Tx Daddy's Girl

Hi Daddy's Girl,

I hear everything you're saying. Cost is a factor, of course. And, you will no doubt be crushing up his pills eventually and mixing them into something liquid. If he has a peg tube 'installed' he can be fed both food and meds through that.

My wife has decided against having one, and will wind up basically either starving to death, or chocking on her own saliva/phlegm. I know this sounds grim, but this is her decision......in other words, she doesn't want not be kept on life support, when it will not keep her alive (much longer) anyway. She will fight until the bitter end, but she knows the disease will win. It's her choice as to the peg tube, Bi-Pap, trach, etc.

I would selfishly want her to stay as long as possible, but at the same time, I will honor her wishes.

200 character limit, I'm probably over.

Hi Tx Daddy's Girl,

The DP is, in fact, a lot of supplements, but they can all be diluted in any liquid. Most of it is in a powder form to start with, and the pills are in capsules that can be taken apart.

We ordered the supplements, thinking that my wife was going to try them, but after they arrived, she backed out on me. She couldn't face the additional 'stuff', and was afraid that she wouldn't be able to eat regular food for lack of appetite.

She doesn't eat much at best, has lost a lot of weight and can't face the idea of filling up on the supplements.....so they are sitting in our pantry right now. It cost us $316 for a one month supply, using just the top 7 or 8 items on the list (the ones that are highlighted, and do the most good).

Dbltree is the go to guy for info, as he has the most experience. However, he is also pretty fit still, and is willing to do the exercises that go along with it. In my opinion, if any part of it helps, it's well worth it.

Hang tough,
Steve

Keep in touch and let me know about your dad. I know you will be a big help and support for your dad.

Thank you so much! We are in Beaumont and his neuro and neurosurgeon both said Shaibani but when I went to my MS dr (I've gone to UT neurology for 13 years) she told me she had never heard of Shaibani and Appel is the best. At this point, we are going back to the appointment on the 19th and if we get the diagnosis my dad has agreed to use Appel. After reading this forum I lean more towards BFS and cramp fasiculations but once my dad said muscle loss (which I haven't seen - he's an hour north of me) I'm so worried about ALS - my dad has been convinced he has had it for over a month but your mind plays tricks on you so I'm hoping for the best.

I will keep you and your husband on my prayer list. I don't wish this on anyone.

Just read your post and sorry for what your dad and your family are going through. I live in Houston and my husband was diagnosis in 2011. He goes to Dr. Appel in the medical center on Fannin. He has a wonderful ALS clinic and staff that has helped my husband. They will guide you through each step and this forum has helped a lot too.