Thank you for your reply Al. We were told today that it is possible that my loved one now has bulbar als. There is some discussion of feeding tube. He is going to have a test to check the swallowing. I have never in my life seen a disease like this. There are no words to describe this. I hope a cure is found soon.
My husband was diagnosed in Jan. of 2004, he can still walk, is very weak has speech problems his hands are almost useless he eats only chocolate and milk shakes, well once in a while he will eat a small meal, he has considerable pain and can swallow his meds using a gargling method. Well he seems to be getting Indigestion a lot and feels nauseated, he does not have the strength to vomit I am guessing and has a weak cough. We do have hospice and they help, he has no bi-pap/c-pap or feeding tube although he has kept his weight with the chocolate and Ice cream, I guess my question is does anyone else have these problems? I worry about choking and asperating. Any sugestions?
I am sorry you are in this. I worry about the choking also. My loved one is having trouble now with food getting stuck. It is frightening. We are waiting for a test to be done to see how the swallowing is.
Your Husband is at the same stage as my eating/swallowing. I have an appointment in two days at my ALS Clinic; first thing I am going to ask for is PEGG (feeding tube). Your husband needs real nutrition for all the muscles that are still working (compare your drinks to the food pyramid). I was an idiot for postponing this almost too long. A feeding tune will do nothing to arrest the disease process, but it will greatly improve his quality of life. He can eat real food through his feeding tube. I do not want Ensure & Boost. I want to use my juicer and vitamixer blender (to mirror the food pyramid). Doctors best argument for not eating food is the feeding tube will clog. That is the most simple problem to solve. Demand prior to surgery at least a 26 french size feeding tube. This was recommend to by a fellow PAL; He said that he never had a problem in thirteen years with this size of tube. He was certain food is a major factor in his longevity.
Adaptive equipment restores some degree of independence and improves our quality of life.
There are better days ahead for both of us! (least more nutritious).
He refuses the tube, he has from the beginning. He has also had a 4x heart bypass and 2 heart attacks. before his diagnosed. He had his first heart attack at 39, bi-pass at 40 and another heart attack at 41 at 43 he was diagnosed with ALS. A year ago he went off all his heart meds and started smoking/ he had always smoked at times but increased it once he went on disability. Smoking has become a challenge with his hands and arms being so weak. It could be his biggest fear not being able to smoke, he now rests his elbows on a table so he can hold his hands near his mouth, he does burn himself a lot. Smoking is only allowed outside due to the fire factor. Anyway the heart burn and stomach cramps are tearing him up.
Thank you for letting me vent.