I thought it might be interesting to have a topic board for those who have experience in participating in clinical trials. Was it difficult to be included in trials because of age? Did you get into a trial and feel that you might have had some benefit?

I refused a clinical trial as if I was going to get medication I wanted to make sure I got the real deal......

Jeff,
check "medications and treatments."

You, may, also, want to post this in the "caregivers site."

Good Luck.

I got my bro into a Dimebon trial in April. Dimebon trials are only for 6 months and then you can elect to participate in an open label trial, which means you will definitely get the drug for free until the FDA approves it. This is the reason we chose Dimebon - the 6 months and then getting the drug for sure. Most other drug trials are for at least a year; some 18 months. Fortunately, we think my bro is on the Dimebon because of some side effects he's experienced - constipation, UTI. These both can be caused by an antihistimine from what I've been told.

My bro is 56, so we didn't have a problem getting into the trial.

Debz
Dimebon sounds exciting. I hope that your brother is a success story. He's lucky to have a sister who is so helpful.

Thanks Jeff. We lost Mom with AD a little over a year ago, and I'm just not ready to give up on my younger bro! I just wish I could get him to take some other supplements along with the Dimebon. I do believe in the multi-prong attack since we do not yet have an identified cause for this horrid disease. I'm trying to keep my rose-colored glasses on!! And I will certainly keep everyone posted on any progress with the Dimebon.

Well Deb, there is some good evidence that the spice turmeric has anti amyloid properties from what I have read on the internet. This is an easy one for me because I love Indian food restaruants Sorry to hear about your mom. It sounds like their is a wide range of onset in your family, kind of like mine.

Jeff and Debz,
Did you look at the Momentum in Science sections of the HBO documentary, The Alzheimer Project? There seemed to be encouragement in those segments.

Iris L.

Iris,

I saw that documentary. It in encouraging to see that the drug company piplines are full of new drugs. Many in Phase II and III.

Know hope.

Jeff, perhaps you'll check out the benefits of medical marijuana? I think your state supports it. There's a world of difference between street swag, and the varieties that have been bred for medicinal effect.

Alan

So how did your doctor approve you for medicinal marijuana? The only side effects I can think of for Alz is upset stomach and anger! I'm not trying to be nosey, just curious?

M

Mary, why do you insist on making me think so much? Don't you know it hurts??? ("Smiley face." Can't figure out how to do it.)

In addition to my rotting brain, much of the rest of my nervous system is slowing dying, too. I have quite the spasms, which qualifies me for medical marijuana, and it helps quite a lot. I still get them, but less often and less intense. Lots of other symptoms, but that's just tough, not going away.

My primary care doctor also has read that progressive dementias can often benefit from medical marijuana. Not so much this country, but there are a lot of progressive countries where this has been studied scientifically. And it isn't about getting high, the medicinal level is before you get stoned. Which is good, because I have no interest in being a 54 year old stoner. And I don't smoke it, I make tea, and use a vaporizer.

I'm up for more questions, if you're interested.

Alan, Mary et al,
I'm still trying to get MM approved here. It just seems so hopeless. I have myoclonus too. I have to take pills for it. I'd rather make some MM tea!

Yet, they let all the fools here drink alcohol 24/7!!!

Go figure?!

Hi,
I recently re-watched the parts of the Alzheimer's Project " Momentum in Science parts 1 & 2." Some very interesting things going on now. 91 drugs now going on in clinical trials. I think it was Elan that is working on Axona which looks promising. Bapineuzumab appears to be the front runner although they did encounter some safety issues.

They the did this thing with the AD mice and physical exercise! That was, also, pretty cool.
I'll have to get myself back into a really good exercise routine for several reasons. (At least exercise is Free). lol

Oh, I think I posted this in the wrong area! Oh well.

What did anyone else think of the Science parts?

Hi, Lisa. I haven't watched the documentaries themselves yet, but have been working my way through the supplementary videos. They are fascinating.

Axona has already been launched. Quite a few of us have asked our doctors to prescribe it for our loved ones.

http://www.about-axona.com

Don't know if this information was available in time for the documentaries: there is a new drug, Solanezumab, that is similar to Bapineuzumab but has a much better safety profile. Phase III trials recently started recruiting:

http://clinicaltrial.gov/ct2/show/NCT00905372

http://clinicaltrial.gov/ct2/show/NCT00904683

JAB,

Thanks for all the hard work you do and thanks for SHARING it!

Please, try to watch the HBO Science parts. They were very interesting!

Lisa, I was intrigued by the mouse experiment too. However, I notice that I think better when I am rested, not when I have exercised. Perhaps it's the overall fitness level that's important. I don't remember if the mice were normal mice or AD (early stage?) mice.

I wonder how many of us with early stage memory loss exercise aerobically at least 30 min a day, and if there is noticeable improvement?

Iris L.

Iris et al,

It appears as if EXERCISE helps a lot of things. I need to get my but in gear! lol

I take my husband for a walk almost every day. We go to a nearby lake where there is an asphalt walking path, and enjoy the scenery, watching the birds and animals, and talking with the people we see there. It doesn't seem like work at all, but we do almost two miles. And there is no doubt in my mind that it's VERY good for him. Bare minimum, he loves it.

Solanezumab is for people 55 and older. Hopefully these studies will start accepting people even younger, for example 45-50 and up.

I am in Seattle. Diagnosed with eoad last month. been taking namenda. i signed up for a research study, waiting to hear. In the meantime I am looking to get a second opinion on my PET scan results.