michelle,

i dont think anyone finds personal stories negative, not at all.
when someone shoots down someone elses dream, or desire, or point of view, this tends to seem negative.
arguing over a point that everyone got over and forgot about, or would like to forget about, seems negative.
and maybe the glimmers of fatalism one occasionally sees, could be seen as negative.
but hey, this is a democracy,and everyones sorry in the end, and i believe everyone here really deeply cares for each other.

for parents its a quality of life issue. we want so much for our childrens lives to be the best it can be whether they are sick or not. parents are the same around the world. but with hd, we have a million times more worry...



Edited 1 time(s). Last edit at 09/28/2007 09:02PM by skmf.

Shar,
to be honest with you, I have no positive experiences of HD, only negative ones, so my posts tend to be pretty negative about the disease and its effect.
I am sorry if my posts are bringing you down or anyone else down, that is never the intent, I have only sought advice about difficult decisions and situations which I find blamed on the disease (perhaps unfairly) by an at risk woman who I love.
Personally, I tend to find some of the more positive arguments extremely depressing as they speak of a positivity that I cannot hope to see.
I am glad that you and your husband have a history of loving relationship to fall back on and help you through whatever tough times you face. I envy you that history and love, it is not present in my relationships with HD for the time being, and I expect that has a profound effect on how we each look at this disease.
The only way I will be able to comprehend this is should my wife become symptomatic, which I obviously cannot and do not hope for.

As a general point, which might be better expressed to the moderators, I am a member of another forum which allows a special area for rants/complaints/other nasty stuff which is likely to scare other people off.
Might this be a solution?

G

whats goin on G,

i would laugh but i'm sure you arent in a funny mood. but if you read back on this thread, you'll notice there are alot of people coming forward appologizing for bringing people down. you cant all be at fault, so that must mean we are all doing it on this web site.

look G, we are all going thru it in a thousand different homes in a a million different ways in a hundred different countries. hang in there if you can.
pray if you believe in god, chant if you believe in enlightenment, scream if you cant take it, but dont give up. two years G, three years, we are so close, so close to a medical discovery... have faith G

skmf,
it is a nice thought, and I hope that there will soon be something which retards the start and progress of the disease, but without some method to regrow the previous genetic and cellular structure, a cure will be difficult.
Afraid I am an agnostic engineer, and I really just believe in science and the forces of the market, I don't believe that people are good, I believe that they take the path of least resistance and would rather not confront reality because it scares them. Not knowing everything I can scares me more.
Here's a thought though which I hope we can all agree on whether we are positive, negative or swing both ways (sorry, couldn't resist).
Until paying for the long-term health care of all people in this country becomes the responsibility of all people in this country, the money to really fix or prevent HD and other similar diseases will not appear and the insurance companies will continue to make mint while people suffer.
G

Thank you to everyone who replied for your views. This is a tremendously great and useful website and I would not want to change it. Maybe I am in denial of some attributes of the disease or I have always taken the stance to look at the positive in every situation I am faced with. I guess that gets me through it a little better.

I think it is good people can come here and ask for recommendations of medications, ideas for those with HD. I think it is also useful for those who are dealing with more than they can handle due to the disease (I have been there before) and they need to vent, question, talk or whatever to help them. That is what we are all here for. To help each other. It seems if one can't find the right thing to say or have an answer someone does and that is what is needed. Before this site I really didn't know where to go for insight into many aspects of the disease, how to help treat it, etc. so I, as all of you, am very thankful for this site and for those who work hard to keep it going.

I also can't speak for anyone other than myself as to what each one is going through. I feel so bad for those who have children affected with HD. My heart and prayers go out to you. No one, much less children,
should ever have this illness.

I have gotten to know many through their posts and although I haven't agreed with all ideas - as not all agree with mine - and that is life -
I feel very grateful to be part of this site and care for all of you here.

Thank you and I vote on Disney when the cures comes!!!

hey G,

what about the molecule that stanford discovered that mimics bdnf or what ever it is, supposedly it crosses the brain blood barrier. and they've found this noggin thing that will let them change the gene, that could work like a virus and change them all.
or what about the nasal discovery of that fungus or whatever, that can be inhaled? i dont know what i"m talking about, but someone else could explain it better.
it's inevitable, we will eventually figure this out. so stop your whining G... i want what you want, something that can give us more time, something that can treat the symptoms, hold back the damage, and give us more time, while they find the difinitive cure.
but yeah, i totally agree about health care, we need it and we need to think about who is willing to give it to us. as far as money goes, from what i've read here, hd is doing pretty well from all its worldwide coffers. i think what we need, is people in power who will open the floodgates to new medical advancements, and guess what? that could happen soon. and if it does, i think we could start seeing some real progress soon.

hey shar,

when we get our breakthrough, we will look into the best price we could get to throw a party, that means airfare, hotels, and party place...

THEN WE CAN FIGHT OVER WHERE WE GO..... LOL

KEEP HOPE ALIVE !!!

As Tony?s caregiver, I harbor many emotions in my heart, both positive and negative. There is the tremendous sadness that the brilliant engineer is gone and today struggles with more simple mathematical equations. One of his clients from 15 years ago called for him at the office one day recently. As usual, I intercepted the call and explained to the man that
Tony had HD. His response was, ?Oh, God, please don?t tell me that that brilliant mind is gone.? And he and I were sad together on the phone for a while. There is always mourning for what might have been.

There is fear; fear of failure on my part to provide the necessary care and cause his condition to be more difficult for him and fear that I will make Tony feel less of a person because of his disease. There is fear of an accident or fear that he will choke and I will be unable to assist him during his crisis. He relies on me and I feel the obligation to be a perfect provider. And there is always the fear of an approaching evil.

There is faintheartedness, the inablility to make a decision and go forward from that point with it.

And there are wrath and longing, see-sawing back and forth, when I read that a promising research does not prove to the the answer that we all seek for a treatment or cure for our families.

There is anger. Oh, the anger! It can spring forth so quickly and fiercely that I am shocked by it. I can express the anger so aggressively that Tony wilts. And then there is remorse and shame that I have hurt him because of my own fatigue or lack of understanding.

There is jealousy at odd little times when a neighbor or acquaintance flits through life easily with no concern of ominous events that might threaten him. And there is always frustration that I am living two lives, both mine and Tony?s.

There is no wonder that we all feel negative at times, but I learned when I was a child that happiness or unhappiness, for that matter, is a choice that we each make for ourselves. So, I try to remember that there are other, important, emotions in my heart.

There is admiration that Tony works so hard to be complete and competent. When he can no longer do a thing in the old way, he invents a new way. And I have pride for him and his undieing spirit.

His courage inspires me to act in a more couragous way myself. It is a goal I aspire to.

And I have gratitude that one son tested negative and his at risk brother show no sign that the dragon is on his doorstep.

There is joy and laughter. Usually in little ways, Tony will strut out his dry sense of humor to make himself and me laugh. Today, he was explaining why he needed a haircut as we drove to the shop. ?A 65+ year old guy with Huntington?s disease has a hard time keeping his balance in the shower when his bangs get in his eyes.? He laughed. His own amusment at his little joke became contagious and soon we were both laughing at the visual image he had painted.

And there is love. Always love. There is love when he becomes all arms and elbows and almost knocks me down getting to a door before me so that he can open it for me. There is love when he cleans the kitchen, forget that he broke a jar of olives packed in olive oil that took a day to clean up. He did the cleaning, with love.

And there was incrediable love, all those years ago when his symptoms first appeared, when he asked me for a divorce to ?cut the boys and you loose? he explained later. That is real love to face the dragon alone to spare the ones you love.

We have a different kind of love that those two kids had 45 years ago. I feel fortunate because our love has grown since we were kids in our hometown. Sometimes when I settle back into a comfortable chair and close my eyes, I can feel the warm summer sun on my skin as I did when I was a child in Crossett. I can feel the gritty dust on my fingertips and smell the sweet Cape Jasmines. Life was simple then and a complete delight was a green tomato pulled fresh from the vine, sliced, tumbled in corn meal and fried in hot oil, or a ripe one rinsed with the garden hose and eaten, still warm from the sun, on the backdoor steps. I can hear the squeals of delight from the children on the dusty street and I can feel the wind in my hair as I perform the latest daredevil feat that I have learned on my bicycle, knowing that it was certainly the biggest challenge of my life. I still carry scars from some of those escapades, but strangely, I cannot feel the pain that caused the scars. It was a time when my worst fear was the multiplication tables and my worst enemy was the latest math teacher.
Life is a series of choices. It is a journey in which we must decide which path to take, which fork in the road is best for us. One path may lead us into pleasant fields of flowers while the other may be filled with pitfalls and hazards that threaten and frighten us. We may find bridges washed away by high waters or we may find beautiful overhanging trees shading and cooling our path. If we take the less traveled path, we may find it to be lonely and desolate or we may find it to be peaceful and serene. What we find along the path depends upon what we look for. We will choose the path that promises the best chances for finding the treasure that we seek.
Which is the best road? Which will offer the most treasures to be found along the way? I wonder, as the poet, Robert Frost, did, about the paths not taken. My life would have been a different life if I had taken another path, but I have no regrets. There could be no greater treasures on any other path than the ones I found on my chosen one. The greatest and most rewarding treasure of all was the tall, slim young man with the broad smile who took my hand to walk the path with me.



Edited 1 time(s). Last edit at 10/06/2007 02:58PM by Margaret.

so beautiful margaret,

i am happy for all the joy, you have had with this man.

we are lucky to be the ones to share this journey with the ones we love. i would not have it any other way. i'm in it for the 'good, the bad, and the ugly'.

and when the 'great hope comes', i will be rewarded.



Edited 1 time(s). Last edit at 09/29/2007 04:01PM by skmf.

What an incredibly beautiful story, Margaret!

How wonderful that you shared such great times together!

Even as a Pacific Northwestener, I have a deep reverence for a fried green tomato, properly done! You got me salivating!

so true JL !

G, there are mouse studies which show that once the HD gene is turned off, there is substantial recovery, even well into the disease progression.

Also, I recently covered Steven Goldman's research which used BDNF and a polypeptide to encourage the growth of new medium spiny neurons from the brain's own reservoir of stem cells in the brain. They migrate over to the damaged part of the brain and become functional. He did this in the HD mice but people with HD also have a reservoir of stem cells. Right now the technique involves gene therapy but a pharmacological approach could be developed as an alternative.

We are very close to treatments. High dose creatine is about to go into Phase III clinical trials. The Phase II results look fabulous and I expect that it will be shown to be a treatment soon. I also have high hopes for ACR16 a dopamine stabilizer which reduced chorea and improved cognition in Phase II trials. It is also about to go into Phase III clinical trials. Both have orphan drug, fast track status with the FDA.

The money is available for HD research and it's being spent, about $100 million a year from all sources. There is a strategic plan in effect, developed by Robert Pacifici of CHDI. It includes parallel lines of investigation and multiple compounds in the pipeline. High Q/CHDI is anticipating clinical trials of some of their compounds soon and just hired a director of clinical trials.

We have also had some breakthroughs in basic research in the last year, starting with Hayden's research on caspase 6 (caspase 6 resistant HD mice have develop the disease) last summer and Ray Truant's molecular zip code research just published. The discovery or development of a caspase 6 inhibitor and a kinase inhibitor is being funded and hopefully we'll hear some good news soon.

I really think things are moving as fast as they can right now. I don't believe that was always the case but it is now.

Margaret - what a beautiful love story and a love that many will never know. It could have gone the other way as well - you may have been the one sick and I am sure Tony would have been there for you. He is extremely fortunate for you although it is not easy for you but what memories you must have!!

skmf - when we book the party remember nothing is too good or not enough!

Marsha - thank you for the update on your knowledge of HD trials. We are very thankful to have you on this site and your knowledge. I am anxous to meet you at the party as well!

Maggie,

I am so glad you held Tony's hand and took the treasured path, it has been far from easy but your love has endured and helped you to remember the young man you married with the brilliant mind and the broad smile.

Much love
Amanda
x

Thanks, everyone. But before you see me as a complete Pollyanna without the ability to understand my own circumstances, let me assure you that I am not. My life is run by logic for the most part. I know where I have been and I know where I am going. But here in the present, I choose to be as positive as possible; it is my way of survival, and most of all, I am a survivor.

I have known a mother in law who lived a life of depression and terror. A woman who had violent movements and spent her life restrained, afraid to be alone and too paranoid to be with anyone. The disease ruined her life and she ruined the lives of everyone around her.

I have dealt with nursing homes and insurance companies. I have won and I have lost, but I survived. I have been near panic trying to plan a way to handle obligations financially. But I survived.

I have lived with a husband who screamed paranoid screams at me for months. I have kept car keys in my pocket for an escape, if need be. And when I reached out in sympathy I had my hand broken in three places. I thought that I would have to leave permanently, but help in the form of a new neurologist arrived, and I survived.

I was broken hearted when my young brother in law killed himself when his promising life was just beginning. He could not overcome the Huntington?s prison that he grew up in and was sure that he had the disease. I will never be able to erase the image of his hanging himself in his bathroom. But I will survive.

Tony and his brother both make life easier for their wives by their positive attitude in the face of their trials. They, in their own way, are survivors, too. Maggie



Edited 1 time(s). Last edit at 09/30/2007 04:06PM by Margaret.

Maggie,

I always love reading your posts. Thank you.

hmmm...changed my mind, delete please



Edited 2 time(s). Last edit at 10/01/2007 03:24AM by Barb.

Thank you.

Thank you maggie...i posted something that i was really making fun of myself, but when i re read, realized it could be taken differently, and i really didnt want that either. You are a good writer maggie, i have always admired your way of telling stories.



Edited 1 time(s). Last edit at 10/01/2007 03:53AM by Barb.

I probably shouldn?t bore everyone with my silly little ramblings. You guys are lucky, I guess, that I am so busy at work right now. Maggie