Submitted by: T H. on Sun, 01/01/2023

I am a caregiver for my husband who is living with ALS. The doctors, even the multidisciplinary ALS specialists, don’t recommend anything I have found. If you don’t find it yourself and ask, repeat, and insist, you won’t get anywhere. It’s as if the medical community goes deaf when you say it’s ALS. Nothing we can do, so sorry, be comfortable and please exit the arena. This is a tragic circumstance for so many. Doctors need to be proactive in working with individuals at different stages of disease and be willing to try and at the very least advise and provide the limited information that is available. They also need to pay attention to affected individuals and their families if anything is to be learned about the cause(s), commonalities among patients experiencing, develop potential early interventions and therapies. To the medical community- this disease is terrifying. Don’t shut the door on hope and living life for people who are scared and seeking some reassurance and sense of empowerment in the face of this cruel disease. Physical therapy? Absolutely. Everyone can benefit from physical therapy. Good luck in your journey.

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