A Journey of One Day #9 Notes

Friday December 31, 2010        Notes

On Saturday December 25, Christmas night, my symptoms of withdrawal escalated drastically.  The symptoms were extreme rigidity in the torso and violent shaking, constriction in the diaphragm so as to create the illusion of shortness of breath.  It was so scary I had my husband take me to the Emergency Room.  They evaluated my symptoms and asked what I wanted them to do for me.  I said my main concern was receiving relief from the extreme muscle spasms.  At this point I hadn’t slept in three days.  Every time I laid down I would choke and feel like I couldn’t breath.  The shaking would get worse.  So they put and “IV” in and initially gave me 2 mg of Valium.  The muscle spasms were very painful.  After 30 minutes when the symptoms and pain were still present I asked for more Valium and 2mg of Dilaudid.  This did the trick and calmed my shaking and my pain.  It also caused my respiratory rate to drop dangerously low though nobody realized it.  They discharged me.  But as soon as we got out to the car I went into a state of not being able to breath.  They re-admitted me to the ER, gave me oxygen and monitored my respiratory symptoms and heart rate.  After ten hours I went home functioning fairly well.  I mostly slept for the next 24 hours.  They sent me home with a Valium which I took when ever the shaking would come back. My neurologist called me to make sure I was ok. She is still supporting my decision and has referred one patient to read my blog posts.  It seemed the Valium would decrease my movement in my hands so I switched to Dilaudid to help with the spasms and to help with sleep.  I am still able to feed myself as long as someone prepares my food and I can use the bathroom on my own.  Sometimes I need help getting my pants up.  I have bouts of crying and frustration.  But mostly I’m still determined to weather these weeks of withdrawal and adjustments in my brain.  I’m still continuing to read about the experiences of the patients in the Parkinsons recovery group in Santa Cruz which offers me many valuable insights that help me understand the things my body is experiencing.  At this point I am guarded in my projection of my complete recovery as to the exact time frame.  There are so many stages of the recovery process and I’m not sure even with the experiences I’ve read about just how many of these stages I have gone through.  I would like to think I’m nearly through with the withdrawal process.  It has been 45 days or 6.5 weeks since I started the withdrawal.  The experience of others show that it is at least a ten week process.  I had one Bowen therapy during this time on December 28.  I stopped all JSJ and supplements to let my body catch-up.  I decided through some muscle testing to start taking Choline Bitartrate which is the precursor the body needs to make Acetyl Choline.  This is the neuro-transmitter that moves the muscles.  This is an often overlooked Neuro-transmitter.  Dopamine and Acetyl Choline work together.  I am also deficient in Acetyl Choline.

Monday 27 I took 5mg of Valium in two doses
Tuesday 28 I took 5mg of Valium in two doses
Wednesday 29 I took 5mg of Valium in one dose and slept till 4:00 am.
At this point my fingers were not moving.  The muscle spasms have stopped.
Thursday 30 I tried Dilaudid instead to help with the night time muscle spasms and to help me sleep.  It worked well.  An interesting observation I’ve made is that Dilauded effects me differently now that I am off PD drugs.  It used to keep me awake.  Now it sedates me.
Friday December 31 I took 2mg Dilaudid at 4:30 am and again at 10:30am.  I took 1500 mg of Choline Bitartrate at 1:00 pm.  I’m continuing to feel the heaviness in my sleep.  My body temperature still fluctuates dramatically from hot to cold.

Sunday January 2, 2011        Notes

Last night at 10:00 I took 1mg Dilaudid and 1.25mg of Valium.  I couldn’t relax and I had a lot of body pain.  I slept for a few hours.  After that I didn’t do very well all night  At one point I put pillows on the bathroom floor.  I got comfortable there on my side because its warmer in the bathroom and I couldn’t get warm.  I was feeling still tired this morning and woke up with whole body muscle cramping.  Whenever I wake up I do it with a shake.  I’ve read this is common for recovering PD’ers.  It could be better phrased “I shake awake”.  As far as my movement goes, I take small steps unless I really think about it then I can take larger ones.  It’s difficult to lift my arms over my head but I can do it slowly.  Sometimes I can lift a spoon to my mouth and sometimes I can’t.  Drinking with a straw is easier because I can’t lift my cup and tilt my head back at the same time.  I know now that any swallowing difficulty is simply a muscle spasm of the esophagus and is a withdrawal symptom that will eventually go away.  I can smile if I hear something funny enough.  My voice comes and goes in volume.  I have a hard time making the “P” sound.  I can if I think about it and say it slow.  I have a hard time standing up straight.  My arms don’t swing when I walk.  I’ve actually been able to sign my name twice in the last three weeks.  The writing looked like mine but was a bit smaller.  Once I’m sitting its difficult to move my body while I’m sitting.  Unless I have enough momentum I don’t get up out of the sitting position very easily.  I still can’t control saliva very well.  Today I’m feeling increasing body pain and feel very week muscle wise.  This is all to be expected.  It has been seven weeks since I started reducing my meds and three since I have had zero PD medication.  I still cry easily.  That’s a good thing.  It doesn’t mean I’m depressed.  I try hard not to cry though because then my nose drips.  My fingers are not working at all.