Hi Everyone,
I am new to this- but as my husband's sole caregiver, I have been reading your posts and have found valuable suggestions and help. My husband, Marv, was diagnosed in Sept. of 2005. He started with slurred speech, then difficulty in swallowing and eventually had to have a peg tube inserted Aug. 2006. He lost his speech around the same time as the peg tube was put in and now cannot use his arms. He is still walking, but is very unbalanced when he does. I walk behind him, just in case he starts to go down. We are going to have Hospice come in soon to help me. (against his wishes) and his Doctor has ordered a power chair with head support. His head has dropped and leans to one side, so he has constant neck pain. The worse problem now is his drooling. We've tried Botox injections in his saliva glands (didn't work) radiation on his glands three times. It didn't work either, just burnt a hole in the hinge of his jaw! In the meantime, he has bitten the inside of his jaw and tongue so bad that half of his tongue is gone on one side. We are trying bite guards and if they don't stop his clenching of his jaw, they want to do Botox in his cheek muscle. Of course, that will make his mouth hang open and the drooling will probably be worse! This has all been very hard for him to accept because he was always so active, played sports, raced cars, and built engines most of his life. ALS sucks! Thanks for listening
I am new to this- but as my husband's sole caregiver, I have been reading your posts and have found valuable suggestions and help. My husband, Marv, was diagnosed in Sept. of 2005. He started with slurred speech, then difficulty in swallowing and eventually had to have a peg tube inserted Aug. 2006. He lost his speech around the same time as the peg tube was put in and now cannot use his arms. He is still walking, but is very unbalanced when he does. I walk behind him, just in case he starts to go down. We are going to have Hospice come in soon to help me. (against his wishes) and his Doctor has ordered a power chair with head support. His head has dropped and leans to one side, so he has constant neck pain. The worse problem now is his drooling. We've tried Botox injections in his saliva glands (didn't work) radiation on his glands three times. It didn't work either, just burnt a hole in the hinge of his jaw! In the meantime, he has bitten the inside of his jaw and tongue so bad that half of his tongue is gone on one side. We are trying bite guards and if they don't stop his clenching of his jaw, they want to do Botox in his cheek muscle. Of course, that will make his mouth hang open and the drooling will probably be worse! This has all been very hard for him to accept because he was always so active, played sports, raced cars, and built engines most of his life. ALS sucks! Thanks for listening