Nutrition

Another trip to the ALS clinic last week  revealed to my neurologist what I knew to be true:  I have been losing too much weight.  To my family the reason was obvious…swallowing has become difficult and choking has occurred frequently.  Choking even once is too much…for me to endure and for my family to watch.  I think it might rank up there with one of the scariest feelings ever.

The good news is that my appetite is strong and food tastes delicious.  The bad news is that the path to get to my stomach is weakening.  Did you ever realize how many muscles are required to actually chew and swallow food before it even enters the esophagus?

I have already made many changes, the first of which was allowing my food to be cut for me.  Choosing soft foods, but not too soft (lettuce was eliminated long ago) and adding gravies or sauces to make everything moist are other tricks we discovered.  Finding the right kind of beverage is another challenge.  Water is vital, but also the easiest liquid to aspirate with.  Thicker drinks are better, but after enjoying something like a milkshake, my speech is really garbled and difficult to understand.

Going out to eat is so much of an effort, it’s almost not worth it.  I can’t even think about trying to carry on a conversation, as all my concentration must be on the task of eating.  And heaven forbid if someone makes me laugh while eating – that’s the cardinal sin!  We actually had to make Parker move to another booth at a Wendy’s recently because we couldn’t stop laughing.  Also outlawed by my wife are eating in the car and eating alone.

So between the neurologist, dietician, speech therapist and Dena,  we decided that it is time for me to get a feeding tube.  Lest you think of the stereo-typical end of life, hooked to a machine…think again.  The PEG tube (if you are curious, watch this video)  is placed during a simple outpatient surgery and the tube will hide nicely under my shirts.  I am not going to stop eating by mouth and I pray that I never have to do so.  However, for now, it will give me added nutrition and make sure I am hydrated.  My energy level has been low the last few weeks and we believe there is a connection.

So on the day we publish this post, 7/2/12, I will be receiving my PEG tube.  Please pray for me that it will go as simply as it has been explained.  For 24 hours after the procedure, I will not be able to eat (except clear liquids) until a follow-up appointment to make sure it stayed hooked properly.  By Tuesday night, I should be feeling full and happy.

This whole new dependency for my food reminds me of the children of Israel.  For 40 years, as they wandered in the wilderness waiting for entrance to the promised land, they depended on God delivering them manna and quail (Exodus 16).  Just enough for each day, with no more and no less.  I am sure there were some people quite content about it, who did as God instructed and gratefully took what they were given.  Likewise, I am sure there were others who felt angry and frustrated with their plight.

I am going to have to make a choice daily as to which way I want to be.

“As for me and my house, we will serve the Lord.”  Joshua 1:8