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Romy-h,
You are in a tough spot. I admire your dedication to helping other pALS and learning more about ALS. My cousins were the one who got my family involved. To be it was a no brainer. My father, who at the time had ALS, did not want me to participate. I really think it was more about thinking or learning I had the mutated gene. He felt responsible and didn’t want to think about me suffering. I often wonder what he would think now after everything we’ve learned. Not to mention I’m on QALSody and it’s keeping me alive and halted the progression. Without people volunteering we would not have that treatment for SOD1 ALS. I’m convinced that other treatments will show success as well. It’s been and continues to be a long road but we are making gains. Not enough, but it will only be enough when every pALS has a treatment or cure. Keep advocating and participating! You are making a difference.
Amanda