ALS Hurts

This site is dedicated to Isabel Valencia, my loving mother who suffered from ALS and endured a multitude of pains and hardships associated with the disease. ALS is truly a terrible Illness. She wanted me to make this website so that we could inform people on how to navigate the different stages of the disease, so that others would not have to suffer as much.

I hope by sharing her store, insights from caring for her, and navigating the health-care system in regards to ALS, palliative care, and hospice, you can make decisions that are best for you and your family or loved one who is suffering from the disease. I will be brutally honest and straightforward, because this disease is brutal and the time we have with our loved ones should be spent appreciating their presence not trying to figure things out.

The name of the sight comes from a terrible experience she had with at the ALS clinic here in New York. Her body was failing her and a physical therapist demanded that she try to flex and contract certain muscles. My mother was visibly in pain and complained. The reply of the physical therapist was “ALS does not cause pain” Something while technically true, ignores all the secondary pain caused by the illness, but also my mother’s others illnesses, such as fibromyalgia, which cause nerve pain.

My mother used to say ALS Hurts! It hurts me, my children, and my friends.”