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.
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
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 6 months, I have lost 10 lbs 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 lbs 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
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 vs. 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 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.