My husband, Charles, was diagnosed with ALS in September of 1999.  Thinking back, we are sure that he had the disease much longer, as he exhibited many of the classic symptoms long before he received the diagnosis.  He had been hoarse for quite a long time  and underwent surgery on his vocal chords.  The surgery failed because the hoarseness was obviously one of the symptoms of ALS.  In addition, he had developed a noticeable limp and fell frequently.  As Charles was 69 and still working full-time, his co-workers just attributed the falls to his age. 

       Receiving the diagnosis was a terrible blow but for reasons that may be surprising.  The news was delivered by a neurologist in the most unconcerned, unsympathetic, uninformative, point-blank manner:  "Go home and get your affairs in order....You have ALS." 

  We had never even heard the term ALS.  We had heard of Lou Gehrig's Disease, but did not really know or understand what it meant.  We were given no help; no encouragement; no offers of assistance.  We were left to stumble through the medical maze of ALS alone.  Nothing was easy. 

  Year One:  The Challenge

    Nothing happened the way we expected.  We had to fight insurance companies, medical personnel, and medical suppliers for each and every thing that he needed.  By early 2000, Charles had pretty much lost the ability to swallow easily.  So he elected to have a feeding tube implanted.  That was one of the best decisions he could have made.  Meal time became much easier as did medication delivery.  Initially, he was fed Ensure but later was changed to Jevity.  Unfortunately, the liquid feedings resulted in extremely loose bowel movements which continue.   

      In February of 2000, my husband complained of extreme weakness and began to hallucinate.  We did not know what was happening.  After calling the emergency squad, we learned that his blood oxygen saturation had dropped dangerously low.  He was rushed to the hospital and we were given three minutes to decide whether or not to place him on a ventilator.  With no previous thought or discussion on the subject, and no assistance with this decision from the hospital staff, we elected to have him moved to a ventilator.  He subsequently had a tracheotomy and moved to permanent vent dependency.  Taking care of a vent patient is extremely complex, often difficult, very time-consuming, and not something for the weak-stomached.  It is a decision that should be entered into with research, preparation and discussion,  instead of  a three-minute emergency room situation. 

  Year Two – The Coping

    His second year was by far the most difficult.  We made a total of 13 emergency squad trips to the hospital that year for everything from pneumonia to heart attacks.  Vent patients have a much-weakened immune system and are susceptible to all types of infections.  ALS continues its march through his body, and he has virtually lost the use of everything from his shoulders down, although he can still move his arms enough to be able to point to letters on an alphabet board to communicate with us.  He cannot grip things in his hands nor make a fist.  Even the simple task of changing the channel on the TV remote is time-consuming and painstakingly slow.

  Expenses

    The expense associated with an ALS patient is quite a burden.  My husband's current medical equipment includes a hospital bed, a portable ventilator, a suction machine, a Hoyer hydraulic lift, a wheel chair, a rotating air mattress, and large tanks of liquid oxygen which must be refilled weekly.  We have a nurse who comes in for an hour twice a week to check his overall health, and to change his urinary catheter every other week.  We also have a home health aid who comes in three times a week to bathe him.  I bathe him on the other four days, and also see to all of his other personal hygiene needs such as daily shaving and changing his Depends throughout the day. 

    Someone must be with him twenty-four hours a day, seven days a week.  But not just "any" someone.  It has to be someone who has been trained how to properly suction his lungs and care for his various equipment needs.  This severely limits the number of people who can relieve me for any length of time, allowing me to run errands, grocery shop, and attend to my own medical appointments.  At this point, I have five wonderful people that I can turn to for help, but they all have lives of their own.  It is often very difficult to arrange schedules so that I can attend family or church functions.  I have checked every avenue I can think of to try to identify additional home health assistance but have had absolutely no success.  So I go on the best way I know how to take care of him, and try to find a little bit of time now and then for myself, which is rare.  It's a very difficult and demanding situation that I would not wish on anyone. 

  Not Alone

    Whenever I hear of another person being diagnosed with ALS, my heart breaks because I know the long, painful road that they may be starting to travel.  The ALS Society, (with their equipment plan, Walk to D’Feet ALS and P’ALS networking), is a source for the newly diagnosed to begin.  Not only is ALS a death sentence for the ALS patient, but it is a life-changing diagnosis for the patient's entire family.  Life as I knew it will never be the same.