Barry I am sorry that you are having such a rough time. Is your hand strength and coordination interfering with you being able to do a good job of suctioning out all the guck? Just wondering if it would be better if when the guck gets so bad that having Beth suction might do a better job? I know that you have thought about a trach. so I am sending along an old posting(different forum) from a fellow in similar circumstances who got one and it seemed to improve the quality of his life. Some food for thought. Take care Barry as you are a wonderful person who deserves only the best and not this terrible s***.
Laurel
Posted: Saturday, April 21, 2007 6:16:09 PM on another ALS forum.
hi Anne,,
sorry to hear about your brother-in-law and the problems he has been having . i got als five years ago when i was 48 . i have another option you may not have considered to deal with the choking problem. i had some trouble with secretions and we were thinking about taking a long road trip . we went to our als neurologist and asked him if it was feasible or if we were crazy to think about driving twenty-four hours at this point in my disease. i had been on hospice three months and had decided not to go on a vent. i was using the bipap occasionally at that point. he suggested i consider getting a trach to better manage the secretions. he said it would make life more comfortable sine it would make it easier to suction out the mucus that was choking me sometimes. i had always thought that trachs went with going on a vent but he said that it was not necessarily so. i did ask the question if this would prolong my life and he said no, it would just make my last days more comfortable. well, I'm way into what's comfortable so we decided to go ahead with getting the trach. we didn't think hospice would help pay for that but they did. here i would like to note that there seems to be quite a variation from one hospice to another. we have a nonprofit hospice and it seems they may be able to do more for patients. so i got my trach three years ago. the surgeon warned me before the procedure that sometimes after the procedure the respiratory muscles are so relieved to have a break that they don't work after the procedure. it didn't make sense to me and since i hadn't been using the bipap much i didn't think it would happen to me. i was wrong. it did happen to me and i have been on a bipap since . no regrets. getting the trach has given me good years I'm quite sure i would not have had without it, and hopefully more to come.
if he is having pain he may need a chair that supports his body better. range of motion always feels good too.
for communication i use an eye controlled computer from eyeresponse.com.
blessings, mark
