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THE FACES OF GUILLAIN-BARRÉ SYNDROME Foreword This work consists of two books. The first part is a belletristic text, explaining thinking and mind games I encountered during the treatment for Guillain-Barré syndrome. It should be noted that any movements described mentioned within the text are only descriptions of these games which assisted me during the treatment. I included my meditations which helped me shorten the time during my hospitalisation and rehabilitation. The second book includes the text published in my book My encounter with GuillainBarré Syndrome, which contains my experiences during my treatment and rehabilitation after the disease. Both books give a demanding reader an insight into the multiple facets of the disease – from subjective descriptions included in the first part to the more objective ones to be found in the second book. At first I started to write for therapeutic purposes, as a part of my therapy at home. Within my work therapy I started typing, at first I was only able to type using two pencils, and only for short periods of time. After a couple of months, I was already able to type using the middle finger, and later also my index finger. Typing was thus a very useful therapy for my fingers and arms. But writing was an especially good form of soul therapy, and it helped me face traumas caused by the disease. After twelve months, the words took shape into sentences forming chapters which speak about my encounter with the disease. I will be pleased if my experiences help patients and their relatives get to know certain facets of the Guillain-Barre syndrome. The book describes a number of experiences, similar to those encountered to patients with many other diseases.
Text General Data This text does not represent an expert opinion or an expert evaluation from the field of medicine and rehabilitation. It includes my experiences only, which should be considered only as a starting point for patients with such and similar diseases in search of their own direction, as the Guillain-Barré syndrome has as many facets as there are patients. For all medical/health-related information about (your) disease you must by all means turn to physicians and other professional staff.
The persons in this book named Jana, Jan, Jani are Janez fictional, and any resemblance to actual persons is purely coincidental. All the persons are types of a single character. The persons with these names always describe only my own experience. Always, and without any exceptions, I describe only myself, and never any other patient, therefore any similarity to other patients with the same name or the same, or a similar disease, is purely coincidental. The other patients, persons, and events described in the text are fictional, without any exceptions, therefore any resemblance to other persons or events is purely coincidental. The following abbreviations are used in the text: Neuro – University Medical Centre, Department of Neurology, Ljubljana. Soča – Soča University Rehabilitation Institute of the Republic of Slovenia, Ljubljana.
BOOK I FACES OF THE GUILLAIN-BARRÉ SYNDROM Contents: Text General Data Jana, Friends, Labyrinth Jani, Thirteenth Dimension, Diseases Jan, Words Jana, Communication Jana, Old times, Jani's Youth Janez, Ribnica, Fine Art Jan, Jack, Drums, Both of Us, Forest Fairy Jana, Soul Nests Jani, Breathing, Mind Games Jan, Space, Nanorobots, Mountains Janez, Forest, Mountaineering Jani, Tree Jana, Meaning of Life Jani, Patients, Yoga, Aleph, Nudist Village Jan, Words Jan, Unicorn, Sea Janez, Religions Jan, J., Altars Janez, She-bear Jana, From Freud to Peter Pan Janez, Job, Relationships, Money Janez, History, Systems, Past and Present Jani, Privatisation, Game Theory Epilogue
Jana, Friends, Labyrinth
Jana woke up into a late summer sunny morning. A bird concert flooded the room through an open window; they seemed in their top singing form. Innumerable voices, some loud, some quiet, some limited to a tone or two, the others extremely melodic. Through the window, she could see the remnants of fog, which was driven away from the meadow by the morning sun. The wood behind the house had already started to change colours, and lured to a walk. She ate a slice of bread, drank a glass of juice, and she was on her way, barefoot on the wet meadow. It was her daily ritual. Her bare soles had to tread all the grass her eye noticed. It took at least half an hour, every single day, regardless of the weather or season. ... Jani, Thirteenth Dimension, Diseases Imagine you go to bed in the evening, and wake up in the morning in a completely foreign world, in which nothing is familiar. You don't know any rules, the language, the objects, the people, the sounds – nothing is familiar to you, and the smells might be from Mars. And as you cannot see yourself, you wonder if it really is still you. For a moment you consider that just a little part of yourself got lost into the unknown. In front of you can see something which looks like a wall, you hear panting and sounds of breathing, and moaning of patients. Perhaps such sounds can be heard in Purgatory, the vestibule to Heaven or the threshold to Hell, where you must learn the suffering of your fellowman also by directly experiencing it, in order to be able to make choices regarding new directions of your travels with less difficulty. ...
Jan, Words The explanation was taken over by Jan, with poetical zeal: »Love, compassion, responsibility. Each of them separate, all together represent life. Love. The only world which is the common denominator of everything, and is everywhere, you only need to be aware of that, and discover it in every word and action. There is no need to search for it in the sky and on the Earth, as it is hidden inside you. You only need to open your palm, your heart, to be filled with it. It is the basic colour of life. Also, and especially, yours. .... Jana, Communication Jana's conviction that the company is getting along fabulously, complementing each other's thoughts just as thirty years ago, was reconfirmed. She spoke aloud about it, and thus also stopped Jan's interpretation; he was capable of talking about words for hours and hours straight. »That's why we have always been friends,« she praised them. She knew that people communicate in many different ways. Communications can be logical or illogical, good or bad, informative, descriptive, instructive, commanding, inquiring, one-sided or many-sided … Jana, Old times, Jani's Youth Jana had enormous amount of empathy. Her visits to Jani in hospital were enough to stir up sympathy with the patients. From the entire group of friends, she was the one with a most developed social instinct, which had been preventing her from sleeping peacefully for the last twenty-five years. She was not able to understand what had happened to her world. Yugoslavia, the country in which she grew up, had disintegrated. And as she grew up, studied, and
worked in it, she was able to see the difference. In Yugoslavia, everybody could study, everybody had a job, a flat, a life. The differences between the social strata was minimal. The level of safety was very high. After the state had disintegrated, seven new states were formed. .... Janez, Ribnica, Fine Art »But Ribnica got the best of it,« Janez explained his perspective on privatisation. »We were lucky that after the larger companies in Ribnica went bankrupt the locals took over the reins. In this way, not everything was completely ruined; many took the opportunity to turn halls, machines and know-how and build new successful companies which still exist today. The local owners as a rule cared about their reputation, and they did not fire their workers. As a rule, they also maintained correct work relations. But the socialism was over in Ribnica as well. ... Jan, Jack, Drums, Both of Us, Forest Fairy Jan joined the debate: »And one fine day you suddenly woke up and noticed that a new disease had been unstoppably spread through your homeland, the small-village disease. Like a wind the disease blew through all the parts of the valley, reaching even the most remote corners, and settled there for the eternity. Even little children are able to recognize the basic symptoms, as they are impossible to overlook: you must have a bigger car than your neighbour, more expensive furniture, also a bigger house, you must travel to exotic destinations, and your children must spend some time in a country of quality to improve their proficiency of foreign languages. ... Jana, Soul Nests Even in grammar school the favourite topic of discussion the four friends shared was determining soul closeness. It was the reason Jana interrupted the literary outbreak, and stated explaining that in our lives we get to know different people, different customs, different landscapes, different labyrinths, and different types of soul closeness. Soul closeness has its own measure units, defined by soul circles. Those do not arise from family ties, marital partnerships, jobs… These arise from the closeness to another human being. ... Jani, Breathing, Mind Games Jani's thoughts spontaneously turned to patients he had been meeting during his disease, and other sick people he had met in his life. Into which soul circles did they inhabit? He remembered his co-worker who had fallen ill recently. After leaving the hospital he had told him about his experiences which mostly revolved around medicines. He became familiar with a number of new medications, and learned to distinguish between medications and other substances which only alleviate the symptoms. ... Jan, Space, Nanorobots, Mountains Jan was the real specialist for imaginary worlds and fairy tales. He told Jani about the healing voyage to the other side of the universe. Every single day Jani embarked on such, on and similar journeys.
That's how Jani in no time at all left his immobile body, looked at it from above and flew over the hospital towards Ribnica, circled over the houses and shot among the trees on the Mala gora mountain range, towards the top dominated by the St. Ana's church, and further on, into the sky. He needed just a moment to reach the glacier below Skuta, and rock goats at the Dolgi hrbet range, and then he continued downwards towards the Rinka waterfall, he freshened up with its cool water, and swam up the waterfall towards the top. ... Janez, Forest, Mountaineering Janez deepened the thought. »The fact is that the local forests are becoming the essential living space for more and more people. Most of them are driven to seek shelter there because of the modern imperative which claims that a person has to do something good for him- or herself. There is nothing wrong with it, as a forest offers innumerable treats regardless of the cause for entering it. Only for a small part of visitors, however, a forest is a shelter where they find their lost inner peace, and a confirmation of the antient feeling of unity of man and nature, which humans lost when Adam and Eve were exiled from Paradise. Probably Paradise is (was) this unity, in which a human being was complete, and balanced, due to unbreakable connection with nature. ... Jani, Tree Several times a day Jani withdrew into his mind world, and performed visualisations. Two of his favourites were replacing the inner tube on his bike, and chopping wood. After putting a cardboard on the floor to protect the saddle from dirt, he turned the bike upside down. He unscrewed both nuts from the hub, and removed the wheel from its holder. He separated the tire from the rim, unscrewed the tire valve, and removed the inner tube. He placed the new inner tube, fastened it by the tire valve to the rim, and wrapped it evenly around the rim. Then he replaced the tire around the inner tube, and replaced the wheel to the hub, and fastened it by two screws. In the end he pumped air into the tire and rode his bike towards the forest. ... Jana, Meaning of Life Janez changed the direction of the conversation by describing his last meeting with a book. Several weeks before he had read the book 50 best philosophy ideas. One of the chapters in the book was Brain in a bathtub. The basic question was: when can people be considered people? Could we take a brain, put it in a bathtub and connect to life preservation systems, and still consider it a person? The brain records our history, our experiences, thoughts, ego, conscience, actually everything which makes as aware of being human. Is it enough? »Have you ever thought in this way? Felt this way?« he asked Jani. And thus touched the prevailing feeling Jani experienced during the first two months of the disease. ... Jani, Patients, Yoga, Aleph, Nudist Village Jani listened, but at the same time with a part of his mind thought about Jana's theory. Labyrinths are in several planes, horizontal, vertical, slanted, in all directions. Labyrinths and paths meet at innumerable points, and it is where we meet. All the labyrinths are eternal, so it is no wonder that when we meet someone, or have an experience, often say: »Nothing hap-
pens by accident«. Such 'accidents' happen where the path of our labyrinths cross. ... Jan, Words »Jani spoke the most words today, or perhaps he spoke such words which had more meaning,« Jan pondered. The talk about the word upset him, and made him want to narrate to his friends. He talked about his encounters with the Word, and about his observation of its existence, and its travel through our lives. ... Jan, Unicorn, Sea »And what about women, was there any erotica involved in your disease?« Janez asked, thus interrupting the silence which was becoming disturbing. »Were I to spend two months in bed, all my thoughts would revolve around women.« Jani remained speechless, as he really had no wish to discuss that topic. It was not a nice experience, so he only uttered one world: »Shit!« Jan helped him out of the pickle by starting a new story. »There is every day, there is time for dreams, there is a mythical time, and time to remember our unity with universe which existed before we were born, and will continue to exist long after our bodies disappear from the material world. Sometimes we return into the mythical time which is eternal, like the energy of the universe, where we are all one,« he said, and continued the story of a metamorphosis. ... Janez, Religons »Does religion help?« Janez asked. Jani said that religion always helps. He reconciled with God in a completely new way. Every meditation was a prayer, every prayer a meditation. Conversations with the almighty God became very personal, as there were no intermediaries left. They remained constantly in touch, 24 hours per day. And they discussed many topics. Janez started explaining his theory. ... Jan, J., Altars »On a weekend when J.'s head was bursting, when his thoughts revolved around his job, politics, and back to his job, his family… he took a walk in the forest. »Walking the paths made by animals and gnomes will bring me peace,« he believed. He walked along the forst path towards the Tabacco pear tree, in old times used for smuggling tabacco, and continued towards the road connecting Seljan and Grmada. After a hundred metres a logging road leads left towards Stene behind Sveta Ana, where a view opens into the valley. He took that road, and after a kilometre or so continued along an animal path, and reached the gnome path. ... Janez, She-bear »And now listen to my story,« Janez said. »I used to tell stories to my children, and to other children. The first tale speaks of a giant and a goldfish, the second of a yellow brown she-bear. The first tale is an old Ribnica legend about the goldfis, and the second tale I was told by a forest man during one of our encounters. Once upon a time there were a giant, a goldfish, and a yellow gold bear. The goldfish lived in the Ribnica lake. The Ribnica valley
used to be a huge lake, entirely surrounded by the Mala and Velika gora ridges, and other hills. ... Jana, From Freud to Peter Pan As many other nights, the friends dedicated that night to different topics from the field of psychology, to the Oedipus complex, to Peter Pan complex, to psychological wounds, to the conscious and the subconscious, and to mass psychology. Jana kept saying that all those contents trace the path through labyrinths of a human soul. Some influence directions we take on the crossroads, the others make our labyrinths colourful, and some allow us to enjoy the beauty we find we encounter on our way. Thanks to her job, Jana became familiar with a number of cases, and she liked to share them with her friends. She always found pleasure in observing people. And within minutes of observing a person she was already able to start writing a novel about that person, or evaluate the psychophysical characteristics of the observed person. ... Janez, Job, Relationships, Money And just as in the famous novel by Steinbeck, the structure of the conversation of the four friends was getting to the clear break point. There was no way to avoid their jobs, in which they were spending most of their lives. »Job presents one of the most important paths of our labyrinths,« Jana explained. »Simply because it takes almost half of our active life, and for some people even much more. Sometimes it makes sense to look at the career path as at an independent path of the labyrinth. A career path is an inseparable part of our personality development, which we keep building through all the jobs, and all the activities we have in our lives.« ... Janez, History, Systems, Past and Present Janes offered his interpretation: »Already in the antique period history was considered the teacher of life. But which version of history? Mine, or yours? Well, for the large part of history we can agree, at least in principle. The sequence of history is known, and especially the one which has left a special mark on a contemporary person. It speaks of the achieved level of comfort. In the beginning all people were active; some were hunters, the others gatherers. Next came growers and stock breeders. And at that point conformism occurred for the first time, as a result of the division of labour, and segmentation of the society. ... Jani, Privatisation, Game Theory Jani temperamentally joined the discussion, and continued: »The public administration is indispensable – it represents a buffer zone, and means for balancing the employed at the free market with the unemployed. The fact that the current politics allows the unemployment to exceed ten percent (officially, while unofficial data shows a much higher percentage) although it is quite obvious that the unemployment could be abolished overnight. And counting those working/escaping abroad, the numbers would be even higher. ...
Epilogue It was almost five in the morning. Orion had already appeared on the sky, the most beautiful constellation of the winter sky, as Jani liked to say. Also in late summer it is visible in early morning hours, otherwise it reigns from the sky in cold winter nights, together with Pleiades, Gemini, Canis Major… During the years the dreams of our lives thicken into solid matter of our beings, and help us survive also when the illness knocks on our door. ...
MY ENCOUNTER WITH GUILLAIN-BARRÉ SYNDROME TABLE OF CONTENTS
1. FOREWORD 2. INTRODUCTORY TEXTS ACUTE POLYRADICULONEURITIS – GUILLAIN-BARRÉ SYNDROME (GBS) REHABILITATION OF GBS PATIENTS 3. GENERAL COMMENTS ON THE TEXT 4. THE FIRST ENCOUNTER WITH GBS 5. TREATMENT AT THE NEUROLOGICAL DIVISION 6. AUTOSUGGESTION, VISUALISATION, BREATHING EXERCISES 7. REHABILITATION AT SOČA 8. THERAPIES 9. REHABILITATION AT HOME 10. THE SECOND PART OF REHABILITATION AT SOČA 11. FROM MARCH TO OCTOBER 2016 12. CONCLUSION – RECOVERY CHART
13. ENCLOSURES: Test charts from Soča: Chronological walking test, Berg balance scale, SHAP, Muscle test, Measurement of upper extremity movement, Literature available on the web 14. ACKNOWLEDGEMENT 15. ACCOMPANYING WORDS 16. DONORS AND SPONSORS
1. FOREWORD This book has been in the making for a year and a half. During the first six months the author directly experienced the Guillain-Barré syndrom, during his treatment and rehabilitation. During the next twelve months the rehabilitation process continued, and the last nine months of that period were also dedicated to writing. I travelled the path which many patients had travelled before me. Perhaps it is not a coincidece that this book saw the light of the day at the occasion of the hundredth anniversary of the first description of the Guillain-Barré syndrome. This book describes my experiences with the Guillain- Barré syndrom during the time of my hospitalisation at the Department of Neurology, and later during my rehabilitation at the University Rehabilitation Institute of the Republic of Slovenia – Soèa. Especially during the second period I learned about experiences of fifteen other patients suffering from the same disease. The literature on Guillain- Barré syndrome in the Slovenian language is very limited, and it is rather difficult to get information about the onset of the disease, treatment, recovery and – most importantly – about dealing with the consequences of the disease. I have not been able to find any material giving experiences of the patients during the time of disease, and rehabilitation. As I would have appreciated especially additional information describing the direct experiences of patients, I decided to write about the journey I made, acompanied by GBS. I hope it will be a guide, or at least a kind of a travel ratio for people who are, or will be travelling the same journey.
2. INTRODUCTORY TEXTS ACUTE POLYRADICULONEURITIS – GUILLAIN-BARRÉ SYNDROME (GBS) Clinical Picture, Diagnosing, Treatment, Recovery and prognosis, Conclusion Assistant Professor Dr. Saša Šega Jazbec, M.D., Division of Neurology, University Medical Centre Ljubljana REHABILITATION OF GBS PATIENTS Introduction, Early rehabilitation, Comprehensive rehabilitation at the tertiary level Treatment at the secondary and primary levels
Assist. Prof. Primož Novak, M. D., Ph. D., University Rehabilitation Institute, Republic of Slovenia
3. GENERAL COMMENTS ON THE TEXT The text below does not represent an expert opinion, except when the sources of authors are specifically quoted, or is giving any professional evaluation from the field of medicine and rehabilitation. Abbreviations used in the text: GBS - Guillain-Barré Syndrome Neuro – Univerzitetni klinični center, Nevrološka klinika Ljubljana (University Medical Centre, Ljubljana Clinic of Neurology) Soča – Univerzitetni rehabilitacijski inštitut Republike Slovenije – Soča, Ljubljana (University Rehabilitation Institute of the Republic of Slovenia – Soča, Ljubljana) EMG – Electromyography.
4. THE FIRST ENCOUNTER WITH GBS It starts suddenly, like a bolt from the blue. You go to bed healthy, and wake up paralysed. Simple description of the disease would be as follows: you contract a mild bacterial or viral infection, and your body starts producing antibodies which attack not only bacteria or viruses, but also nerve fibre sheaths. The sheaths deteriorate until the treatment stops the disease. In severe cases, not only the sheaths are affected, but also nerve fibres, and it happened in Jani's case as well. During the first EMG test his leg and arm muscles showed practically no response.
5. TREATMENT AT THE NEUROLOGICAL DIVISION The disease comes quickly, but it takes time to deal with its consequences. And it is especially true for neurological diseases, including GBS. The treatment started immediately upon Jani’s arrival to hospital. He was administered infusions of immunoglobulins (blood donors’ healthy antibodies). As the improvement was too slow, treatment with plasmapheresis was introduced after two weeks (patient’s blood is withdrawn, plasma removed from it, and then blood cells are returned into patient’s bloodstream). Both procedures are practically painless. The first procedure required insertion of a catheter into a vain on his arm through which medications were administered, and the second insertion of two catheters into veins of his groin to allow blood purification. Catheters were removed from his groin a couple of days after the end of the therapy. During his entire stay at
the Neuro he had catheters inserted in his veins. Every few days, when the flow through catheters became obstructed, they replaced them, using veins on both arms and legs. In the beginning it was among the most painful experiences, along with almost daily blood draws. Moving was, as a rule, also very painful, e.g. at washing in the morning.
6. AUTOSUGGESTION, VISUALISATION, BREATHING EXERCISES Jani was told that visualisation and autosuggestion exercises have a positive impact on recovery, and that these techniques are often used at recovery of top athletes, so he performed these also autosuggestion and visualisation exercises several times a day. They also helped him pass the time, during the day, but also during the long nights. It is best if a patient practices mind games with a topic close to him – it can be a hobby, or anything at all.
7. REHABILITATION AT SOČA The first two days after admittance to Soča are dedicated to adaptation to the new environment. The doctor examines the patient, and prepares a rehabilitation programme. The second and the third day a work therapist and a physical therapist test mobility, strength, and functional capacities of the patient. The third, or the fourth day therapy sessions start. At Soča the peculiarity of the new environment is immediately noticeable: everything is oriented towards improvement of functional capacity, and activity. A bed stops being the centre of all the activity – the focus is on the wheelchair, all kinds of exercises, and daily activities. The entire staff constantly encourages patients to move, and to be as independent as possible. 8. THERAPIES Physical therapy, Balance board – video games, Electro-stimulations, Hydrotherapy , Work therapy, Magnetic therapy, Psychological and social therapy, Group therapy, Therapies with doctors, therapists, nurses, technicians and other staff, Autotherapy. 9. REHABILITATION AT HOME Release from a hospital system, and return home has a very positive impact on a patient. Yet the downside is that the patient is suddenly has to rely almost entirely on himself, and his family. When realised from Soča, Jani was able to walk independently with a walker for a couple of hundred metres, so in the first month after his release from Soča he spent mostly in his wheel chair. Three months into his return home he still relied on help from his family for almost all daily tasks: undressing, dressing, preparation of food, hygiene, transport to physical therapy into the local health centre, etc.
10. THE SECOND PART OF REHABILITATION AT SOČA In February 2016 he returned to Soča for three weeks and continued his rehabilitation. In his opinion the rehabilitation went by too quickly, and should last at least five times longer, or as long as necessary to enable the patient for normal life and work; Jani was positive that after the rehabilitation and another month or so of staying at home he would return to work. He had the impression that he made more progress during a week at Soča than during three weeks spent at home, and he attributed it to the professional staff, daily exercising in a pool which was unavailable at home, and special exercise equipment at Soča.
11. FROM MARCH TO OCTOBER 2016 After being definitely released from Soča Jani continued therapies at home. Gradually he became able to use more and more tools he had prepared. He still exercises two to four hours a day (different therapies). He dedicated a part of the morning and a part of the afternoon to therapies, mostly it depends on the weather, and when the help with exercises is available. When the daily tasks he is able to perform by himself are taken into consideration as well, the time dedicated to exercising is even longer. He dedicated some work therapy time to amusing surfing the Net, e.g. looking for suitable fitness tools and weights. Usually he ordered a piece through internet, to be delivered to his home address, and usually he wasn't able to use the bought tool for at least a month. He bought a small 10-kg dumbbell (several disks, total weight 10 kg), but not even after twelve months he was able to use it. After 15 months he was able to perform some exercises using only the handle (approx. 2 kg) ...
12. CONCLUSION – RECOVERY CHART The eighteen month of Jani's encounter with GBS, and his recovery. From practically total immobility rehabilitation brought him to partial recovery. A part of the journey is behind him, but there is still a long way ahead of him – yet he is more and more optimistic about his future. The road he will have to travel is long, but he is already familiar with it, and the important thing is that Jani is able to spend longer and longer parts of his day independently, and he is still successful in his efforts to remedy consequences of the disease. RECOVERY CHART 13. ENCLOSURES - Test charts from Soča: Chronological walking test, Berg balance scale, SHAP, Muscle test, Measurement of upper extremity movement, Literature available on the web.
15. ACCOMPANYING WORDS Matej, Jani's son, Miran, Jani's brother, Jože Levstek, Stane Hafnar. ... It is difficult to imagine the procedures and therapies a patient must go through in order to master again the activities healthy people consider normal. Just as it is difficult to imagine the willpower, persistence and positive thinking an individual is capable of. I believe that the path to recovery is easier if you know somebody who had already travelled it, or is walking the path at the same time as you are. This book will most certainly prove to be of great assistance, and inspiration to many people – and not only to GBS patients. And last, but not the least – the person facing such a trial begins to appreciate life even more, and every day adds meaning to life. ... Jože Levstek ... The book is non-technical, but contains the professional knowledge accessible to laypersons; it is enriched with impressions, perceptions and personal observations. It is an accurate chronicle, and as such even a visually tangible diary, combining a personal or even a literary story with a manual for general use. It is a lament and a complaint, which ultimately gives comfort. ... Stane Hafnar
16. DONORS AND SPONSORS
The Faces of Guillain-Barre Syndrome by Janez Mate.