[Nan Cyclist]

As many of you know, I suffer from a form of Parkinson’s that includes REM sleep behavior disorder, a condition which increases dramatically my potential for developing dementia. When the opportunity came to participate in the drug trial for the drug galantamine which is used to treat Alzheimer’s patients, I leaped at the opportunity. Today I had my final assessment from the drug trial, which showed rather remarkable results.

I’ve been taking the drug now for three months, with the last two months at the full dose. I had noticed many changes myself but those were all anecdotal even though promising.

Over the course of the trial, my memory score went from 6 to 11 out of a total possible 12. I improved in every category except one, sometimes almost doubling my score. The examiner was as astonished as I. But she also added that across-the-board the results are very very positive and everyone is most encouraged. The test I am in is a pilot that includes 30 patients. They are looking to expand it to 300 once all of the data are analyzed.

[Tupelo3]

Originally Posted by Nan Cyclist

Over the course of the trial, my memory score went from 6 to 11 out of a total possible 12. I improved in every category except one, sometimes almost doubling my score. The examiner was as astonished as I. But she also added that across-the-board the results are very very positive and everyone is most encouraged.

That is wonderful news for you and our community! Best of luck!

[Nan Cyclist]

The second person I know in the study got a score of 12 for 12 and is also able to continue the medication.

Good news again. 30 days of pills cost $14.

[Tupelo3]

Wonderful! I was wondering who is conducting the study? I couldn't find it on the NIH's clincaltrials site.

Thanks,

Gary

[Nan Cyclist]

I should know that, but I'm away from all my packs of trials papers. I've been going to the University of WA for the fnMRIs and to the VA Hospital for the cognitive tests. I'll be more specific when I'm back home.

[lurkingforacure]

Before we all go order a bunch of galantamine off the internet, which you can do, I wanted to chime in with what I have read about it.

I am so glad this is helping some of us, but did want to point out that this drug has been studied for PD going back several years....there are case studies using the drug in people who had PD and people who did not, and the gist of my reading seems to be that there is improvement, sometimes substantial, for up to a year, but then the improvement does not hold.

Don't get me wrong, any improvement is awesome, and many of those whose scores went up but then began to decline again still were better off than they were at the beginning of the study, but they only followed people for a year so it's hard to say what happened after that.

This drug works on the cholinergic receptors but ALSO the NICOTINIC receptors which is where I think the improvement comes from...we all have read the studies about nicotine patches, gum, smoking, etc. all being beneficial in some way for some people with PD, and of course Villiers here is on the nicotine protocol in France and apparently doing well.

I hope the improvements people see from this drug are maintained

[Nan Cyclist]

I apologize for not doing my homework and offer much appreciation to those who do. I was carried away with enthusiasm and, as an anthropologist, should have known better than to have written anything until the full study was completed and results were published. I certainly hope the results hold. Now I'll wait like the rest of the world....

[Nan Cyclist]

I have more news to report on the drug galantamine. For whatever reason, my tremor became much stronger, which apparently led to a tightening in my shoulder and almost unbearable pain. I became hunched over and, as my son says, more like an 87-year-old both mentally and physically than the 67-year-old that I am. On August 29 I decided to stop taking galantamine and within a week everyone around me noticed that I was now 67 years old again. One of the hallmarks of my behavior while I was on galantamine was an inability to make decisions. It was like my mind was frozen. Since stopping the drug, I have not noticed any negative effects. My memory seems stable and certainly my ability to make decisions has increased by manyfold. I was so hoping this would be a cure, or at least very helpful. But unfortunately, it just didn't work.