Whether I shall turn out to be the hero of my own life, or whether that station will be held by anybody else, these pages must show...(the opening lines of David Copperfield as written by Charles Dickens;inspired by MTM). Or at least this ACCOUNT will, perhaps, have a reflection on whether I'm going to be the hero in my own life.
...If I never loved I never would have cried.
I am a rock,
I am an island~~~Simon And Garfunkel;I Am A Rock
The high-light of this week, was supposed to be Thursday, 18 August 2011. This would be the day that I was to appear at the second floor offices in the Buffalo General Hospital of neurosurgeon Dr. Robert J. Plunkett Jr. After a series of consultative visits, it was decided that I would do a trial placement of baclofen as a spinal injection. The trial was to see how my body would react to baclofen being placed directly into my spine, instead of being taken orally. MEDTRONICS manufactures a hockey-puck sized PUMP, which is surgically placed in the lower side of the abdomen and has a tube that sends small doses of baclofen into your nervous system through the lower spinal injection area. Before we were going to go through all of this surgical machinations, the Doctor wanted to see how I reacted to a needle-injected dosage of baclofen, on a trail basis, where he and his assistant Dr Susan Bennett could observe my reaction to this trial injection. This injection and subsequent observation, was to take place throughout the late-morning and into the afternoon of Thursday. They felt confident that this window of observation would give them a pretty good understanding if I was a 'good-candidate' for this baclofen-pump.
The objective of this course-of-action, the placing of this pump internally, was to see if this muscle-relaxant-agent, baclofen, would aid in, at least partially correcting the acute twisting inward of my two feet when I would, with the aid of my reciprocal walker, assume the erect position, and attempt to ambulate. In the process, my two feet currently twist excruciatingly inward, to the point where the left foot, would continue the twisting, and almost point toward the back.
The concern?? Baclofen is not a drug for everybody. It is a muscle-relaxant. For some people, apparently it works on the targeted area, without any after-effects on the person that is taking the drug. For me, the case is different. I have a history with baclofen, and it isn't a user-friendly one. Early-on in the medical profession's effort to try to help me better manage some of the pain that accompanies this spastic paraplegia that I am dealing with, Dr Carolyn Warner of the MDA Clinic, then headquartered at the ECMC, prescribed baclofen for me. This, of course, would be taken orally. It didn't work because I was plagued with side-effects. I was constantly groggy. It affected me immediately at work. Operating machinery and tow-motors was a constant challenge. I did not want to hurt or injure myself or anybody else, but I didn't want to reveal to management that I was incapable of doing my work, either. Besides the grogginess, my legs just felt like mush. I didn't have my canes yet, so my footing was always wobbly. Needless to say, we had to make a change on that medication, in a hurry. We shifted from baclofen, over to zanoflex. I have been using zanoflex---ever since. It does have a drowsiness effect to it, but not as drastic. I take the zanoflex at night, so I don't have to contend with the downsides of the drowsiness. It doesn't turn my legs to mush either. But then again, whatever spasticity it may be addressing---is nominal, at best.
Which, in turn, brings us back to baclofen---and the baclofen-pump. To start with, MEDTRONICS is only manufacturing a baclofen-pump. There is no zanofelx-pump on the market. The baclofen-pump held out the promise of spasticity relief, with no side-effects because of the more measured and direct application. Always trying to see the world in a better light, as seeing the glass half-full, and prayerfully, that this just may give me a better-day, I agreed to the trial. To illustrate how confident I thought all of this was going to work out, when my brother Victor asked me, subsequent to this ordeal, why he did not know anything about this, I simply replied---"Vic, I had full confidence that all of this would go picture-perfect; that there would be no need to worry or alarm anybody."
It is now late-morning of Thursday, and Doctor Plunkett, via needle, injects the baclofen into the spine. Again, by not taking this orally, it is supposed to bypass my brain area so I am not suppose to sustain the after-effects as in my early experiences with the drug. After a one-half-hour recovery period, Doctor Bennett wants me to attempt my first test. It pretty much goes-off, without a hitch. I have to get off the gurney and get myself onto my scooter that she has now wheeled near me. This is a good test, because even as there is economy-of-movement in the maneuver to slipping myself into my scooter, there is one KEY element that insists that I still have enough muscle strength to pull off the task. At one point I HAVE to get the right feet elevated the three inches needed to get the right-foot onto the floor-board so I can ease myself into the sitting position. So-far; so good. We do a couple more 'tests' with the reciprocating walker, then the Doctors tell Donna & I to take a little break, and to go down to the lobby-area for a snack. It is at this point, and I did not want to send up a flare yet so I did not mention this to Donna. But while I was waiting for Donna to return with the snacks, I was reading my TIME magazine. As I am holding the TIME, reading it, I begin to notice my hands wanting to let the magazine go; that I had to make a concerted effort to hold onto the magazine. I thought: hmmm, you haven't really eaten yet--you are hungry---you will be fine once you get some energy restoration, through food intake. After this, we head back to the second-floor offices for more strength-test assessments, and more evaluation on how well I am doing with reciprocal walker manipulation, and reciprocal walker-and-scooter transitions. Before I do that, I decide I am going to go to the restroom. I receive my first two yellow-card warnings that this may not end up going as planned. The first is the struggle to alight the scooter, drop-my-draws, and get myself onto the commode. I never had to struggle like this, with the transitions, to effect this everyday-function. The second yellow-card is the voiding, itself. I certainly 'feel' the urgency to 'go'. But very little is happening. Getting myself out of the rest-room is an equally concerning struggle. I did mention these developments to Dr Bennett. She was still cautiously optimistic. We went through more strength-tests, and more transition tests with my mobility equipment. A more visible degree of effort and out-right struggle was beginning to manifest itself.
After breaking for lunch, a test-review-meeting was set up to include both Drs. Bennett and Plunkett. It was after the lunch break, that I got my first hint I was IN-TROUBLE. I again went to the restroom because I still had this sense of urgency. The struggles to effect this function were more acute than the last time, while the voiding was still sluggish. The red-flag-semaphore??? I had to call-out to have Donna come into the rest-room and assist getting myself redressed, before exiting.
By 15:00PM, I can't even transition the mobility equipment any more. And I am scoring 'zeros' on my ability to lift my legs, while sitting, or moving them laterally. At this point Dr Plunkett, has his resident, Dr Berg, come into the office to start the admission process.
I started crying. I failed; I simply failed. I had the highest expectations, and I was embarrassed that I was not better than the medicine.
You want to talk about a 'life-style' alteration, I was about to get put into an environment radically different from the sweet, sweet, nobleness of home. When I am in my home, upstairs at bedtime, and I am now removed of my footwear, if I have to get anywhere, I simply crawl, to my objective. Not in the hospital. This means I cannot get to the restroom. As a consequence, I am attached to a catheter for the first time in my life. The afternoon nurse, Susan Cipolla, has excellent bed-side manners, and is very amiable in getting me to feel as comfortable as possible, with the set of circumstances I now find myself having to accept.
The experience was physically, emotionally, and mentally draining. And I think Susan readily recognized how disillusioned my disposition revealed. On the one hand, there was the REAL possibility of correcting SOME of the twisting inwardness of my two feet when I would try to ambulate with my reciprocating walker. On the other hand, I had become so literally drained of ALL vestiges of strength, that I feared my body may have morphed into a perpetually catatonic, wet-noodle state. The spastic paraplegia has involved me enough, already. I certainly did not want to be reduced to a totally bed-ridden handicap person.
After she 'registered' me, and set up the catheter, she then placed these 'wraps' around my legs that, once activated by a bed-side machine, were supposed to 'massage' my lower-legs. While I truly gave these the benefit-of-the-doubt, as I was heading into the evening, where I had a two-hour phone conversation with my brother Dominic, and then a brief good-night conversation with Donna, I decided I was just going to have to speak-up to the night-nurse, Kara. By now it was 23:00PM. And these 'wraps' were excruciating. If they were supposed to massage; they weren't. The only feeling my legs now had, was total pain. I had been thinking---Lou, it is not likely you are going to sleep anyway, because you are so anxious about all that has unfolded already. If you don't ask for these to be removed, they are going to be amputating your legs, Friday. Kara admitted that these leg-massagers get a mixed-review. She was very willing to remove them. While I still could not move any part of my legs, I was relieved that the pain was dissipating.
As Thursday was now becoming Friday, I would fade in and out of sleep. I never fully fell into a continued sleep because in the middle of the night, even at Buffalo General Hospital, there is always some type of bells & whistles going off. It is 01:20AM and the older gentleman in the bed next to me is having a rough-go-of-it. His moaning wakes me up. Great!! His TV is still on. I know he can't be watching it---it is an infomercial, selling vacuum cleaners!! I call over to him---no response. Subsequently, I red-lighted Kara into the room, and she obliges my request, and turns off Ocie's television.
As It is now progressing into the early morning hours I still had no control over my legs. The upper body was starting to gain some of my strength back, but below the hips; dead-to-right---no strength or ability to move at all.
I wanted to keep an open-mind to the possibility of a legitimate remedy, so I took a chance on this trial. They cautioned that if it didn't go to plan, the doctor would admit me for 'the-night', for observation. "Easy for 'you' to say!!" For a person as impaired as I am, functioning in an 'away' stadium, took away ALL of my logistical 'props' that help to get me through each day.
As daylight was starting to usher in the dawn of a Good Friday, I was going to do whatever I had to, to get out-of-Dodge. Even as I may have been less than Lou Marconi, I was going to do whatever I had to, to convince the Doctor, and his interns, that I was good enough to get released. I wasn't staying there, another day. I still felt a light-headedness, but I wasn't going to admit it. I figured if I could demonstrate the ability to get my boots on, by myself, then ambulate with the walker to the bathroom to void, and then get back to the bed, they would draw-up the paperwork to release me. In doing so, the physical therapist thought I 'looked' good, so he said he would draw up the release papers. He then drew the curtains closed to allow me to sponge-bath and dress myself. Dressing was a challenge because their bedroom surroundings in the hospital do not possess all of the 'props' that exist on my side of the bed at home, which allows me to cheat mother-nature and dress on my own. As Friday is now moving along into the afternoon, I am able to call Donna from her work assignment location in North Buffalo, to now come and pick me up. I was able to load the scooter into the van while the releasing nurse watched. I was then able to reciprocal-walker myself to the driver's door where I was capable of 'lifting' myself into my van. Finally, I was now comfortably at home, in the confines of 38 Kenwood Rd.
I must say that I am grateful. By the Grace of God, the prayers and thoughts, on my behalf, have been answered. As of this writing, I am feeling very good; thank you very much!!
A special thank-you goes out to Chaplain Deacon Norm. A Roman Catholic himself, just before leaving, we prayed together, and he then gave me The Holy Eucharist. And I am not lying. The loneliness that had so thoroughly been haunting me up to this point of Friday while still at the hospital---had been lifted from me. My heart, my soul, and my inspiration, had once again, lifted me from the disillusionment that had befallen me.
Baclofen; Beelzebub.
--{-=@
Hickok
The Promise
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