When I was first diagonsed the neurologist had a nurse sit in on the diagnosis and then phone me a week later to talk about trials.
When I was first diagnosed I was keen to be “useful” and wanted to undergo all the trials I could. Then I started thinking about my partner having to take time off work every month to take me on these trials, losing money there. I considered the petrol involved in driving backwards and forwards to the hospital all the time (I was already doing it for physio), losing money there too.
Then I looked at how I was physicaly, since the steroids had kicked me back into a condition which was laughably the best i had felt in two years. I started thinking about how I might react to side effects on an untested drug, or worse another relapse from taking a placebo.
At that point, I thought, no actually what’s really important is being in a condition to enjoy the life I still have. The unknown and expense of a drug trial when I could be getting nothing and even if I get something useful, at some point they will take it away anyway, left me cold to the idea.
Perhaps wrongly, I was also quite dissapointed the drug company didn’t offer to pay it’s volunteers to be honest. They offered me free parking, but the travel expense and disruption to mine and my partners life, plus the loss of her days wages at work deserved compensation from the multi billion dollar company that wanted my “help” to make more money.
Don’t let anyone guilt trip you into thinking your own health and comfort are a lesser priority.