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Thursday, January 27, 2011

To eat or not to eat, that is the question.

I have done blogs on my other "all purpose blog" (http://www.justsomeposts.blogspot.com/) about how we Americans are obessed with food and eating. Imagine yourself being told you cannot eat any more solids, nor can you drink any more liquids. That is where we are now.

 We have a new addition to our list of ailments - Dysphagia - aka inability to swallow (or problems swallowing). Since about the first of December, my wife has been dealing with more and more problems related to eating and swallowing. She was (and is) having a lot of problems with both liquids and solids. (for those of you following this damned disease, or caring for someone afflicted - dysphagia is a very common and expected symptom - be forewarned) She has problems doing with her lips, mouth, tongue, and throat what we all take for granted pretty much from the first minutes of life. Using a straw has become a challenge, as she cannot get the muscles of her mouth to do what needs to be done to get it to "suction" the liquid. Drinking liquids directly from a cup is a problem because of lack of control of the liquid and the chance of choking. (another note for those following along - pneumonia is the greatest threat with this disease and is the leading cause of death) Aspiration of the liquid, especially anything other than water, is very dangerous due to the inability to cough. My wife has a pretty good reflex cough, but almost no ability to cough "on cue". Actually, liquids can be harder to swallow than solids because of the amount of "control" required to keep from choking. This was something I had to learn, as it was counter-intuitive to me. Most of us take drinking a liquid to be a given and very easy to do versus eating solid food.

Today we went to the hospital for a modified barium swallow test. My wife had one done almost a year ago and was told other than a bit of slowness with her swallowing, all was well. Today was an entirely different story. She did the test, which involves swallowing (and chewing where necessary) various thicknesses of liquids and semi-solids infused with radioactive barium while having an X-ray taken of the mouth and throat. When we got the results, we were both taken a bit aback. The lady that administered the test, and gave us the results, calmly told us that she recommended that my wife avoid eating solid foods or drinking liquids of normal consistency. She said we should get her nutrition and fluid from semi-liquids of honey consistency (which I have since learned through the internet is an "official" consistency of Dysphagia products). We were further instructed to get her medications converted to liquid form and then give them in a product like applesauce or any "honey-like" liquid. I have also learned that there are a LOT of dysphagia products out there. Meal replacements, thickeners, etc in a myriad of flavors and consistencies. Thank goodness for that.

So, my wife, an American through and through was faced with a life of thickened fluids as food. No more Chinese food, no more fast food, no more fried chicken, etc. Purees and thickened fluids were prescribed. I am not sure of her immediate reaction, but I know mine was one of shock. We have both known this day would come, but it was still a blow. The trip home was solemn and sad. Food is such a part of who we are it was almost like the amputation or removal of a body part. We mourned a bit, and will continue to do so; but this is another loss among many that this disease has caused. So, we did what Americans do - she ate KFC fried chicken, slaw, mashed potatoes & gravy, and a fried apple pie for dinner. We will face the rest later.

3 comments:

  1. I want to comment, but I have no idea what to say. I want to offer comfort, and I don't even know how to do that. All I can say is, I love you both. And I hate this disease.

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  2. I have alot to say but not at this given moment. I am a caregiver 5-6 days a week for a an awsome lady who has msa. I will at a later time discuss this. For now I would like to ask if vitalstim therapy was even offered? If not here's a link http://www.internationalbrain.org/?q=node/50 I've heard alot of good results about vitalstim. The lady I care for has a deep brain stimulator and her neurologists doesn't recommend vitalstim for her.
    Everday MSA leaves you scratching your head, everyday is a different world, a different symptom and a different heartache.
    I'm learning that you have to push the medical field into different approaches. If you haven't already inquired about vitalstim, push, push push.

    lexi21969@yahoo.com

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  3. Maryann,

    I will admit I had never even heard of Vitalstim until your post. I have done some checking since. Although I am an optimist at heart, I do not think the procedure would help in my wife's case (or MSA in general). MSA, destroys the brain's ability to get the "messages" out through the destruction of brain tissue and the chemical detachment of the brain stem. Essentially the brain stem is becoming detached from the brain. That is why balance and fine motor skills are usually the first to go. They both depend on interaction between the reptilian brain and the white matter. Without this connection, those functions are lost. This is even more devistating than a stroke, in most cases. Compare it to a truck hitting a telephone pole and taking down the wire. A workaround is fairly easy in this case. You just need to reroute calls that would have been on those lines. MSA is more akin to a bomb taking out the central switching station. Workarounds are not doable. When the switching station is not replaceable, you cannot restore service.

    Thanks for your comment. I will admit that the vitalstim looked very interesting and promising for patients that can benefit. I would welcome any other insights or comments you have.

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