Yesterday we went to the UMC in Utrecht for a follow up visit. Aim was to let me ask my questions which might have arisen after the diagnose. I knew already a lot, thanks to internet. I just wanted to know where I have freedom of choise. Many things about ALS frighten me. Well I have the choice to accept of refuse every treatment. Will I be brave enough to refuse anything? Time will tell. I am glad I am not living in Italy or Ireland!
For a start I chose to participate in a medical trial with Lithium. Lithium may give a lot of side effects, so it might not be benificial at all, but I want to make the effort to help scientific research to cure ALS. Among the side effects is: It improves depressed moods, and helps preventing mood swings. Well I can use that. But it can also cause: nausea, dry mouth, kidney damage, might affect thyroid, weight gain, etc etc. But also I have a 50% chance that I get a placebo: in that case no side effects at all. We'll wait and see.
Another investigation gives patients a big, big list with questions. The list came today. It took me several hours to fill in every answer. It appeared to me that I have spent a lot of time sitting behind a desk in my lifetime. What a waste of time. Too late now to change that.