Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, August 10, 2015

"Do You Know What The Worst Part Is?"


That's a movement that originated with @speed4sarah.  You can read up on it on her blog

I decided to give it a try.  I would try to give up something that ALS takes from people.  It would raise some awareness.  It would raise some funds.

One thing that really stuck with me when Mom had ALS is that we take so much for granted -- taking a sip of water without choking, working a door lock, talking to one another.  There was such a spectrum of things that I could "give up" for #whatwouldyougive.

Mom still had good grip strength during her ALS but it was terribly difficult for her to lose the dexterity in her fingers.  The inability to work a lamp switch or button a button was so frustrating for her.  More on that later.

I set my #whatwouldyougive bar very low.  I didn't want to fail.  My left hand in a ski mitten  for a day shouldn't be that tough.  I'm right-handed.  I picked a weekend day when I wouldn't have to do my day job. I didn't want to have to ask anyone for help, so I kept it simple.  One free hand would work.  I would be safe driving.  The bar was so low that I felt like a sissy.

Enter Sunday morning.  I put the mitten on first thing.  Immediately I realized I couldn't scratch the dog like she expects every morning.  Not a big deal, right?  On to fix my toast and tea.  It wasn't pretty when I realized that I could not slice my toast the way I've sliced my toast since I was six years old and learned to make my own toast.  Thirty minutes into my experiment, I said, "Boy, I'll be glad when this day is over."  Ninety minutes in, I was totally frustrated.  I wanted my old life back where I could slice my toast my way.

I've broken my right wrist twice in my life and I was never this frustrated (there's that word again).  I decided that immobilization feels good when something hurts and there is healing going on.  That's not how this was.  It was just exasperating.  I couldn't clean my eyeglasses.  I couldn't floss.  My right arm itched.  It was incredibly frustrating.

For my sanity, I decided to try some distraction and went to the grocery store.  It went well until I needed a produce bag.  Ah, plastic bags were my bane all day, at the store, in the wastebasket, on the dog walk.

By late morning I was really hungry and had no desire to frustrate myself more by cooking.  I stopped in a local restaurant that was still serving breakfast.  It was one of the best experiences of the day.  We talked about the mitten and the hashtag and they fixed me a good breakfast that required no knife dexterity.

I had been making a list of the day's challenges and finally stopped listing them.  We take so much for granted.

The first time Mom asked me to help her button her blouse, she asked, "Do you know what the worst part is?"

No, I didn't.

"When I've lost the ability to do something, I know I'll never do it again."

She had buttoned her last button.

At the end of my experiment I took off my mitten.  My life goes on.  My toast is right this morning.  And how many mothers with ALS buttoned their last buttons yesterday?


Please set a challenge for yourself and try it.  Low bars are fine.  Trust me, it's not easy.  And then support

Or give directly to @speed4sarah 's research cause at 
Or give to that supplies technology to those with ALS to help compensate for those abilities that ALS steals.
Or do all of the above.  After all, we take so much for granted.

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