Sunday, June 27, 2010

Safe words

I know. I haven't posted in a while.  I blame my crazy lady.  She has been trying to get her body settled into a plateau, and it is not cooperating.  She wanted to resume physical therapy rehab, but no one will touch her-- it's that "physically unstable" and "activity causes your seizures and AD" crapola, yet again.  Oi. If she wants to take the risk and just do it, why won't her health practitioners support her efforts?  Geez.  CL can't find a co-dependent to enable her desire to walk.  They are, to quote CL, "running scared."
I know.  They have every right to avoid the risk.  It's dangerous, and no one wants to be responsible for (yet another) trip to the ER because she can't empty her bladder for over 14 hours. CL is frustrated, but we all need to learn:  Safety comes first.
Still, patience is not a virtue that she inherited, or learned.  The good thing?  I am learning new tricks!  One of the most amazing things about my watchfulness is my ability to recognize CL's seizures.  They are complex partial seizures, and even the health care professionals have a hard time recognizing them.  She doesn't have involuntary spasms, when she has her seizures.  Instead, CL loses time.  She freezes, stares, and will sometimes repeat the same phrase over and over again ("Is there a monkey in the room? Is there a monkey in the room?")  I can sense them about 2 minutes before they start, and I whine and push against her body, even when she is laying in bed.  It gives her enough time to set a 10 minute timer. If the timer goes off, I push a large button on the remote control.  The remote triggers a system freely set-up by the State of California. It calls the Operator.  If CL is unresponsive with the Operator, then the Operator dials 911.  Here's the remote activitated phone:
Here I am, practicing my mad seizure alert skills:
Pretty cool, huh?  It took about 1 hour of training to learn how to use the remote, and we practice, practice, practice (after CL disconnects the system, of course). We also use a "safe word," in case of emergency.  CL says this word, and I immediately press the nearest remote with my nose.  Yes, I am an awesome, powerful, smart bitch-- and, CL knows it!
Next step?  Learning to ride Para-transit, so I can go with her to appointments.  The seizure alert training demands that I always watch CL, when working.  The buses won't let me on the wheelchair ramps; and I have to remain out of eye contact with CL in a sit/stay on the bus for about 5 minutes.  So, we are trying different methods with the Para-transit authorities, to find a way for me travel with CL.  If anyone in the SF Bay Area is available to help with the training, please drop us an email at We can't pay cash-- but, we can provide dark chocolate chip brownies!

And, another moment of Zen under our apple tree:


Mango said...

You are one amazing little gal. Taking care of the CL. It must be frustrating. Can't blame the health care providers for having a CYA mentality, but how does one move forward with no place to help out? Take good care of both yourselves.


Khyra And Sometimes Her Mom said...

Do woo think she'd benefit by khoming to Khamp Khyra?


Pibble said...

I wish I lived nearby instead of in Connecticut. I'd do it for time with Sugar in lieu of cash or chocolate chip brownies! You are one special pooch, my dear!

Kari in WeHo said...

you are such a special pup

Wild Dingo said...

wow... Sugar, you are worth your weight in gold baby! YOu can dial a phone and to save your mom, or order a pizza. awesome.

that apple tree rules! love the lanterns on it.

and yes, I've been MIA. long boring story. but we miss you and CL.