Tuesday, 26 March 2013


It was tough getting up this morning, tough showering. It takes longer, it's harder to do, the results are conspicuously less than ideal. This whole "starting the day" thing is rapidly losing its appeal. The trials of heaving my legs out of bed, wobbling on my walker to the bathroom, struggling with my socks, battling with my underwear, yarding on my jeans and tugging on my shirt - all of this takes an inordinate amount of effort.

By the time I was up and dressed this morning I was ready to go back to bed. I was exhausted. It has probably taken me a half an hour to recuperate. Even now my shoulder hurts from pulling to hard to lift myself and my dead legs out of the tub. My neck muscles are cramping from pulling to hard through my arms. Even my fingers feel tired.

The problem with ALS is that everything you can imagine takes longer and is more difficult, except the fun stuff. It goes too fast. Think of the simplest daily activity, like putting on your socks. When you put your socks on, assuming reasonable health, you simply reach down and slide them over your toes. Your toes push in, spreading your socks as you go. Once past the heel, you simply pull up.

For me, even the first part doesn't work that way. I cannot simply lean over and start at my toes. When I lean over, I fall off the edge of the bed. I have an "M" rail on the edge of my bed at home, but even with that brace I cannot hold on; I need both hands to put on my socks, just like you do. So I have to lift up my legs. At my size and weight, each of my legs should weigh about 45 pounds. Even with muscle loss, they probably still weight somewhere in the range of 35 to 40 pounds. Try lifting that to cross your legs!

But cross I must, so I lift one leg up and cross it over. Having lifted, I rest for a moment to catch my breath. Then I grab a sock, assuming I remember to have it beside me. On occasion I start this process only to have to restart it after unwinding my leg and reaching out for the socks that I forgot to put close enough to grab. So let's assume all is well in this instance. I open the sock and slide it over my toes, only my toes don't wiggle; they simply curl up under the pressure of the sock sliding over them.

So I open the sock wider. Eventually I manage to work it over my toes and onto the body of my foot. Even with this, the difficulty doesn't stop as all the while I continue to ensure my leg doesn't slide off and slump back to the floor. That happens often enough, since I have no muscles to hold it in place; it's a balancing act while seated. Yet on I go, sliding that stupid sock ever upwards. Finally, with effort, I manage to get it to my heel and gratefully at this time I can drop my leg, since the rest of this activity can be done one-handed, the other hand being occupied with holding on to whatever I can so I don't slide off the bed in a lump.

One sock is on. Now I do it with the other sock. Then I rest before heading onto the next process - pants! Notice I did not mention my unmentionables. Underwear is just too exciting to share.


  1. You can forget the socks soon as flip flop/sandal season is just around the corner. Take care. Don't strain yourself doing little things. Save your energy.

  2. I saw how badly winded you were after all the effort of showering and putting on your socks. It was heartbreaking to have you leave this morning. I so want to help but can't. Anonymous it takes muscle to wear a flip flop and Rick has no muscle left in his feet and legs.
    love you my dear son

  3. lulu {{{ hugs }}}