I have not posted for some time as more pressing matters have needed my attention. Those who remember past posts will be aware that I regularly involve myself in clinical trials.
Why clinical trials? There is no restriction on number of type of trial. I have been assessed for clinical and medical trials including trial procedures (surgical).
I ended up participating in 4 as I did not meet the trial criteria for the others.
I am becoming increasingly concerned at the.number of posts from newbies and others who mention/quote information which has its basis in trials and which is 'dropped into' the text.
For example discussion around around when to start taking meds. There is a wealth of information from trials on this topic, yet this is rarely referred to. My husband and I spent hours filling in 6 monthly questionnaires for 10 years so that fellow PwP could reap the benefits. The results are quite clear: if you decide that at some point during treatment you will need to use certain meds then the earlier you can do so the better. This supercedes the existing folklore that one should ' save' on use of meds earlier.
So much for trials. Retribution? What price the effects of not exploring a breadth of research information when diagnosed? We read some of them each time we access this site. People who have found that accepted wisdom is not all that it seems, that there is no '1 size fits all'. I am afraid that this post is much stronger than I had imagined. I put this down to 16 years PD, heart failure and arthritis!