2.3. Rehabilitation

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Chapter 2.3.

Rehabilitation

• Three Levels of Rehabilitation
• Cursory Mention of the Specifics of After-Stroke Rehabilitation
• My Personal Choice of Rehabilitation’s Direction
• Look Up

In principle, rehabilitation after any personal calamity should rest on the firm survivor’s decision to persevere on that path. (But adequate support from the surroundings should also be included.) For now, let’s just say that it (rehabilitation) should be carried out on three more or less intertwined levels. The first two are particularly pronounced in the beginning and are actually universally inherent in each rehabilitation. The third, as we shall see, is typical for physical re-training.

Three Levels of Rehabilitation

1. (and basic) – inner work on oneself, head/heart consolidation (of course, if that head was sober before the accident and remained so even after it):
   • avoiding uncritical following other people’s (especially mass) opinions
   • thinking with own head and out of the box
   • constant questioning the credibility of everything around us, especially authority and “authority” (within the limits of our own objective possibilities, of course)
   • firm belief primarily in oneselfOf course, that faith can be further supported by faith channeled through some religion, whether theistic or secular. (Help yourself, and God/Universe/Great Leader/Supreme Authority will help you!), i.e., in one’s own abilities
   • opening mind and heart
   • adopting (and maintaining) a positive attitude
   • fostering gratitude at all levels of existence
   • permanent exercising patience, (self)discipline, and empathy
   • love for yourself and others is a prerequisite for progress and growth

But at the same time, a sense of reality must be developed (and constantly maintained). It’s OK (even desirable) to dream big, but one shouldn’t be disappointed if the dreamed goals are not reached! Or if this sense of reality soon renders them as something that does not make sense to insist on at the expense of some other possibilities that suddenly appear and whose feasibility cannot yet be assessed.

2. finding/inventing a way for the survivor to function as actively as possible in the immediate environment

3. (when we talk about rehabilitation after bodily damage, regardless of its type) outer work on oneself: many years and even lifelong exercise, chiseling and refining what one has achieved (I repeat – depending primarily on the patient’s willpower but also on his awareness of objective circumstances)
   

As soon as the 3rd level has settled down a little, one should firmly incorporate all three mentioned components into his attitude to life. As said, the first and second levels/components are mainly of an initial nature (i.e., they are more pronounced immediately after the calamity – later, they only need to be consistently nurtured and maintained). The persistence during the third component should be particularly emphasized here. Read: physical therapy is the alpha and omega of physical (but also mental) rehabilitation!!! And that regardless of the type and dimensions of the damage suffered. I.e., in the case of a stroke—both if it is realistic to expect some motoric progress and if it is necessary to “only” maintain the current condition of the locomotor system. (Which also very beneficially affects many bodily vital functions.)

It is desirable that such work on oneself be active, i.e., that the patient himself should exercise persistently. However, the professional help of a physiotherapist is often required—in the form of a wide range of activities, from advising/correcting to inspiring/motivating to full engagement when exercising a completely immobile patient. (This is to maintain the patient’s general basic physical fitness and his will for an active and dignified life, whatever it may resemble!)

In my case, the first level of rehabilitation, just after surviving the last stroke in a row, led me to the old catchphrase, which has been my guiding thought ever since: “You can’t escape this very skin; let’s see what can be done within!” It practically enabled the appearance and development of the other two levels. Finally, it is also the motto of this website: read more about it in the 1a. Part (Mission).

Cursory Mention of the Specifics of After-Stroke Rehabilitation

Each stroke is a case for itself, a completely individual story, to a lesser or greater extent different from other similar cases. Of course, that incident can roughly be classified into a certain group depending on:

• the type of damage (hemorrhage/ischemia)
• the location of the damage (left/right hemisphere of the cerebrum, etc.)
• the expected symptoms (a certain degree of paralysis of one side of the body/possibly aphasia/ possible personality disorder—all depending on the said location and size of the damage)

However, any recovery includes many additional variables and it is extremely difficult to predict its development. Naturally, this also applies to LIS, a possible outcome of the brainstem stroke.

The general specifics of rehabilitation after an “ordinary” stroke (I mean a stroke located in the cerebral cortex) are described in many languages, in many printed publications, and in many places around the internet, so there is no point in listing them here. (Google is your faithful guide!)

Describing the general specifics of rehabilitation after a brainstem stroke is beyond my area of expertise (possibly as a non-professional collaborator)! I can only offer (but not here/now) my personal experiences, mostly acquired through improvisation. They can hardly serve as general rules for all cases of LIS, perhaps as a landmark or inspiration for further improvisation. I can also roughly describe the physiological details of the background of LIS (see Chapter 2.1.). It’s actually a very interesting field and certainly has a place in that planned book.

BUT: it’s mostly about physical rehabilitation! In other words, it is an attempt to turn the spiritual-physical being known as Draško Regul back to the state before the strokes but with an emphasis on the physical component. (Obviously, the mental/spiritual one was spared. Moreover, it has grown up quite a bit, enriched with precious experiences, even if this process was at first unpleasant and veeery frustrating).

My Personal Choice of Rehabilitation’s Direction

Frankly, taking into account the 22-year time gap and my deepening withdrawal from the outer world eventsi.e., increasingly dense filtering of not-so-important information – I am not familiar with today’s established estimates. However, at the beginning of the 21st century, LIS was relatively unknown, not only in Croatia (see Chapter 2.1. LIS). Back then, the rule of thumb said: as much as the patient manages to spontaneously (physically) recover in the first year or two, that’s it!

In my case, the situation after the first two years of living with LIS was certainly better than immediately after the last stroke!

• We healed the bedsore.
• Incontinence was pretty much brought under control.
• My swallowing reflex has noticeably improved compared to the “naso-gastro probe era,” although I would still often choke when swallowing.
• We straightened the contracture of the right elbow.
• My head mobility (i.e., neck control) recovered to a large extent, which allowed me to use the abandoned computer again. (Only minimal intervention was needed to establish control over a completely ordinary PC and use standard ©Windows programs, without any modifications).

… However, despite these obvious improvements, the situation was not exactly fabulous!

• The muscular spasms were still present (especially in the morning).
• Breathing was still without any conscious control.
• Producing + articulating a voice was still an impossible mission.
• I couldn’t endure sitting more than a couple of hours in the wheelchair. The most comfortable/dexterous position for me was to assume a semi-sitting position in my hospital bed, i.e., on an anti-decubitus mattress, with my hands tied to the railings (so that the spasm couldn’t pull my hands under my chin again, but also so that I could sit more firmly—which later turned out to be extremely important).

It was clear to me that with such cards in my hand I was facing four strategic choices:

1. (Easiest)—to give up everything, surrender, and hope that I will find a way to quickly and without any edgy tumble end my role in the eternal drama. I had already considered it once—very early on, lying still in the ICU (but luckily, I couldn’t do it physically). And—I was ashamed very quickly afterward! Also, at this crossroads, I didn’t like that option at all.
2. Despite all the odds (“bad” those first 2 years), continue by stringent following the path of (physical) recovery. This would obviously mean the next 20 or so years of obsessed, intense, self-centered, self-devoted work! (Which would also consume many resources and helpers from the side.) All this with the sole aim of rearranging this protein cluster to resemble the body of Draško Regul, who was ravaged by a series of strokes some time ago. Doesn’t really make much sense, does it? I mean—if I were 20 years younger, unmarried, without children, I would have doubtlessly opted for that branch.
3. Embrace the reached level of functionality as final and give up on any progress. Lull into the status quo and float this way as far as it goes. Nevertheless—I understood intuitively that the very fact that I survived and made it to the condition I was in—was actually a kind of calling. A challenge to find previously unrecognized forces within myself and harness them to create… something! And that hunch led to the following option (which I finally chose as a strategy for further life struggle).
4. Despite all the odds (“bad” those first 2 years), understand the reached level of functionality only roughly as final, perfecting it further as much as possible. (Following the spirit of “You can’t escape this very skin…”). Unencumbered by the imperative of predominantly physical complete recovery to continue stringently follow the path of spiritual progress.
   
   (Here, I am not referring to any religious paradigm, be it theistic or atheistic! But aiming at a personal, own, critical investigation of the power of that immaterial part of oneself that remained imprisoned in (approx. 99%) the dysfunctional material part. And see if that remaining miserable percentage suffices for providing logistical support for said research as well as for some sort of functioning in “real”’ life. The mentioned “two bad years” were still good enough to hint at the feasibility of such an undertaking.)
   
   And all along the way, avoid wasting time and energy thinking, “What had caused all this,” ‘Why did it happen right to me,” and the like. (Or even worse: “What have I done wrong to deserve such punishment?”) We are where we are, and let’s show here/now our real value (perhaps in a completely new area for us): Hic Rhodus, hic salta! You have to swim somehow and at the same time think about how otherwise you’ll sink…
   
   Note: (I apologize for the repetition—it is intentional and never enough). Continuous physical therapy is the conditio sine qua non for persistence on such a path in similar (bodily) conditions! Not as intense as it would be in the solution in point 2 (if such an undertaking would be justified at all). But at least at the level necessary to maintain the general physical ability (and will) for an active and dignified life (whatever it should resemble).

Look Up

Many years later, I realized that many LIS-ed BSSurvivors in a similar condition were able to be very creative and actively present in “real life’”. Some of them were much more agile than me: this link is full of testimonials! Meanwhile, it obviously lost its functionality and contains many dead links, but the ones that are still OK point to many inspiring places**. Furthermore, I realized that I was actually privileged—I could move my head to some extent (which made using the computer significantly easier), and I could breathe on my own (even if freakin’ shallow and without voluntary control). The luxury of extenuating circumstances enabling action, compared to certain fighters stuck in a very advanced stage of ALS (amyotrophic lateral sclerosis) or MS (multiple sclerosis) who perform amazing feats by moving only their eyeballs, dependent on a machine that inflates their lungs!