Sleeping is overrated

This is night 3 without sleep. Casper has had ongoing Rapid Eye Movement Sleep Disorder and Rapid Eye Movement Sleep Behavioral Disorder. Those are lots of words for "watch out- I may hit you and not know it, I will be talking and nightmaring and not know it, and there will be no sleep in this bedroom tonight even if my eyes are closed."

I called our neurologist today. He already knew I had diagnosed this in Casper. I did so by watching videos on YouTube. How else does one get a diagnosis these days? When I called today and told Sandy, his nurse, that I was using pillows to protect myself, and that I was driving but not sure I should be, she emailed our doc. A few hours later we had a new med. Klonipin. Side effect- sleepiness. But wait- side effect- insomnia. What???

So I ran across the county today to get it filled. I brought it home. I prayed. And an hour after bedtime I got Casper the prior sleep med, because she was still wide awake. This is what the PD websites say:

"Sleep problems may be an early sign of Parkinson’s disease, even before motor symptoms have begun. Some of the common sleep problems for Parkinson’s patients include:

• Insomnia
• Excessive daytime sleepiness
• Nightmares
• Sleep attacks (a sudden involuntary episode of sleep)
• REM sleep behavior disorder (acting out dreams during sleep)
• Periodic leg movement disorder (PLMD)
• Restless legs syndrome (RLS)
• Sleep apnea
• Nocturia (frequent nighttime urination) "

Doesn't that sound fun? (From the National Sleep Foundation website.) Casper cannot sleep. Last night she had such vivid dreams they were real when she awakened. I have bruises. These are the suggestions:

• "Keep a regular sleep schedule, going to bed and getting up at the same time each day.
• Take sedating medication late enough in the day so that you don’t get an increase in symptoms as you are trying to sleep.
• Use satin sheets and pajamas to help with getting in and out of bed.
• Minimize beverages before bedtime to help avoid nocturia (frequent nighttime urination).
• Get exercise and exposure to light early in the day. "

Those would be great- except PD causes excessive sweating. Satin? Not so much. A regular schedule? Casper can't tell what day it is, what time it is, where she is. No matter how many times you say it, it changes ten minutes later. Meds for sedation? Cool. Except they do not work. And benadryl is not allowed. The reality? Nothing works, and we are so sorry. Today's call included a reminder that the new meds would cause increased confusion and falls, and a suggestion that I not fall asleep. Then a chuckle that confusion was already here. so that would not be new. It was not said unkindly. It was an acknowledgement that we have apparently officially entered the "life sucks" stage of this ugly disease.

And so tonight we talked again. Casper was tearful that I am now working three jobs to keep this place going (and to really enjoy my career), and that she cannot work. It included her worries that she might be irrelevant. It included my response that her arms around me made this all worthwhile, and a reminder that all of our close friends are actually currently facing life changing realities of their own from illness. And it included a serious discussion of the things we might change (more walks on the beach, more time in the pool, better nutrition) and those we can't. It included a reminder from me to her that Linda was her age when she died- and that I never, ever considered doing anything for Linda other than loving her gently out of this world. And a brief suggestion that Casper might consider more time with me and a dip past the baptismal font at church. That went... nowhere.

So tonight the new meds are not working. Old ones have been added back for our sanity. I have an early morning tomorrow with Chloe and work. And this weekend we will be headed to Laguna. Because quality time does matter. Way more than meds.