Pattyssister
New member
- Joined
- Oct 6, 2014
- Messages
- 3
- Reason
- CALS
- Country
- US
- State
- OH
- City
- Cincinnati
Hello all - my sister was diagnosed with progressive bulbar palsy ALS on 7/2/14. She had symptoms for a long time and was given the run around by many doctors. One doctor two years ago gave her a referral to a shrink and said "go be well." This was after she tried to convince him that her tongue felt funny and that she couldn't move it the way she previously did.
Her neurologist in Florida said "I am sorry, you have ALS. You have a few months to live and I am referring you to Hospice."
My sister moved in with me in August. She has lost a LOT of weight over the last year (50 to 60 pounds). At this point, she cannot eat, she drinks 8 to 10 ounces of water a day. She has refused to get a feeding tube. I don't agree, but if this is her wish, then I told her I would respect that. It is very difficult to watch her disappear and get dry heaves after trying to take any medication.
I think my sister would survive for several months with a PEG tube, but the way she is now, I don't think she will survive more than a few weeks.
Thanks for listening.
Her neurologist in Florida said "I am sorry, you have ALS. You have a few months to live and I am referring you to Hospice."
My sister moved in with me in August. She has lost a LOT of weight over the last year (50 to 60 pounds). At this point, she cannot eat, she drinks 8 to 10 ounces of water a day. She has refused to get a feeding tube. I don't agree, but if this is her wish, then I told her I would respect that. It is very difficult to watch her disappear and get dry heaves after trying to take any medication.
I think my sister would survive for several months with a PEG tube, but the way she is now, I don't think she will survive more than a few weeks.
Thanks for listening.