Remember when you were a kid and before a long road trip your parents would say "do you have to go to the bathroom?" Your answer was almost always a quick "no" even though the moment after they asked, you felt a instant urge. We all know the feeling, we've all been there before. Over the past few months I have felt something that needs to happen and I can now say with great confidence and peace of mind that it is time. I have decided to get a feeding tube.
I assure you that I am doing this to be proactive in the ongoing battle against ALS. The disease showed its ugly face almost 4 years ago and after talking to my family and many other pALS this is the right move. I absolutely love great food and wine but unfortunately as muscles in my mouth and throat have weakened the actual act of eating has become difficult and very time-consuming. Going ahead with this procedure will allow me to still eat and drink whatever I want but also be able to easily receive nutrients and much needed a calories.
I know what you're thinking, "I wish I could eat anything and everything I want," and to that I say, "so do I!" Once I have the feeding tube in place I will be able to eat for pure enjoyment again. Malnutrition is a huge factor in allowing ALS to win. As patients begin to lose the ability to chew or swallow their body obviously loses fuel. I my friends, am far too busy to be running low on fuel!
The procedure takes about an hour and will only require me to spend one night in the hospital. This stuff is scary the less you know about it, as are most things in life. Thankfully (I mean that) I am battling this disease now and not 10 or 15 years ago. Although pharmaceutical developments have been more disappointing than the Chicago Cubs, advances in technology and procedures just like this one, can make life more enjoyable.
I have chosen to go with procedure/product that is called the MIC-KEY Button. This has a tube that runs directly from the stomach and is flush with the skin with a small round button this size of a nickel. This option is far more aesthetically pleasing than having an actual tube hanging from the side of small potbelly. This proactive move will allow me to put on some weight, alleviate stress and anxiety, and most importantly to ensure that I will always be running on a full tank!
I have been very transparent about this disease from the beginning and will continue to do so every step of the way. I have an ego too big to let a disease no one has heard of beat so I simply accept this next challenge and will continue to establish a "new normal" on until we discover a treatment.