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     We typically think of Milestones in life in terms of positive accomplishments.  The first time we crawl or walk.  First words.  Graduations, marriage , etc.  Unfortunately, ALS has milestones, none of which any of us look forward to. 

     Every person with ALS progresses differently.  For some, it starts in a hand.  Some in a foot. Some with speech.  Regardless, there are significant events that occur throughout the process. They always indicate worsening of symptoms.  Such a bunch of crap, if you ask me !

     For me, it has been rather gradual.  Some of them overlap.  Firstly, was losing the use of my hands.  It is not like they just stopped working suddenly.  They slowly got weaker until I could no longer do much with them.  All the while, my arms have continued to weaken.  It has taken about 3.5 years and I am now limited to very minute movement of my upper limbs. 

     The milestone reached in regards to my lower body is movement to reliance on a wheelchair.  While my legs have maintained much of their overall strength, spasticity has made it almost impossible to walk.   It has compromised my balance so much that I cannot take a step unassisted without the high likelihood of falling.  Couple that with no ability to move my arms and I have a recipe for disaster.  Imagine tying your arms at your side and then taking a dive forward.  Yeah, been there, done that.  Not good.  So in the wheelchair I have gone. 

     Decline in pulmonary function is another one I have recently had to address.  As my diaphragm weakens, it becomes harder for me to inhale and exhale.  It gets to be downright exhausting to breathe.  Being in a position other than completely upright makes me very uncomfortable.  Milestone:  non invasive ventilation.  This means that I require a breathing device that provides support so that my diaphragm can get a break.  The Trilogy machine forces air into my lungs and then a lower pressure to help with exhaling. It has been a great help.  The next step will be tracheostomy.  I have already made the decision that when the time comes , I will undergo the procedure.  That means that they will cut a hole in my neck and place tubing connected to a machine that will breathe for me entirely. 

     The next milestone is the reason I chose to write about all of this.  In the next couple of weeks, I will be having a procedure done to place a feeding tube.  At some point, the muscles in the mouth and throat are affected.  This makes it difficult to chew and swallow food.  From a safety standpoint, choking and aspiration are of most concern. Aspiration is inhaling particles into the lungs.  This can lead to infections such as pneumonia, which can be deadly for pALS.  Choking is self explanatory.  When you are unable to swallow, obviously, nutrition becomes a concern.  Hence, my decision.  I am already going to die from this disease.  I sure as shit don’t want to starve to death.  I am not to the point that I require it, but as with most everything with this disease, it is best to stay ahead of the game.  Also, as pulmonary function decreases, risks associated with the procedure increase.  So, rather than wait, I will get it now and be done with it.  The good thing is that it will have no effect on eating by mouth.  I can still enjoy my meals and have peace of mind that I am prepared for the eventuality of needing the tube.  God willing, that will be some time down the road. 

     There are other events that the future probably holds.  Loss of speech and ultimately being confined to a bed are almost guaranteed.  As with all of this, I will adapt and give it hell to my last breath.