Shoes each of them to some extent.And hopefully you will come to regard this groug the same way.May your Shield and Strength protect you, and may your life not be affected by this disease,but should you find yourself alone and afraid and in need of a shoulder,We are here.Peace to you Diane -----------Ron Cleveland

I kinda go along with Diane. My dad had the disease and even though his personality changed a bit, he still seemed to be my dad, just going through something along the path of life. Nobody dispaired over it much, just dealt with it. Same with my brother, who is suffering pretty badly at age 50. He gets really angry and he's actually in a bad way, and I feel sorry for him and never blame him for his reactions. But he still seems like my brother and nobody much tears their hair out over it. Now I come to myself. I have HD, too, light so far. I just feel like going on with what I like to do. I want there to be a treatment and cure. I take antidepressants. But there are so many other diseases which seem horrible. What about cancer? What about Alzheimer's? In our family HD just seemed the family sickness, accepted as well as it could be. I read somewhere that this was often the case with HD people in Venezuela -- so common it didn't seem a big deal. I know it is a big deal! But it's just part of our lives.

First of all I decided not to read the others post so I if I use their words well it happens. First Diane to tell us to get a life is not fair. As for some of us HD is a life that we had no hand in. But we did the best we could in this situation. No one is saying read my article and you will know what HD is like. You chose to read it, and this is how they felt. It is their words and their life that they have to live with. Just like being at risk and watching your parent going through the disease.

It is up to you to make the best of it or cry over spilt milk. We all handle things differently and it your decision to make your life happy. We all get sad or bad news, we all get sickness in our life and in our families. We learn to cope make the best of it and go on. That is life. Now may be I am being to hard on you but think about it.... You know you can also write your own story and I bet Cristy, Lynn and Steve will post it as long as it is done tastfully.

I know my two sons are at risk and they watched their father progress through this disease and my oldest decided he would do something about it and started his own club in Yahoo. He is 22 now and it has 197 members in it. He has chats on Monday nights. Some he is there for and some I am there for as we feel one of the founders should be there. We also have everyone join. That means we envite JHD, pHDs, caregivers, family and friennds. Because they all have a way of teching us about HD. No one person is an expert unless they are At Risk and or they have JHD/HD. It is from these people that we learn.

I just went and read the responces to your post. I feel we all have a right to express how we feel but please just do it as to not hurt anyone in paticular. Most of these people that have wrote an artical has done it from their hearts. And I thank each one for their time and effort put into them.

Susie

I have been having physical symptoms for about two months. I don't dare be tested right now because of my employment situation. (Yes, been to the doctor, she can find no other explanation.) Don't you think I know that the constant terror I am experiencing right now is no way to spend what might be my last few good years? Even if I agreed with your opinion on how I SHOULD feel, I can't change it. There is no one else in the world to take care of me but me, and like most most of us I know exactly what this disease will do to me. I think I have a right to be afraid, whether it is logical or not. Yes, we all are going to die of something, but I would get down on my knees and give thanks if I found out I had terminal cancer instead of HD. And yes, there will always be someone out there worse off than me, but that does not invalidate my own pain.

This is the first time i entered a message area or chat romm or whatever name...and clicked on to yours. i am sitting here crying...your cruel cold message to someones pain leaves me confused. your inability to empathiz e with someones feeling other than your own leaves me wondering just how shallow the at risk has left you. my daughter has hd. my son is at risk. i have seen what the at risk status has done to them...my daughter drank drano twice and tried to sit in the snow to freeze to death. i cannot imagine what this pain is like.. i only know what a mother lfeels like. then i read a get over it get a life message aand what i am thinking now cannot be put in print

MY DEEPEST AND MOST SINCERE PRAYERS ARE WITH YOU ALL...GOD BE WITH YOU ALWAYS...TILL ETERNITY

Diane you out of all of us need to "get real" and get a life!!

As Diane posted earlier, after personally chatting with Ron, she has a better understanding of what Ron was conveying in his very personal article and why he wrote it. It's easy for all of us to react strongly to such articles and to react strongly to such posts.

But in the final analysis we learn from each other's opinions and experiences. We can then choose to either help support each other or we can flame each other. Hopefully we will put our flame-throwers down. <g>

Although I know that Diane's "tough-love" post missed the mark in respect to Ron it certainly is an arguably valid position. In fact it's a position my wife has taken having tested positive for HD. But that doesn't totally eliminate the periods of depression, anger and frustration. But she DOES insist on having a life!

I am slow at catching up on this site. I finally had some time to do so and wanted to respond to this post.

First I want to say that I feel Ron's letter was well written and captured almost 99% of what I experienced when I was at risk for HD.

I like Diane tried to look at the positives in this hence my other nickname UpWithHd. Still the humanness inside of me overruled at times and I fought the battle of my mind and will to not think on it all the time.

Letters like Ron's would have told me (while I was at risk) that I am normal after all and that my emotions aren't so out there. It would not have been a downer in my case but a relief. To know that others feel the way I do (I did) would have helped immensely.

I was fortunate to meet those who created this site in person (except Steve I think) and Miss Sunshine who posted here. In fact I met Miss Sunshine in an HD chat and she helped me make it through testing.

She is a totally positive person but she did not let that keep her from allowing me to ask hard questions. She also didn't tell me to not worry about it. She let me be human and real. Her own outlook was just astonishing to me. It gave me hope.

The saying goes "as iron sharpens iron". Sometimes that process comes through the many different experiences that we can all share. That is what is so great.

Keep sharing Diane but just remember that some of the life that we have needed to get has come from the friendships and sharing honestly that has gone on here.

We need each other. All of us.

And to my Sunshine across the map........I love and miss you friend. I thank God for you being there.

Jules

DITTO JULES! MY HUG REACHES ACROSS THE OCEAN AND AROUND YOUR HEART...HD CAN BE SUCH A BURDEN ON THE HEART BUT SHARING WITH OTHERS WHO UNDERSTAND LESSENS THAT BURDEN AND BRIGHTENS ALL OF OUR LIVES...THANK YOU GOD FOR ALL YOU PROVIDE AND THANK YOU FOR THIS FORMAT TO SHARE OUR VIEWS, HEARTACHES, AND LIFTING EMOTIONS AT TIMES...THANK YOU FOR GIVING US ALL THE STRENGTH TO LIVE THROUGH THIS ALWAYS TERRIFYING DISEASE BUT THE ENERGY TO LOVE ONE ANOTHER AND SUPPORT EACH OTHER SO GRACEFULLY. LOVE TO ALL AND SMOOCHIE WOOCHIES TOO...SUNSHINE CINDY..JULES(JESUS AND I ARE WITH YOU AND YOUR FAMILY ALWAYS...HE IS LEADING THE WAY AND WILL DIRECT YOU ALWAYS..HE WILL NEVER DISAPPOINT YOU)