|Chrystie Lose, aka Twysted Sam
The experience of enjoying a meal invokes great pleasure for some, while for others, eating is approached more like a chore they must get through. I have always enjoyed food, from sharing an intimate meal with my husband to a holiday feast with family and friends, from a home-cooked meal with my boys to lunch out with a good friend. I am also known for enjoying a meal all by myself in a quiet corner of a cafe with a good book. I have generally enjoyed positive associations with food and, while I have been known to overindulge, I would say my relationship with food has been mostly healthy.
In a recent conversation with my neurologist, he asked if I was considering getting a feeding tube. I said that I have thought about it, but I have not felt ready to make the decision yet. I have done a little research, I've talked it over with my husband, asked questions of my friend with ALS who had a feeding tube placed at the end of last year, and still I have not decided how I feel about it for me, because ultimately, it is a personal decision that I will have to make based on how I want to manage my life with ALS.
The benefits include maintaining proper nutrition and hydration, therefore, keeping one's body properly hydrated and at a healthy weight for as long as possible. The need for a feeding tube arises as chewing and swallowing foods and liquids become more difficult with the degeneration of muscle strength and control in the throat, neck and tongue muscles. As the muscles weaken, there is concern of severe malnutrition and the possibility of food or liquids being aspirated into the lungs, which can lead to pneumonia.
My doctor explained things I hadn't considered, like the fact that it is easier to place the tube in a person who is still strong enough to withstand the surgery without the added complication of a severely weakened diaphragm, for example. He explained that once the feeding tube is placed and the initial surgery site is healed, the protruding tube can easily be replaced by a half-dollar-size piece that sits flush against the body for comfort and visual discretion. He also explained that even with the feeding tube, patients can still eat and drink normally as long as they are able, and many people use the tube only to supplement nutrients or take medications in the beginning. Once a patient is no longer able to swallow, the tube is already in place and the transition can be a smooth one.
In the past six months, I have lost 10 pounds and while a small part of that may be muscle deterioration, the rest, honestly, is from no longer overeating and instead eating smaller meals and snacks throughout the day. While I cannot eat all the same foods I have always enjoyed (no more salads, chips and salsa, or fajitas), I have adapted and made new discoveries like sushi, pulled pork and cinnamon dolce cappuccinos. I am not currently underweight, and if I lost another 10 pounds, I would actually just be at what is considered the "healthy weight" for someone of my age and height ... under normal circumstances.
With a degenerative disease like ALS, there are many difficult things that must be considered, researched, discussed and eventually decided upon. Whether or not to have a feeding tube placed in one's body is just one of these serious issues. With each issue, the choice has to be made with the additional consideration of how it will affect my quality of life because, for me, there is more to life than merely existing. To me, there is a difference between the value I put on my life versus the quality of my life, and since there is currently no cure for ALS, quality of life is an important consideration.
With the feeding tube, it is more than the difference between not wanting to give up eating real food and not wanting to die of starvation, which I don't imagine is very pleasant. There is a question of whether having the feeding tube will allow me to maintain, or even improve, my current quality of life, or are the risks involved and the changes that would be required to my lifestyle things that would degrade my quality of life to a point that I find unsatisfactory?
ALS has many different onsets, different progression paths, a different time frame for every person it invades. For each of us, it seems to personalize itself and, therefore, each of us must make our own decisions on how we will deal with it.
No one else can decide better than I can as to how I am to face ALS. Whether or not I feel a feeding tube is right for me is an important, personal decision and one only I can make after serious consideration.
About the Author
In 2012, I started the year as a 42-year-old woman with seriously curly hair, blue eyes and a growing medical concern. My speech had deteriorated to a point that made me very hard to understand. One day, while getting lunch at my favorite taco stand, I gave the name Sam for my order. Sam was easy for me to say and, hopefully, nobody would ask me how to spell it. (People are always asking how to spell my given name, which I can no longer say clearly.) So now I am Sam to the new people I meet.
Then, in April 2012, I was diagnosed with ALS. With that devastating news, Twysted Sam was born and I started this blog where I can vent, share and just be me. For all of you who are interested in my ramblings, I hope you get something out of this too, even if it’s just a good laugh or cry or whatever. So, the journey begins ...