My Mom

I’ve heard a lot of people say their mom was the worst in the world and some say she was the best in the world.  The ones who claim the worst usually have no real life experience to compare to and those who say they have the best obviously never met mine.

My mom definitely deserves the crown.  I simply would not be who I am without her.  She lived with severe rheumatoid arthritis and chronic fatigue syndrome and managed to graduate college, work and raise me and my disabled brother, while still making sure to take the trips she wanted to take with us.  But this isn’t a page designed to just tout her greatness; it’s designed to continue a mission she put me on in 2006.

My mother died on May 10th, 2009 due to Amyotrophic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig’s Disease.  This page is one small way of continuing our battle together, even though she’s no longer here.

What is ALS?  And why is it called Lou Gehrig’s Disease?

It’s called Lou Gehrig’s Disease because of Lou Gehrig, of course, a famous baseball player who came down with the disease in 1938, diagnosed in 1939.  Since then, a lot of research has gone into ALS and yet thousands of questions remain unanswered, including what causes it and how to cure it.

I could give you the technical definition but that’s far too boring.  I figured it would be more personal if I just told you how mom’s path progressed.  ALS is still a huge unknown and two patients can have rapidly different progressions, but this is how mom’s went:

Around early 2005, mom started having trouble with her balance.  She would trip when ordinarily she wouldn’t have.  She felt some minor weakness in her legs that grew progressively worse.  In 2006 she visited the Mayo Clinic in Minnesota twice and in October was officially diagnosed with ALS.

The doctors did not want to tell her she had an incurable and fatal disease, but my always organized mother was way ahead of them.  She’d done the research and figured out what she had before she was ever given the final pronouncement.  But with the official word she could tell me, and when she asked if I would continue to live with her, I agreed.

The doctors said mom’s progression was focused in her lower extremities and therefore she might live longer.  Maybe three to five years, maybe ten.  The “advantage” of lower body symptoms is that the disease might take longer to harm internal organ function.

Mom did fairly well on a walker for a while but when she started fearing that she might fall, she moved to a manual wheelchair.  She would use whichever one felt right at the time.  ALS was slowly killing off the motor neurons in her body and as they died, the brain stopped communicating to the muscles.  Without impulses from the brain, the muscles started to atrophy and die.  It took some time before she started feeling weakness in her arms and when she wasn’t able to lift herself out of her manual wheelchair anymore, she started using her electric wheelchair full time.

In 2008 she started having breathing problems and her lung capacity started to lower.  You need muscles to breathe too and ALS is indiscriminate.  Mom started to fear that she would suffocate and be unable to move to let anyone know or to save herself.  In December of 2008 she had more reason to worry – she stopped breathing and had to be rushed to Little Rock.  While there a feeding tube was inserted for times when she had trouble swallowing.  Yep, ALS doesn’t want you to be able to eat either.

Complications from the feeding tube insertion caused us to spend several harrowing days in Intensive Care.  By the end of that trip I’d come to terms with the fact that mom’s eventual death would not be a bad thing for her.  It would be a mercy.

We adjusted to life with the feeding tube but mom’s condition continued to deteriorate.  Eventually she couldn’t move her legs at all and could barely lift one arm.  She couldn’t sit up without the special headrest on her wheelchair.  Not only was it hard to eat, she didn’t really want to.  The body was telling itself it was nearing time to shut down.

One night toward the end of April, 2009, a caregiver took mom into the bathroom, where she had a tremendous breathing attack.  It took us several hours and a lot of Morphine drops and Lorazepam to get her calmed and in bed.  Two days later she went into hospice for the last time and after a week of relative calm and then several days of trying to find the right balance of medications to keep her out of pain and anxiety, mom woke up from her near coma to mumble to us.  We told her we loved her and we knew she loved us and went back to sleep after she did.  Sometime in the next hour, she went to sleep for good.  The night nurse came in and woke us up and after over two years, mom finally looked peaceful.

We call ALS “The Monster” for a very good reason.  It’s a horrible disease that causes you to lose all muscular capability.  You can’t move, you can’t breathe right and you fear what might come, but your brain is totally unaffected.  That’s a monster.  It torments you and makes sure you always know exactly what’s happening.

That’s the reason I made this page.  So little is known about ALS.  Money and time is needed to figure out how to kill the monster.  If you want to donate to the cause or give as little as an hour to do an ALS walk sometime, visit the MDA’s ALS chapter.

My mother handled it with grace and courage to the end.   Hopefully there will soon be a day when no one has to worry about The Monster again.