First, what actually happened....
For more medical background on the issue, read this.
I realize that I don't normally share about medical stuff but since I started this series so long ago I should finish it, and also, many interesting thoughts on the subject keep coming.
As some may know, CP is not a progressive condition per se, but it can adversely affect the way that our bodies deal with aging, stress, and multiple other factors. Mainly, by producing extreme spasticity, or high muscle tone. To illustrate this, I will share a story that happened one day. My brother wanted to play with his new football. He knows that I can't throw well at all, but I obliged him anyway. Of course, my throw flopped on the floor about a foot in front of me.
"What the heck?! You throw like a girl. Actually you throw worse than a girl. S (my sister) can throw better than you,” he said.
Upon hearing this, my dad comes over and puts the ball in his hand. He told him to throw and then proceeded to hold his arm back with as much strength as my brother's arm could handle. “ Now try it.”
My brother protested about how it wasn't fair but he understood. Normally I don't advocate for any kind of simulation, because it's not going to be accurate, but this is the best idea I can think of.
So, going into this process, most of the major muscles in my entire body felt this way most of the time. It is usually very confusing to explain this to people, as it is not painful, exactly, it is just that this state of not being relaxed feel so normal it doesn't feel like anything. You are used to your muscles fighting against you every single time.
After a series of not entirely unpleasant but less than pleasant interactions with my local therapy clinic at the time, in 2013, they decided that the only way that they would continue providing services was if I agreed to do the trial process for intrathecal baclofen therapy, as described above, more commonly known as the baclofen pump. Now, I had taken the medicine as a kid in liquid form, and it helped somewhat, but let's just say I was an extreme space cadet and could not focus at school or on anything else. Where I was growing up, they did not have any specialists who could implant these permanent devices, and, with the serious risks of withdrawal, it was put off for a number of years, until I could decide if I wanted it for myself.
Well, at this time of interaction with the therapists, I was plenty old enough to decide, and grudgingly agreed to the trial process, as it was temporary only, before receiving the implantation surgery. I was told to expect anything from retaining my normal function and improving function, to falling flat on the floor and not being able to move because all of my muscle tone function would be taken away. The effects are so varied in different patients that no one can say for sure until you do it. Believe me, my friends knew how many nights I lay awake thinking about this, and sometimes, I still do.
On testing day, I did as instructed and did not eat or drink. I will say that the actual spinal injection hurt less than putting in the IV for fluids, which they had to do about 3 times, I don't know why. After about an hour, they came back and said “how do you feel?” I said I felt very strange, but I couldn't explain why. It was just an incredibly still feeling, and my entire body was warm. I would think that this would be because blood is flowing freely and not constricted by tight muscles or blood vessels.
And then, the fun part happened. They did all the functional tests and asked me to raise my arms and move my fingers etc. And there it was, I was able to do it with absolutely no resistance from my arm whatsoever. I could flip my left hand completely over flat and hold something in both hands, something that I can only do on my good side on a daily basis. This was amazing! As long as I felt fine for the rest of the day and my function didn't actually decrease, I would be a great candidate, and this would change my life!
After several more hours of observation, which included me finally being able to get out of bed (which went way better than expected), I was told I should go home and take my medicine as directed that night, as I usually do. My other aide put me in her truck, which she remarked was so easy to do because I bent, and we were going to head off to Costco to go grocery shopping, but first, she made a special stop at Ezell's fried chicken for the occasion.
The thing is, I don't actually remember eating the fried chicken because I was so tired I couldn't sit up in the car or keep my eyes open. When she finally woke me up so we could get out of the car, she said I was a complete dead weight and asked me if I was drunk, because she couldn't understand my words, which are usually pretty clear unless I'm excited.
“No,” I mumbled. “This would be the baclofen hangover. It does this, every single time.” It felt like somebody had punched me in the face and knocked all the wind out of me. The doctors assured me that the side effects would wear off in 2-3 hours. So we decided that after that I would go home and sleep it off because that was all I had the energy to do, in the morning I would be good to go!
Except I wasn't. This feeling of drunkenness lasted more than 24 hours, at which point I called the doctor's office. They said it was probably because I had taken my medication as instructed. But also probably because I am hypersensitive to the dosages of this medication. All I knew was that I was glad it was summer because if I had to be writing any papers or working right then, forgetaboutit! I was somewhat fortunate and unfortunate enough to have my second level ASL evaluation two days later, but at that point I was unsure if I could keep my eyes open. Luckily, we all know how that turned out!
Turned it out that upon my follow-up about a week later, there would be more complications to receiving the procedure as originally planned, so I put it off, hoping that someday it might be available at that same facility with new doctors, at a time when I was not working and was free to experiment with this. But that's for another post, after all it has been two years and I still haven't made my decision.
Stay tuned for Part Three........
(Image: me smiling from a hospital bed after the spinal injection trial began, July 2013. I'm wearing a hospital gown and my left hand is bandaged from being attached to an IV pole. My right hand features the 17 jelly bracelets that I once wore in various colors. I am holding my cell phone and a lunch menu. )