Actually, I finally need to say this. I have been very disturbed by your posts for a long time. I have been on this forum a very long time, and I have tremendous compassion for those, especially with young children, that have had to leave their HD spouse, and yes, even horror stories of the hd person telling terrible stories about their ex. But, this is the difference. You may not like what I havby Barb - Huntington's Disease Support Center
I don't get it. We used to ask our kids all the time if the doors were locked. Are you talking that your kids are 2 or 3 years old, or 7 or 8? Makes a big difference.by Barb - Huntington's Disease Support Center
Hi Roger. I want you to know I read your story last night, before you decided to edit, and I'm sorry I didn't respond. I was just so lost for words, and didn't know what I could say. But you are very welcome here, and please share when you're ready tooby Barb - Huntington's Disease Support Center
Hey Will, I truly believe that your supplement regime truly is a good one, and more importantly, it works for you, and hey, if it aint broke, don't fix it, right? lol You are an incredible and unbelievable person. And I know you always said it would be sad when all four of you don't cross the finish line. We do get older, don't we, and those we know. But, enough of that, now you're on to #40 nby Barb - Huntington's Disease Support Center
Oh gosh, my above post is wrong, because later in the article it says that a low protein diet can help prevent activation of mTORC1, so I've copied the whole article...help Marsha if you're able to? This article is from medicalxpress.com, but I couldn't copy the link: Scientists uncover major factor in development of Huntington's disease Scientists from the Florida campus of The Scrby Barb - Huntington's Disease Support Center
Wow, you got my curiosity up tonight, and so I did a lot of googling. My question was the same as yours, is this mTORC1 a protein that is found in our diet, like you were asking. I finally found a medical article that explains it more, but I wasn't able to paste the website, it was from a proper medical site, it was a neurology report talking about the same findings as your article. What I foundby Barb - Huntington's Disease Support Center
Actually, I find this very interesting. I myself am not a fan of creatine, only because I tried it and it had a negative effect on my kidneys, and my hd got worse, after 3 weeks I had trembling that I'd never had, and very very aggressive emotions, and very sore kidneys. So I personally am not disappointed in the outcome of the trial, I did not feel all along that creatine was good. But, having sby Barb - Huntington's Disease Support Center
Bioblast has only been in operation for two years, according to their web page, and they have only had a board of directors for only three months. Most of their board of directors specialize in profit making, and they boast about their ability to make money. So, to me they don't appear very credible, but maybe Marsha knows otherwise. As for the treatment itself, I really don't know. Eating trehalby Barb - Huntington's Disease Support Center
Maybe they are needing something like a recliner chair to sleep in, maybe lying flat isn't comfortable any more ?by Barb - Huntington's Disease Support Center
Continued from my above post: Here's an example Steve. Laura and Pete posted long before Nalo's post today, but on the forum, nalo's post showed up first, and laura and pete's did not show up until a couple hours after nalo's. I know that first, by the time on the posts, and second, when laura and pete's finally showed up as a new post, it did not go to the top of the forum, it went below nalo'sby Barb - Huntington's Disease Support Center
Hey Steve, just wanted to let you know, for the last couple days, and this has never happened before, I have gotten several new posts on threads, that don't show up until a good couple hours after they've been posted. Posts that are posted after a particular post has been posted, will show up first, and then a couple hours later a newer post comes up lateby Barb - Huntington's Disease Support Center
Oh gosh Julie, I'm so sorry. Your mom lived to a good age for sure. We all know here how much you cared for and loved your mom, and I'm sure she will be missed.by Barb - Huntington's Disease Support Center
Ok, I think this is going to be a long post, so bear with me, it might be helpful. I am very early stage hd, did not get symptoms until my mid 40's, but school was always a struggle for me. We don't know if your daughter has hd or jhd, and I don't know if my struggles in school are related to hd or not, but, here is the hope, I had the same struggles and did not get hd 'til middle age. So here isby Barb - Huntington's Disease Support Center
I'm so sorry, what you have gone through, and how you now need to process your future. It's like your sense of identity is gone, and you need to find a new identity. I can relate to that, but on a different level. When my husband passed away four years ago, I lost my identity as a wife and partner, and had to find a new identity for myself, like who am I as a person, not as a wife. I'm so sorry fby Barb - Huntington's Disease Support Center
Will, I'm so sorry to hear this. I didn't know, thank you for posting a link to your article. You did a fantastic article about your brother. Thank you Will, you are a real trooper (((hugs)))by Barb - Huntington's Disease Support Center
Oh my gosh! Way to go Steve and Marsha, with or without hdsa! Thank you so much, I'm sure it will go very well!by Barb - Huntington's Disease Support Center
Hey Mike, I don't know if I can answer all of this, but i'll try. When the memantine started to make me agitated, I had been on it for 4 or 5 years, and at first we didn't know it was the memantine doing it. Was finding me antidepressant and tranquilizer were suddenly having to be upped, even though I had been settled on the same dose with them for about 6 years, so I went into my hd doc and askeby Barb - Huntington's Disease Support Center
Now this is a shame, how do we get these, our agencies, to get their heads out of the sand. Thank you Fredby Barb - Huntington's Disease Support Center
Hey Mike, did you see my post up above about memantine? I know it really helped me, and might be helpful for youby Barb - Huntington's Disease Support Center
Sorry Amber, hd people Do need more oxygen to their brain. The very first thing my hd doctor said to me on my very first visit was this: Anything that improves heart health, circulation, and blood blow, that is good for the heart, is good for the brain and for hd, including exercise and heart healthy foods. And sorry everyone, but my frustration level has hit it's limits with this thread, and yeby Barb - Huntington's Disease Support Center
Both Howard and Tyler have a mood stabilizer on their lists, which seem to work really well for hd. I take Seroquel at bedtime (which is similar to the resperidone that was mentioned). Seroquel is a mood stabilizer, and anti depressant. It helps with both depression and mood swings, and anxiety. I take mine at bedtime because it really really helps with some of the disturbed sleep that happens wiby Barb - Huntington's Disease Support Center
And sorry to go off topic in my above post About this topic, being artistic. I don't think I'm artistic, but I like to make quilts. Three years before I got hd, I took a sudden interest in quilts. I saw a quilting show on tv one day, and that was it, I was hooked, and so I went on the internet and taught myself to quilt. It was fascinating, how different patterns could look so different, just bby Barb - Huntington's Disease Support Center
Schlinky, first, I understand what you're going through also, I'm early stage too, fortunately for me, those same symptoms for he have improved, to the point of almost being nonsymptomatic now, not me saying that, my doctors saying that, I've just been lucky. But I have a real concern for you. You say you are struggling with your job, but not enough to go on disability. I'm sorry, but I have toby Barb - Huntington's Disease Support Center
Actually I have not been disappointed on the findings on Q10, as a matter of fact I have been quite happy at the negative findings of different research on Q10. This is because from the very beginning of my hd journey, I have felt that Q10 is not only not beneficial, but have felt it is harmful for hd. I based this on something I read on the lighthouse several years ago, and somehow it rang a belby Barb - Huntington's Disease Support Center
Also, it doesn't matter if you go to church or not, make a few phone calls to some local churches, they usually like to help people in the community, even sending some ladies over to help out, it's worth a try.by Barb - Huntington's Disease Support Center
Nope, not her story on coconut oil anyways. If I remember, we had quite a discussion on here maybe about 5 years ago on here about her. Her so called results were mostly what she wanted to see, because when we watched her video, there was no visible sign of change in him at all, not saying she was lying, she just had rose coloured glasses is all, and saw what she wanted to see in her husband. Asby Barb - Huntington's Disease Support Center
Will, that was a great article. I believe what you say too about cancer and hd. And I also "believe" in the sun And I'm sure the chemicals in sunscreen are more harmful than the sun. I try and get as much sun as I can in the summer, about 20 mins, several times a day, because I've heard the vit d you get from the sun is stored, and if you get enough it can last you through the winter,by Barb - Huntington's Disease Support Center
I've never noticed a connection with hd and low blood pressure here on the forum at all. I have hd and high blood pressure. Usually the fatigue with hd is from "slow"? mytochondria. Low blood pressure can also be from heart problems, all kinds of other things, that should be looked at by your doctor for sure. It's a fine line sometimes trying to decide if something is from having hd, orby Barb - Huntington's Disease Support Center
Stela, that was a very good and thoughtful post. And also, when we have "something", that also doesn't mean any illness we get is necessarily a part of that "something". One night a few years ago, I was having a stroke, slurred speech, one sided numbness, unable to walk, etc. And then I started having seizures. So my husband rushed me to the er. BUT, before we left, we got somby Barb - Huntington's Disease Support Center
Hi everyone, thanks. Last night I just wasn't sure if I needed to go to the er or not, decided to wait til my doc appt next week, unless I get unwell again before that. Just one of those things, that if I go, will it be a waste of my time, like how they will take a man more seriously than a woman. But, my boyfriend knows I'm not feeling well also, so if I'm suddenly feeling worse, he will get meby Barb - Huntington's Disease Support Center