Walking with MS and The Sundance Kid: Trying to Move an Atrophied Leg

Thursday we tried a shorted height to the walker. That change did ease my arm use, but I needed to turn back sooner. My helper, friend, former caregiver, Angie, and I discuss each walk after I collapse in my lift-chair.

We discuss and brainstorm what can be improved. There is always something new to try. Angie has become my Sundance Kid. She is 29, divorced with two beautiful, smart kids. I met her when I first hired her to be my private caregiver. Then we became friends and she would do anything for me. She really wants to see me walk again. We are in sync.

My idea of getting volunteers through Craig’s List was amazingly successful, but I had no idea how little time would be involved, too little for someone to drive to my assisted living facility and spend 5-10 minutes, then drive back, for a check that might bounce. I couldn’t take such kind people on my possible wild goose chase. Angie has faith in me. She is like a sweet angel gifted to me from the wild universe. We have goals, a plan of action, and there is no chance of failure because if I become stronger in any small way---I win. Already I feel stronger.

After visiting the bedridden, beautiful and brilliant woman with MS where I live, my resolve to continue on with my walking scheme was made stronger. Yes, a scheme indeed, my secret, crafty plan and scheme also means: “a representation of the astrological aspects of planets at a particular time.” (Merriam Webster) My blog name is Stellarlife, not stellar life, purposefully a new word which encompasses the grandeur of this state of being (LIFE) and the belief I hold with Carl Sagan, that we are the stuff that stars are made of. My astrological planet alignment is good for leg rising.

Thursday we lower the walker height and this felt better, but my stride was still not smooth. This was followed my various exercises after Angie left. Karenlee is still asleep and I am left alone to ponder what has just happened. My thoughts go back to 1990 and my diary entries: “Where will I be in 5 years? 10? Or 20?” All of my diaries or journals since ask this same question. Will I be bedridden? Able to speak in short breaths and barely turn my head? Still curious about the world, yet knowing I am not a part of it?

Friday we moved furniture around (and by “we” I mean Angie) until there was a length of wood floor to roll easier on. Fighting the rollator wheels was stopping my smooth strides each time, perhaps getting off the large area rug would help. Angie put ribbed socks on my slightly swollen feet, and off we went.

This time it was smoother on the wood floor, but my back betrayed me as it started to hunch and prevent my hips from lifting. I had to turn around sooner and getting over the edge of the rug in front of my landing strip was extremely difficult. Angie had to pull hard to lift my left leg over the rug and my heart was beating fast.

We decided next time, Monday, we will move out and back without turning around. I will begin sitting for hours with a pillow forcing my back into a more straight position. Before we begin I will do different stretching of my calves.

Angie is so positive and encouraging, always saying how well I did. I am more realistic---I did ok. The best thing happened Thursday night and I hope again tonight.

You see, some years ago my brain forgot how to walk. I sat in the lobby of a huge medical building and watched people walking to and fro. For an hour I watched, trying to allow my brain the chance to see what it was to do. I wrote on paper, “Right leg out, swing opposite arm…” and so on, then I carried the notes and used them with two canes. That was the only way I could walk in 2004. I would stop-action walking scenes on my TV, replay them in slow motion, over and over again.

Thursday night I dreamed that I was walking. It was so real that when I awoke I stood up and walked normally across the apt., then I woke up for real. But, the feeling remained. My brain is on board. It wants to join Angie and I! Often I have told it to think about walking again, but it balked, preferring puppies, flowers, sweet clouds…now? I believe it gets the message. The three of us will make the stars shine so bright that the firing of my synapses will pale in comparison.

Sweet dreams. NOOO I mean, Good Night dear brain, dream well.