Hi, my husband Rick is 49 years old, was diagnosed with Stiff Person Syndrome Plus. It's a rare neurological disease, that he has a very rare form of. Within a year of his first symptom he was bed ridden and can't move his arms, legs or neck.
It's been over 3 years since I quit my job to care for Rick. He requires 24/7 care and that's me. I do pay an aide to help me bathe him 2X a week and his Mother will sit with him once a week so I can get groceries. Other than that it's just me and him. I'm not meaning to whine and usually I try to keep a positive attitude and am grateful that he's here with me and fighting. Im just wondering what other people do to cope.