- Joined
- Jul 20, 2019
- Messages
- 9
- Reason
- Loved one DX
- Diagnosis
- 07/2019
- Country
- US
- State
- CA
Hello everyone,
Thank you for this helpful forum! My father was recently diagnosed with bulbar palsy, and I have some questions about our first steps in this process. Thanks for any advice!
First, we are seeing a GI doctor for a feeding tube consultation. From reading posts on the forum, I get the sense that BP patients need specific kinds of feeding tubes and may need to work with a Dr who has experience with ALS. What questions should we ask during the consultation to make sure we are getting the right Dr and the right feeding tube and care?
Second, we are seeing a second-opinion ALS specialist. What questions should we be asking at this point in time? I’m not sure where to start. Also, how would you assess whether this is the right team for us to work with or whether we should be working with a larger ALS center in a further away city that would be a much harder trip for my father and my mother (his primary caregiver)?
Thank you!
Thank you for this helpful forum! My father was recently diagnosed with bulbar palsy, and I have some questions about our first steps in this process. Thanks for any advice!
First, we are seeing a GI doctor for a feeding tube consultation. From reading posts on the forum, I get the sense that BP patients need specific kinds of feeding tubes and may need to work with a Dr who has experience with ALS. What questions should we ask during the consultation to make sure we are getting the right Dr and the right feeding tube and care?
Second, we are seeing a second-opinion ALS specialist. What questions should we be asking at this point in time? I’m not sure where to start. Also, how would you assess whether this is the right team for us to work with or whether we should be working with a larger ALS center in a further away city that would be a much harder trip for my father and my mother (his primary caregiver)?
Thank you!