“Sleep is for the weak!”

When I was younger, this was my rally cry as I drove from New Jersey at 4 am to be at work in DC. On time by 8.  It was my rally cry driving home from a weekend white water rafting trip knowing I only had time to shower before hopping in the car for work.  As I get older, I’ve had to add to the saying to adapt for changing circumstances.  I now believe the saying, for who has energy for a rally cry, should more properly be, “Sleep is for the weak.  Without sleep, we all become weak.”

Nights 1-3: O goes to bed at 9 and listens for me to take the dogs on a walk.  This action triggers operation “Night Time Parade.”  The goal of these exercises, carried out with an almost inhuman precision, was to wake any and all in the house and test outer perimeter.  Sleep is only achieved after an hour of being caught and told in progressively more hostile tones to “Go to Bed!”

Night 4: We caught O attempting his night run after stern warnings before bed.  I followed through on threat, and he spent from 9:15 when I returned on my walk till 11:10 cleaning the basement, including a finale of cleaning the bathroom floor around the toilet with a few Clorox wipes.  After getting him to bed, I proceeded to take my meds and give a nebulizer treatment to our wheezing K.  By 11:30, I was ready to declare victory and head to bed after checking on the now sleeping O.  I woke at 5 am. To get ready for work only to trip over O who was sleeping on the floor by the bed.  So much for staying in bed….

Night 5: 9pm. brought the standard warning of Ragnarok should he get out of bed again.  So O spent the hour between 9:30 and 10:30 writing “I will stay in bed” over and over again.  We thought the different cleaning activities must have provided enough stimuli to keep him going the night before, so how about boring him to make staying up even more boring than staying in bed?   After getting him to bed again, I proceeded to take my meds and give a nebulizer treatment to our wheezing K.  By 11:30, I was ready to declare victory and head to bed after checking on the now sleeping O.  I woke at 5 am. To my alarm on my phone, but I can’t find it where I left it.  Evidently O had a midnight call and text fest.  Thankfully all but one text was to my wife, J.  I slept through it all.

 (Continue on next page to find sleep at the end of a hard week.)

Night 6: The Ragnarok threatened on Day 5 has arrived.  O swallowed rather chewed his meds at night to help him sleep.  He was up all night.  He snuck out and colored the driveway and side walk with chalk.  In his mind’s eye he was putting warnings to all robbers.  He took a couple of J and mine shoes to leave outside along with leaving the front door wide open.  J must have interrupted him, as she had to yell him every hour all night long for doing things like breaking the window shades in his room or opening the windows or going downstairs to the kitchen to “get a drink from the fridge.”  The only sleep he got that night was when I lay next to him from 6-7am. But he woke up within 5 minutes of me getting up, so much for getting him to sleep with sympathetic breathing rates.   His therapist was amazed seeing him the next day as he still acted hyper.  J and I thought we may die, though I slept through at least 5 hours of the battles.  I was exhausted.

Night 7:  “You may not go to sleep.  You wouldn’t let us sleep last night, so tonight we won’t let you sleep!” It appears victory may finally be in sight.  We kept him up until 10pm.  The last hour was a sob fest of “I want to go to bed.  Why won’t you let me go to bed?  You always tell me to go there, and now you won’t let me!”  Tough.  Maybe this time when you earn it, you will be thankful to go to bed.  At the end of the day, the nebulizer treatment was completed and the house alarm was set.  With Jake alive, we never needed the alarm because he barked in defense whenever the doors opened.

Night 8: We have the appearance of victory for at least one night.  He was in bed at 9 with only minimal complaint of needing a tissue.

Follow up from earlier posts:

On the tests to determine which drugs are likely to be effective mentioned in http://thelifewelllived.blogspot.com/2012/07/ask-right-question.html?showComment=1344137799198#c7489286398116658829

I asked my neurologist if they were using these tests at Hopkins.  His answer was they are not.  They and others have tried to replicate the tests in the article for T17 versus T1 related MS and the predicted reactions to interferons.  They have thus far failed.  

I also asked about the study showing little long term effect on disability progression using the interferons.  He saw the same reports, but cautions on the impact of those who drop from the test or start taking some other disease modifying drug in the middle.  There is a sort of selection bias for those who never started the drugs over the 10 years.  What portion of them didn’t take the drugs because they were the lucky few for whom MS does not noticeably progress.  Thus that group should compare favorably with those taking the drugs hoping to have the same progression, none.  He said in his years at Hopkins, the advancement in the treatment of MS has come a long way since the 1980’s.  Thanks to the front line drugs, he sees far fewer patients disabled by MS.  While Copaxone didn’t work for me, I frequently attest to being spared by Tysabri to the point of being able to run 5k at lunch on nice days and row it on the nasty hot days of summer.  Knowing where I was 6 years ago with my MS, begging for and being thankful for enough of a break from the headaches to enjoy a week long trip down the Grand Canyon, I have to say luck is still with me.