Hi! I am a forty yo at risk - I've read the amazing story on the Lighthouse about Scott and turning his HD symptoms around. My Dr. sister - who is also at risk rolled her eyes when I showed her this article. She said the brain would not grow and show up on a scan. I am leary about listening to traditional medical advice and will continue to work out and run especially if it keeps the HD monster away or prolong onset! Does anyone (Will) know where and how Scott is doing today?

De,

I'm sorry to tell you that Scott died maybe a year ago when he choked on a roll while home alone. I don't know if that was caused by HD. He had not been able to exercise as much as he wanted due to a series of injuries and accidents. I think that brought back some symptoms.

Scott's story should still inspire people. He did beat back the disease by any measure. There is research that shows that BDNF promotes brain cell growth (neurogenesis). Anything that does that should benefit HD if it's in the part of the brain that's affected.

Sorry to have to tell you about Scott. He inspired me.

Will

Will,
I am so sorry to hear about Scott's passing. His story is very inspirational as is yours! Thank you for all you've done for HD and continued support for us all!
De

Hi De
We can read any number of claims about folks Beating HD,there are so many variables among Phd's it is hard to verifiy any claims that you will see on these groups. granted, Scott's Story gave desperate Phd's something to cling to as well as Will's. However one fact remains, Scott was NEVER willing or able to back his claims with Medically verified Facts.And one fact is irrefutable, NO ONE, I repeat NO ONE has ever Beaten HD, Straws are Thrown on the dark waters of HD on a daily basis and desperate People Dealing with HD will willingly Grasp these Straws, Do they help? Are they mostly False Hope? Is false Hope Good Enough? Who Knows.Most folks Cringe when Presented with Factual Evidence that NONE have ever beaten this Horrible disease.

My opinion Only
Ron C.

The Lighthouse under current management has never claimed that Scott or anyone else has beaten HD. Going by the mouse models of the disease, we report on what has delayed onset, slowed progression, reduced symptoms, and prolonged life so those at risk and those with the gene can decide for themselves if they want to try one of more of the strategies which are available.

We also follow clinical trials. Creatine continues to look promising following a Phase II trial, while ethyl-EPA failed the last two Phase III clinical trials.

The research on the reduction in BDNF as a major HD pathology is solid. BDNF has been shown to promote neurogenesis in the HD mice. Exercise raises BDNF and so do SSRI antidepressants and have been shown to help the HD mice. Exercise has known health benefits so it would seem to me to be a can't lose strategy.

There are dozens of potential treatments in the pipeline. It makes sense to stay as healthy as possible to achieve the best benefit from major treatments when they become available.

Well, Ron,
Hd lasts a long time and is a thoroughly rotten disease. But you might as well have as good a time as possible. The final insult on my mother's path through HD was having her brain fried to alleivate depression. She had 7 years in a nursing home after that.[www.guelph.ca]

I have done aquatics for movement disorders in this pool in my town which opened with a therapy pool the year I had a HD probable. Oringally I was looking for a land exercise class which would allow me to get through the winters with my asthma. The aquatics class was new, and better than land becuase you don't hurtt yourself falling in warm water. I personally consider the aquatics as a blessing, and I don't get too many of those even though I'm a nice person. Twice a wekk I go that pool, on wed for classes which involve do things like standing one leg, heel toe walking which I can no longer do on land, but my brain is still working on these patterns. My physio did a balance test the day after aquatis and was utterely amazsed at how much better I was. The benefit lasts 3 days...OnFridays I take my twin grandaughters with my and their mother in the therapy pool and enjoy being a grandmother safely, because I cannot pick them up on land, and at 3 they are both swimming on purpose and with such joy.
as the romans said Carpe diem.
Dusty

Good answer Marsha, too tame for me though. When someone has a totally negative answer to any question it lacks sensitivity to those who need support. Duh that HD has not been cured. Who is not aware of that? I am sorry Ron that you are in a black pit today... hope you feel better. But I see no reason at all to be THAT bleak. It is totally preposterous to have that attitude given all the research. There are completely reasonable hopes that what people are doing for themselves is slowing progression,softening symptoms, and buying time for a day when more and more treatments are available. The only cringing I do is hearing a completely forlorned person recruiting people to join in needless mental anguish. Do you think you did anyone a service with that post? Why on earth do you care if people ride a bike...it causing you that much pain? That is just going on the premise that you are right. I think you are wrong on many levels however.

Just let's pretend you are right. Was Scott happier riding his bike? Or was he better to sit and feel like you? My son is going to be 17 and is at risk. He wants to take creatine. Assuming he does take it but it does nothing... was he harmed? Maybe he should sit and contemplate his fate... just like you spelled out... cash in his chips now. Is that what you want? I mean who wants a hopeful 17 yr old around?

Thank goodness there is more weight behind the opinions of the hopeful than your bleak outlook. You took nothing into account other than the past and near future. Yes...everyone with HD died. Some people with HD now will too. You have not taken into account their quality of life. Nor given any room that you may be mistaken yourself. Fortunately I know the actual facts. I have reasonable hope founded in things other than the raw emotion of death.

Pay attention to where you are Ron... it clearly states at the to that this is a SUPPORT FORUM. Of course perhaps you confuse this with "grim reaper .com."

Thank you Marsha for spelling out the science and the reasonable hope attached to it so I could concentrate on a much need lesson on what support is and is not!

Yesterday I emailed two prominent Scientists who are working on HD.One in America and the other here.
I was delighted to receive long detailed replies from both of them. The UK Professor even took time to explain everything to me in an easy non scientific way, all about genes and folding etc, and I know he had written it himself due to his spelling mistakes.
There is no cure yet for HD but both of those professionals are very optimistic. One was extremely excited about her line of research and told me that it has moved on a stage further,the other told me there are many great Scientists and Doctors around the world working on HD and other polyglutamine diseases and that is very good news.
They didn't have to tell me anything but even the fact that they bothered to reply to me was I thought wonderful, and both of them said I can contact them anytime.There are dedicated people out there trying their hardest to beat HD and other horrible diseases.
Through all the sadness and sorrow we have to remain positive and help each other and get through this one day at a time.
What a sad day it would be if everyone just threw the towel in and thought whats the point.

I also feel a cure is down the road.
Ron, I do not know anything about you but your reply was very depressing.
I cannot speak for you because you may be in a very tough stage of your life whether it be having HD or supporting someone who does and I know both are tough as I am there now. I only hope you can have some hope.
I stopped reading this forum for a short while as my husband (who has HD) would say - quit reading whatever it is on the internet as it is making you very depressed and it was.
I realize we need to hear the truth but I also know there is hope - if there were no hope or faith in life I can't imagine where we would be (this doesn't just apply to HD).
Years ago there was no cure or help for polio, diabetes, tuberculosis, etc. - thank goodness people had hope and kept researching.
I pray there will be a cure for HD soon and I know some very intelligent researchers are working on this and with the help of computers in this age I think it will come.
Just hang in there - life can be tough with or without HD but thank goodness for all the good people who support each other who are in the same boat!
I do not know what we would do without the website and a special thanks to those who do so much work in getting the site up and keeping it up-from what I have read in prior emails those people are Steve, Marsha and Barb and thanks so much to all of them.
Now go out and everyone have a good day!!

DE,
I am a 55 YO at risk and decided to follow a variation of what both Will and Scott had done. While I cannot speak to a scientifically proven answer to your question regarding BDNF, I can tell you that I sleep better, work better, and feel better. My Dr has been amazed by the changes in weight, BP, Blood sugar, etc. etc. etc. I do not run like Will does, but routinely ride 50-100 miles on the weekends. Best wishes in your decision to be healthy.
Regards,
Dave H

Ron,
I'm not desperately grasping for straws - just wondering how much BDNF really plays into it. I can tell you from personal experience with HD, my mom who has had a hip injury and no physical exercise for the last 15 years is a lot worse off than her sister who has been physically active all her life. My Aunt is 64 yo and barely symptomatic. (They are 2 years apart and CAG probably differs by 2)

p.s. I'm not trying to give anybody false hope,just a true observation

Peace,
De

OK now
Since i feel the teeth knashing and rabid spittle flying, let me just say, please read my post through again, Yes Marsha, research is Ongoing, You do a wonderful job of keeping everyone informed on all the Irons that are in the "RESEARCH" Fire.As for the Blueberry, creatine,BDNF, Excersize, Whatever, Thats Fine too, Granted it is Good to be healthy, Even if your only problem is a toothache, HD, Cancer, or whatever. we all want someone to tell us Something, anything to make it all better, that is hope, i'm not saying we all don't need it, OK? To the uninformed "ERIC" Who always love to garner talking points, I invite you to write to me, You don't know me at all, yet you have so many preformed opinions. so all i can say Eric, My email Address is listed below, Please use it, we may both get a big suprise. can you handle it? And to the rest of the group, My Sincere apologies For having Offended you.

Ron C,
wabbittwacks@custertel.net

Probably a foolish question - but what is BDNF?
thanks.

THANK YOU Shar! I do not feel as silly now!LOL
Trish

brain derived neurotrophic factor. It protects brain cells.

Thanks Marsha.....I am not the one in my family with Hd...but geez maybe I should take it! My brain cells are still recouperating from having twins!
-Trish

Shar, just to let you know, i have absolutely nothing to do with the running of this site at all lol. Someone on another thread had said my power had gone to my head, what power? lol Steve and Marsha completely run this site, and Eric and Gordon are chatroom moderators, and Eric and Gordon, being moderators, gives them certain "power" at times if there is a problem in the chatroom, but Steve and Marsha have all other "jpower". Actually, i don't do anything here, but just talk and talk a lot lol lol I appreciate Steve and Marsha, and Eric and Gordon, tons, for all they do.

Barb-
Thank you for informing me on who does what. Thank you Steve, Marsha, Eric and Gordon and also thank you Barb as you have alot of excellent replies.
Sharon

Marsha-
Back to BDNF. Is it something a person can take or is it something a person derives as a benefit of exercise, etc??
Thanks for the information.

Sharon

Ron, i have read your post, i do understand what you are saying. I just don't agree with all that you say, but some. Here is part of what you said:

"NO ONE, I repeat NO ONE has ever Beaten HD, Straws are Thrown on the dark waters of HD on a daily basis and desperate People Dealing with HD will willingly Grasp these Straws, Do they help? Are they mostly False Hope?"

You are right Ron, no one has ever beaten hd yet, but have they been able to improve their journey? Perhaps. Ron, i do understand what you are trying to say, and perhaps emotions are running a little higher today than they need to. Maybe your post was a little strong, and a strong post can always cause over reaction in others, especially if there are vague statements that are rather untrue. Let me show you what i mean. You are talking about desperate people grasping straws. That statement leaves many people with a really degraded feeling i think. Now, if the subject were talking about Phil Hards famous shark treatment, or witchcraft, or rubbing your belling and saying i am healded, or whatever, or even religion or prayer, these things all may be valid, or may not be valid, if they give a person hope, then great, but these things would also be listed in the grasping straws category, only, and only, because they are not science, and have not been scientifrically proven, but Ron, think about it, the question that was asked on this thread was about very very scientific research, proven and hopeful research, not some hocus pocus straws, right? So think about it. First of all, it is science, so your statements were taking away hope, calling people desperate, and also, your statements attacked the integrity of all the hard research that is done by Marsha before she presents any research data on the web-site. And so we are talking science Ron, not straws, and so i'm sure for Marsha she absolutely had to say something right away, if she didnt i would have for sure. And there is a person here asking, can some of this help me ward off the disease? Good science would say yes Ron. Now, i'm sure that is where eric came in, and perhaps a bit over-reactive. He has kids that he tries to give hope to, he is a caregiver, his wife is in late stages, he tries daily to give hope to people here, and to see one person come along and dash hope so quickly, he probably responded in an over reactive way perhaps? But i think understandable. And thats what i want to say to you to Ron. I think you aalso react strongly, because life is certainly hard for you. I also know that you have said you had one brother who was very very athletic all his life, but when hd hit, it took him down very quick. And so, you havent seen the same hope that some others have been able to see, and so i understand where you are coming from. I'll say where i come from. For me, i dont do every supplement that is recommended and everything else, i do some, what i think works for me and helps me. I don't run, i like walking, so i walk when im in the mood now, it relaxes me, but i def need to get in the mood for walking again, because i know it helps me. I do think you think like me, that, sometimes a person can try everything, but in the end it's not going to do any good. Well the way i think is this, i will try a little of this, a little of that, see if it helps improve my life, if it does, that is great. But, i also know, that there will be times that no matter what i try, my efforts will not win over this disease. I think that is what you may be thinking? Like me? That sometimes we can try as hard as we can, and it doesnt work in the end. But does that mean a person shouldnt have hope to try? I dont think so. For myself, i have decided that i will learn to know when i have tried my best. Some people don't know when to quit. Perhaps some would say Scott Midyett was very wrapped up in fighting this thing so hard, some may say too wrapped up, i may be one of those, but i still admire him, but i felt very sorry for him too, because in the end, he was in misery. Sometimes i think he became so fixated on curing himself, that he created his own hell in the end. But, for most of his years he was very happy, and like Eric said, if he was happy, why knock it? You don't need a war, and Eric doesnt need one. I do appreciate where you are coming from, and i do understand, but i just think many that dont know you or are new, would not have been able to read between the lines. And you do need to know that the science presented here is not hocus pocus, Marsha puts a lot of work in to make sure things are not presented that could be that, you know?



Edited 1 time(s). Last edit at 05/01/2007 04:29PM by Barb.