Overwhelmed

[buddygeorge]

My wife was just diagnosed with ALS 3 weeks ago. I guess she hash ad it since January. Her voice is very distorted and she chokes and lot. She has lost 95 lbs since January and her fatigue level is getting worse. I guess I just would like someone to let me know if you have this and what my next step is. She doesn't want a stomach tube, but she can't eat. I give her Ensure and make her a ice cream shake a couple times a day to give her some nourishment. Please let me know what some of you are doing and what I can expect. We have been married 38 1/2 years and this is very hard on me. Thanks. :-(

 

[hopingforcure]

Welcome Buddy,
You sound like a caring, kind husband. If she is not considering a feeding-tube, do you have hospice involved? We understand what you are going through, but we have so many informative posts to look through, and we will be here for you.

 

[wacked]

buddygeorge,
Please know that you and your wife are in or prayers. You have been given a lot to "digest" in a short period of time. If she can still swallow, Scanishakes, mixed with milk, have lots of calories and come in vanilla, strawberry or chocolate. You can order them online from Axcan. Perhaps you can find a contact with your neurologist or ALS Association that can help you through the maze.
Hang in there, we're with you.

 

[BarryG]

buddygeorge, I am very sorry about your wife. As I am also someone that can't eat very much of anything I really do wish she would reconsider her decision about a PEG feeding tube. I have had one for the past 9 months and I am absolutely sure that I would not be here today without it. It takes the struggle out of eating and lets me be here for my family.

Pretty much the only thing that I am able to swallow is my morning smoothie which gives me about 700 calories, so along with my formula though my tube I can in about 2500 to 3000 calories per day. Here is the recipe

1 banana (for thickening)
1 package of dry Carnation Instant Breakfast
1/4 cup whipping cream
3/4 cup whole (homogenized) milk
1 /3 cup yogurt
1 tablespoon smooth peanut butter
1 tablespoon ground flax (for fibre)
1 tablespoon wheat germ (for fibre)
1/2 cup frozen fruit (raspberries. cranberries, strawberries or whatever)

Blend well

If you want to avoid dairy you can substitute the liquid Instant Breakfast for the dry and cream and milk.

 

[biskethed]

Hi, my wife started showing symptoms in January too, she had her peg tube put in about 4 months ago. It really made life quite a bit better for her for a little while. We don't have to try to get her meds down her throat anymore. She gained a few pounds shortly after she got the tube in, and her emotional state got a little better. I would suggest that if she is going to get a peg tube, do it asap as there will be a point where she is too weak to make it through the surgery.

 

[mytwoboys]

biskethed,
glad to see your post - been worrying about how you (and your family) are doing....

 

[Zaphoon]

Buddy,

Your wife has lost an amazing amount of weight! The only way to stop the weight loss and fatigue is going to be through the use of a PEG tube. It sounds like your wife has severe bulbar issues and really could benefit greatly from getting the feeding tube.

There have been many that initially decided against getting a tube but after reading several of the testimonies from others on this forum, had a change of heart and are glad they did.

I hope your wife reconsiders for her benefit and yours.

Zaphoon

 

[jolts]

My husband had the PEG tube and it really took the stress out of eating. He could just eat for enjoyment instead of trying to get enough in to give him nourishment. The biggest benefit was that he didn't have to swallow anymore pills! He also had a Diaphragm Pacer put in during the same surgery. It was done by Dr. Raymond Onders at University Hospitals in Cleveland, Ohio. At the time, it was an experimental program, but has since been approved by the FDA. There are many other hospitals that do the surgery now, also. The Diaphragm Pacer delayed the trach and vent for 16 months. I would highly encourage her to get the PEG tube and the Pacer.

 

[Dave C]

Buddy - my wife was DX with ALS this past spring and had uncontrollable weight loss. sysptoms sound similar, she had a peg tube put in August and is glad she did. She has gained 3 pounds back since and said it has helped with fatigue. No one wants to have surgery but I am thankful every day we did.

Hope this helps.
Dave