rone: (invincirone)

This'll have to do until i set up my own publishing platform.  I mean, i could write a Note on Facebook, but that site is pure evil.  Google+ is the Democratic Party analogue to Facebook's GOP; it has a real chance to do things right but settles for not shitting itself or setting things on fire.  This site doesn't exactly cover itself in glory; this posting interface doesn't seem to have been updated since DW was founded and no evidence of a mobile app exists.

Anyway, for the few who are reading this and didn't already read it elsewhere, i'm three weeks away from my 1-year anniversary of the onset of Guillain-Barré syndrome.  I had a particularly shitty case of it and am now finally getting around to walking.  My hands are still not able to touch-type due to weakness, stiffness, and impaired sensation.  Parts of my face are still paralyzed.  I'm going back to working from home part-time on Feb 1.

rone: (anime - (c) 2002 jim vandewalker)



I can stand from a sitting position with moderate effort, as long as I'm not too low (for example, our toilet is very low, so i have to use a riser), and I can walk around using a walker although either Kim or David will follow me around in case I stumble because I am not quite there yet. But I think I'll be there soon.

I've been doing water therapy, which has been great, in addition to my physical and occupational therapy. I have also been undergoing acupuncture, which I'm not yet sold on, but a lot of people have commented on how much more expressive my face is, so that is encouraging.

My hands are still numb, stiff, and weak, so that is the slowest and the most frustrating part of my recovery at this point. Regardless, I am now helping out at home by folding laundry.

rone: (anime - (c) 2002 jim vandewalker)
Exactly 6 months ago, I felt a little dizzy, like I was wearing someone else's glasses. It was annoying, but I just got on with my day. That night, however, I started experiencing double vision while watching TV. I decided to sleep on it, hoping that I would be back to normal in the morning. Unfortunately, the next morning I still had the double vision, and in addition to that, my left leg wasn't working quite right. Upon calling the advice nurse at Kaiser, they recommended that we go to the emergency room. After we arrived, I started experiencing a variety of confusing symptoms, and by the end of that day, I was unable to walk or even sit up in bed.

My diagnosis came in around that time: Guillain-Barré syndrome. It's an autoimmune disorder where the immune system, triggered by an infection, attacks the peripheral nervous system's myelin sheath. In addition to the paralysis it caused, it also affected my autonomic systems, which made a mess of my blood pressure, heart rate, and even my insulin levels. My paralysis was particularly severe, rendering me almost unable to move between my ankles and the top of my head. I required a tracheostomy in order to continue breathing, as well as a feeding tube to maintain my nourishment.

After spending five weeks in the hospital, I was moved to a skilled nursing facility and spent 100 days there, near the end of which my breathing and feeding tubes were removed. I was then accepted into Kaiser's acute rehabilitation facility, which we had been told was very highly regarded; after arriving there, it lived up to the hype and I made much more progress in the three weeks I spent there. I've now been home for three weeks and it feels really good, despite the fact that I'm still unable to stand or use my arms and hands (I am using Dragon for Mac to dictate this).

The road ahead still has a lot of physical and occupational therapy. I am in excellent spirits, however, and will keep working hard to return to normal, or at least as close to normal as I can. Through this all, I've had amazing support from family and friends, in particular my friend Morrisa, my stepson David, and most of all my wife Kim, whom I love more with every passing day.

January 2017

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