The Faces of Guillain Barré & CIDP 2018: Day 31- Janez #99

Part I.
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.

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.

Before the illness I was a mountaineer - alpinist. In the background of the picture is Triglav, the highest mountain in Slovenia. The goal is to once again stand at the top.

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 As the improvement was too slow, treatment with plasmapheresis was introduced after two weeks (patient’s blood is withdrawn, plasma removed from it, and then blood cells are returned into patient’s bloodstream).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.

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.

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.

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.

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.

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.

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) ...


Part II.
I had a harder form  GBS. I'm still recovering...
My experience (Month: Activities). Start: March 2015, age - 52 years old, 2 months hospital, 4.5 months rehabilitation center.
April: Treatment. Immobility of arms and legs. Capable only of moving his right foot for 20 cm, turning and raising head, breathing, swallowing food, controlling urine and excrement. Totally dependent on help (food, dressing, hygiene..). Lying in bed.
May: Exercising with absolute help from a therapist. Movement of arms and legs in the range of a couple of centimetres (movement of feet, slight movement of arms towards body).

June: Exercising with therapists’ help, with minimal cooperation from the patient (3% arms, 10% legs). Tools: hand wheel 1st gear, stationary bike 3rd gear, pulley intermittently, suspension 25 cm of movement. Movement of arms and legs for 10 cm. Slight leaning on legs when changing position with the aid of a board, assisted by two persons. Stretching bent legs.

July: Exercising with therapists’ help, with own strength 5% in arms, 15 % legs. Tools: hand wheel 2nd gear, stationary bike 5th gear, pulley intermittently, suspension 40 cm of movement. Stood in the hydraulic standing frame for 10 min. Slightly wider movements of arms and legs, more than 10 cm. Raising feet 10 cm from the ground, in all directions. Changing positions with the aid of a board, assisted by one person, travelled home for the first time, carried inside in his wheelchair. Moving in wheelchair using legs, 50 m backwards, 10 m forwards, using arms 5 m. Made some steps aided by the physical therapist, and a walker.

August: Exercising with therapists’ help, with his own strength 8% arms, 25% legs. Tools: hand wheel 3rd gear, stationary bike 9th gear, pulley 2 kg, using both arms, suspension 60 cm of movement, exercises in Hubbard’s tank. When leaning elbow on a table he was able to scratch his nose, hold a straw, put food in his mouth. Stepped down from a higher therapy table, stood in a walker. Changed positions by himself. Pushed wheelchair using legs, 100 m backwards, 25 m forwards, using arms 20 m. Walked aided by the physical therapist, and a walker.

September: Exercising with therapists’ help, with his own strength 10% arms, 30 % legs. Tools: hand wheel 4th gear, stationary bike 13th gear, pulley 3 kg, using both arms, walked 100 m with crutches (walker). Walked in a pool, swam backstroke 100 m. Practiced climbing steps in a pool. Clenched fist, 5% of the movement. Ate and drank slowly by himself. Washed his hands. Read a book. Wiped his nose without leaning elbow. Got up from the wheelchair, changed positions while standing. Turned by himself on his side in bed.
October 2015: Exercised independently, with his own strength 12% arms, 30% legs. Tools: hand wheel 4th gear, stationary bike 16th gear, pulley 4 kg, using both arms, walked while pushing a walker with a saddle (with frequent rests). Swam backstroke 200 m, forward 30 m. Walked up and down 8 steps. Ate all meals by himself and drank (except preparing the meal and cutting to pieces), washed his teeth. Used the toilet. By the end of the month start using computer keyboard with accessories.
March 2016: Able to unzip a light zipper and buttons. Took off a baggy sweater (over head) or coat, took off his socks, dressed and undressed sweatsuit. Took off shoes with laces. Put on shoes with Velcro. Drank using one hand. Strength in arms 15%, in legs 40%. Clenching fist - 10-20% of the movement. Exercised strength with 0.5 kg weight. Longer distances with a walker. Trained driving car on a distance of few kilometres. Started typing without accessories.
August 2016: Walked kilometre or more with a walker, over hundred metres using hiking poles. Exercised on a combined fitness tool, starting weight. Strength in arms 18%, in legs 45%. Clenching fist - 30% of the movement. Exercised for strength using 2 kg. drove a car for 10 km.

November 2016:  Walked a kilometre with hiking poles. Short walk on unlevel terrain. Partial movement of the hand upwards in wrist. Strenght in arms 20%, in legs 50%. Exercised for strength using 3 kg weight, exercised on a combined fitness tool, second gear. Clenching fist - 40% of the movement. Drove a car for more than 10 km.

From the books:  Janez Mate, MY ENCOUNTER WITH THE GUILLAIN-BARRÉ SYNDROME and THE FACES of Guillain-Barré SYNDROME, Knjižnica Miklova hiša, Ribnica 2017





More information yuo can see: http://www.miklovahisa.si/

MY ENCOUNTER WITH GUILLAIN-BARRÉ SYNDROME
Look inside: https://issuu.com/knjiznica.miklovahisa/docs/my_encounter_with_the_gb_syndrome

FACES of Guillain-Barré SYNDROME
Look inside: https://issuu.com/knjiznica.miklovahisa/docs/gbs_obrazi_eng.

The Faces of Guillain Barré & CIDP 2018: Day 31- Liz #98

My name is Liz Shank; I am 24 and live in San Diego, California. Summer of 2017 felt like it was going very well, I had been constantly busy between my work and social life. The only hiccup was that I felt like I was getting sick more often than usual. I took no sick days and wasn't slowing down for a second. 

Exactly a week before GBS diagnosis : Taken June 24, 2017

At the end of February 2017, I had received my first flu shot and felt sick within a couple days of getting it. The months went by and as I got to the last part of June I noticed a couple strange things. While out with friends two weeks before I entered the hospital, I felt as if I had a hair stuck in my throat and had them checking with flashlights for this "phantom hair" and my drinks tasted strange to me even though I had them countless times before. 

Throughout the last week of June I went about my regular schedule and woke up Friday, June 30, 2017, to get ready for work. While washing my hands, I realized that the water hitting the top of them felt dull. My feet had been feeling a little numb but I played it off as an effect from wearing heels. Throughout the day, I would check to see if my hands still felt strange under water…they did. That evening, I went out with friends and the next morning slept in and woke up feeling strange, I brushed off those strange feelings until I tried driving that evening and my left arm suddenly couldn’t lift up all the the way to turn my steering wheel.  

I searched my symptoms on the web and remember seeing Guillain-Barre Syndrome pop up as a possibility - I scrolled past thinking "well that can't be it." Can you believe that even after that I had an internal debate of whether it was “serious” enough to wait for hours in an emergency room? Luckily for my impatient twenty-three year old self, there were only a couple people in the waiting room that evening.

That night I heard about the option of Guillain-Barre Syndrome again as the doctor explained the different possibilities for my symptoms. I had a plethora of tests including a spinal tap that was inconclusive and three MRIs to rule out other issues, I was hospitalized and diagnosed with Guillain-Barre Syndrome (GBS) by morning. GBS is an autoimmune disorder in which the immune system attacks the nervous system damaging the nerve covering which results in tingling, numbness, and weakness beginning in your extremities that can quickly ascend throughout your body leaving it in paralysis. It is defined as rare, with only one to two cases per 100,000 people each year. The cause is unknown; however, approximately 50% of cases occur shortly after a viral or bacterial infection (such as the flu). I had been sick with a cough for quite awhile prior to the onset of GBS so I fit into that statistic; later on they confirmed I had mononucleosis in my system. GBS travels upward from the fingers and toes towards the torso and facial muscles and can become fatal if it reaches the diaphragm, weakening the muscle and causing breathing to become labored.

In my case, within a few days I found myself in ICU almost completely paralyzed and on a ventilator and nasogastric feeding tube. The days leading up to being intubated, I did not know how to feel as I lost the strength from my legs and lost the ability to get up and use the restroom. They had tried Intravenous Immunoglobulin but I was only getting worse as the treatments were given. I found that texting became a strain and my voice started to become a whisper. The weakness had spread to my diaphragm, throat muscles, and facial muscles which had begun to take away my ability to breathe and eat. In fear of intubation, I tried to eat and drink but couldn't swallow and found myself choking on water.

Receiving Plasmapheresis in ICU 

By July 5, 2017, I had a planned intubation. In preparation for the intubation, I had a nasogastric feeding tube and urinary catheter inserted. I was wheeled up to ICU, and my nurse held my hand as they prepared to put me to sleep for the procedure. Waking up from the procedure, I was in a daze and a nurse was repeating that I had a tube in my throat and  it was there to help me. While she spoke, tears streamed down my cheeks as I kept thinking, " I know that…why are my hands tied down…I CAN'T EVEN MOVE THEM."

Once in ICU, I had five rounds of Plasmapheresis (which removes plasma from the blood) over ten days to help speed recovery. I spent around two months in ICU and the minutes spent there felt like hours. At one point, I prayed asking God, "If you know I'm going to never recover and won't be able to move or talk again, please just take me now." I could only communicate with my loved ones and doctors by moving my head to spell out words on an alphabet board they would point to.  I felt like my body was extremely hot and constantly had a fan directed at me even though the air-conditioning was so cold my family members wore heavy jackets to stay in my room. I tried to not make a big deal that I would get blurry or double vision because I heard my doctor say that if I were to have those symptoms it meant it could be a more severe strain of GBS.

The nights were the worst for me, that's when the area would get dark and quiet and my family members would sleep. I would panic about not being able to breathe, about being too hot, and just about the possibility of something going wrong and me not being able to scream for help. I was given an easy-touch buzzer to call the nurses because my fingers could move a little to hit it but during the night my arm would fall off the pillow it was on and I couldn't move it up to hit the buzzer. One day I woke up in the middle in the night and found that I had lost my ability to move my fingers. The next morning, the doctors gathered and were baffled as to why I would gain movement then lose it. This made me have a break down about whether I would continue to have movement gains and then lose them (I later found that this was just muscle fatigue).

First day outside of ICU

Fortunately, more than 95% of patients recover with little to no residual effects. Because of the long-term nature of my stay, I had a tracheotomy and gastrostomy. I had the enormous task of then trying to learn how to breathe off the ventilator so I could use a Passy-Muir valve to talk, drink, and eventually eat. I got pneumonia a few times and even had to have liquid removed from between my lung and the outer wall. When I moved out of ICU to a lesser intense unit, I felt like my improvements were really showing. Because of some amazing speech and respiratory therapists I was getting better at speaking and was passing the tests to be able to eat a portion of my meals. I was finally getting my limbs to move with the help of my physical and occupational therapists. Sleeping became something I didn't panic about and I finally saw the light at the end of the tunnel. After almost three months in the hospital, I was transferred to a rehabilitation center where I spent about a month. 

100th Day Hospitalized

After 111 days of hospitalization, on October 19, 2017, I was able to walk out of rehab (a very short walk with my walker) and I finally found my way back home. It's been six months since I left the hospital and I have gone from looking at a parking lot and thinking, "I can't imagine walking across this even with my walker" to hiking a 6-mile muddy trail and only falling once. I have gone from needing three people to help transfer me from a wheelchair to a toilet to being able to fully care for myself. I have gone from not being able to open water bottles to opening items for others. I still can't run (not that I enjoyed doing that before…) and I still get tired easily, I am not able to get low to the ground and get back up again without an item to push myself up, and my feet are tingly and partially numb. But all in all, I feel grateful that I have made such great improvements in such a short time.

Walking out of Rehab : Taken October 19,2017

During my varying stages of this disease, I experienced an outpouring of support financially, emotionally, and spiritually from my healthcare providers and my community. To all of those who laid my foundation of support, I thank you. Thank you to those who held my hands even when I couldn’t squeeze back, who moved my limbs so they wouldn’t get stiff, who painted my nails and brushed my hair, who smiled at me when I couldn’t smile back, who told me stories when I couldn’t talk, who cried with me, who laughed with me, who wrote me well wishes, who brought me gifts to cheer me up, who kept me in their thoughts and prayers, who donated to a surprise GoFundMe for my medical costs, who orchestrated and participated in a surprise fundraiser, and who showed me in countless ways that I am loved. I never thought that I would feel so embraced by so many people. While in the hospital, I determined that I would spread awareness about GBS as a way to thank those who are supporting me in this journey towards full mobility and health.

 This is a "small" snippet of my GBS adventures and one day I want to share all of my small details because when I was at my worst I wanted to know that what I was feeling was "normal." I met a liaison from the GBS-CIDP Foundation and she made the disease seem like it could be conquered. I hope to do the same for someone else someday. My GBS journey to recovery is not yet over but the best is yet to come. 

Fellow GBS Survivor, Semret Russo

As Nelson Mandela stated, “It always seems impossible until it’s done.”

Hiking 6-Mile trail in Hawaii : Taken April 22,2018

Follow my journey!

Instagram: @liznicoleshank

Facebook: facebook.com/elizabeth.shank.7 ;

The Faces of Guillain Barré & CIDP 2018: Day 30- Kathy #97

My Guillain Barre Story by- Kathy Cairns

On the morning of December 5th, 2014, I woke up and realized that I couldn't get out of bed. Terrified, I called out for my husband! He ran upstairs and asked what was wrong. I told him, and he and my son helped me down the stairs and into the car. We arrived at the Emergency Department, and I needed a wheelchair to get inside. Once I was taken back to a bed and examined by the resident, she put in a call to neurology. I had no idea what was happening! I called my sister. It was her birthday, but she got in her car and drove an hour to be with me.

The neurologist came, examined me and told me that I had Guillain Barre Syndrome. I had no idea what that was. She said that I would need a lumbar puncture for a proper diagnosis. My sister and I discussed it, but I wasn't comfortable with the resident doing it, as she seemed very nervous and clumsy. There was no way she was going to stick a needle in my spine! I refused and was soon admitted, and taken to a room.

The first thing that all of the doctors asked me was if  I had a flu shot. I said that I did not. I wish I had a dollar for everytime I was asked that question! It was almost like they didn't believe me.

I was quickly put into a room and all of the necessary IV's were put in. I believe that IVIG was administered then. The next day, a different neurologist came in to see me to convince me to get the lumber puncture. I remembered he was explaining to me what GBS was, and as he was doing so, I literally threw up! My sister got me a basin, and held back my hair, I think I got some on her shoes. We decided that I should have the spinal tap, but only, if anesthesia would do it. I had it done, but it would be a day or two for the results. Meanwhile, the IVIG was not working and I started to go downhill.

 I remember the pain in my body was so intense! I felt as though I was on fire from the inside out! Also, the back pain was excruciating!  My room was kept very cold, and I was so hot. Relatives needed to wear their coats when they visited.

The days leading up to that day when I couldn't get out of bed, I hadn't been feeling well. I had what felt like an upper respiratory infection, and was under a lot of stress. I was watching my two grandsons and just didn't feel well. I remember I tripped on a blanket and my big toe bent under. I thought I broke it. I was in a lot of pain so the next day I called my podiatrist and went in to see if my toe was broken. It wasn't but he gave me an injection in my foot to take some of the pain away. It seemed find after that. The next day I bent over to pick something up and had the most excruciating pain in my back. I could barely move! I took the next day off from babysitting, but when I woke up that's when I felt this weird tingling in my fingertips. I also felt a little weak. I called my family doctor and went in to see her later in the day. My doctor wasn't in, so I had to see someone else. I told her my symptoms and she was very rushed. She gave me a lidocaine injection in my back muscles and prescribed muscle relaxers. I remember that night dragging myself up the stairs to go to bed. When I woke up the next morning I couldn't get out of bed. I called for my husband and he had to help me. He called the doctor's office and they told me to go to the hospital. It took my husband and my son to help me down the stairs. By the time we got to the hospital, I couldn't walk. That's when my terrifying journey began!

When it was apparent that the IVIG wasn't working, I was taken to Interventional Radiology, where lines were put in my neck for plasmapheresis.  While trying to hook me up for my first treatment, a piece of skin fell from my site. My sister told me not to look, but you know when someone tells you not to look, you have to look! It was then that I had a panic attack and trouble swallowing.  The next thing I remember is waking up intubated and hooked up to a ventilator! My sister walked in and asked why I was awake. She wanted me sedated while intubated. I just looked at her with questioning eyes as I had no idea.

Apparently, my blood pressure was dangerously low and the doctor thought it best to keep me awake. I tried to breathe with the ventilator and not fight it. I thought that this would be for the best. Then, the praying began. I prayed so hard for my life. What else could  I do while lying there awake and listening to the sounds of machinery.

The next few days were critical! My sodium levels dropped, and it was touch and go! I continued to pray. Shortly after, I started having conversations with Jesus. He was by my bedside. My sister would come in and say "I don't know who you were talking to, but you were having a good conversation with somebody." I couldn't speak so I was unable to tell anyone. I knew that after those visits with Jesus or God, that I would be okay! I felt a calm that I hadn't experienced up until then!
Things started to turn around after that! I was taken off of the ventilator after a week. I was then transferred out of ICU and to a regular room. The Doctor said that it was a miracle that I survived! After a few weeks, I was sent to a rehab faciity, where I spent the next three and a half weeks as an impatient, relearning how to walk, dress myself, and get back to as close to normal as GBS would allow. It was hard work! I was at one of the best rehabs in the area and was very fortunate! I left the rehab with a walker and continued outpatient therapy for two more months. I graduated from the wheelchair, to the walker, then the cane, and finally no aides for walking.

I feel very fortunate in my recovery and feel great empathy for the disabled! My famiy and faith truly helped in my recovery! Although, I still have some residuals after three years, I can live with those, and I look forward to enjoying the rest of my life with my family and friends!

The Faces of Guillain Barré & CIDP 2018: Day 30- Claudia #96

Mi nombre es Claudia y hace unas semanas mi padre fue diagnosticado con Guillian-Barre, el está en la foto que te envío adjunto, el tiene 63 años su salud ha sido buena sólo que desde hace un tiempo él tomaba (alcohol) muy seguido. Por lo demás sus niveles de presión, colesterol, azúcar han estado bien antes y después de GBS.

Mi padre recibió en el hospital de Monterrey Nuevo León México 20 frascos de inmunoglobulina, después de una semana fue dado de alta y ahora esta en casa, no tiene ningún medicamento, no hay terapia ya que no hay lugar disponible hasta dentro de 7 semanas y el medico lo ha citado nuevamente hasta dentro de 12 semanas! El no duerme bien, come poco y ha bajado de peso, sus pulmones están débiles y se le dificulta toser o expulsar flemas, sus manos se mueven poco, tenemos poca un información de GBS y dia a dia hacemos mucha oración y lo ayudamos a luchar por su recuperación.

Por favor toda su orientación es de gran ayuda.

Gracias.

Nosotros somos de monclova coahuila México (norte)

The Faces of Guillain Barré & CIDP 2018: Day 29- Kevin #95

On December 9th, 2015-Kevin Baxter's life was put on hold.

At the time I was a quite fit 50yr old, played Rugby, did weights, cycling and walked my beloved dogs! Suddenly wham!! It all started with very bad stomach troubles then horrendous back ache for least a week. But I carried on working. Then one night I took myself to the Hospital. I explained my symptoms, had blood tests, was placed on a drip, then sent home with pills and appointment for a CT scan next day! I was in total pain but the scan showed nothing. I went to bed as normal but in the morning, as I tried to get out of bed I collapsed in a heap on floor. I crawled down stairs to get help from my daughter because my partner was at work. I was thinking it was heart attack. Two hours later my doctor arrived... After an examination of my bum area and my paralysis getting worse he called  an ambulance where doctors and nurses prodded and pulled me about. Still unsure so they rushed me to another hospital. At the time I didn't ask questions. It was just a blur.

I had a MRI scan that night, still nothing, a catheter was fitted with a relief to go a wee. The Doctor arrived, told me how to move my body and legs. It was now time for the lumbar puncture test where they put a needle in a patients back to check for protein levels. There was horrendous pain as he pulled the needle out, he touched a nerve. It was like an electric shock down my right leg... Yes I cried and cried in pain. The next day I was told that I had Guillain-Barré Syndrome (never heard of it). I had a horrible experience in the first hospital. No one turned me over. Again tears 😭  and hallucinations. I was started on IVIG treatment. I wasn't intubated but my peak flow was recorded daily to check on breathing.

Breakfast arrived but how can I feed myself (problem) in UK 🇬🇧 GBS is rare didn't know how to assist me my dignity was zero. On Christmas Eve I was transferred to a hospital nearer to home. I spent two weeks laying there. No physio at this time neck down was paralyzed.

I left there for a Rehab hospital. Physical movement returned. I had 3 Physios working on me. After 40 days I was allowed to go home. My front room was turned into my space; hospital bed, commode, etc... My partner of 23yrs held down two jobs plus caring for me my Daughter's. It was amazing.

Physiotherapy twice a week. Suffered emotionally & physically (my muscles were gone) physiologically.... Now few steps with crutches but have balance issues and essential Tremor in both hands. I lift weights daily and cardio. Fatigue continues to be a terrible problem..

Thank you to my close family  looking after me through this. My anxiety and depression is still there and I suffer with it.

What's weird is my partner worked hard to send me and one off my daughters to New York for my 50th birthday and her 18th birthday as a birthday treat! The trip was set for December 14th, 2015 for four days. But life and Guillain-Barré syndrome got in the way.

Today I am positive. It's nice to share. People don't understand, yes I look OK but inside my body I am hurting... Daily meds are morphine, Gabapenton, Ammertriptlyn and Fluxaten for moods etc..

Love to all GBS CIDP sufferers only you know. Love you Julie xx

The Faces of Guillain Barré & CIDP 2018: Day 28- Helaine #94

35 years ago, I was stricken with GBS.  I was 18 years old.  I had just had the swine flu vaccine and started taking birth control.  I went from one week of being perfectly fine and a week later, the family priest was performing last rites on me.

Prior to my hospitalization, I felt weird unable to stand without holding on to something.  I went to the ER, got a shot of Lithium, prescribed Valium and was sent home.  The doctors thought it was psychosomatic but I knew I was not imagining it.  It was 1983.  It wasn't diagnosed until 6 weeks later I had GBS.  I was paralyzed from the eyes down.  They initially thought it could be Myasthenia Gravis or Bell Palsy.  My family wasn't given much hope I would survive but I knew I wasn't ready to die.  After 6 weeks in the ICU, I began to get feeling back all over my body.  It was painful to get a well meaning hugs.  To the clinical staff, I was a miracle.  Everyday was met with rigorous physical and occupational therapy. 

Over 8 weeks, I managed to leave the hospital walking with a cane.  I promised God if he got me through it and if ever a situation came that I could help someone like I was helped, I would.  10 years later, it did.  My career choice changed from wanting to be a attorney to becoming a respiratory therapy.  I treated my own GBS patient 2 years later.  Their condition was not as severe as mine was but I was still able to help. 

April 18 of this year marked 35 years.  I refer to it as my 2nd birthday since my life hasn't been the same since. It has made me stronger and more compassionate and it led me to a professional I loved doing until a IV pole came down on my back and I had to have back surgery that now has me walking with a cane. 

I lost my ability to give a full smile after GBS and still it hurts but I'm grateful to be able to walk.  I had some GBS patients who remains in a wheelchair.  Besides the occasional nerve pain, I'm doing better than most.  I'm married with a amazing husband and my son is about to graduate HS.  Something I never imagined would happen when I was 18 happened and I think I'm a better and stronger person for having lived through it and had been able to help those like me.

 Even though I live with pain, I try to still remain optimistic because of where I once was and where I am now.  I was counted out but I'm still here.  I continue to live.v My former career allowed me the opportunity to help others like me and although I am not able to continue with my career due to nerve damage post back surgery.  I try to educate those facing similar obstacles.

-Helaine Hunt Martin-Jack.

The Faces of Guillain Barré & CIDP 2018: Day 27- Lee #93

Thought I'd share our story! 

Halloween Day, 2017, my husband, Lee Rousey woke up with numb feet, hands and could not taste. He went to work anyway, thinking he had slept wrong, by the time I had the kids ready for trick or treating and was waiting for him to get home, I got a phone call telling me the numbness has worsened and he was going to the ER. 

I was worried he had had a stroke as he was a heavy smoker of 30 years, had an extremely stressful job and was overweight. The hospital ran several tests and didn't find anything so thry sent hime home. He was recovering from bronchitis, so the Dr's just thought it was a complication from that. 

His symptoms worsened overnight so he back to the ER the next day, this time they kept him for 3 days and ran more tests. The neurologist did several tests for GBS, but they ruled it out because the weakness hadn't set in, only the numbness. Again They sent him home with no diagnoses.

Over the next 3 days I watched my husband deteriorate. By the end of the third day he had fallen twice and we asked strangers walking by to help us get him down our 7 stairs and into the car. As soon as he hobbled into his primary care Dr's office he knew right away and admitted him immediately.

The next 8 weeks were a literal nightmare. We have 3 kids, a 1 and 2 year old together and I have a 12 year old from another relationship. As Lee plummeted into this disease, I sat at home, totally helpless and bewildered with the kids, searching here and there and everywhere for help with the kids so I could be at the hospital everyday, even if just for a short time. I really and truly know what it means now to be in "survival mode." Thankfully his job was extremely supportive and someone was here almost every day to help.

After 4 weeks of progression of the disease, it eventually found it's way into his lungs and breathing. He had to be intubated and spent the next 6 weeks in the ICU of Kaiser San Francisco. They placed a tracheotomy tube in after 3 weeks of intubation and gave us the diagnosis of Axonal GBS because unfortunately, the Axons had also been damaged. At a certain point, the ICU Dr's started letting the kids in to visit him, which was totally amazing, and totally against the rules of the ICU, we are forever grateful for that.

We almost lost Lee twice during his hospital stay. The first time was when it made it's way into his lungs, he could not breathe, he could not reach the damn button for the nurse and by the time he did hit it, it took them 20 minutes to get to him, he was alone and terrified and thought he was going to die. The second time, i was there in the ICU, all his numbers were great and the intubation tube came out, we were excited because that tube was awful. I watched him totally crash when the tube came out and all the Dr's rushed in to get it back in immediately. It was a horrible time.

Lee's symptoms finally started to turn around after about 5 weeks in the ICU, so even though we were told many times, that symptoms start to reverse after about a month, it was a total of 9 weeks of progression for Lee. But once they started reversing, it was a really fast recovery of at least some of his symptoms.

He was transferred after just a few days of having the trach tube out to a rehab facility in Vallejo CA. This was a 3 week program of intensive physical therapy and then he was to come home. He did amazing at the than and though we were really nervous about him coming home, he's really done well in this rehab phase. 

It's slow going, he's been home for 10 weeks and he gets a tiny bit stronger everyday. When he got out, he could not make it around 3 isles of the grocery store without being totally wiped out, now he can get through the whole store. It's the little victories we celebrate today. He still cannot feel his feet, this is the biggest source of frustration for him. It's like a constant reminder of GBS, we can only hope and pray his feet come back.

He is set to go back to work in a month or so, though he will have alot of help and limited in what he can do. He has a very demanding job at the suites manager at the Giants stadium. But his work family is like no other. They threw a fundraiser for is last week which was packed with Lee's employees and coworkers. It was truly a moving experience. I just pray he will not push himself when he goes back to work.

What I can say is that recovery is a long road, the worst part is no one can give us a date. How much would we give for a Dr to tell us his feet will come back in 2, 4, 6 months? A year? 3 years? It's just so hard to not know, when or even if they will come back. The rehab phase has many unseen challenges, but we remain forever hopeful and constantly adapt to new normals for our family. We are just grateful he's alive and here to see our babies grow.

Thanks for reading.

The Faces of Guillain Barré & CIDP 2018: Day 26- Jasmyn #92

My name is Jasmyn, I am 24 years old from Ontario, Canada and this is my story of my fight with Guillain Barre Syndrome.

Before March 2017, Guillain-Barre Syndrome was only a disease I had briefly heard of in college while studying for a career in Paramedics. On March 21st, 2017, I left work early and went to see my family physician. I hadn’t been feeling well for about a week and assumed I had an on going cold. I was working patient transfer and between working with the sick and the long hours I always ended up under the weather. My family doctor told me I had a sinus infection and sent me home with some amoxicillin and a note for two days bed rest. On March 23rd, I woke up with no voice.  After looking at my throat in the mirror I realized I had developed tonsillitis. I attempted to take a drink of water and my amoxicillin and ended up choking on it, nothing was going down right. I took it easy and tried to rest, I had no idea how bad things could get.

The next day arrived and I felt terrible. I was still unable to swallow or get my medication down so we headed to the emergency room. I checked in at the ER and tried to explain with what little voice I had that I couldn’t get fluids down or my medication and was starting to feel dehydrated. My blood pressure was pretty high and that became their concern over everything. I waited for hours to be seen, I watched as people came in after me and were seen first. I felt forgotten.

As I waited my fingers and toes started tingling. I assumed I just wasn’t getting enough oxygen and tried deeper breathing and even stepping outside for fresh air. After several hours they took me back to a see and treat area where I again had to start a long wait to be seen. I know how the system works and all, but its hard waiting when you know something isn’t right. Finally, they called me back into a tiny little curtained “room” to wait some more. A resident came in and I explained my symptoms. I explained I was being treated for a sinus infection and had noticed I had also developed tonsillitis. I was starting to develop some back pain at this point, and the tingling in my hands and feet hadn’t improved. They swabbed my throat for mono and strep, which both came back negative. They gave me some morphine and asked me to sip on some water. Once again, I couldn’t get it down and started choking and coughing. Another resident came in to give their perspective and I explained that my hands and feet had started tingling. I explained I had a medical background and chatted until the doctor came in to check things out.

He had no answers other then a confirmation I had tonsillitis. They stuck me back out into the minor treatment waiting room and hooked me up to an IV for the dehydration and told me to continue sipping on water an to try a popsicle. After about an hour he sat me down at a desk and said he was sending me home and I had to force fluids and my medication down. I tried explaining I couldn’t and that something was wrong. No one wanted to listen and it broke me. I’ve always been on the other side of the healthcare system, now being the person needing help and not getting any when you know something is very wrong was terrifying. He sent me for an x-ray of my throat, which showed no abnormality and they discharged me.

Back home I started having more extreme back pain, and the tingling in my hands and feet had turned into numbness. Again, I attempted to take the medication and water and I automatically started choking. The water went right into my lungs. I tried sleeping briefly but the pain kept increasing. We decided to try our other local hospital. After waiting with extreme pain for a few more hours in the ER a doctor came in to tell me the tingling was due to me hyperventilating. I wasn’t, nor had I at all. I tried telling him but he wasn’t interested in listening. He prescribed another antibiotic and told me to go home and force fluids down with my medication. I didn’t want to leave but they were done listening to me.

At home the pain continued to increase in my back, becoming unbearable, the pain moved into my hips. I few hours later on March 25th I went back to the ER. This time the nurse I had took me more seriously. She sent me for a throat x-ray, and a chest x-ray.  I had blood work done, and swabs of my throat. An IV was placed to rehydrate me, and then the doctor came in and told me I had to get my medication down and that I would be sent home to rest. Just as I was losing all hope that anyone would help me the charge nurse came over and said she wanted me to stay for observation, she would find me a bed on a floor and I would be admitted. All I wanted was for someone to believe me and help me.

I was moved to a room on a floor when a bed became available. My IV was reconnected and they started me on some pain medication. A resident came in to do my workup, and I explained everything from the beginning in my whisper of a voice. He decided to test my reflexes. And I immediately knew something was very wrong. My reflexes were delayed. He then tried the Babinski test. I knew from school that my feet should react and curl. Nothing happened, I had no reaction whatsoever. We both just looked at each other and he left to find the doctor. I remember they sent me for a test in imaging and when I came back to the floor I was in isolation in a private room. Everyone entering had to wear gloves, gowns and masks.

On March 26th my doctor came in followed by an ENT, she wanted to scope me. I would finally we would get some answers. My vocal cords were paralyzed open. Completely abducted. Anything I attempted to swallow was going right into my lungs. This started the spiral. I was sent for a chest x-ray and they scheduled a CT scan and an MRI. They lifted my isolation when my swabs came back negative. I went down for the CT scan and when they lay me flat it became incredibly hard to breathe. I managed to get through the CT, but the MRI was a different story. They put me on some oxygen and lay me flat on their table and I couldn’t breathe.

I panicked. I was sent back to the floor where I began having weakness in my arms and legs. I had been writing notes to people as my voice became harder to hear, my writing became illegible as my arms became weaker. I developed double vision, and blurred vision. Every attempt to make my way to the bathroom became more difficult. I couldn’t hold myself up anymore. Then my breathing started deteriorating. For days liquids and saliva had been entering my lungs and now it made it very difficult to breathe. The on-call ICU physician was called to assess me and determined that a code team would come up and monitor me. Two respiratory therapists from the code team came up and attempted to improve my breathing with nebulized Ventolin. It made my breathing worse. They wanted me to go attempt to have the MRI again and attempted to coach my breathing but laying flat after the Ventolin treatment felt like drowning. They began deep suctioning my lungs trying to clear out everything that had collected in them. It took so much out of me, I couldn’t fight anymore. They said I had to keep trying to clear my lungs, or I’d end up intubated. I could barely move on my own anymore, the exhaustion was too much. I knew I needed to be intubated. They took me down to the ICU, restrained me, numbed my throat and sedated me. I woke up maybe an hour or two later intubated and still restrained. Not exactly the best situation to be in, but I could breathe. Before my sedation had worn off they had completed the MRI.

Over the next 15 days I was intubated.  About two days into intubation they told me they were planning on starting tube feeds, I can’t explain how awful the feeling of the cold liquid moving down the tube along my esophagus felt, but it was bad enough for me to fight accepting tube feeds for days. The only thing that changed my mind was threatening to insert a nasogastric tube, I wasn’t having any of that.  I was on and off tube feeds and protein for two weeks. Occasionally after evening feeds I would end up vomiting, which was a terrible experience.

equipment in icu: tube feeds and intravenous

Being intubated and incredibly weak did not stop me from communicating. I wrote notes to everyone throughout my intubation. I have over 150 double sided pages filled with notes. Some legible, some more resembling chicken scratch.

I was on a number of medications such as: fentanyl, morphine, dilaudid, gabapentin, Zofran, gravol, ibuprofen, Ativan, blood thinners, steroids, and potassium. I had blood drawn daily, and 2-3 intravenous lines maintained at all times. I had numerous tests; MRIs, lumbar puncture, x-rays, daily pulmonary function tests, EMGs, and ultrasounds. I worked almost daily with physiotherapy. They attempted to have me sit up and would either use a mechanical lift or attempt to lift me themselves into a chair to help strengthen my neck and core muscles.
I was given 5 doses of IVIG starting March 28th which began the start of my recovery. They were unsure of a diagnosis at the time. One of the working diagnosis was GBS, they decided IVIG could possibly help me.  After the treatment I was able to attempt to start walking again.

First week at physio working with ankle weights

April 9th I was extubated surrounded by an extensive team of respiratory therapists, ENT’s, neurologists, ICU physicians, and nurses. They were nervous I would need a tracheostomy. I am proud to say I did not. My vocal cords were still slowly recovering. But they showed improvement from prior to intubation with slight movement. Within an hour of being extubated I was taking my first steps ventilator free. 15 steps with the help of a walker and high flow oxygen.  The next day I met with a voice therapist for a swallow study, they tested me with water, thickened liquids and pudding to see what I could tolerate. I failed the test and was put back on intravenous fluids.

April 9th right after extubation

April 11th, we tried the swallow study again and I passed. I was cleared for thickened liquids. Each day following my voice therapist brought me things to try, thickened liquids turned into pureed food, and eventually solid food. I stayed in the ICU for close observation until April 14th. I was moved to another floor where I continued walking laps around the unit and attempting stairs for the first time. I was discharged at night on April 16th. Home for the end of Easter.

April 16: discharged

I saw an in-home Speech & Language Therapist the first week home. I also had a follow up with my ENT and neurologist. They all stated there was improvement but a long road ahead.

On April 19th I had a follow up cookie swallow test. I ate barium covered cookies and pudding while they imaged my vocal cords and throat. It was a relief watching the screen and seeing my vocal cords moving again. My follow up with the ENT included a scope which showed that my left vocal cord was lagging in recovery but improving more and more.

A few weeks later I began outpatient voice therapy, physiotherapy and counseling at a local hospital. I began daily vocal exercises and physical activity. I continued in those physiotherapy programs until October 2017. I began a new neurological physiotherapy program in November at the YMCA and am still attending it 3 times a week. My follow up EMG in October showed almost complete recovery of my large nerves. I still have some ways to go in getting my strength back to normal. I still get numbness in my feet, and cold related tingling in my hands, hopefully overtime this will correct itself. I am making my way around Ontario on mini hiking trips to improve my strength and lung capacity.
I wouldn’t be here today if it weren’t for the amazing staff I had at Grand River Hospital, I am great full for the care I received and for them saving my life.

current picture

I also had an incredible support team in my family, friends and coworkers. My mom slept in the ICU every night for almost 3 weeks, and I constantly had a stream of visitors filling up my room to sit and hold my hand, cheer me up and watch Netflix with.

support system

I lost 30 lbs during my 23 day stay at the hospital and still have scars from my many Intravenous lines that went interstitial. Throughout this experience I have lost so much, I may not see results yet but I know it will make me an incredibly strong person and I will be better for the experience I had.

Instagram: @jasmyndj
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