Tuesday, January 5, 2016

Back to church

First, a little review. On May 7, 2014, about 20 months ago, I walked into my doctor's office complaining of weakness in my feet and hands. She quickly diagnosed me with Guillain-Barré syndrome and told me I better be in the hospital. They admitted me, and by that evening I couldn't walk at all. The paralysis overtook me and waves and after a few weeks I was we diagnosed with chronic inflammatory demyelinating polyneuropathy. After the third setback I was finally diagnosed with acute motor axonal neuropathy. So I have an extremely rare variant of a very rare illness. For most people with GBS and its variants the immune system attacks the sheaths of the nerves. Not in my case. For reasons still unknown, my immune system attacked the nerves themselves, the axons. And, to keep this even more unique only the motor axons. So one could say I'm a little lucky that my sensory nerves are not affected. This condition does not cause me any pain. (But please, don't be the one who says I am lucky because I'll kick you in the teeth.)

Before I continue, let me enumerate some of my recent accomplishments.

Not so much with the belt
  • I helped locate the mile markers for race in Prospect Park. In doing this I walked the entire loop of the park without the use of a cane.
  • I can hold a bottle or it can. This means I can stop drinking beer with a straw.
  • I can get on and off an Eck Stress O Ride bus without using the lift. Getting down that steep flight of stairs was the challenge.
  • I can get out of bed, put my own pans on and brush my teeth. (If the pants have an elastic band)
  • I'm okay being alone in my house for a few hours.
  • I moved the wheelchair to the back of the house. It's been a while since I used it, and I can't imagine using it again.
  • The real big deal of the week is that I was able to get in and out of a public bathroom to take a piss by myself. The funny thing was, that the stall door got stuck and I couldn't pull it inward to open it to get out. I had no problem asking someone to give it a little push to free me.I probably would've had that problem two years ago, as well
I've always been a few standard deviations out of the normal zone. So there's more uniqueness about my condition. When most people think about paralysis they think of someone in a wheelchair. That's not the case for me anymore.

My lower limbs have been healing much faster than my upper limbs. I still have severe foot drop. But, with the help of an ankle foot orthotic I can walk further than most people. I'm not as fast as many of my friends, but I'm told I'm as fast as a tourist in New York City.

The device to the left keeps me from tripping over my own toes.

If I'm planning on going to a crowded place, or use mass transportation or think I'm going to be going down a staircase I take a cane with me.

The biggest challenges of my day come from the fact that might upper limbs are not healing that fast. My triceps are okay but not so much in the biceps or anything south of the elbows. That means I have a hard time holding things. Things like spoons, keys, doorknobs and pencils or a real challenge for me. A challenge, but not a stopper

With the help of a universal grip, I could use a fork, spoon or a pen. It's not that pretty when I eat and my handwriting was never that great. I'm about to change the doorknobs to my apartment and from the apartment to the street to one with a bar instead of ones that are round so I can get in and out without help. Also, the pushbutton combination lock will replace the key.  As far as the computer goes, 99% of what I do comes to you courtesy of voice to text. Thank you Dragon.


In the gym I use a thing called active hands. With them or another kind of split that just keeps my wrist rigid, I can get an upper body workout on almost all of the resistance devices. As for the legs, I have no problem using all of the gym equipment. On some of them I'm pushing as much weight as a "normal" person. I just need some help adjusting the seat level or moving the pin around on the weights.

Oh, more about my hands. It seems they are suffering some additional collateral damage. The muscle atrophy that has set in due to the lack of nerve function has allowed the tendons in the big knuckles to stiffen up so my hand will not close into a fist. At the same time the tendons in my small knuckles will not allow my fingers to straighten. So the occupational therapists have a lot of work to do. They sent me home with a pair of contraptions that I get to put on my hands multiple times a day. It might look painful but it's not. And in fact it's a moment of Zen. Because my wear them I really can't do anything.


And I just joined the new gym. It's more than a gym. I joined the Park Slope Armory YMCA. I was there on opening day and wrote this blog post my running club. When I walked in there with my carer. I paused in the doorway to take it all in. The smell of it. The sound. It all came back. She is a person of faith, and since I am a rabid atheist we often tap heads. I looked at her and said," this is my church, this is where I gather with my people, and get advice for my spiritual leaders." She looked at me and nodded with understanding.


I took this picture almost 6 years ago, on January 11, 2010

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