@quimbie, @amybish
The doctors at Mayo Clinic in Jacksonville, Florida, helped us through the ALS ordeal. They also do genetic testing. There is a type of ALS that runs in families. My sister's genetic test showed positive for this gene. We had an uncle that had ALS as well, although we didn't find out until after his death. There are a few approved drugs to treat ALS but they only extend life by a few months. There is no cure. But, Mayo Clinic has an ALS team of doctors, social workers, pulmonologists, physical therapists and other professionals that will help you navigate through the stages of this horrible disease. They were a great resource and also knew what we needed before we needed it. As the caregiver, I think I benefited more from the ALS Clinic than my sister did. Other hospitals are doing this approach as well. I hope you find one in your area. I would have been really lost and clueless as to what I needed for her care as she progressed. I wish you well through this journey. Make the most of every little moment. ALS takes away all of the person's physical abilities, but it does not take away the mind. That is the hardest and also the best part. My sister couldn't do things anymore, but we found ways around her limitations. We still managed to laugh. She passed in January, and I miss her every day.