Treatment Update and New Learning

So they say that the brain is relatively “plastic” meaning that new associations can form within it over time, over the synapses between cells, even structures.  This can make a critical difference in the long term outcome of traumatic brain injury, seizures, stroke, toxicity, and disease processes affecting our central nervous system.  Thank goodness.  I might just make it out of this neurological illness with something good?

New associations can form in the brain via various mechanisms:  learning a new skill, subject of study, or behavior (such as breaking a habit and replacing it with another).  Utilizing memory can draw together old and new centers of the brain where information is stored.  Sensory stimulation from the five senses and movement also have an impact as each stimulates different centers in brain stem and cerebral cortex.  Movement increases blood flow to virtually all of the tissues of the body including the brain.  I understand that all of these activities but new learning in particular, can help slow down the onset of age-related dementia.  Never stop learning folks . . .

My own ability to learn new skills appears to be improving.  I have volunteered to help a  friend finish her website and continue to be the Assistant Editor of the quarterly Canoe News magazine of the United States Canoe Association.  Both require learning how to use software programs I had only heard of in the past; never used them in my occupational therapy career.  Cool beans.  Thank you Lord for these projects and my ability to tackle them!  When faced with a problem to solve, my attitude of late has been more of, “I’ll figure it out,” than anything else.  I like it!

And in general, the seizure attack episodes that I have suffered daily for 5 years are trending downward again.  Thank you Lord again!  My Doctors have transitioned my care from anti-bacterial (Lyme) to anti-viral medications and supplements.  We are re-testing several areas this month as well.  The biggest help overall appears to be the addition of 100% THC-free hemp oil.  This is a special kind of CBD oil made from industrial hemp NOT medical marijuana.  All of the cannabinoids except CBD are removed; not even the legal limit of .3% THC remains that is present in other CBD oil products.  (I wrote more about this here.)  It’s the only independently lab tested product of its kind that I could find in the United States.  Note that the CBD oil I am taking is  LEGAL in all 50 States!  I know.  I have been researching this issue for 4 years and have tried other CBD products available in my State.

My activity level has gone up some with pain coming down enough such that I can:  work on the 2 projects noted above, walk the dog 3 times per week, and leave the house for one non-medical activity per week.  So far, that is.  Looks like I might have had 2 outings in the past 6 days of this past week already!  I have started to be able to do my physical therapy exercises.  Thank you Jesus!  And when I got sidelined last night with noxious symptoms in the middle of the night, at least I had strategies to get me through a rough headache and morning today.  I’ve got tools to use now that actually help my symptoms.  This is a big deal to me.

Lord willing, Monday will bring an important imaging test in a large city about 3 1/2 hours from home by car.  My beloved hubby is taking me.  The test is a special MRI scan called an “MRI with NeuroQuant processing.”  The NeuroQuant software takes volumetric measurements of various brain structures and compares them to a normal brain.  Experts have identified parameters of significance in both the Lyme and Mold illness that provide diagnostic information and help in determining the severity of these respective illnesses.  This test is also used in traumatic brain injury, stroke, Parkinson’s, and Multiple Sclerosis care and more.  I am pursuing it due to headaches virtually every day in addition to the remaining convulsive episodes.  Several EEG and sleep studies have shown no negative findings.  My regular brain MRI a couple of years ago was normal.  Maybe the NeuroQuant will help rule out other causative factors?

So did ya learn anything new today Gentle Reader?  I sure did.  I learned that there still is a someone-or-two who cares about me and what I have to say.  Thank you for that dear one.

You rock!  JJ

What Do a Furnace and a Sleep Lab have in Common?



Looks like the Doc is a duck or about to diagnose, well who knows what?

Far fetched you say?  Not according to my experience in a Sleep Lab last night!  If I understand this correctly, my yet unnamed Sleep Doc’s report will look something like this:

7:30 p.m.  Arrive at sleep lab with way too much stuff packed to keep me busy, plus my pillow and minus my shampoo.  Oops.  Check-in paperwork.

8:00 p.m.  Dinner from a zip lock bag of ingredients from my special “anti-seizure” diet.  The HGTV marathon begins.  We don’t have cable or dish at home.  I’m jazzed!  Love it or List It.  Yeah baby!

8:30 p.m.  Get approval for a later bedtime since I usually can’t fall asleep until 2 or 3 in the morning.  So they’ll confine me to bed at 11:30 p.m. and I can lay there in the dark with them looking at me through camera behind the black plexiglass window on the ceiling.  I could arrange some funny faces or something.  I’ll have the time to think of something until I fall asleep . . .

9:00 p.m.  Demo and trial of a CPAP mask and machine.  Talk about feeling suffocated, yipes!  Actually felt relaxed 20 minutes later and wanted to keep it.  Not so fast, Missy, as you only get to use it during the study if the test results the first half of the night warrant it.  Notice that this means they will be waking me up to suffocate me if I warrant it!  Modern medicine.

10:00 p.m. Hardware glued and taped to my head, ribs, face, and legs.  Fingertip vice called a pulse ox secured to my right index finger.  Lots of colored wires (around 20) are attached to a blue box that would put the back of your computer tower to shame, and hung around my neck.  Great.  I’m feeling sleepy already, not!

11:20 p.m.  Get the “10 minute warning” that they are coming in to put me to bed.  How nice.  No pillow mints though.  No bed either.  There’s a Murphy bed in the wall that hasn’t come down yet.  Modern medicine indeed.

11:30 p.m.  Tech “K” tells me I have to turn off the t.v. and I haven’t found out if the couple will keep their remodeled duplex without the promised new kitchen and bathroom or spring for the $949,000 move-up mansion.  Did I mention they came in 5 minutes before the end of the HGTV program twice already?  Geez!  Anyways, she helps me get settled as best I can into bed with not one but two probes in my nose in addition what appears to be the back of the fuse box connected to my body.  Time for bed!  Lights go out.  Seizure-like tic attacks begin.  No need to make faces; the show has begun.

12:00 – 2:00 a.m.  Up to the bathroom twice, tossing and turning, praying, praying, praying.  Tics on and off with sweats.  Sweating persists throughout the night.  Why is this mattress so hot?  Room temperature feels warm then I’m not sure.  Tech “K” comes in twice with each trip to the bathroom to disconnect me from the secret control panel in the cabinet next to the cabinet holding my bed.  Remember the old Dick Van Dyke T.V. episodes where the Murphy bed folds back up with the person in it?   Yeah, I’m remembering it about now.

2:30 a.m.  Start crying and can’t stop.  The sound of the furnace is just too loud.  My nose itches just too much.  I can’t get comfortable and I can’t sleep.  I’m sick and tired of being poked, tested, probed, scanned, analyzed, drugged, drained, and worse.  I feel very small.  And Jesus meets me here.

2:30 a.m.  Tech “K” comes in to try to figure out why I’m crying and how to get me to stop.  Do I want to stop the test?  Sit up?  Stop the test?  Wondered why she asked me the last question twice.  Maybe I’m a handful.  She said the most interesting patient she had pretended to be riding a bicycle in the air while sleeping.  Guess my show wasn’t that good through the black plexiglass window after all.  Then again, I mention the loud furnace.  In seconds, we are walking to another room and find that it is much quieter.  Praise the Lord!  And she says it’s no problem to move to another room.  We pack up, bring down another bed hidden in the wall of cabinets and before long I’m in bed again.  This room is warmer; feels good initially . . .

I think I fell asleep sometime around 3:00 a.m. after some tic jolts and a few tosses this way and that way.  I probably woke up six times (before they said it was 9:00 a.m.), overheated from underneath.  Must be a down feather pillow top mattress or something.  And before I knew it, the voice on the speaker from above was saying, “good morning Julie, it’s time to get up now.”  A few tic zips rang in the new day and then Tech “J” appeared.   Tech “K” has gone home.  It’s now over for me too:  time to unplug, de-stick, and crawl home.  We made it Lord.

This day was a rough one, with a straining feeling from broken sleep and feeling torn between napping and sticking it out to go to bed early.  Tried the latter and wasn’t able to sleep, again!   A host of flu-like symptoms distracted me all day long.  It’s one of those times when you wished you could throw up and get it over with — twice.  Ate lightly including the prescribed  portion of cooked rabbit.  Yes, I have a weird diet to match my weird story.  (See blog entitled, “Rascally Rabbit,” for more!)

What do a furnace and a sleep lab have in common?  One keeps the lab working and the other works despite the furnace.   Modern medicine.  Have you taken yours today?