View Single Post
Old 02-02-2005, 10:57 PM #32 (permalink)
holly's Avatar
holly holly is offline
New Member
 
Join Date: 2005
Posts: 19
holly is an unknown quantity at this point
holly holly is offline
New Member
holly's Avatar
Join Date: 2005
Posts: 19
holly is an unknown quantity at this point
Default

Wow kim
i didn't know your history. that's quite a plateful you have. les' mother just called me and i ended up speaking to her for a long time. i try not to tell her too much, but at the same time she has a right to know.
to quickly answer your question, les was diagnosed 3 yrs and 5 months ago. he still has good leg strength, and arm strength, though no small muscle stuff. writing, eating, buttons, etc. are near impossible for him. he types with the aid of a finger stiffener (one finger typing). his speech is mostly all gone. he had a feeding tube put in in october. i inject 2 cans of high nutrient liquid into his stomach with a syringe 3 times a day. (nearly 3000 calories). i started doing this about 4 weeks ago, the weight was dropping off him so fast i was terrified - but now he has put some back on, hurray. he has lost most of his chewing ability. his tongue and mouth muscles do not function very well. he does eat some solid food, but not much. yes i know what you mean about the drinking. he chokes unless he tilts his chin down and pours the liquid in (the physio calls it a chin tilt - fancy name huh). he is dehydrated alot, and gets kidney stones quite frequently, but most of them are small enough to pass without a hospital visit. he has a terrible problem with the thick saliva, it collects like glue in his mouth. liquid also pools in the little pouch just before the valve that separates the mouth tube from the lung tube, so choking is a huge problem. it's his breathing that is the issue now, can't breathe lying down. needs a machine to help him. his upper back and neck muscles are so weak that even though he can stand and walk, he can't hold himself erect. we got a 'minerva' brace for him today, hopefully it will help - though i know he will be very uncomfortable having people see him in it. at any rate, i should get the rest of my stuff done. take it easy kim, try not to let things get you crazy.
holly
holly is offline