Ablutions – bathing and toiletingEach of these areas contains their own challenges and milestones as the disease progresses.
Transportation – including walking, driving, etc.
Consumption – eating and drinking
Communication – oral and written, verbal and non-verbal
Recreation – everything from sport to channel-surfing
In this post I want to elaborate on the drinking aspect of ‘Consumption.’
Drinking fluids has become more and more difficult for me for a number of reasons. I can no longer drink normally from a glass, but I can drink through a straw with someone holding the glass for me. Also, I need to hold my head at a certain angle when I drink. However, because the muscles in my neck have weakened considerably, I now also need someone to hold my head at the correct angle while I drink. So it now takes 3 people (me plus 2 others) for me to drink a glass of liquid. At first glance it must look more like I’m being attacked than helped!
Even with all this help, I still have to concentrate on what I’m doing in order to avoid choking on what I’m drinking. I can’t drink plain water anymore because it’s too thin, so I either have something mixed with the water or have something thicker like fruit juice. I’ve tried thickening agents in water, but what they call ‘tasteless’ still tastes pretty awful to me!
As a result of all these factors, it usually takes me about 10 minutes to finish a small glass of fluid. In spite of this, I try to finish at least 5 glasses of fluid per day to keep myself hydrated. Otherwise, I feel even weaker, my eyes become quite dry and my saliva becomes thick and plentiful.
And by the way, when you combine an increase in saliva production (due to slight dehydration) with weakness in the muscles of the lips and tongue, you get one of the most irritating consequences of this disease: drool. Yes, it’s a bit gross, but it’s a reality I’ve had to get used to. Initially it bothered me a lot, but then I recalled something that helped me put it in perspective. I remembered seeing a motto printed on the bib of some friends’ baby. In large, bold letters it read, “SPIT HAPPENS!”
