Karen, I know how hard it must be for Don. Loosing those things we used to do is difficult, but sometimes better. For instance, I used to smoke, but now...no more. That was due to this disease, or the disease was due to that, or maybe it was interrelated. Anyhow, no more smoking, drinking, coffee, and a lot of other stuff. However, he is still alive and with you. That's a good thing. And you are an angel for doing all you are doing for him. When I had my peg in I was using 4 cans of 350 calorie per can Ensure-type drink. I also added Instant Breakfast to the first one to get an additional 100 calories to start off my day. I was 210# when I started the treatments and am having trouble maintaining 150-155 now. Been off the peg for about a month. Don is doing well if he is maintaining at 167 or so. If you want more calories, though, get the 350 calorie liquid. That should help. I envy Don the ability to play golf. Since my neck dissection, my shoulder is so sore and stiff I can't imagine swinging a club any more. Maybe some day in the future. Maybe the physical theropy I am taking will help. At any rate, the two of you are in my prayers, hang in there it will get better. I can't believe sometimes how much better I am than I was only a month ago.

Karen, Bob didn't have surgery or a peg tube. He had four weeks of radiation once a day and two weeks of radiation twice a day., Chemo was given on first day, twenty first day and last day of radiation then two sessions of chemo for five days every three weeks. He got so sick that they didn't give him a third session. His radiation ended in December and chemo in January.
He coughed and choked for a long time but that has lessened in the past three months. He would love to drink water but everything has to be nectar thick.
In April while recovering from the treatments he developed pnemonia and had a heart attack. so he has been a very sick man. he went from 170 down to 125. He is just starting to get stronger and gain weight. He has gained about 1-1 1/2 pounds a week in the last 12 weeks. I read that if you are under weight and under nourished, you need about 3000=3500 calories a day and 100 grams of protein. I give him protein powder in his drinks to increase the amount of protein in his diet.
While on home care from the heart attack, he received in home swallowing therapy. It was this therapist who recommended Vital Stim. Doctors never mentioned it but did give me a prescription for it when I requested it. If you can find a hospital near you that does Vital Stim, You can go to one of their doctors for the prescription if you had to. While doing this therapy, they tell him to clear his throat and swallow before he takes food or liquid.
I use Ensure with instant breakfast, ice cream or protein powder to make the drinks 600-700 calories with what ever he is eating.
This has been a long road to travel but we are seeing improvement every day. I hope this Vital Stim works for him so that he can eat regular food again. Eileen


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Thanks Kirk and Eileen,
Kirk, Don's shoulder is bad too, but the fact that he can't pull his arm back as far actually helps him slow down his backswing for more control! Dr. called it "Therapy!" He got a 41 on the back 9 last week. He use to be a 8 handycap but has "slipped" to a 9. Oh, and I was corrected It's not the masters, it's the PGA Championship at Whistling Straits Country Club. You should really go hit a couple balls just for fun. You might be suprised! Eileen, He can't eat or drink anything..the calories have to go in the PEG. I did talk him into one extra can per day for a couple days to see if it brings his strength up some. I fear protein powder or anything other than the formula could clog the tube. Great idea about getting the referral from a Dr. at the hospital where the treatment is. There is one in LaCross, 1 1/2 hours away but we can do that. His daily rad treatments were 2 hours away... (and that didn't work!)We'll be talking to his swallow therapist about it on the 23rd. I wish it was sooner. If he gets a little more impatient, maybe he'll decide to head down there sooner. I can't wait. This is the only hope we've been given. (Although Don was never told how little hope there is)Thanks for all the info. Keep me posted how things are going, and I'll let you know when we start the Vital Stim.
Karen

Hi Karen, We didn't have success with the Vital Stim. Last week after 9 sessions they did another swallowing test with the electrodes on and it showed no improvement. They were tempted to tell him not to eat any food for fear of aspiration, but since he has done so well and is gaining weight, they told him to eat pudding thick foods. The food in not such a problem but all his drinks have to be very thick. We are discouraged and I wonder if he will ever eat normal food again. His problem seems to stem from his soft palate which is now rigid. We will continue what we are doing and pray that he does not develop pnemonia. This Vital Stim is supposed to be successful for most so don't be discouraged by our results. Eileen

So sorry to hear your news Eileen, thanks for keeping me posted. Unfortunatly we wont be able to try the Vital Stim now anyway, at least for a while. I'm so frusterated and feel so helpless again... we went to Madison last Tuesday and some of our worst fears are already upon us. Please go to the caretakers board for more info because this will start a new thread.