Chumpy
Active member
- Joined
- Dec 23, 2014
- Messages
- 42
- Reason
- CALS
- Diagnosis
- 11/2014
- Country
- US
- State
- Texas
- City
- Fort Worth
First off thank you for being here! It is the only real place I have found I can go and be understood!
So we went to our 3 month check up. His breathing has worsened some. Feb We were at 81%, May 63% so doctor ordered BiPap, now 61% breathing function with 41% diaphragm strength. He has gone from almost 200 lbs last Oct to 143 lbs now. Of course I am very concerned. He is telling me all the time how exhausted he feels. Plus he can't catch his breath! He started with Bulbar onset. So his speech is impaired, swallowing too. That's why the G tube put in April. He drinks a lot, he is an alcoholic. With me being the messenger to the doctors I have shared this information as well. So he is not really taking the formula the way he should, he refuses sometimes 2 days at a time. I'm lucky to get 2 or 3 cans in him daily.
Plus it seems like it runs straight through him. I am afraid when he drinks he will aspirate, but he insists on drinking. So here's my issue, with all of this, the doctor says he's fine, he walked in here. Really? As long as he's walking I shouldn't worry? With that, does that mean people won't die from ALS unless they have reached the stage of loss of mobility? I guess I'm ranting and frustrated....sorry to be so long winded!
Bless you all, I know even the CALS can't really understand what our PALS are going through, but know we love you and we are here at your side!
So we went to our 3 month check up. His breathing has worsened some. Feb We were at 81%, May 63% so doctor ordered BiPap, now 61% breathing function with 41% diaphragm strength. He has gone from almost 200 lbs last Oct to 143 lbs now. Of course I am very concerned. He is telling me all the time how exhausted he feels. Plus he can't catch his breath! He started with Bulbar onset. So his speech is impaired, swallowing too. That's why the G tube put in April. He drinks a lot, he is an alcoholic. With me being the messenger to the doctors I have shared this information as well. So he is not really taking the formula the way he should, he refuses sometimes 2 days at a time. I'm lucky to get 2 or 3 cans in him daily.
Plus it seems like it runs straight through him. I am afraid when he drinks he will aspirate, but he insists on drinking. So here's my issue, with all of this, the doctor says he's fine, he walked in here. Really? As long as he's walking I shouldn't worry? With that, does that mean people won't die from ALS unless they have reached the stage of loss of mobility? I guess I'm ranting and frustrated....sorry to be so long winded!
Bless you all, I know even the CALS can't really understand what our PALS are going through, but know we love you and we are here at your side!