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Who in your circle has ALS? Are they related by marriage or blood? Did you attend the doctor appointments with your loved one? How did the doctor’s explain ALS to you and your loved one? If you are related to you pALS by blood, did the doctor discuss the possibility of ALS being genetically linked? Did they encourage your loved one to look into clinical trials and research? Did they offer to help your loved one get involved? Would that be to overwhelming at the initial visit? How much information should be provided at the initial visit (when the diagnoses is confirmed) and who and when should the option of looking into clinical trials be discussed?
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