He cannot talk, walk, eat by mouth, control bowels/bladder, and as a tracheotomy. I always wonder with him if his cognitive abilities are intact. Does anyone know about this disease? Would he still understand everything going on around him? Thanks A rapidly progressive X-linked genetic disorder - affecting only boys - usually between the ages of four and ten, adrenoleukodystrophy (ALD) is a member of a group of diseases called leukodystrophies, that cause damage to the myelin sheath of nerve cells. This is the insulating envelope of myelin that surrounds the core of a nerve fibre or axon and facilitates the transmission of nerve impulses. There are three basic forms of ALD: childhood, adult-onset, and neonatal. The childhood form of the disease is the classical form and is the most severe. Childhood ALD is progressive and usually leads to total disability or death. Prognosis for childhood and neonatal ALD patients is poor because of the progressive myelin degeneration. Death usually occurs between one and ten years after onset of symptoms. There is a test for cognitive ability associated with this disorder which is done using Magnetic resonance spectroscopy. The details are technical and I will not discuss them here, except to state that each patient has different results and therefore there is no way of knowing the answer to your question without the assistance of the test.
I add a link which has some details of this disorder
http://www.betterhealth.vic.gov.
au/bhcv2/bhcArticles.nsf/pages/
Leukodystrophy?OpenDocument
Hope this helps
matador 89 You're welcome. Glad to have been of help.
m.89 Report It
Based on the fact that I've been sick and watched an obscene amount of TV last week, including two episodes of ER in which this illness was a plot element, there's reason to believe that many, maybe even most, cognitive abilities are still there.
For that reason, the characters on the show continued to read aloud, turn on the TV, play music, and otherwise provide entertainment for the character who could no longer communicate his needs, desires, etc.
Of course, I have no idea if ER takes liberties or does good research, but it seems the kind thing to do for the staff to leave the radio or TV on for such a patient. It can't hurt and might help the time pass more pleasantly. |
