D Flip
New member
- Joined
- Sep 29, 2012
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- MI
- City
- Detroit
I have been lurking on the forum for a few months, since his symptoms began in late July/early August 2012. He's had 3 EMGs since September 2012 and just the most recent one last week finally showed what we have suspected - bulbar onset ALS.
I have already learned so much here but still feel at a loss. I was hoping beyond hope that I wouldn't need to put any of this information to use! But his condition appears to be progressing - [thankfully?] for now it's strictly bulbar symptoms. He has a terrible time clearing saliva, can't eat much in the way of food without coughing up a storm, and can't talk clearly. He still has good muscle strength and can get around.
We're working on getting a PEG tube placed this week. My dad and mom aren't absolutely prepared for it but he has such a hard time with swallowing and has lost so much weight that the doc really strongly recommends that he proceed, without too much more delay. I have read Rose's blog but can't enlarge the pics for some reason (is it because I'm a newbie?). She is a great source of information; thank you, Rose! Does anyone else have any tips or things they wish they'd known in advance before going in for the PEG? I know that he should expect some muscle soreness from the actual insertion and we're preparing for wound care. It seems that finding the right formula is a matter of trial and error. Anything else?
Next, doc recommended that he get set up with BiPAP. I am for some reason really overwhelmed with the info out there about the various masks and flows and all of that. Is there a sticky on this somewhere? Or a post?
We also got Rx for ril uzole but the doc didn't seem too enthused about the modest impact on survival. We're still weighing the cost and side effects vs. the potential benefits.
Thank you, and hello. No offense to anyone, but I am heartbroken that I am here.
I have already learned so much here but still feel at a loss. I was hoping beyond hope that I wouldn't need to put any of this information to use! But his condition appears to be progressing - [thankfully?] for now it's strictly bulbar symptoms. He has a terrible time clearing saliva, can't eat much in the way of food without coughing up a storm, and can't talk clearly. He still has good muscle strength and can get around.
We're working on getting a PEG tube placed this week. My dad and mom aren't absolutely prepared for it but he has such a hard time with swallowing and has lost so much weight that the doc really strongly recommends that he proceed, without too much more delay. I have read Rose's blog but can't enlarge the pics for some reason (is it because I'm a newbie?). She is a great source of information; thank you, Rose! Does anyone else have any tips or things they wish they'd known in advance before going in for the PEG? I know that he should expect some muscle soreness from the actual insertion and we're preparing for wound care. It seems that finding the right formula is a matter of trial and error. Anything else?
Next, doc recommended that he get set up with BiPAP. I am for some reason really overwhelmed with the info out there about the various masks and flows and all of that. Is there a sticky on this somewhere? Or a post?
We also got Rx for ril uzole but the doc didn't seem too enthused about the modest impact on survival. We're still weighing the cost and side effects vs. the potential benefits.
Thank you, and hello. No offense to anyone, but I am heartbroken that I am here.