I am Sandra Rafferty

someone who cared for a person we've lost to ALS

New Jersey


He is very much aware of everything that is happening to him. This is a hell no one deserves.

I want people to understand what happens to a person living (or dying) with ALS. My partner, Jim, was diagnosed in July 2013 and passed away 14 short months later.

He started dying July 8, 2013. ALS is a death sentence. There are no nice words to tell you – there is no hope, there is no future. He began dying that day and continued to die a little more each day. And it was a rapid journey.

His hands no longer worked. He quickly went from a cane, to a walker, to a wheelchair. He could never be alone or have privacy in a bathroom. He cannot shower. He can no longer brush his teeth, comb his hair, shave, dress. He continued to loose muscle weight.

He will never be able to hold his grandchildren again. He will never be able to give them a kiss. He will lose his tongue which means he will no longer be able to talk. Period! To anyone ever again. No phone, no computer, no facebook, no notes, no sound. He will be able to hear laughter, but never laugh again. He will never be able to tell you how much he loves you or how proud he is of you.

ALS destroys muscle. All muscle. Every muscle in your entire body. The cruelty is that his mind is still bright and kind and loving. He is very much aware of everything that is happening to him. This is a hell no one deserves.


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