Originally Posted by johnt

In the video [1], showing a patient walking before and 6 and 8 weeks after starting nilotinib, it is interesting that in all cases he is leaning to his right. I assume that the conditions, e.g. time since last dose, are the same on all three occassions. I associate a lean, caused by dystonia, to be a reasonable measure of integrated exercise or conversely the effectiveness of the therapy. It could be argued that a progression delaying drug doesn't need to show improvements immediately, but over 8 weeks I would have hoped to see something more. Given that, I am disappointed by the results.

As Blackfeather says there are people making group purchases. One of which is on the LongeCity forum. Over the last few months they have arranged a number of group buys, at a much reduced price. Interestingly, none of them are reporting great benefits so far.

The problem with assessing progression delaying drugs is the resolution of the measuring procedure. Suppose you had a drug that unbeknown to you stopped progression, but did not reverse it. For the sake of argument, suppose that the annual decline is 12% or, approximately, 1%/month. Then, to see an effect after a month you need to be able to measure with at least this accuracy. You can improve accuracy by taking more frequent observations or increasing the group size.

Reference

[1] Parkinson's disease study caught in feud involving Fox Foundation

[2] Nilotinib Group Buy - Page 15 - Brain Health - LONGECITY - Page 15

John