On the way to perfusion 3 (a 2 hour drive) my car broke down with an alternator failure. Had to be towed home and take my wife's car. This led to being 3 hours late and a high intensity day to get all the tests and the perfusion done.
Glad I made the effort. They've changed the protocol
Have you felt any benefit from your ongoing trial so far
Probably. Tests today were interesting too. I had to sign a change in the protocol today. 2 changes. The best for me is I can stay on the drug at the end of the 2 years. Intriguingly it is no longer placebo group switching to low medium or high after 12 months. Now, after 12 months placebo AND low dose groups switch to medium or high
Draw your own conclusions
The tests include my doctor moving my slack arms and legs . At my first neurologist appointment and first trial assessment, this revealed a cog-wheel effect in my left limbs and was the sole basis for my original diagnosis by my first neurologist. The trial neurologist yesterday could detect no anomaly on my left side. Both left and right limbs were normal. On that narrow measure then, I'm cured.
(I'm not, but...)
this is a good news!!✌
Thank you iqbaliqbal. It is undoubtedly good news for me that there is the option to continue receiving the drug after the trial ends. Friends had been shocked at my answer to "what happens if the drug trial is successful?". My answer had been "I will no longer be able to use the drug until it is eventually licensed for general use, which would require a further phase 3 trial probably taking at least 5 years before FDA approval. During that time my PD would progress normally"
"I can stay on the drug" is a much better answer
Don't read too much into the cog-wheel test
it's quite subjective
I have plenty of other diagnosable symptoms. These include obvious lack of left arm swing walking, observable mild resting tremor in fingers, slow finger tapping, slowness of left hand movement - say removing a wallet from my pocket (my son has already remarked "only when asked to buy a round of drinks")
I could be on the placebo
Whether on the placebo or the drug, it could be a placebo effect
Arguably, the possible improvements, particularly sense of smell, are a continuation of a trend before the trial started, maybe due to exercise, diet, and microbiome management.
Some symptoms are worse than a year ago, although generally, I feel MUCH better these past few months, and certainly can tackle strenuous full day DIY / Gardening projects, which I was really struggling with last summer.
The drug was supposed to slow/stop progress - not relieve symptoms. So the real measure would be a lack of progression after 12 or 24 months, not a loss of cog-wheel movement after 2 months. The Datscan at week 24 will be interesting. (This is week 8)
The only trial related objective I can say with any certainty is that I have experienced no adverse effects at all. Just as one might expect from a placebo!!
Please post links to the clinical trial documents.
clinicaltrials.gov/ct2/show...
parkinsonsmovement.com/immu...
scienceofparkinsons.com/201...
Thank you.
Thanks Winnie,
Thank you for the feedback. It sounds to me like you have a little more benefit going then I would ascribe totally to the placebo effect - but who knows.
Good for you, that you get to keep taking the drug. That's rare.
The option to stay on the drug is huge. It's not routinely practicable. The substance is not a licensed medication and a doctor can't prescribe. They are getting round it by allowing us to immediately join a follow up study, presumably in parallel with a separate new entrant phase 3 trial. The mid trial revision of protocol is intriguing
I would say that it indicates early success that they weren't expecting.
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