…continued

HOUSEKEEPING STUFF:

As happens quite often, my ‘typing’ hand goes kaput long before I finish my thoughts. I’m good for about 1-2 pages a day. That’s good, it’s way up from where it was six years ago. Back then, I could only muster enough strength to type a whole paragraph. Plus, that last post was running kinda long, I think that half of you that read it probably dozed off.

Jen asked that I explain that I was kidding about her being a ‘sleep all day alcoholic’. OK – I was just joking. I agreed to say that after she pointed out to me that some of you might not get that I like to kid around and give her trouble. Besides, ever since she started free basing, she gets so strung out on coke that hangovers are the least of her problems.

I’m well aware that any day now she’s going to walk over and power down my laptop, and never turn it back on.

MAIN TOPIC:

OK – where was I? Oh, that’s right, I was talking about the less than obvious annoying and uncomfortable things when living with Locked-In Syndrome. The third, and last thing I want to talk about pertaining to this centers around going to and getting up from – bed.

At night when I lay down for bed, Jen puts these big, blue, goofy looking foam boots on my feet for the night. Apparently the skin on the back of your heels is very thin, making them susceptible to getting pressure sores when they lay directly on the mattress and don’t move for a long stretch of time. These stylish, egg carton looking boots raise my feet off of the bed and prevent that. All I know is that my feet used to burn like hell occasionally and now they don’t at all!

My hands clench into fists and kind of dig into my palms after a while. During the day this isn’t a problem because Jen (or whoever’s around) just bends my hands flat. At night though, we had to come up with some kind of splint to prevent that from happening. We ended up with some PVC connectors and Velcro straps. I think our $1.73 purchase from Home Depot probably saved the insurance company about $319 in Durable Medical Equipment (DME) expense.

In the morning, all that stuff comes off and it feels great. Then she flips my pillow over, that also feels great. Finally, my joints and major muscle groups get a work over. My hands, wrists, elbows, shoulders, ankles, knees and hips all get bent and flexed. After all of this is finished, which feels wonderful, I’m back to “normal” again!

Do I want some cheese with my whine?! After looking over this document for errors I felt that I came off sounding kinda whiny. I don’t mean to. I just wanted to talk about some of the things that aren’t so obvious but affect people like me with Locked-In Syndrome.

By the way, thanks to everyone for leaving such nice comments. Jen and I really appreciate them!