February 22, 2007

Just a little today

I am still drained from the marathon of Tuesday so I will just write a bit today about Joe and the current state of his health.

He just got back from the Clinic on Tuesday, or very late Monday night, and I have yet to hear the whole story from Karen, because when she tried to tell me I was so sleepy that I could not process it and fell asleep in the middle...Alas, narcolepsy still rules, sometimes. But what I do know from Joe is that he is having trouble swallowing his own secretions and though he doesn't need it now can foresee the day when he will need to use the machine he has been given to suction mucus out of his throat so he can breathe. (Sorry folks, if this is graphic, but it's the stuff we live with.)

Last night, he skinned some sausage so he could chop it up like ground beef and eat it easily, which he thought he was doing. Unbeknownst to him he was not actually swallowing it. Instead it was collecting in the back of his throat, in a pouch where he couldn't feel it, attracted by the congealing fat, until a large clump fell into his throat blocking his airway. Luckily, Karen was eating with him that night and could do the Heimlich. She brought up a lump of sausage meat an inch and a half in diameter! As Joe says, it is almost always a mistake that causes these episodes; when he is careful about what and how he eats, he does fine. I suggested to him that one of us eat with him every night and I think he was relieved that I said so, even though he claims that he doesn't panic when he chokes. I am not sure that is true, I think the body is primed to panic when one can't breathe, no matter how often it happens.

We also set up a signal so he can call me if he chokes when no one is around. I'll know it is he from his name on the phone but also from the tune the phone plays when he calls. So all he has to do is call and bang the phone on something and I'll come running.

To get back to his current health: At the Clinic he was given a cane to use when walking but he won't be using it any time soon. Too proud, and I don't blame him. I'm sure he feels that it isn't necessary since he walks just fine. They only wanted him to use it for extra balance, but frankly since he hasn't fallen or had any noticeable problems walking, why rush the visible handicap thing? (That's his point, and I sympathize) Of course, there is NOTHING wrong with being handicapped, but Joe wants to be independent as long as possible and doesn't want to "look ill" if he doesn't have to. I think he's afraid it will change how people think of him and even how they treat him. And frankly I wouldn't be surprised if that weren't the case, despite protestations to the contrary. It can't be helped, I understand that, but people do change when one goes from being perfectly well to suddenly using a cane, then a walker then a wheelchair. I'm just glad it is relatively gradual, so reactions will have time to adapt too. And maybe people will get used to treating him the way they always have, which is what he wants.

His whole right side is getting weaker, so he needs an extension to his nail clippers in order to cut his nails. I'm sure there is such a thing, but where, I dunno. I have to ask Karen if she knows, since she is physically handicapped herself (though mildly so) and knows all about things like that.

Well, this is the best I can do tonight. Hopefully I'll be back on the ball tomorrow or the next day. But I've been running around this entire week, and not getting my needed 8 and 1/2 hours sleep at night. I'm really tired and worn out. I don't like to go out somewhere every day, and it is not of my choosing that I do. Next week is even worse, in fact! Damn, something has gotta give. I can't take this kind of schedule. Well, enough of that, I'm signing off now. TTFN

Posted by pamwagg at February 22, 2007 07:55 PM


Dear Pam,

Whenever you write about Joe and his physical problems I'm always reminded of how very much I take for granted. Joe is coming to terms with what for most of us would be a nightmare and yet he does so with such courage. I admire him and hope that I can be as brave when it's my time to go.

Posted by: Kate K. at February 25, 2007 04:45 PM

Dear Pam:
The Vermont Country store carries extended toenail clippers, especially for folks who cannot easily bend down to reach their feet. If you will email me your address, I will be delighted to order a pair for you to give Joe.

Thank you so much for your recent support for me and K. He is doing MUCH much better. Insight has been restored and he is saying the meds help him, that he cannot go without them.

I have been at this long enough to realize that this is a very fragile transition. While I know that the battle may be won, the war is not over. I'm not sure he won't consider himself "cured" and once again decide that meds are not needed any more.

But I encourage him, praise his courage, and remind him that recovery is mutifaceted, that it's the combined effect of meds PLUS structure, therapy, and avoiding all toxins that have gotten him to this good place.

I think of Emily and her feathered hope, singing its clear but elusive song.

Much love,

Posted by: ava hayes at February 23, 2007 09:05 PM

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