I have been taken off the trial as the medication is increasing my heart rate, and I didn’t fit the trial criteria anymore. This is a real blow because I really need some hope to hang on to. I need a cure and to prolong things. Up until this point, the trial had been going well. My breathing SVC had improved and the consultant said that there was nothing indicative that would shorten my lifespan at the moment. I am so disappointed and feel out of control with this illness. MND takes away all hope. The doctors have said there might be the chance of a new trial in September.