Friday, June 10, 2016

als - the "no hands diet"

I currently refer to how I eat as “The No Hands Diet.” 

The idea behind this is that you cannot use your hands.  At all.    Every meal, every snack and every Costco sample you eat is given to you by someone else.  If you are checking out a bowl of peanut butter m&m’s you can’t have any until someone picks one up for you.   

Hypothetically let’s say you are at a party with a fantastic spread of food, and quite suddenly, you become aware of how people around you eat and eat and eat.   The entire time you are thinking, “All I want is an m&m.”   So you ask someone for help and they kindly say, “Of course.”  Then the person licks some guacamole off of their fingers before taking a handful of those m&m’s.  THAT kills your appetite pretty darn quick.  

Moving on.

I initially got on the No Hands Diet because my arm muscles are weak, but what if a person begins to have difficulties chewing and swallowing and find themselves choking on food.  Then there is the option of a Percutaneous endoscopic gastrostomy (PEG).  This is a flexible feeding tube that goes through a person’s abdominal wall into their stomach.  Nutritional supplements and fluids are poured in the tube bypassing the need to use your mouth.

Going back four years ago this fall, I found myself trying to decide whether or not to get a PEG tube.  At the time I didn’t feel like I needed it because I could eat well enough. But, I also didn’t want to put the procedure off until it was my last resort.   At the time I could still (very slowly and with increasing difficulty) feed myself.  I also didn’t want to get one because, for me, it was admitting the disease was progressing and I wasn’t strong enough to fight it.  (I realize the flawed logic now…)

In a very uncharacteristic Janae move I was proactive and I decided to get the tube.

While it is a relatively simple outpatient procedure, having a hole cut through your stomach wall does make for a painful recovery.   

I have had the tube replaced twice (in the same spot as the original, so no new hole)  and those times the follow-up recovery was easy. 

I resented the tube for quite a while.  I hated looking down and seeing the outline of the tube under my t-shirts and would try to wear clothing that disguised its presence.  It was rarely used that first year.

Now it is not a big deal at all.  It is just part of the way things are.  There are times where I am exhausted and it is nice that Jeff can just pour a can of “food” in and just be done.  I will add that even though those 350 calories per can are handy, it often leaves me with a slightly queasy feeling.

Since I have a BlendTec blender, we occasionally blend up real food to pour in.  We have to add a lot of liquid in order for the blend to go down smoothly. There are also various recipes online.  

Coming back to today, I average ½ my calories through the tube, ¼ via a smoothie or nutrition drink and ¼ my calories come from normal food.  Those calories, in their various forms, are all part of my No Hands Diet because now there is no way I could feed myself.  I’m grateful for the many people who help me.

Last week Jeff and I went out to dinner and we ordered the soup of the day. It was a Porcini Coconut Emulsion garnished with fresh chives and a coconut crouton.  I didn’t know what to expect but it turns out this soup is what dreams are made of.   There was no chance of that going in the tube.  I savored each spoonful.