Linda,
As a bulbar onset pals, you should discuss with your ALS clinic getting the peg tube soon. The bulbar symptoms will only progress and you don't want to be in a position of trying to gain back weight you've lost instead of just trying to maintain your weight. Believe me, I know. I lost about 15% of my body weight before I got the feeding tube. My surgery didn't go well and I lost another 10% of my body weight during my hospital stay (that is by no means the norm, most peg procedures go off without a hitch).
When I returned home, I had absolutely no appetite. My primary care doctor put me on Megestrol 625mg Suspension. My appetite came back 10 fold. I have been steadily gaining weight back. Unfortunately my drug plan won't cover the drug so I have to shell out $350 per month but it's worth it. You should also consider getting a Vitamix blender and start blending whole foods. It is so much better for you than processed formulas. Right now, I only use my peg tube for liquids and meds. I can't even take a sip of water. However I can still eat puréed foods and I so enjoy it. Plan ahead Linda. Get the things you will need before you need them. We can have long periods of plateaus or have drastic progression over a few weeks. Get what you might need later now.
My best to you,
Vince
