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Cyn, I totally agree with what others have said about the feeding tube. There is a very small window of time and if your DH agrees to have it put in and the doctor recommends it, don't wait. My BIL decided to not have it and once he couldn't eat anymore and could only get down small sips of Ensure his body rapidly declined due to lack of nourishment even more than from the effects of ALS. This man weighed about 180 lbs before he got sick. When he passed he weighed 103 lbs. He would have been around much longer if he had had the feeding tube according to what his doctors said. But he made that choice and I understand that. Your DH's health seems to be declining much more slowly than my BIL's but I'm sure it seems fast to you and him both. I looked up the date of your first post about this. By this same time period my BIL was in much worse shape. His was fast progressing. From your posts I think your DH has the slow progressing type which is more common. Some people have lasted up to 8 to 10 years although the average is 5 to 7 from some reports. In my opinion the longer a person can live with whatever todays medical procedures can give, the better the chance of some really smart person finding a cure for this terrible disease.
It is my prayer that it will happen sooner than later.
You both are in my thoughts and best wishes.
A wonderful, thoughtful and informative post Robhu! Good advise and I appreciate it. I do believe this next clinic we will have to talk to the Dr about the feeding peg. We watch my DH's weight very closely and he has done pretty well at remaining the same with a little weight loss when he was sick but the Dr was not to concerned with that small amount of weight loss, a couple of pounds. As you all know the problem is his breathing and you are correct that there is a point where the Dr's will not want to perform any kind of surgery if his lungs are a problem. We will discuss it with the Dr that will be doing the surgery.
You now.....I just went to hand my DH the camera so he could take some pictures and when I touched his hand it is so cold and his fingers are distorted from the muscles dieing....oh how I wish there could be some new cure or even something to slow this disease down. It is beyond sad to watch. Who knows, maybe a cure or some kind of therapy is just around the corner!
Last edited by cynwldkat; 10-13-2013 at 10:47 AM..
Love ya too NMS! Am a little concerned over "Whitey" DH's cat. He's been acting like he is starved lately--I am thinking worms and will be buying deworming medication tomorrow! Can't afford to take him to the vet but he acts pretty good except that he is so hungry all the time and is not gaining weight from all he eats. Maybe he is just lucky? Ha! It is frustrating because in CA I had vets to work with me and here I am pretty much on my own....unless I want to pay which is difficult now. I guess I thought I had learned so much and could manage on my own with my animals but then something pops up where I sure could use that professional opinion! If for nothing more then to give me some peace. There are different problems here in NC then in CA--different worms etc. So I suppose I'll just try the obvious and do some trouble shooting with him...sigh....if it doesn't feel right I will call the vet!
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Who knows, maybe a cure or some kind of therapy is just around the corner! 
