Sometimes I wake up from a deep sleep and I feel  a light tremor in my chest.

Phoenix Helix

http://phoenixhelix.com

The Phoenix Helix blog and podcast features an interview with Dr. Terry Wahls more recent than her inspiring TedxTalk, along with many discussions of auto immune disease and the Paleo diet to treat them.  I urge all MSers to seek it out.  

Death by Screens

I have spent most of my life in front of the television or a computer screen.  By the time that I was diagnosed with multiple sclerosis, I was spending a whole lot of time behind a computer screen, on the Internet.  The first search result for "multiple sclerosis" was a page about the low-fat MS diet known as "The Swank Diet.  This was the Internet in the year 2000.  WebMD existed, and that helped me to match up my symptoms with a disease before I ever went to the doctor.   So I thought I was pretty smart.  I realized today that the neurologist that would suggest exercise to a patient receiving this diagnosis is far and few between.  Working with a physical therapist is required.  Don't be hypnotized by the television or your computer or mobile device.  This is true for everyone.

An Impossibly and Perhaps Unecessarily Detailed Daily History,February2016

An Impossibly and Perhaps Unecessarily Detailed Daily History, February 2016

It should be noted that I am inceredably blessed to have the life that I have.  It all goes back to my partner, who lives with back pain, nerve pain, and more...all while taking care of me, our home, and our senior cat.  How did I get so lucky?

730-9am.... Partner wakes me up from a deep slumber.  

He takes me through a range-of-motion exercise & stretch routine.  

Then, he readies me for the day.

He takes off my underwear with cloth pad,.

Hands me an unscented baby wipe.

Newly laundered cloth pad goes on fresth undies.

Soaps up a washcloth to clean up supra area. Pants on and into Permobile tilt/recline.  

Now, he puts on compression stockings (usually, thigh-high).  They are difficult for him to put on.  Even without the bad back.  He makes it look easy.  Next, a tank top, then an overshirt.  Eyeglasses cleaned and put on.  Catheter bag drained into toilette.  Finally, a course of pharmaceuticals and morning supplements of fiber, magnesium, flaxseed oil.

Whew.  

………………

On a bath day (once or twice a week), after excercise, underwear is removed, clean towel then myself onto the chair, roll into a tiny bathroom, and heave-ho into the bath tub.  Waiting for the tub to fill up to my ankles, I roots up to touch the butterfly appliqué on my right side:, getting a nice stretch, and at some point I hold the sprayer over my heart where it feels so good.  This is as close to those relaxing, warm baths  that I used to love so much, as I can get these days.  Then we work to clean my body, and he washes my hair.  We work to squeeze the water from my hair, dry my face and shoulders.  I ask for a towel on my shoulders to catch the drips.  Heave-ho back into the chair.  Roll out, and a pillow is placed on the floor.  Lotion is applied to my feet & lower legs, then stockings.  I apply facial moisturizer and think that I should apply moisturizer on the top half of my body, but I usually don't.  We roll over and I am placed onto the bed where underwear and pants are put on.  Back into the chair and roll back to the same place, where I may need to be shaved, and further dressed.

Double whew!

…….…………

9-10:30am ... "Pull-up" exercises, push–outs,  handweights...upper body things.

1030am and on.

Lumosity computer "brain training" games ... Breakfast.  

Lunch.

Afternoon supplements (100mg biotin, flaxseed oil, 6000 IU vit d3, sea kelp, coQ10, desicated liver).

"Ex-N-Flex" passive exercise bike on feet or hands (stretch out arms and a core exercise it is).

1-2pm

Park myself in front of the television, with the tablet and food/tea tray on my lap (and more or less stay here until bedtime).

3pm.  Lie down & put feet up... I should, anyway... I don't know why I deny this to myself.   Many times it's just, not being at home but being in a doctors office or an errand is being run, or I decided that it is more important to drink or eat at this time.

All of this, my partner does for me.  All of it.

6-7pm. Partner makes or orders dinner.

Sometimes after dinner (or lunch) I will indulge in a cookie and/or piece of candy.

930 or so.

Bedtime.

First, catheter bag is drained.

After washing hands, he puts toothpaste on the Oral-B Pro1000 & hands it to me.  (wikipedia: The first electric toothbrush, the Broxodent, was conceived in Switzerland.   Electric toothbrushes were initially created for patients with limited motor skills and for orthodontic patients (such as those with braces).  The system I have designed for brushing my teeth while confined to a wheelchair (one that was designed longbefore I was on the planet) works well for me so far.  I use a cup to spit in, and a cup of water  (covered, plastic, with a straw) to rinse with).  I floss my teeth while still toothpaste on .  I rinse, then place the Holly Hobbcup in the sink, and turn on the hot water.  With the hot water running, I run the toothbrush under it.  Finally, I put a washcloth over the toothbrush and turn it on to dry it out.  I overturn the cup and place it onto a clean washcloth to dry.

Then I am given faxseed oil, pharmaceuticals, herbal calms.  sometimes I use a nightcap to keep the hair out of my face while I sleep.  When he comes to bed a few hours later, he will flip me over.  I will stay there until I wake up in pain from the constant pressure of not being able to move. I will need to wake him from a deep sleep to flip me once again. At this point, he usually gets up.

Repeat.

just reLAX

For a successful, complete bowel movement, all I need to do is…

* Wait for the signal that will come about one half hour after eating.

*  have my person place me on the eau de toilette.

* place my "listening device of choice"

 [(c)Harry Shearer] on the counter.

^ zone out for 30 minutes.

Make sure you are drinking lots of water..

That is all.

I use a stepstool to raise my ankles up so that I can wipe (my person puts my feet on the step).

Suicide

I killed himself long ago, by not fighting this disease with everything in my body.

Everything in my power.

Please fight.

Don't kill your self.

f I Could Do it Over

If I Could Do it Over

First, I would make it an assignment, a duty, to go outside and walk.  Every day.  I lived in Southern California!  I had a favorite spot to walk...but I had issues.  But to just WalK.  Because if you want to hold onto something, you keep doing it.  And SwimminG.  I went to a weekly MS class sponsored by NMSS...i had some difficulty swamming in the deep end.  Swimming is a super excellent, awesome way to excercise your whole body all-at-once.

This includes a membership to a gym to use thier Elliptical machines.  Even after recieving the televised advice from Montel Williams (and thinking yes) (he was diagnosed in 1999 like I was).  I found public staircases to walk up & down.   *And* a referral to physical therapy.  To work closely with a physical therapist.

But I did none of these.  What I didn't do, is sit in front of the TV, and the computer, all day every day.  I was in denial and a deep level.  It was disguised though.  I did not consider myself to be in denial… Until I move to Oregon and the doctors here would tell me that I was in denial. I didn't realize how soon it might turn to THIS.  No, that it WOULD turn to this.  I just accepted each stage and did not fight.  It was depression.  Not until I started to take care of my depression did I realize all that I could do. But by then, I am not able to walk, to turn myself in the bed and now my arms are starting to curl in and are too weak to Brush my teeth… Almost. Add a psychiatrist to a physical therapist, and a neurologist.

I could go on with the opportunities that came my way but I did not take advantage of.  These things, these interactions with people, are painful for me to look back on.  I am looking back at a lot of things in my life that are painful, a death bed type of thing is happening in my brain these days.  This disease for me (these days) is being trapped inside my body.  Trapped inside my wheelchair.  And it is far from over.  I can see myself ending up like Annette Funicello.

I am still not sure if I regret not taking one of the injectable drugs.  In the beginning, I used Avonex for about a year.  Before I moved to Oregon, I was using Betaseron… This drug you have to titrate up.  If I was going to quit, I should  have titrated down!  Or, better than that… Don't quit!

So, what can I do now?  I still have the top half of my body.  I do some exercises with that in the morning.  I need to start thinking about how to bodybuilder the top half of my body!

The bottom–up poem as seen on Dr. 0z

My Rides

Trial (at home?)

"Safety and Tolerability of Quetiapine in Multiple Sclerosis"

https://clinicaltrials.gov/ct2/show/NCT02087631?term=Remyelination&rank=7

This link is to a clinical trial testing the drug Seroquel in MS patients for remyelinating.

It is recruiting.

I just so happen to be taking this drug for bipolar II.  I hope it has this side benefit!

But like I said, I have been taking this and I continue to progress.… Maybe The dosage needs to be much higher.  I will tell my psychiatrist, and am considering taking a higher dose if it has the power to remyelinate.

Lucky Stars

It seems like there are more instances in my life, but here are the two things that I remember now.

First, I was about six years old.  I was going to meet my friend from the same apartment complex that I lived in, and her mother, to walk back home after school.  I waited there until everybody had left… it must have been the wrong entrance, because I was the only kid left to standing. I remember wailing and repeatedly slamming my fluorescent pink plastic lunchbox to the sidewalk below, over and over, as I wailed.  An older kid across the street mockingly made the same kind of noises.  At this point, I went quiet.  A beige sedan stopped in front of me. The female driver inside asked what was wrong, and told me that she is a teacher at the school and would take me home.  I believed her and climbed into the car.

She took me home, (it was around the corner).

 I could have walked myself a home, I guess.  But I was a very scared 5 or 6 year old and did not realize this.

The second example that I can remember now, is one Saturday night. I was about 14 or 15 years old.   My mother and little sister were both gone that night.  I fell asleep on the couch watching Saturday Night Live.  I had planned it, because I had a pillow and a blanket.  I must have forgotten to lock the back door.  I woke up a few hours later and saw a shadowy figure, The silhouette of a man, standing in the middle of the room, facing me.

I did not move or make any sound, v holding my breath.  He  also stood silent and motionless, for a moment.  Then moved to lie down on the loveseat lit by the window above.

I continued to lie motionless and silent until after the sun came up   I then moved very slowly to my bedroom around the corner, shut the door very quietly, and hoped that he would not come into the bedroom.

 A few hours later, I heard someone run across the linoleum in kitchen floor and one out the back door.

...……….……

 From here on out, I will be entering stories as I remember them. 

….…………

My high school sweetheart.

As a freshman, I went after this beautiful and intriguing boy. He was a sophomore. I stayed with him, loyal, for 8 years  (he was in state prison for it 13 months at the end… I enjoyed my freedom.  But looking back. I doubt that he was faithful to me for all of those years).

I am very lucky that I never became pregnant by him.

I am also grateful that his parents included me on long family camping trips to the Redwoods, on the coast of California, Oregon, and Washington.

….…………

My Everything.