Jace had a great visit at the nerologist yesterday! He said the best clinical trial that is going on right now is memantine and a few others are coming soon! Jace is NOW on memantine so everyone cross your fingers his body and brain like it...lol

Just thought I would tell you all very good day for us and I hope you are all doing well

Excellent to hear that Amb, doesn't it feel good when you get some good news like that?
Keep smiling and keep us updated on how Jace is doing won't you.

Debbie

nerologist----neurologist new way to spell..lol

Amber, that is awesome news! In my opinion i think memantine is one of the best things happening in the world of HD right now, good deal.

PS so does that mean because it is a trial, do they give him the med for free? And could he be on, i cant think of the word, like an immitation drug, instead of the real thing? Just wondering how this all works, but it sounds fantastic amber. Way to go!



Edited 1 time(s). Last edit at 01/26/2007 10PM by Barb.

Hi Barb-
It is a trail and he is going to be starting another one in six months while on the memantine! If everything goes as planned. NO they are not free , I wish...lol!!!
I can't think of the word either but I think it starts with an N if that is what your talking about. No he is not!Namana??? heck I don't remember???lol

I'm not really sure what they are going to add to the Memantine but i'll be sure and let everyone know.

I was also really excited because they said that he looked really good! We were there for over three hours and they would give him little test like (penny apple table) and he had to remember them over the three hours of doing everything else(AND HE DID!!!!)

After he was done we went and stocked up on his vita. and he got a heathrider and we went to a George Strait concert!!! I don't think we have had a good time like that in awhile I forgot what it was like.

So not to just barb but to everyone get out there and live it up, if your not already.
Maybe it was just me but I was drowning in HD!
Take Care
amber

Awesome Amber, so glad you had a good day, the two of you.

Are you thinking of Namenda perhaps Amber? The trials have placebo and the "real" thing, it sounds like you are on a high at the moment.
You go for it girl

Namenda is the name brand and memantine is the generic name. My husband is on it and doing well too.

When you say doing well Marsha, in what ways? I was told this drug isn't available in Australia and am interested to hear if it will be a certainty for treatment of HD. Would it be safe in children do you think?

Debbie

Well here goes. I'm very uneasy talking about my meds on the forum, even though i talk about them in the chat. But i think i will this time. I have been on a memantine trial for 3 months now, and am doing really well on it. I don't feel as confused and slow, feel more alert. I noticed the dif immediately. I've been told to stay at 10mg because 20mg has shown to have more side effects. I made my grandaughter a quilt this Christmas. I have not been able to sew for three years. One of my daughters told me last week, that she sees quite an improvement in me lately. And we ran into some friends today, that we have not seens for six months, and they were like, Barb, you look fantastic, what's going on they said. They said you are not slow and confused looking, and you are responding quickly in the conversation. So, i have not had every area improve, i personally feel i have had maybe a 25% improvement. I feel this improvement is not in every area, but in three or four select areas. And so, i am happy about this, this is a good thing. If i get more improvement, great, and if not, the improvement i have already had i am very happy with. Does my husband notice an improvement, no. That's only cus he doesn't notice anything lol. I'm thankful to Marsha for telling me about memantine. It actually stops brain cells from dying. My dr says current research is showing it will give me an extra 5 to 10 years he feels for sure.



Edited 2 time(s). Last edit at 01/27/2007 12:12AM by Barb.

ok, so I was backwards : confused , backwards I'm all of the above...lol
amber

Barb,
I didnt know you were on memantine and doing so good with it. 'That's great.

And you Amb, congratulations too.

I wonder, apart from being on a trial, what kind of symptoms would you have before they decide to give you meantine as a medicine?

What type of symptoms do you need to have, you ask, well, HD symptoms. And they did not decide to put me on memantine, i decided what i wanted, went to the doc with my research paperwork and said do it, and he said fantastic idea. I am one of six people that he is trying on it.



Edited 1 time(s). Last edit at 01/27/2007 05:34AM by Barb.

Glad to hear things are going better, Amb. How are the little ones?

Hi Barb,

Were they symptoms of the mind like STML or tiredness? Or also some twitching, however minor?

Thank for sharing Barb. I didn't know you could go and ask for memantine or any other medecin. I thought you had to have specific signs because I can understand a doctor would have to justify giving out these medecines.

You show a very strong attitude. Keep it going.


Elizabeth

Ps I thought the quilt was terrific

My husband's experiences have been much like Barb's. He's been on it since November of 2005. I haven't seen any progression in the disease, which was the reason for going on it. The neurologist thought that it might slow progression, based on a small pilot study. What we didn't expect is that he is more alert and he's been able to read again, something he had been unable to do.

Memantine is an Alzheimer's drug which helps with memory. The reason it is being tried in HD is because of the excitotoxicity theory - overstimulated glumate receptors are thought to be a major pathology. The Huntington Study group has tried several glutamate blockers over the years, such as remacemide, and they haven't helped. Researcher Stuart Lipton came up with a new approach, glutamate regulators. This makes more sense to me because glutamate is a very important neurotransmittor; I wouldn't think blocking it would be a good idea. Right now Lipton is working on next generation glutamate regulators which he thinks will work better in preventing excitotoxicity.

My wife had been on memantine for 3 months now and she is doing better. She seems more alert and her executive function seems better. I say seems because since I am with her every day its hard to see progress as much but a phsician I go to church with told be how much better she is doing. Like barb we also had to ask for the memantine from the psychologists, he said we will give it a try, so far so good. Last week after doing some research I asked for the drug razadyne because it enhances cholinergic activity in hd and alzheimers. So we are now trying that since there are few side effects and doesnt interact with her other meds.I found a report where in Greece a person with hd had improvement with motor and psychiatric symptoms taking galantamine which is generic for razadyne.Mark.

MEN!!...What can I say Barb! lol. But glad you are doing so well. The quilt was such a wonderful accomlishment.

Amb, glad life is going well for you. Was the George Strait concert good? You a country music lover?

Officially my BF hasn't reached onset yet, although he has symptoms (I can understand why this is so because you explained that to me, Marsha.)

Would memantine only be available to those who officially have reached the onset? Before that period of time you would probably call it delaying onset, right? But isn't that also delaying symptoms?

It seems to me that the deeper you get into the secrets of HD, the more difficult it gets.

Awe, thanks Elizabeth, yeah the quilt did come out nice . I have no problem getting meds because when i tested positive three years ago, i was already symptomatic, in very very early stages. But unlike Marsha's husband, i have not had any improvement in my reading skills like he did. For instance, two years ago i could read very long research articles, i cant now. As a matter of fact, if someone puts up a research article, and does not also put up a basic summary, i am lost. Also, if someone even just writes a really long personal story, i get lost and cant make it through the story. So it is like i said, my improvement has not been over-all so much as very specific in specific areas. I have gone from only being able to focus on the tv for five mins, to being able to focus for twently mins sometimes, and i even watched a good movie the other night, and have not been able to watch a movie and focus on one for about five years. But i am thinking with more time on the memantine, the improvement may spread to other areas.
Elizabeth, i am a control freak about my medical care, because i know that some day i will not be able to be in control, so i go overboard now while i am still able to. I always go to the drs, and say, this is my plan now, this is what i want to do, what do you think. They tell me what they suggest, and then i decide and say we3 are doing this then. I am in charge, and they know it lol Elizabeth i dont have anythi8ng like twitching like you are asking. I have mild physical and cognitive symptoms that are evident on a neurological exam.



Edited 1 time(s). Last edit at 01/27/2007 02:30PM by Barb.