just a spoonful of sugar

a question posted by a fellow ataxian on the naf page caught my attention. tina asked about swallowing, about any meds that might be available for swallowing problems. here's the deal about ataxia...it doesn't just hinder your balance. your vision. your speech. your coordination. it can steal your ability to swallow. i would gladly sacrifice my coordination  for maintaining my swallowing abilities but we don't get to trade our skills. we get to 'wait and see.'

shortly after my ataxia diagnosis, i choked on a piece of steak. in a restaurant. with a friend and her daughter. it was new year's eve and everyone was celebrating and nobody noticed. even my friend was oblivious. in her defense, i have a chronic cough so she didn't suspect anything.  standing, gagging and turning blue didn't even catch the attention of the hostess or the wait staff.  miraculously, i managed to cough up the offending morsel but my throat ached for over a month.

one neurologist assured me that i could perform the heimlich manuever on myself if need be. i simply had to throw myself against a sturdy chair. i tried that. my odds are better if i throw myself against an oncoming vehicle. when i brush my teeth, i sometimes stick the toothbrush against the back of my throat to see if i gag. i still gag and i find that reassuring. i had a swallowing test this past september, eating weird combinations of food textures: honey, marshmallow, sausage and a variety of mystery foods. this was done very early in the morning on an empty stomach...but i passed the test and  i cried with relief. although howling, the wolves were kept at bay.

the reality of this disease is that swallowing can become compromised. at the end, my sister, cheryl, had to drink 'thickened' liquids and she hated thickened soda .but weakened swallowing can lead to aspiration pneumonia.  a feeding tube may ultimately become a necessity. i love food. i love growing it, cooking it, eating it. it is a major part of my life. but food shouldn't provide more to me than sustenance. food is food. it isn't love. it isn't comfort. it isn't acceptance. besides, a feeding tube beats the alternative. :)