A common question this time of year is “What do you want for Christmas?”. As a person living with ALS (PALS), I have a simple wish. I want to be treated as a PALS.
Tomorrow will be another new beginning in my ALS journey. I will be getting a feeding tube. The PEG procedure is only supposed to last 15 minutes. I’ve heard from people who have them and it doesn’t seem to be a big deal. I think I am looking forward to it in some ways.
PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach. PEG allows nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth and esophagus. (ASGE, 2017)
Taking medicine should be easier. I can put it right in the tube. It’s definitely better than coughing and/or choking for 15 minutes trying to clear my throat. I will be able to talk and eat at the same time. Talking by other means than my mouth though. I can even sleep and eat! I want to see you non-PEG people do that!
I am not usually surprised by much in life. My husband has been trying to see excitement in me for a long time. It’s just not me. I’m sort of a matter-of-fact person. When I was diagnosed, there were no options. So why get overly upset or excited? I had to accept it. And even though the feeding tube is an option, it’s one that I will accept. It’s my way of not giving into the monster that is ALS. Believe it or not, there can be more to life than eating or talking. I’ll let you know what more there is in future blog posts.
In the meantime, I will try to take in all in stride. At this point in my journey I think all the hard work is falling on my caregiver, Joe. I see his struggle as a labor of love, but labor just the same. There is no road map to follow. Everyday with ALS is a new adventure. A new attempt to rip his heart out.
The sun will come out
Tomorrow
So ya gotta hang on
‘Til tomorrow
Come what may(excerpt from Annie – Tomorrow lyrics)
References
ASGE, (2017), Understanding Percutaneous Endoscopic Gastrostomy (PEG), retrieved December 11, 2017 from https://www.asge.org/home/for-patients/patient-information/understanding-peg
Annie – Tomorrow lyrics: MetroLyrics, (n.d.), retrieved December 11, 2017 from http://www.metrolyrics.com/tomorrow-lyrics-annie.html#/ixzz50zYzYehQ
ALS and ME 