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Locked-in Syndrome

Jun 2009Information, news & reviews
Profile : Drasko Regul - part 1

My LIS story has a little intro: On may 22nd 2000 I took kids to a regular medical check, by which occasion the pediatrician noticed that I was strangely pale & cold-sweating my forehead and suggested that I shoud have myself checked – and urgently! My regular physician was in vicinity, so i visited her immediately! Indeed, she found my blood-pressure to be substantially high (190/150 mm Hg). As I was sligtly dizzy & suffering a strange obtuse headache & cold-sweating (my condition the whole weekend prior to this!) + this sudden blood-pressure jump + having a long (20 years) slightly hightened BP (150/100) history + my father died after the 2nd stroke, she gave a pill under my tongue and ordered me to rest & come tomorrow again to start more extensive, specialist medical tests (this was at some 18:00 PM – nobody's available at this time & my condition was not dramatic enough for the urgent admittance to hospital)!... Nevertheless, some 1 hr after that I still attended a theater play with my whole family (wifey, 4 kids then 2, 5+5, 10 and my mom)... this had been scheduled earlier, and i did not consider it to be excessively strenuous. Yet, I had to have a pause once!... That night the headache grew stronger – still obtuse, but more definitely located in the back of my head. The pain was ever stronger & stronger, could not sleep – hell, could not even lie! About 4:00 AM my right arm went numb, slowly my right leg also... i told my wife to call the ambulance, tell them i was probably stroking (i was present as my late dad was having his 1st stroke, so I knew how it goes...). Well, it seems that Lidija, my wife, sounded too cool, unagitated on the phone (why, one should stay cool in such dramatic situations and not panick! Right?), and this plus the fact that I was only 39 then – led the paramedics to the conclusion that there was no need to hurry! When they finally arrived after 1 hour they first checked the room for drugs intake equipment and looked for my supposed earring (i shaved my hair then, so it would fit perfetly into their presupposed image of a suspective misfit which they held me for)! As they eventually noticed 3 little kids sleeping in practicaly the same room, they checked me (at last)!... In short, i woke up in the hospital, righ side completely paralysed, speech slightly (physically) impaired. I was diagnosed with the BSS – yet, not resulting in LIS (which fact was not mentioned, btw)! After some 10 days in the hospital, as my double vision settled, i was sent to a dislocated REHA center, a special hospital organized (& equipped like) a modest hotel! My rehabilitation went pretty well when suddenly one morning i couldn't sit & eat my breakfast, not even hold my spoon or say clearly „i'm sick“ or „shit happens“ I could only mutter a word or two with much effort!... It was evident that I was stroking again, so they stuck a needle into my arm & connected a bottle of some clear liquid to it and lay me to a vehicle resembling an ambulance. Since a REHA center normally has no ICU I was sent back into the same hospital (the same ICU!) that I had come from - cca. 1hr journey, which I mostly overslept (I was alone in the car)!... My family got informed that I was urgently sent back, so my wife & my mom had already come before the hospital as we arrived. A good friend of mine, who is a pediatrician in the very hospital was with them. I could still move my left arm/hand, could mutter a word – now with much much effort! During the neurological check I had to make much much much effort to say „Da“ („Yes“)! I must had fallen asleep again, as I don't remember much details of that day!... Still, an episode remained in my memory – as they drove me to the CAT scan, i realized that there was no 4th „much“ – I was perfectly unable to produce a sound! Lidija had asked me how did I feel – I couldn't say „OK“, but barely lifted my left thumb up! I remembered our last (verbal) conversation that took place only a day before's afternoon. That day had been extremely hot, making me feeling a bit dizzy & tired. This must had be noticeable in my speech, and Lidija ended the conversation with „Take care, pleeease!“ and I responded with „Don't worry! You know me – should something happen, I'll hold myself with my teeth to the thin air“! Hm... I guess this had been a subconscious promise that I had to consciously keep from that point on... shortly after that, as they lay me on a bed I could not reach the potty that hung on my bedside so I wet the bed! Funny, all this was very humiliating & should bring me down, but I stayed 100% cool/conscious (i.e. when wasn't asleep)!... felt absolutely no pain, also!

Profile : Drasko Regul - part 2

That CAT scan showed another ischemic stroke in the pons area, causing a wider lesion than the 1st one, but as the deterioration continued the whole following night they made also an MRI some days later, but there wasn't clearly visible whether there was yet another stroke that followed veeery closely, or was it only one, but which developed slowly & extensively... (also, it could not be surely estimated whether it was caused by a cloth or by a blood-vessel spasm – an additional color doppler check showed a veeery poor circulation through my basilar artery!) Anyway, next morning I woke up in the ICU, unable to breathe – the point when I finally got spurred! All I could see at first was the tiled squared pattern of the ceiling (lamp-nothing-nothing-air-condition outlet). I doubted heaven looked like this, I remember the hell from the day before – so, it meaned that i'd survived! Only – couldn't move nor speak and, most accute, nor breathe!!! (o-o! „houston, we have a problem“!...). so, the first days I had a single occupation: establish breathing! I hardly noticed the daily ICU routine, was fully concentrated on the ceiling pattern – following it's rythm & tryng to make my breath interfere with it! (of course, I took a breath here and then, but this was very occasional – enough to survive, not to live – there was no rhythm in it!) Finally, after some 3 days my diaphragm responded! On the involuntary level only though, and the intercostal muscles remained in bananas!... yet, this shallow breathing (which remained the same till nowadays) sufficed for me to live on! Slowly, I grew conscious of the shape I was in. I mean I was fully conscious all the time of my body's deterioration, but that was just registering facts, there was no emotional engagement on my side whatsoever! (just like in OOBE or NDE, only my body/spirit unity remained unseparated...) So, I got aware of the new decorations I was awarded - weird pipes that were pinned into my body, my new no-walkie-no-talkie image, some pleasing constantly present female faces (& bodies) dressed in blue uniforms (widely known as nurses) and of some not-so-pleasing & not-so-constantly-present male/female characters dressed in white unforms (widely known as dr.s). Worse – I could clearly hear everything around me so I was aware of the overwhelming indifference & grave negativity of the whites and the initial discredit which very quickly turned into warm friendly acceptance and support of the blues!... truth is – two dr.s excelled as bright figures (a lady dr. and her resident young dr. she was supervising – fortunately, they both were in charge of my case directly!) – we're still good friends and in frequent contact... NB - Croatia is relatively small country and the condition like mine is extremely rare here. Therefore, it is referred to by the less popular term (more specialist, denoting precisely the place that was damaged which caused the condition) – „ventral pontine syndrome“. The term „LIS“ wasn't mentioned at all! (not to mention it was not known to me) I learned it later, in the 2nd REHA, reading a german book („LIS“ by a survivor that fully recovered, K-H. Pantke) So, to put long story short my cloth doll phase lasted some 3 weeks, during which my overall health condition stabilized enough (I don't count a lying sore here!) that I could be sent to a REHA center (this time another one)! The leading star of that 1st period, in the ICU, was my wife, Lidija, who 1st realized by the way I looked at her and around me that my mind/soul is untouched, that „I'm still there“. She convinced the staff that it makes sense to fight for me! She also initiated many chapters of my communication system! (The only dr. that actually tried to communicate with me was the mentioned resident!) During 5 months in the REHA center my wife was also my main support, but she got a big, big help from my mom – they would interchangeably stay with me the whole day through (4 little kids needed to be looked after)! (Lidija was unemployed then – actually a lucky coincidence for all of us!) I got rid of the feeding tube & urinary catheter and developed the universal facial expression – smile! True, it reflects my general attitude, but it is also often triggered by feelings that call for an opposite expression – people don't smile when they are sorry or angry, eh?! As I was eventually dismissed onto the homecare, I advanced more visibly: no more urinal nor respiratory inflammations! Also I recovered my neck, which greatly improved my communication abilities, since I could steer my PC again. The rehabilitation/communication story is rather long (17th June will be precisely 9 years since my 2nd/3rd stroke), and I'm presenting it on my website http://www.rnda-drnda.org/index_en.htm (bilingual). The Croatian part has much contents already – the English part still lacks much items but I promise to do much translation in the next weeks! Yet, many details can be seen in the documentary that was shot back in 2004/05, so I put it on the same site http://www.rnda-drnda.org/blabla/pages_blabla/$_video_cardak_en.htm (english subtitles embedded)! :-} I use a normal PC with standard applications. The only disabled-oriented piece of HW/SW is the Smartnav (http://www.naturalpoint.com/smartnav/) - slightly customized by a rod bearing the reflector, due my farsightedness! ;-} )! Also, I use Canon Powershot G9 camera connected via USB to the PC... Today, my main caregiver is my mom, while my wife got finally employed and takes care for kids school-aged now)!... :-}

Croatia

Drasko or Dras is from Croatia and below is a small description of what and where it is :
It's a small (cca 4 000 000 inhabitants) Central European country, roughly between Alps & the Adriatic sea (which, in turn, is the integral part of the Mediterranean sea). Although it's history spans some 900 years, being always controlled by some bigger country or a part of a certain federation, the country gained it's independence as late as 1990! The last „boss“ was Yugoslavia (SFRJ) – as it got ripe to fall apart, first Slovenia & Croatia legally and peacefully proclaimed their log-awaited independence. Slowly the other countries (formerly constituents of ex-SFRJ) followed. Yet, the official Serbia didn't like this and started a cruel and bloody aggression on it's western neighbours. Croatia (and later Bosnia & Herzegowina) suffered much destruction & casualties in this war (lasting roughly 5 years in each country separately), confirming their freedom with much pain & blood!... More detailed overviews of Croatian history & culture you can read here:http://www.croatianhistory.net/ (click „main menu“!); or here:http://en.wikipedia.org/wiki/Croat (the present political situation is hm... tricky to explain briefly, as well as our social security & healthcare system, which certainly suffers from too much bureaucracy & rigidity)!...Worldwide, Croatia is best known for it's natural beauties & therefore as a popular touristic destination (more detailed info: http://croatia.mons.hr/croatia/index.htm ), sport achievments (more: http://croatia.mons.hr/croatia/index.htm ), arts (http://www.croatianhistory.net/etf/art.html ) and science (just to mention Nikola Tesla! More: http://www.croatianhistory.net/etf/et22.html )... Frequent successes in various international highschool scientific competitions suggest great potential in knowledge, as important & precious as our water-reserves!...

Photos

Normally I place all photos inside the article they refer to but since Dras's contributions are so long, I grouped them here. All the photos are "clickable" - click on them and you get a larger version in your browser:










The Website
At the moment I am rewriting the website - it will mantain it's present look and the content will be the same. So why rewrite it ? - Although it will look very similar, the way it is written is going to be very different and this helps a lot for the rewrite coming soon, so if you find any mistakes in the text or broken links, please refer them to me.

Croatia


  
http://www.mlongo.net


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