Reply To: my father is paralysed neck down.

May 17, 2015 at 12:35 pm

I’m so sorry to hear about your Father but I am right there with you. My Mother is the very same. Only given the diagnosis three months ago, but shown symptoms for years. Now in the hospital for second time, paralyzed neck down, she is 77 years old. My Sister and I are struggling. This is rare and we do not want to give up hope but are hearing there may be damage to the nerves due to time prior to diagnosis. What do we do? How do we take care of her properly and work and take care of our own families? She and Dad want to live at home, Dad is so fragile himself. Doc Tried: Steroids: She reacted poorly, IVIG, she had bad side effects. I do hear you can pre-medicate? now doing a “round” 5 days maybe more of Plasma Pharesis. They “say” some improvement? “a pump of her foot”. Am I to get excited about that? If yes, please tell me. Also, does anyone know if CIDP affects the speech? Mom’s speech has been affected, can only string together three words on a good day. I believe it is the diaphragm affected. I am with you. I feel like we are kindred spirits. UK/USA, we are in the same situation, and I hear CIDP is rare no matter, especially to the extent our parents have it. When someone asks, I say we are hopeful. Hang in there my new friend, lets stay hopeful! Can someone with more knowledge keep us hopeful please?