Monday, April 4, 2016

Progress, mostly forward. (Go to the bottom and look at the update)

wLots of news today. I had an appointment with my neurologist Dr. Myrna Cardiel. I will get to our meeting later. But I was really excited to go see her, not just because she's a great doctor but because it's been a while since I've been in the building where office is. It is also the building where I did the bulk of my outpatient therapy. And I wanted to say hi to my physical therapist. Really.

(If you're reading this, and you're one of those people who recovered from GBS, CIDP, a car wreck or whatever go back and visit your physical therapist. It will be worth it for both of you.)

I was really lucky. First, because my access ride got me to my appointment 90 minutes early. Second, because when I went to the 15th floor she wasn't with the patient.  Yeah, it was really good to see Jenna again. When I first started therapy with her I was barely able to stand on my own. I had a walker but didn't even use it. I wasn't bragging when I told her that I am regularly running a mile, or walking seven. And totally ready to cover 13.1 miles in the Brooklyn half Marathon in May. I was thanking her. Because, like I've said before, physical therapists get you to do things you thought you couldn't do.

But I also had a real physical therapy question. To the left is an image somewhat like the ankle foot orthotics that I wear in my shoes. I am not really that good at lifting my toes as I walk, so these keep me from tripping over my own feet. I have foot drop.

I told her that I'm not running much faster than I am walking. And I really felt like these orthotics were putting the brakes on me.

"YES. Those orthotics are to help you walk, not run. When you run you lift your leg with your quad andthat is fine now.... Maybe you should go back to where they may be orthotics and see if they could make one for running, or just try running in your running shoes."

Holy shit, I can do that. JUST. RUN. IN. RUNNING, SHOES.

Dr. Cardiel also told me to try to do something I thought was impossible. I looked at other people standing on their toes and didn't even know how they did that. I gave up, but she told me to just take off my shoes and see if it can be done. I can stand on my toes

By the way, to the right IS a picture of those orthotics in action as the sun was setting in Prospect Park. Go Achilles Brooklyn, YEAH!,

Then I went upstairs and saw my neurologist and she basically said the same thing. My quads and hamstrings are back to normal, which means they are stronger than the normal person's quads and hamstrings.

But my upper limbs, not so great. I'm getting a little more movement and a little more flexibility in eight out of 10 of my fingers.  However, due to the lack of nerve function in my hands the tendons in the big knuckles are stiffening and keeping my fingers straight. While at the same time the tendons in the smaller knuckles are bending inward. I have some grasp but I am developing what they call claw hand. Notsogood.
In order to attempt to to reverse that process I wear these contraptions on my hands for up to an hour two or three times a day. They don't hurt at all, and I usually take a nap, because I can't do much else. Once a week I go to Occupational Therapy where they bend my fingers until I cannot bear the pain. Hopefully, when the nerve function returns I will have some working fingers to deal with.

However, both my index fingers have a problem. They have actually slid out of their knuckles. Without knowing it at all I have two dislocated fingers. They don't bend that much when I put them in the contraption. So, 20 months after stumbling into my doctor's office I now have to make an appointment with a hand surgeon. Oh joy.

There is more news. Throughout my life I've always worked my way up into management. I am now lower management in the world of GBS. I think my official title is person of contact or liaison officer, and I'm unsure what I'd like to be called. But if you fill out this form, on the GBS– page, and you're from Brooklyn I'll be the one getting back to you. I guess I am the chair of the welcoming committee to the club that you never wanted to join. This is my new email address:

Update April 1. This is not a joke. Yesterday my doctor told me to try to run without the orthotics. It sounded crazy because it's hard to walk without them. I come so close to tripping over my own toes. But a couple hours ago I tried it. Below is the Facebook status that I didn't think I was gonna be posting for years. Thanks to a physical therapist who told me to try something that I didn't think I could do.

Holy fucking fuck.! I just took off my orthotics and ran.

Park Slope Armory YMCA
Fitness CenterNew York
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Another update April 4

Last week I took off my ankle foot orthotics and ran back and forth a little hallway. Today I nervously took them off and stepped onto the 200 m track. Until I took my first step I was nervous after two steps I knew how Dorothy felt when she woke up in Kansas.

1 comment:

You do not have to be nice!


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