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.

This is where we're at

I promised an update and a "real" post in my last abbreviated one. So, even though I still am not sure what to write - here we go.

The disease continues it's advance. My wife is at a point now where swallowing is a problem at times. We sometimes work for 10 minutes on one pill. The good news is she does not have to take much. We have cut out the vitamins and supplements, it became too much of a hassle every day to get them down. Also, between her jaw problems (TMJ, see previous posts) and the swallowing, we have to be aware of her nutrition. Especially without her supplements and vitamins. Thank heavens for Boost.

Speaking is pretty much gone now. She will croak out something from time to time, but mostly she talks in a whisper. With my poor hearing that means a LOT of repeating and questioning. I feel like we are playing 20 questions a lot of the time. We do have a speech therapy session scheduled for next week. I am not sure what can be done at this point, but we will try. It has to be frustrating to her to not be able to communicate. I know it is for me on this end. We do have an eye blink system set up for yes and no questions. I felt like that was "giving up" at first, but it definitely helps. I decided some communication was better than none.

Her life pretty much revolves around her recliner and the TV. Her eyes and concentration do not allow her to read. (she had trouble focusing her eyes and they have a tendency to dart around - another wonderful part of this disease) Her tremors and lack of ability to move make using a computer out of her reach as well. Throw in the above problems with speech and that leaves TV watching as her pastime. The lack of speech even makes using her phone an impossibility.

I really had no plan today, so I guess that is it. I thought I would at least update things. I would still like some responses from any and all that read this out there. I see by my statistics and such that there are some of you from all points in the northern hemisphere. Drop me an email. If you are going through this disease as a patient or a caregiver, I would love to hear from you. If you have questions, ask. We'll be here.