After weeks of testing followed by a ten-day stay in the hospital, my dad was finally given a diagnosis for his condition: central pontine myelinolysis. (No, I’d never heard of it before this either.)
What happened? Last April, my dad had a little virus and got dehydrated. Because the medicine he is suppose to take for his low-functioning pituitary gland was out of whack, this dehydration quickly became bad and his sodium level dropped dramatically. This is called hyponatremia. In cases as extreme as his was, hyponatremia often causes death. He was taken to the hospital, where they brought his sodium levels back up to the normal range. When levels drop too low, and then are brought up too quickly — as in Dad’s case — this can result in central pontine myelinolysis.
When these sodium levels rise too quickly, it pulls water from brain cells. “Through a mechanism that is only partly understood, the shift in water and brain molecules leads to the destruction of myelin, a substance that surrounds and protects nerve fibers. Nerve cells (neurons) can also be damaged. Certain areas of the brain are particularly susceptible to myelinolysis, especially the part of the brainstem called the pons.” [quoted from here]
The most frequently noticed symptoms are impaired speech and difficulty swallowing. We did notice the impaired speech a little bit last year but it never seemed to get worse, and my dad didn’t seem to notice. Within the couple of months, however, it got significantly worse and his swallowing began to be severely impaired. He could not swallow well enough to eat or drink properly, which led to his getting dehydrated again (because hypo-pituitary medicines were still not being taken correctly). He lost a significant amount of weight, and at one point, my six-foot-tall father weighed just 126 pounds.
In the hospital this time around, they closely monitored Dad’s electrolyte and sodium levels, straightened out his medications, had him on an IV for fluids, and pureed all of his food to make it easier to swallow. They also did CT scans, MRI’s, EMG’s, barium swallow, and all sorts of blood work. After ruling out stroke, and several other diseases, they were finally able to diagnose him.
[UPDATE in November 2011: at that time, there was much talk about the possibility of ALS; they doctors did not entirely rule that out but believed it to be CPM, as I explained in this post.]
The muscles in Dad’s throat are so weak and slow that the flap in the back of his throat that is suppose to cover the windpipe when he swallows is not able to do it’s job. As a result, he cannot drink liquids because he risks aspirating which would cause instant pneumonia. If his food is pureed, he is able to swallow it, so my sister found a great little food processor that does the job well. The doctors at the hospital want him to agree to have a feeding tube for liquids because it is unlikely that he can maintain a proper hydration level simply by what he eats. Dad really doesn’t want the feeding tube. As it is, he is embarrassed about his speech, and feels like he can never go out to eat again or sit at Waffle House sipping coffee with his buddies. I think a feeding tube would feel like the last straw in attempting to maintain his dignity. The hospital did release him, but with very strong cautions. He is being diligent about keeping up with how much liquid he is getting throughout the day, and will also have follow-ups with his doctors to make sure his medications are properly monitored.
I’ve realized once again that I take so many things for granted. Like swallowing, for instance. I sit here sipping tea as I type this. What if I could never again drink tea? Or a pumpkin spice latte on a chilly fall day. Or a cool gulp of water after working outside in the summer. What about tea parties to celebrate birthdays, or a cup of coffee with a girlfriend? And talking: I do a lot of that. What if everyone suddenly had a hard time understanding me?
It is not very likely that Dad’s condition will improve. I’d appreciate continued prayers for his physical health, but also for him emotionally. This is nowhere near as bad as it could have been, but it still may be hard for him as this has changed his life in some fairly dramatic ways.
Wife, mom, grandma. Introvert who finds joy in good books, sunshine, and authentic conversation. Fitness enthusiast and personal trainer. Often seen with a steaming mug of tea in hand.