The Faces of Guillain Barré & CIDP Summer Edition- Syaza #101

Hi, I’m Syaza Wazir from Kedah, Malaysia. I am a previously healthy 23 years old, striving for my degree in medicine at a local medical school, with the hope of becoming a doctor. I was very active, love outdoors and doing all the sports under the sun. I was doing quite well in med school too and mange to sail through and complete my 4th year.

It was on May 2017 that I believed the first symptom appeared. I was doing my elective posting at the Emergency Department and noticed a strange feeling in both my big toes. They were feeling tingly and kind of numb, like the feeling that you get after sitting on your legs for too long. But I brushed it away, thinking that the hustle of ED posting was causing it as I had to be on my feet for almost 10 hours and it was the month of Ramadhan, meaning I’m fasting. Also, I had just got a new pair of shoes for the posting, so I thought that it might be due to that too.

About two weeks after that, I started having this deep aching pain between my shoulder blades. Again, thinking that I might be too tired, I just bared with it. After all, I am an active healthy 23 year old, what could go wrong right?

Then, came August. It was time for me to register for my final year of med school. I was nervous at the same time, excited for the year. I was moving into a new apartment with my friends and also starting my final year of
my degree. A few days before going back to my college, I took a flu shot, since I’m a person who easily gets sick so I thought the shot would help.

Few days after, I was watching a movie with a friend when suddenly I felt a sharp stabbing pain at my upper back. At first I thought it was just a cramp due to my poor posture. It first came and went away but then it got
worse in the evening. The pain was so bad that I can barely move, or breathe. I could also feel my temperature rising. I fell asleep then woke up with a fever but the pain has reduced.
The next day, the fever did not subside and I was feeling weak. I went to the ED and was sent home with antibiotics and Paracetamol with a diagnosis of viral fever. The next day, I woke up with a deaf left ear. I was
still having high grade fever and I was hallucinating. I was seeing things that were not there. However, I just took my meds and rested.

The next day was my 23rd birthday. I celebrated with having IV drips at the GP clinic. My lymphocyte counts were getting higher and I was getting so dehydrated. I was not eating well either.

Two days after, still burning with what seemed like the worst fever of my life, I suddenly had pain in my abdomen. My friend drove me to the ED and I was finally admitted since my liver enzymes were all deranged and I was showing signs of shock. So I was placed in the surgical ward as they first suspected me to have acute cholecystitis, which is an inflammation of the gall bladder, and scheduled me for an ultrasound the next day.
However, the ultrasound result was clear and the doctors were puzzled because I was still having the symptoms and my blood test results weren’t improving despite given two types of antibiotics and painkillers.


During my stay in the surgicaI ward, I remembered feeling severely tired towards the evening, I was having terrible headaches, pain in the eyes, in the neck, in my back and was feeling weaker as I find it more and more
difficult to get out of bed.

On the 8th day of admission, I woke up from my afternoon nap and suddenly realised I can’t move my face. My tongue and lips felt weird and I can’t close my eyes shut. Being a medical student, I know this was very wrong.
Something was totally wrong. I asked my friend to call the doctor on duty and she checked my calcium and  electrolytes and they came back normal. At this time, I was already having difficulty swallowing and my speech
was slurred. The doctors finally decided to refer me to the medical department. They first suspected me of myasthenia gravis because of the facial paralysis. The rest was all a blur. Words like possible MS, Lupus, thyroid
problems, were getting to my ears and I knew they were no joke. They ran numerous blood tests and also scheduled me for a chest x-ray and a CT scan of the brain to rule out other causes and they came back fine.

The next day, the doctor came and told me that it might be Guillain Barré Syndrome, since I had a history of flu shot and I had a history of flu like illness. They told me that they will need to do a lumbar puncture to make the
diagnosis.

On 29th of August 2018, I got the diagnosis of Guillain Barré Syndrome as my CSF protein was high and my symptoms fit the diagnosis. I was immediately admitted to the ICU as they were anticipating respiratory failure as I was getting weaker and weaker by the hour. By this time, I wasn’t able to sit unsupported, stand, or walk anymore. I couldn’t do the basic human things without the help of my parents or the nurses. I couldn’t swallow, so they inserted a nasogastric tube. I couldn’t pass my urine as well, so they inserted a catheter. My whole body was hurting but I couldn’t move. My breathing was getting faster and laboured, my heart rate was high and my blood pressure was all over the place. I started to realise that I’m slowly getting worse and I was so scared about just how much worse things could get. I knew how the disease works as I did study it as a medical student. I was now then attended 24 hours a day, being bathed, fed, turned over, dressed, and  cleaned, just like a baby. As a young active sports fan, I lost my dignity, privacy and independence just like that,
in a blink of an eye. On top of that, I had to deal with the numbness and pain 24 hours, seven days a week and I would admit that every day was a challenge, not just for me but also the people who cared for me. Thankfully
the only part of my body that was not affected was my chest which meant I avoided mechanical ventilation. I was given IVIG for 5 days and was then transferred to the ward. I was prescribed Gabapentin for the nerve
pain, Tramadol which is another pain killer, anticoagulant shots, antacids for my stomach, suppository Dulcolax for my bowels, and TED stockings to prevent blood clots since I was not ambulating. They also used a specialmattress called ripple mattress to prevent me from getting bed sores.

Once the flu like symptoms started to improve, I was able to begin my road to recovery. I would say that it was many long days, tears and isolation. I remembered just staring at the clock, waiting for time to slowly crawl by.
However, with that being said, I just want everybody to know that my parents and nurses who cared for me were the angels here on earth. The doctors were great , but the people who help you bathe when you can't
bathe yourself, feed you, help you believe you WILL walk again provide you with what you need to go that extra step literally. When they rub your legs, wiped your face and let you cry because of the pain you know THEY understand you.

Three weeks after being admitted to Hospital Putrajaya I was then transferred to Hospital Sultan Abdul Halim, Alor Star, Kedah where there is a rehabilitation unit. It was there that I relearnt how to do all the things I lost due to GBS. From sitting to eating, to talking and walking. Trying hard to close my eyes.

 I spent a total of 6 weeks at this hospital. I contracted hospital infections due to prolonged hospital stay therefore I was advised to go home. On 22nd of October 2018, I was finally discharged, still in a wheelchair and my journey of recovery continued.

I was so determined to be able to get up and walk for my brother’s wedding in December 2018 so with the support of my family, I trained hard to focus on gaining back my strength, coordination and balance. I went to
physiotherapy, occupational therapy and speech therapy 3-4 times a week, pushing myself each day, taking each day as it comes and setting myself personal goals. And luckily enough, with God’s will, I did manage to walk with the help of my quad cane on my brother’s wedding.

Between then till now, I’m still fighting my battles, improving day by day. I can now walk without support but still having balance problems. My speech still needs work. I’m having chronic fatigue and also numbness and tingling, twitching and spasm here and there from time to time. I continued to have facial pain whenever I was hugged, or there was pressure put on my face. I constantly hear a thudding sound, and everything is louder in
the previously deaf ear. My smile is not the same anymore. But overall, despite fighting such a long and difficult battle, I feel that I’m winning, slowly but surely. I’m now determined to strive to continue where I left off with my studies and pursue my dream to become a doctor. Im going to try my hardest to complete my degree starting this August 2018.
This journey has taught me so so much about so many things.

I am also tremendously grateful for the people I have in my life, especially my family and friends. To my family, thank you for the unconditional love, the never ending support, the limitless patience, sacrifice and energy, also the countless money and time spent on me. I will never ever be able to get through this without you guys. To my friends, thank you for the prayers and support, the effort to do a fundraising for me and to hold solat hajat for my recovery, for the visits, the calls,
and the words of encouragement. Thank you for the people who smiled at me when I couldn’t smile back, for feeding me when I can’t feed my self, for wiping my face when I couldn’t lift my hands, for squeezing my hands when I couldn’t squeeze back, for making jokes and trying to cheer me up although I couldn’t laugh to them, for just being there with me throughout the journey,
THANK YOU.

The Faces of Guillain Barré & CIDP Summer Edition- Elizabeth #100

Hey, my name is Elizabeth Landrum I was diagnosed with CIDP in August of 2016. I'm from New Orleans, LA.

I was a healthy 35 year old when my symptoms started, beginning my training to become a yoga instructor. I woke up one morning in late June having numbness in my hands and feet, and noticed that I was a little clumsy, nothing too alarming yet. It started to spread, but I think I was in denial that something was seriously wrong until I tried to run and it was spastic and difficult. I made an appointment with a PCP who then me an appointment with a neurologist. I was diagnosed pretty quickly with an EMG, but needed to admit myself to the ER for a spinal tap and a loading dose of IVIG.

My first treatment was horrible, I was sick with flu like symptoms for a week. My first treatment was in August and I didn't have another one until October. I was still declining, and unable to see one neurologist regularly that was familiar with my case. I stopped working right around Halloween, my balance was really bad and I started using a walker and wheelchair. Eventually I pulled some strings to rectify this situation, but it's sad I had to. My neurologist confirmed that I was getting worse and apologized and gave me his phone number if I ever needed him for questions. He thought IVIG wasn't working on me so we started once a week IV steroids. This only gave me temporary relief, so I then started daily Prednisone. The oral steroids were beginning to work, but my family wanted to get a second opinion. So we went to
UT in Texas a center of excellence for CIDP, and they agreed with my diagnoses, but wanted me to start IVIG every week and remain on 60mg of Prednisone.

Ever since then I have been improving very slowly. I don't know what triggered this disease, but it's crazy how fast it disabled me and long it is taking for my body to heal itself. But I will beat it!!!

I'm still on a walker and wheelchair for long distances, but I see improvement every time I go to physical therapy. We've spread out my treatments from weekly to every four weeks and 60 mg of Prednisone to 7 mg. I loathe this disease and I can't believe it's been almost two years of me dealing with it, it had been really hard. I luckily have a great family and boyfriend who stuck with me through this.

I have CIDP it doesn't have me! I will win!! Never give up!

Drew Brees and I January 2017, I wasn't doing well at all here. But my friends came to get me so I could meet him.

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