Category Archives: Medication

09/11/19 Journey of Roller Coasters

I often wonder if when people see me out and about in my wheelchair, they think I’m getting better. The roller coaster of this disease is wild.  Every activity I choose to do has a recovery cost.  The coast for showering averages about two hours of recovery where I am in elevated pain and just plain exhausted.

The cost for leaving the house depends on the activity done and the lenght of time.  Attending Mass at church usually has me recovering on Sunday and Monday.  I’m able to resume my normal schedule on Tuesday.  This time it went until Wednesday.  To be fair, I was active at service.  I usually listen to the service from Parish Hall, entering only to take the Eucharist.  Since my birthday was the prior week, I went in front of the Altar to receive my blessing.  So, there was a little more activity than normal.  But, not much.

Why, then, did it take me until this morning to recover?  The last few days, the pain was so high I couldn’t think a good portion of the time.  Bizarre.

In December, it will be three years since I’ve been fully functioning.  We know marginally more now than we did then.  I learned a host of new vocabulary words.  None of them good.  I thank the Louisiana Legislature for making a new medicine available.  Therapeutic Cannabis seems to attack the disease at its core, relaxing the muscles so they can heal.

My mental faculties take a hit when I take all my meds.  I walk a constant tightrope between sedation and non-sedation.  Occassionally, when I am heavily sedated, I can think better than when I am not sedated and in excrutiating pain. It would be ideal if I could be not sedated and not in pain, but that doesn’t happen very often at all.

Live in the moment and trust in God.  It has taken a while for that to sink in.  Of all the things I’ve learned, that is pretty much the whole ball of wax.  My memory flees me.  I have no choice but to live in the moment.

Thanks for reading,

Jay C. Theriot

A Success? Modification of Oral Baclofen Regimen

About a month or two ago (time slips away from me) I began having significant trouble breathing, occasionally. My chest and upper back muscles would tighten sufficiently to make me feel like I was being crushed.  Indeed, I was.  According to a CT scan of my chest, I have some passages in my lung that are collapsed and I have a cyst that has formed.  My doc believes the cyst is from when I aspirated while I was out cold for a few days in the CCU.  We have a three-month CT scan scheduled to track the progress of the cyst.

However, the victory comes from the treatment we started.

First is an Albuterol inhaler to help the inside of the lungs.  That is a welcome addition.  My O2 levels were dropping to 89%, now they are back up to 95% and sometimes as high as 97%.

In addition to the Intrathecal Baclofen, I started taking 20 mg Baclofen three times a day.  However, this was putting me on a crazy roller coaster.  I would fall asleep with the Baclofen and then wake up just in time for the meds to wear off and spasms to begin.  I had an idea scamper across my brain.  Instead of taking the Baclofen three times a day, spread the pills out to one every four hours, even through the night.

The bands around my chest have lessened. But, the big win is in my mobility.  I have experienced a significant decrease in my wheelchair time.  I still have bouts of spasms, however, they are treatable by taking a Zanaflex.  I keep the Lortab in reserve for when I can take no more.

I stumble around the house, but I’m mostly vertical.  I call it a win.

I am concerned about the amount of Baclofen I take.  As what I have is muscle atrophy, taking muscle relaxers are counter intuitive.  However, there is no other defense against the incredibly painful, and crushing spasms.  I never dreamed that my muscles would spasm tight enough to crush the air out of me.

SBMA continues to confuse and confound me.  However, we are getting smarter in my treatment plan.  If I remain on the treatment plan for a couple days of the routine medication, I am able to stay out of the chair most of the day. However, today will not be one of those days.  I had a spasmodic event from 5 pm until midnight and I strained some muscles in my hip and thigh.  I can’t really support myself with them this morning.  They will heal in a few days and I’ll be back “up” again.

That is a win and a Blessing,

In Christ,

Jay C. “Jazzy_J” Theriot