In 2011, I started participating in the pre-fALS study. At the time I had no idea what the potential treatment could look like. I assumed it would be some kind of oral medication.
One of the procedures they ask of participants is to do a lumbar puncture to collect spinal fluid. I was terrified of this so for the first 10 years I opted out. I asked the research team a couple of times why spinal fluid was important, and they explained that it is clear and they can analyze the substance much better. (I’m paraphrasing). This study is contributing to the Tofferson trials. Once I learned about Tofferson and understood how it could work, I realized how vital spinal fluid and getting used to the procedure could be. I opted to start doing the lumbar puncture last October.
Do you have any fears that get in your way of getting treatments or volunteering for research or clinical trials? If so, what are they and what was your thought process in making your final decision? Is there anything that would change your mind or opinion about participating?