I am Karen Smith
a family member in a familial ALS family,
caring for someone living with ALS
My husband is the love of my life, my heart, my better half and losing him to this monster disease is criminal.
My husband was diagnosed in November, 2018. For the first two years we thought his progress would be slow. But by the end of 2020, the disease progression significantly increased. He now has a feeding tube due to swallowing issues. His speech is becoming more unintelligible. He cannot use his hands and his legs are very weak. He is in a wheelchair. My husband hoped for so long that NurOwn would be made available or some of the other trials that have shown promise. But it has not happened and I am watching him lose all the hope and the attitude that he would beat this disease go up in smoke. He has given up. This is the most painful disease for a loved one/caregiver watch, especially when there is nothing that can be done to help him. I ask myself, “Would NurOwn even help now or has he progressed too far for anything to help him?” My husband is the love of my life, my heart, my better half and losing him to this monster disease is criminal. When there are drugs which might halt or reverse his progression available, but we are not able to try these drugs. This is too sad for words.