"don't help me talk"
in keeping with the theme of this thread... i just returned from a visit to my aunt. she has bulbar onset of als and her speech is getting extremely difficult to understand. her tongue shrunk. i couldn't believe it. and she can't pucker her lips or stick her tongue out.
anyway, what i found this visit was that she gets VERY upset if she's trying to speak and people just nod "yes" without really understanding so they don't hurt her feelings. and also, she gets worked up with people who try to finish her statements when she's talking to people. i think she's very afraid (of course) of not being about to communicate and she doesn't want to know a thing about machines that speak for you or anything like that. i guess time will tell if she changes her mind. she's got another granddaughter on the way so i would think she'd like to be as strong as possible for when the baby comes but she's resisting a lot of things.
on the other hand, she tried accupuncture and felt she had some great results. i know there are tons of debates about this sort of treatment but... whatever works for you.
however, her speech is not sounding better to me. it's all so scarey. luckily, she laughs at herself and still has a very strong sense of humor!
love to everyone,
nicole
in keeping with the theme of this thread... i just returned from a visit to my aunt. she has bulbar onset of als and her speech is getting extremely difficult to understand. her tongue shrunk. i couldn't believe it. and she can't pucker her lips or stick her tongue out.
anyway, what i found this visit was that she gets VERY upset if she's trying to speak and people just nod "yes" without really understanding so they don't hurt her feelings. and also, she gets worked up with people who try to finish her statements when she's talking to people. i think she's very afraid (of course) of not being about to communicate and she doesn't want to know a thing about machines that speak for you or anything like that. i guess time will tell if she changes her mind. she's got another granddaughter on the way so i would think she'd like to be as strong as possible for when the baby comes but she's resisting a lot of things.
on the other hand, she tried accupuncture and felt she had some great results. i know there are tons of debates about this sort of treatment but... whatever works for you.
however, her speech is not sounding better to me. it's all so scarey. luckily, she laughs at herself and still has a very strong sense of humor!
love to everyone,
nicole