My son Johnny, age 19, has been on a Talampanel trial out of Forbes Norris ALS Research Center in San Francisco. We had the option of participating in the trial out of Johns Hopkins in Baltimore but chose Forbes Norris since we live on the west coast.
He has his second to last clinic visit related to the trial this coming Monday. We were told that the drug company was dragging their feet as to whether trial participants would receive the actual drug after their participation had ended, after the trial was over, or even at all.
We have nothing to compare his progression to, other than the ALS progression before he began the trial in March 09 or so. Based only upon that, it doesn't appear the Talampanel has been the slightest bit effective in slowing the effects of ALS. He's considerably farther in progression than he was when he started the trial.
There are many areas where he shows diminished physical abilities. Most recent is his speech beginning to slightly slurr, or sound 'thicker'. He has lost muscle mass throughout his body. His shoulder blades are showing through his shirt and he's lost about 25 pounds over the last 3 months or so.
It will be interesting to see if he's been on a placebo or the actual drug. I hope those who are actually on the drug are seeing encouraging results.