I continue to hold my own as we search for a cure for my ALS.  I started a new treatment in December that has had some success with ALS.  We are hopeful that it will work for me.  So far, we’ve seen some small improvements.

The activities involved with having ALS are well integrated into the daily “going-ons” of our family. Each member takes their turn feeding, shaving and brushing my hair and teeth. Linda does the bathing and dressing, for obvious reasons.  And she and Lexy share driving me around.  Thanks to my sisters picking up one day a week, Linda drives the two hour round trip to my treatments only twice a week.  This one day relief for Linda is helpful.

I’m not the one most affected as a result of my ALS.  For sure being sick is the pit’s, but, as a result all I can’t do is done for me.  Great care, expense and deference are taken to assure my comfort. I look at Linda, Lexy and Dani and how their lives have been altered.  Of no fault of there own, they had thrust upon them a responsibility most will be fortunate to avoid.  How many teenagers get up extra early to feed their parent before they go to school? Linda’s life is centered on my care.  Her level of subordinated self concern to mine is far greater then I ever perceived a caregiver needed to do. The saying that you can’t truly understand someone until you walk a mile in there shoes, to me, rings true.  The demands on a caregiver are relentless.  It has been a revelation how so.  Yet she and the girls remain optimistic and cheerful. They are a blessing to me.

The installation of the peg line (feeding tube) was the right move. I’ve gained weight and we are now back on offence after several months in almost complete retreat trying to deal with all the changes.  It had us worried that the day after the peg line was installed I caught double pneumonia. The days stayed in the hospital were a bit traumatic, a real test of my manliness. It has taken months to get stabilized. It has been only recently I could do email without one of my girls helping. I still use an on screen key board clicking one letter at a time. But its good to not need help.