Survivors' Stories page #1
Provide Help Info
This Page is waiting to be filled. Send me your stories and any information you would like to share. If you would like to make yourself available to answer the questions of those viewing this page please include an E-mail address.
I am from North Dakota. I am 48. Aug 17 my feet became numb & tingly, Aug 18 my hands felt the same way, that night I was in excruciating pain, I had to cry. On Aug 19 I went to a chiropractor, Rex Byrd in Larimore, ND, thinking it was a pinched nerve & he would crack my back a few times & I would be home again, he had me hold my arms straight out in front of me, he gently pushed down on them & they went right down-he said "you have no resistance-you need to seek medical attention." So I called Dr Hagen, from Michigan, ND. He told me to get right to Grand Forks emergency & there at Altru Hospital Neurologist Merle Teetzen diagnosed me with GBS within 5 days of onset. The tingling & numbness had ascended to just above my knees by now, & to above my elbows, my thoughts were to accept this, deal with it, have faith & everything will be ok in the end. Dr. Teetzen had explained GBS to me and said it has to run its course and most people return to a normal lifestyle. I became very sensitive to any noise-I had to wear earplugs, also sensitive to light, so I always kept my window shades pulled, I didn't want any company-only a select few. I Was terribly constipated & in pain, I was so sick the sight or smell of food made me throw up. The numbness & tingling ascended upwards to envelope my whole body, I could not move much at all, but I did have use of my right arm which I was thankful for, I could reach for my glass of water. I could no longer walk, nurses had to turn me every few hrs. I had to use a bed pan for about 2 wks. I Had 5 immuno. treatments, and then my face became paralyzed too, I had lost most all my strength, at this point I really wanted to die. With concern of my wonderful Dr Teetzen & my family, I was flown by Airmed of Fargo, ND on Aug 30 to Rochester MN-the best hosp in the world, where I received 5 plasmapheresis treatments, & then I began to improve. Now, I just thought of this as a vacation, I had the remote control all to myself, meals were brought to me, I didn't even have to prepare them-life is great! I was so thankful when I could finally struggle to turn over in bed, to be able to take the cap off the toothpaste, the cellophane off the dinner plate, to sit in a lift wheel chair & have my daughter stroll me to the courtyard to get a breath of fresh air & view the pretty flowers, to be wheeled by my daughter to the chapel on Sunday morning to attend church services. All of these things had become major jobs-The little things were so hard to do-but finally everything became somewhat easier day by day. I was sent to rehab on Sept 11 (911)-I went in, in the wheelchair & went out 1 week later (Sept.18) walking, dressing myself & doing things on my own. I try to do daily exercises now, but get so busy with housework, etc. I drove to IA & back 1 month after getting out of rehab. This is about a 7 hr. drive. I do not become fatigued very much at all now. I am pretty much back to normal except for tingling & numbness in the hands & feet. I had a miraculous recovery. And I know that it was because of the prayers, love & support of so many. I never could have done it on my own. I am so thankful. I am truly blest.
The Time Of My Life
By: Craig Itzikowitz
Added 17 December, 2002
It seemed a workable situation. My 2 year old son had just contracted some kind of “Herpes” in his mouth. I was self-employed so I could stay home with him and nurse him while my wife, Marion went to work. I was physically exhausted too, so I would take this time to take a well deserved rest. I had been in the restaurant business and needless to say, I was under a tremendous amount of stress, as well I owed my body many hours of sleep.
I spent the next six days side by side with Dylan. We slept in the same bed together and sent Marion off to the spare room where she could get a good nights sleep and be refreshed for her job the next day. Dylan was really feeling bad and so there was a lot of cuddling and kissing to try and console his discomfort. Much to our delight Dylan started to feel better and the infection started to disappear. We thought that our life was going to continue on smoothly from that point!!!!
It was about four days after Dylan’s recovery that I started to feel a little bit “bogged down” .I thought that I was coming down with a bit of flu, but as I had never been sick before and usually managed to sleep anything off over night. I took a couple of my wife’s Tylenol #3 tablets and went to sleep. The next morning I woke up and was feeling slightly worse, but still nothing that I could not shake off. I was a little worried about a tingling sensation starting in my hands and feet. It was a Friday afternoon and my wife and I met some friends for lunch at the mall. I was experiencing a bit of pain in my mouth so I did not eat anything for lunch and for me, that was strange. Friday night I was still feeling bad so I went to bed very early and continued with the Tylenol#3’s and a few other tablets that I had.
The weekend I was feeling very bad so I stayed in bed. On Monday I took myself off to my family doctor and told him how I felt. By this time I had developed a huge mass of sores and apse’s on the roof of my mouth. He treated the problem in my mouth but ignored the fact that I had not eaten in 4 days, had no energy, was having problems breathing and the tingling “pins and needles “sensations in my hands and feet were getting worse. I made one more visit to this doctor in the later part of this week but no change in his diagnosis. I knew at this stage that I was sick, but still it was nothing that I could not sleep off.
12 MAY 1996 (Mothers Day)
It was Sunday morning and I had been in bed since the previous Friday. I had not eaten anything at all and was starting to feel weak and beginning to feel just a little bit troubled. I decided to go to the hospital emergency room to see if they could find something. At about 8.00AM I called up a friend of mine and asked him to take me to the local hospital. (Toronto Central) I knew I was sick and that it was more than flu. I was really feeling bad. After about an hour I was attended to by a doctor on duty . He asked me a few questions, put something down my nose and said that I was fine. After my insistence that I was not fine he than prescribed “Amoxil” for me just in case. I went home and got back into bed. At about 1.00PM I was feeling worse and as I knew my family doctor was on duty at the after hours clinic at Thornhill Square. I asked my wife to take me there as I could not drive at this stage. I managed to get up to his rooms and he once again examined me and came to this prognosis:
“Take a nice walk in the sunshine and you will be fine for work tomorrow”
I stumbled back to our car in the parking lot and we went home. I went back to sleep. At about 5.30PM “somebody or something (?)” made me get up and stumble downstairs. My wife, up to this point was not too concerned as both the hospital and my doctor had given me a clean bill of health. But this time when I emerged she knew that there was a problem. She tried to feed me a bowl of soup but I could not swallow anything, and when I collapsed on the kitchen floor she knew that something was wrong. She than called up my cousin Vanessa to take me to another hospital. At 6.00PM I was taken to the North York Hospital. At this stage I could not walk, so Gary Joffe carried me to his jeep and rushed me off to the hospital where I was placed in a wheelchair and taken inside the emergency rooms.
It was about 6.00 P.M. when I was lifted from the wheelchair onto a stretcher. As there was no blood oozing from anywhere on my body or any apparent broken bones that could be detected, nobody seemed to attend to me with great urgency. I was lying on the stretcher feeling very weak and not in a position to start waving my arms and stamping my feet, demanding immediate ‘service’ Eventually the doctor on duty came by and introduced to me the young intern who would be attending to me. He did the usual vital statistics examinations and announced that I was fine. After I protested that I was “not fine” the doctor came by again, looked at me lying on the stretcher and ordered some blood tests to see if I was suffering from “dehydration” ,even though I was lying on the stretcher struggling to breath and coughing up large amounts of phlegm. A spittoon was given to me and placed on my chest. When it was about three quarter ways full a nurse, who was taking my blood pressure, by mistake knocked the dish onto the floor. A minute later another nurse walked into the cubicle and the two nurses muttered how clumsy I was for knocking over the dish. This incident stayed in my mind for some reason, as I was lying there feeling so bad and still had to take that humiliation.
After an hour or two the results of the blood tests came back from the laboratory and with the conclusive evidence that I was not “dehydrated” and that as soon as the nurse had removed the I.V. drip from my hand I should gather all my things and head on home and have some rest. I listened to all this but I unable to talk or even move. I knew that I could not go home so I just lay there without even trying to protest. I remember watching my cousin telling the intern that they would not take me home. The doctor was called to reexamine me. After listening to my cousins insistence that I was not in any condition to go home, the doctor decided to take another look at my condition. “Get off the stretcher and let me see how you walk”, I remember the doctor saying to me, half walking away. I knew that I couldn’t, but I managed to sit up on the side off the stretcher and try to stand. I collapsed on the floor. It was only then that I noticed a sense of seriousness in the staff. I remember lying on the floor with lots of faces staring down at me. I was terrified at that stage and I just focused on the doctor who now had his full attention on me. After an unascertained period of time I remember very clearly the next few words that came out of the doctors mouth. He turned to my cousin and said” I am almost positive that Craig has a very rare condition called “GUILLAIN- BARRE’ SYNDROME”.
I was immediately sent up to the Intensive Care Unit and hooked up to all the necessary life support machines. I remember being told that I was in the ICU and that I was really ill with a disease that I had never heard of nor could I even remember such a strange name. All I thought was that I was in the process of dying. I was lying in the bed with all this confusion in my mind . I could not lift my arms nor legs and had no feeling in the rest of my body . The dying process had begun and I was sure that within a few hours I would on the other side. I felt that it wouldn’t be so bad as there were people there already that I loved very much and I would be with them. Just than a nurse spoke to me and said ”Your brother Gary is on the phone, he wants to know if you want him to fly in from South Africa?" "Yes!! Please!! Tell him to come now, I am dead!“ I requested.
up about 3 months later.
Even though I was not aware of what was happening to me over the next three months I will try to recount as accurate an account as possible.
The next morning I was sent by ambulance to Toronto Western Hospital where I would be treated over the next three months. After having the lumbar puncture to make the conclusive evidence that it was in fact “Guillain-Barre’ Syndrome”, it was decided that I would receive the “plasmapheresis” treatment. I was put on a ventilator and all the necessary devices were inserted to keep me alive and allow my body to start the recovery process.
The first two weeks were a very touch-and-go time for me. I picked up infections in the ICU and this caused my lungs to collapse. My blood pressure dropped to a dangerously low level at the same time my temperature went up too high. To the people around me and the medical staff who attended to me, these were very trying times. I was on a Morphine drip which I think was mixed with a touch of Demerol, so needles to say, to this day I have absolutely no recollection of my stay at Toronto Western Hospital.
My brother Gary did in fact fly in immediately from South Africa and sat vigilantly by my bedside for three weeks. I have no recollection of him being there nor seeing my wife or any other friends ,family or medical practitioners. I do in fact have some memories of that time. Thanks to the “Morphine” I have extraordinary memories of beyond belief hallucinations that I am still today trying to piece together. These cryptic thoughts ranged from cannibalism to playing basketball with the Raptors .At times reality and delusion would intermingle ,which would lead to very fascinating dreams. Most of these dreams are too bizarre to include. Another very frustrating activity was the “Communication Board” ,with which many hours were spent trying to decipher one word and would inevitably result in failure.
After requesting for my brother to come to Canada, the next time I became aware that I was in fact alive, I was back in the ICU at North York General. I cannot recall how I felt the first time I opened my eyes ,but I do remember the hallucinations becoming less .I recall my wife and mother in law sitting by my bed every day and as well they had merged into my dreams. I had no idea why they were there but I did enjoy the security that they gave to me when they were there, and I felt a tremendous amount of fear when they were gone. I do remember that I could not move one part of my body. I was terrified. As I lay there I had no idea what on earth was going on ,but I did realize one thing “I WAS ALIVE”. I must of had some emotions at that time as I do remember crying very frequently and the sensation of tears streaming down my face. At times there was nobody there to wipe my tears from my face and I remember my pillow getting extremely wet many a time. Slowly I must have started to understand a little bit of my circumstances. I was heavily sedated in order to ease me into the situation. The only comforting thing was being told constantly that I was not going to die and that I was going to get better. The words “Guillain-Barre’” and “Myelin Sheath” meant nothing to me. I was going to recover. I was not going to die! .I never understood anything else.
As the days went by my wife, the doctors and nurses slowly tried to explain to me what had happened. I was continually ensured that my son Dylan was all right and everything at home was being taken care off, as they knew that that would be a primary concern of mine. From that early stage I was told my only job was to recover, everything else would be taken care of. I believed that and set my focus on getting better. I had a job to do now, so I better get started and succeed.
A physiotherapist was assigned to me. She was a very high spirited Chinese lady, named Mimi, who came to me every morning for an hour and another workout in the afternoon. My body was very stiff and the range of motion exercises were quite painful, but I had a job to do so I just did my best. The only exercise that I hated was sitting in the “Jerry” chair .In order to start building trunk muscles I had to sit in the chair for 2 - 4 hours daily. That was not the worst part of it. What I hated the most was being transferred to and from in the “Hoyer” lift. As my body was a dead weight, I was put into this hammock type contraption, lifted up, like a dead carcass in an abattoir, and lowered into the chair, where I was to sit for a few hours. My bottom would get sore after about half an hour, but I could neither shift my weight nor cry for help. I had to wait until the time was up before I was transferred back to my bed. I used to stare at the nurses passing by and believed that I could will them to move me by using mental telepathy. Obviously I was not gifted with telepathic powers, as the nurses never once responded to those messages .This however, never stopped me from attempting to send out those signals over the next few months.
I started getting used to the daily visits by my wife and mother in law. It took me a long time to realize why they were there. I never worried about it. I just felt safe when I would see their familiar faces arrive each day. I wasn’t quite sure why my mother in law was there every day. I of course did not know that she flew in from South Africa for three months to help my wife and son. I thought that I was having hallucinations again but these were pleasant ones.
Every Saturday and Sunday my wife would bring my son to see me .I could not do or say anything but I think that due to the strong bond that we had prior to my hospitalization, he was totally confused about the entire situation, but in a way he trusted me enough to believe that I hadn’t left him and that things will return to normal again. “Thank God for Marion, Dylan and Joyce.”
Dylan was fantastic all through my hospitalization. I think that he turned the whole episode into an adventure. He would jump up on my bed and hug and kiss me. A fun activity for him was raising and lowering my bed with the automatic lever. All the nurses and floor staff knew him and paid him a lot of attention. His second birthday fell while I was In the ICU. My wife arranged for a few family members to be allowed into the ICU, as well as a “Barney” birthday cake and a mild celebration was held in the acute care ICU of North York General. I will never forget Dylan’s second birthday party.
Slowly with Mimi’s range of motion exercises I started first getting a twitch in my fingers and then followed by a slight movement in one finger and then the whole hand. Each progression was a milestone and an accomplishment. I still did not know why I was happy with moving a finger but I was proud of myself I think the medication caused me not to worry about anything and just to focus on what was happening. This is a fantastic attribute to the drugs. At that stage I was on very high dosage of antidepressants and anti anxiety drugs as well as extremely strong pain killers.
I remember the initialization of every movement. Every day Mimi would waltz into my cubicle, grab a limb and start making me do exercises. This would go on for about an hour and no sooner had she left the nurse would lower me into my chair where I would sit in excruciating discomfort for three hours. After lunch Mimi would arrive back and we would do more exercises. I believe that because of Mimi’s complete dedication and expert knowledge, as well as her ability to motivate and understand me, my recovery started off successfully. ‘Thank God for her.’
After three months in ICU I was told that I was ready to be moved down to the general ward. I was petrified. I had become very comfortable in my “Bed number 11”in the ICU. I was used to the nurses and all the surroundings. I did not want to leave the ICU. I wanted to stay there forever. Fortunately for me the hospital was very full and there were no beds available. Eventually, the time came and I was moved to a bed in “Three North”. In the administrations hope to free up my bed in the ICU, “3N” had the only available private ward available, so I was moved down to the acute care “geriatric” ward. This worked to my advantage as I was the only person under sixty and every one was happy to have me. I need not have had any fears or reservations about moving out of the ICU as I had incredible attention and care on “3N”.
I was assigned a new physiotherapist as well as an occupational therapist. I pursued my recovery just as diligently as I did upstairs. I started recovering very well. Between my O.T. and P.T. they never gave me much time to relax in the day .After a few weeks I was moving my arms and even trying to sit up on the side of the bed. My next goal was to brush my own teeth. This took quite a while but eventually I was sitting at the side of my bed brushing my teeth. Each time I accomplished a new feat, the whole floor staff would come in and congratulate me. This would be a great motivator. It seemed as every one knew. The cleaner would stop mopping in my room for a second and say “I believe you put you shirt on today. Well done Craig”
Even though my recovery seemed to be progressing positively, everything was not going well. I was starting to realize what was going on .I began to worry about my family, even though I was told that everything was being attended to. The whole situation seemed so strange to me and I was still in a state of disbelief, that every promise and assurance made to me, seemed so strange and unbelievable. I felt totally helpless that I could not get up and go and make sure for myself. This led to feelings of guilt. Why did I let this happen to me? I should have prevented it!! I felt terribly lonely and isolated. I was embarrassed that I was weak enough to let myself get so severely disabled.
The daily visits by my wife and mother in law continued. I don’t think they missed one day. They arrived at 10.30pm and left at 4.00pm. After 4.00pm most of the activity dies down at the hospital and it becomes relatively quite. Besides the nurses doing their regular checks and coming in every two hours to turn me (to prevent bedsores) I was not disturbed much. From 4.00pm to 8.00 am the next day, it was a very long time. I had a long time to think. I had a problem sleeping at night and the pain was unbearable. The sleeping tablet they gave me never helped. I was up every night from about 2.00 am. The nurse would change my pillow every night as it would get sopping wet from tears. I would lie crying and sobbing every night for hours. That was the only thing that would put me back to sleep for a few hours.
As the time moved it was apparent that I was getting stronger and my recovery was starting to improve at an satisfactory rate .I was still “paralyzed” but I was working on my motor skills. My voice had not yet started to come back, but the speech therapist gave me lots of exercises to do and was positive that it would eventually return. For the first time in my life I was told that the nutritionist was worried that I was becoming underweight. I was still being fed through the “G Tube” as I was not able to swallow anything. I had lost 57 pounds and my weight was still going down. Eventually the tube was removed from me and foods were slowly reintroduced to my diet. Another positive step was when the “catheter” was removed. These steps were benchmark events in my life at the time as they allowed me to start feeling human again.
One of the most exiting developments in my recovery happened early one morning. The nurses had just finished doing their usual check ups on me and I was lying in bed waiting for the physiotherapist to come in and get started with my morning workout. Instead of Nimi, the physiotherapist, to my greatest shock walked in my brother Gary. Even though I was in total stupefaction, I realized immediately that he had come to see me. Seeing him at my bedside was a huge surprise for me ,but I was not ready for what was to follow a few moments later. He kissed me hello and excused himself to go to the washroom. As I lay there trying to contain my excitement of his arrival I opened my eyes to see my wonderful father standing over my bed. I closed my eyes again and was quite disappointed as I thought that I was having those hallucinations again and none of this real. The next thing I felt was my fathers hands cupping my face and I could hear his sobbing as the reality hit home to him, that here I was , his youngest son, lying paralyzed in a hospital room. He just held me and we both sobbed uncontrollably.
The whole floor was exited about my surprise visitors and all through the day everyone came in to meet my father and brother. This event definitely marked a turning point in my recovery. Gary was so positive and in his usual take-charge manner had me doing extra therapy sessions .He even got the key to the physio department gym as it was closed on weekends and we spent the whole of Saturday and Sunday, between the parallel bars practicing to stand up from the wheelchair. Their visit, due to business restraints was only for 6 days. They gave me strength to fight and made me realize that I was not alone. Nobody head deserted me and my family. We were all a team now, and everyone had a part to play. My only job was to get better. Every body would do their part and we would get through this. Thank God for my Gary and all the people prayed for me as well as the wonderful people who joined the team.
It was once again time be moved. My medical team felt that it was time for me to be transferred to a rehabilitation hospital. The fears and anxiety started coming back to me. I was very comfortable where I was. I wanted to stay there, but I knew that I now required a more specialized type of treatment which I would not receive at North York. I was accepted at Lyndhurst Rehabilitation Hospital. This is predominantly a spinal cord injury hospital ,but as the treatment would be similar I was sent there .After two and a half months I was in the ambulance once again and on my way to another institution.
Lyndhurst Rehabilitation Hospital (Toronto)
Nothing could ever have prepared me for what I was about to witness over the next three months. Even though I was still paralyzed, besides the movement of my arms and neck, I never thought of myself being like that for the rest of my life. It was just temporary and soon I would be normal again. Every other patient in there had a spinal cord injury. I shared a room with three other people. A young guy of 25 who was shot in a convenience store hold up. The bullet deflected of his shoulder and into his spine. He would be paralyzed for the rest of his life. A 42 your old man with 2 young kids who was injured at work. A complete quadriplegic with no hope of recovery. The fourth roommate was a 17 year old kid who broke his neck after falling of a bicycle while kidding around with his buddies. He too will never walk again.
Once again I had to get settled in .The usual tests and introductions were done. I got settled in and tried to get myself ready for the next part of my recovery. This would be an extremely important time for me because this would determine the extent of my recovery. It was here that I would have to relearn everything that I would need to do in order to function back in my home environment
The next morning I was introduced to my physiotherapist Sylvia and my occupational therapist Sue. I knew I had long way to go but I was still part of that team and I could not let anyone down. I had to do my part. I had to get better. Everybody was still rooting for me. I spent the morning at the occupational therapist learning how regain my fine motor skills. I had to relearn even the most basic things such as writing and turning the pages of a book. I persevered and pushed myself to try and reach my goals as soon as possible. After O.T. I would spend the rest of the day in the gymnasium with my therapist. I had to learn how to stand, walk and do all other basic activities. The three months at Lyndhurst were not very pleasant but were very beneficial. I am grateful that I received the high level of expertise and dedication there.
When I was discharged from Lyndhurst I was walking with the assistance of a walking stick as well as braces on both legs (AFO’s) I was able to walk, but I had a problem with movement and strength in my ankle. My hands had partially regained some strength but I new that it would still take a long time to reach satisfactory level of recovery. Some muscles in my face had been severed and there was very little chance of recovery. My voice had changed completely as a result of the tracheotomy and all the pipes and tubes that were shoved down my throat. My biggest problem was still the excruciating ,burning pain that I was experiencing in both feet and legs. The only way to try and control this was to remain on all the medication.
I walked out of Lyndhurst In December 1996.
It is now a year and a half since I got GBS It is one of the most dreadful diseases to effect a person. It strikes without any warning and we have absolutely no control. The fact that the medical profession has no idea as to what the cause of GBS makes it even more frustrating.
Guillain-Barre’ Syndrome attacked me in the prime of my life at the age of 34. It reduced me to half the person that I used to be, due to the physical disabilities that I remain with. It completely upturned the life that I had strived so hard to build and robbed me of that precious time that I desired to spend with my beloved family. Please GOD, I pray that I have the strength and faith to rebuild my life and not suffer any more from this dreaded disease.
February 15, 1998
It is now a year and a half since I got ill and I am extremely satisfied with the rate of my recovery. Mentally I do not know if I will come to terms with the fact that I am physically disabled, as I have permanent damage to the axons in the bones of my lower extremities. This coupled with the loss of the dorsiey flex muscle has left the bottom half of my legs and ankles paralyzed, I can not run or stand for long periods of time, as well my balance is not very stable.
I have learnt to live with some restrictions in the things I can not do and fought very hard to compensate and do as much as I can .I drive ,walk and do almost everything now and the only battle I have is to fight the ever present pain I suffer in my feet due to exposed nerve endings.
I have good days and bad days, and my goal is to have more good ones than bad.
Nice job on the web site. I'm of the opinion that mental activities (like building a web site) are nearly as important as physical therapy.
It's now been thirty months since my onset of GBS. I am pleased to say that recovery does continue.
Last April, I walked three miles for the first time since my onset. It took me 100 minutes. This was somewhat discouraging as, before GBS, I would have been able to run that distance in less than thirty minutes. I set a goal for myself of covering the three miles in an hour. I've been walking 6 days/week (using my haed treadmill in bad weather) and have reduced my time for three miles to less than 70 minutes. During this time, I have been encouraged by complete strangers who are regular users of the walking path I use. Their observations of my improvement are a big boost. I haven't quite reached my goal but will continue to strive for it. As I close in on it, the improvements are coming a bit slower, but there is improvement.
At 26 months, Medicare decided I no longer needed physical therapy. I joined a strengthening class that meets twice weekly at our YMCA. It has been a big help. One comment I'd make to fellow GBS’ers is that one should keep two lists: things you cannot do and things you can do. It's helpful every time you move an item from the "cannot" side to the "can" side. Remember, victory in a war comes from a lot of small victories.
My good wishes to all who are "Getting Better Slowly",
Jim Deck Valparaiso, IN (except for "snowbird time" in AZ)
Dad is on his way to HIS home
submitted by denery
February 22, 2003
want to start by thanking you all for being here when my family needed
This page was last modified: July 18, 2006