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.
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Oh, I am so sorry but glad it is not as bad as it could have been. I definitely will continue praying for all of the dynamics involved! Love you. {Hugs}
Tina Savasuk recently posted..Baby Weight – A God Story
**{ prayers for your dad}** thanks for sharing so that we CAN join you in prayer.
Hugs, Deanna
PS- I always enjoy your homeschool update posts, and it seems that the hybrid school is a really cool oulet to plug into Lyndsey’s ‘Home’schooling.
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I am so sorry about your father but glad you are finally getting some answers – prayers for him and your family.
Hugs
Michelle
Wow. I’m so sorry about this. I’ve heard of CPM and was always completely paranoid about treating low blood sodium (in my former life as a family doctor), but I’ve never actually seen a case of it.
I’ll be praying for your dad. I can understand about his not wanting the feeding tube, but it sounds like this is a case where it could be really useful. No one would have to know about it when he’s out and about. But, I know his life is already complicated by the speech stuff and the dietary restrictions.
Catherine
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says:
Wow. I can’t imagine the possibility of having a condition like that that might never improve. I can’t imagine how your poor dad is feeling right now. I’m praying for a miraculous recovery for him. (((Hugs)))
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I am so sorry about all this.Your poor dad – I can only imagine how difficult this must be. I’m glad you finally have the answers, and am hoping that there will be a significant recovery.
Thinking of you.
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Oh Jamie, having just gone through a serious illness with my own dear dad (and his subsequent death) I feel so sad for you right now. Our fathers are oh so precious, aren’t they. With my dad the most important thing for us was to do what he wanted, not what other people thought were best for him. Often he made the ‘sensible’ decision later on his own. I say let your dad decide whether he wants a feeding tube. Like Catherine says, no-one need ever know when he is out, but ultimately it is his decision to make.
Just my two bob’s worth, of course.
Praying that God will surround you with his loving arms today and continue to uphold you, your dad, and your extended family.
Please, can you keep us updated? Thanks.
Your friend, Jeanne xxx
I have glad that your dad finally has a diagnosis. Somehow it seems to make things a little more tolerable. Maybe it is because then we know how to pray “specifically”. Life is full of unexpected twists and turns and I have learned to never take anything, especially life, for granted.
It is true that we take for granted swallowing and being able to eat normally. My mom went through daily radiation treatments to her throat for 30 days and it totally messed up what she could eat. Lost about 25 pounds and lived off of ensure. I am so sorry for what your dad is going through and hope and pray that it will improve.
Blesssings to you and your family.
Diane
Hi,
I am so sorry for what your dad is going trough. As I am reading this, I am wondering if your dad could drink if he thickened his liquids? My baby, his flap doesn’t close, and he has to have his liquids thickened…and when I say thickened, it is to the consistency of pudding almost. You can get the thickener, and it has no taste to it. I am sure it would be weird to him at first, but he would still have the tastes of the drinks he loved, and if he could get to where he could drink that way regularly, then maybe he wouldn’t need the tube. If his foods are pureed, then I would think the thickened liquid would be about the same consisitency.
I had a foster son that had a feeding tube. It was very small and discreet, maybe it would be the same for an adult, and if he had to get one it would be for nutrients, but he could continue to eat other stuff puree.
I am not trying to compare him to a baby, that hasn’t spend its whole life enjoying eating and drinking, not at all. I can’t imagine him having to stop doing all those things, how frustrating for him. I did hear of someone I know having surgery to have that flap repaired, would that ever be a possibility for your dad?
I will be praying for him, I know this has got to be so hard.