The Faces of Guillain Barre 2017: Day 31- Julia

Wednesday, May 31, 2017 0 Comments

I already knew that I was pretty lucky to have my family and friends surrounding me. But after this experience I am even more aware of this.Everything started on my son's first day of school. This little 3 years old guy is so proud to be starting school. That morning, I woke-up with my feet and hands particularly cold, I take my shower and tell myself that I will warm-up.
Minutes go-on and I begin to feel tingling in my calves. In the afternoon, a violent pain begins on my head.

Before GBS

The next morning, I am supposed to bring my son to school and my 22 months old daughter at her nanny.
But it is impossible for me to stay up. I cannot fix my vision on anything and I feel extremely weak. My husband decides to take me to the doctor. Mine being in holidays, the other doctor of the village has no idea of I can have and send me perform a blood test.

The next morning, as I am opening my eyes, I see double. I have no more balance. My feet, hands and my intimate parts are like anesthetized.

We arrive at the hospital emergency, where I am directly taken care of.In the afternoon, after various tests, I am brought in neurology. The two neurologists that came to see me, made me do more tests and then informed me that I have all symptoms of Guillain Barre Syndrome and that they will perform a lumbar puncture in the morning of the next day to confirm. 

I did not understand what was going on, everything seemed to be going so fast. My husband didnt show me that he is worried.

Next day: lumbar puncture. During my breakfast, first wrong way… I have no more the authorization to drink or eat. First tegeline injection, I throw up many times. I begin to speak by the nose and my cough is uneffective.
In the afternoon, I am changed of service, welcome to reanimation!
The staff of this service is admirable, thanks to them (exception to… the little radiologist asshole who says to my nurse that I am not looking friendly… ???... when your face is paralyzed and that you are under artificial breathing, it is just a little bit complex!). 

Anyhow, not difficult to understand that all the connections are extremely painful, mostly when they are trying both wrists, then both thighs. Almost 3 hours of agony, but I am not complaining, I grit my teeth and think of my family.

Friday and Saturday pass and my case complicates even more. The decision is taken, they will put me in artificial coma. My husband is called, he arrives than 1h later I am taking care of. The pain is so intense, that I am seeing this as a relief. I am not thinking of after… For me I will just wake up and go back home.

I stay 10 days in the coma.During this period, I had hallucinations that seems real, even today 16 months later they still felt real (if I begin to tale those hallucinations, you will think I am crazy!).

Awakening was very difficult, my husband told me that they had to send me back to sleep once before performing a second attempt with pills. I was very jittery, they had to attach my wrists to the bed for 2 days. When I think about it, I am still having this powerlessness feeling. I fought as hard as I could, My wrists kept bruises for at least two weeks. My wrists are finally unattached, but with pills I am raving and still this impression that I will go right back home… I tore off my gastric tube and my urinary catheter 3 times. I am being attached once again.

During the night, I had a high fever, I remember the cold glove on my head.
In the morning, I am still convinced that my husband is coming to take me home. Then, I realize that I am connected to a machine, that I cannot talk due to the tracheotomy. They give me a board and a felt pen, I can finally communicate. I have an amazing physiotherapist at the hospital, he motivates me, makes me move my limbs, makes me perform physiotherapy breathing due to the pneumonia that I had during my intubation.

I am learning to breathe again without the machine in a few days. Then they unplugged me and I could finally talk. But I realize that my face is completely paralyzed.
My husband, this extraordinary man, comes every evenings during visit time. He talks to me while taking my hand, passing wipes on my face, massaging my shoulders, then goes back in his car an cry without anyone knowing.

After three weeks in reanimation, I spent a week in neurology. The first time I saw myself in a mirror, I was scared, and for a moment, I was telling myself “and if I stay like this, what am going to do ?”.
I have Miller Fisher syndrome, my face is paralyzed.
I decided to fight not to stay like this.
Neurology also means reunions with my little treasures. I missed them so much. They were my strength, during those long solitude moments. I can successfully stand up on my own, I can go to the bathroom and I can have a shower alone ! After a second tegeline treatment, I am authorized to go back home with physiotherapy 5 times a week and speech therapy 2 times a week.

My amazing colleagues allowed me to have 7 additional weeks at home after my recovery as they gave me there holidays. I went back to work in March 2016 in therapeutic part-time until August then I decided to change my work time to 20 hours a week to keep more time for my family.

I am still tired faster than before, my body has issue to handle a full day without a nap, I cannot feel part of my left forehead  and I have headaches almost every days. But otherwise, my recovery is complete. I will never be the same person from before this September the 3rd, but I am this person that knows that life can flip around in the blink of an eye. And I know that this experience has made me a better person.”

The Faces of Guillan Barre 2017: Day 30- Adrian

Tuesday, May 30, 2017 0 Comments

2013 will go down as a year of great sadness and great blessing. After a routine visit to the doctor in late January, a blood test indicated that my blood sugar level was very high and I also had high Cholesterol levels. Then followed eight weeks of a new diet regime during which I lost one and half stone.

Summer 2012 : April 2013 : March 2014

At the beginning of March I had a stomach upset which did not seem to clear – a stool sample returned that it was not a virus, but it continued. My Father died on Sunday 24th March – about the time I would have been going to Hong Kong for a friend’s wedding which I had previously cancelled! I never got to my father’s funeral.

That same day I had a strange tingling in my fingers and over the following days I gradually lost the use of my legs. I continued to go to work for a couple of days with increased difficulty.

On the Wednesday I visited Accident and Emergency in Salisbury – they did a few tests and then sent me home saying that if the symptoms persisted that I should contact my doctor.

During that night, my legs were very painful and by the next day my legs were useless and I could not get out of bed. The doctor visited me at home on Thursday 28th March, took one look and said that he thought that I had GuillainBarre Syndrome which is a rare disease of the auto-immune system.
He had only seen it once before in a patient.
I was taken to hospital by ambulance and tests proved his diagnosis. I was immediately given a course of IVIG. By Sunday 31st March I was taken to surgery because I needed ventilating and later that week a tracheotomy was performed because the condition had taken out my lungs. The condition was particularly aggressive and continued to my mouth and eyes – the doctors told my wife that they thought that I would never walk again. I don’t remember much after that – the IVIG did not work so I was given Plasma Exchange.

My first real recollection in Radnor Intensive Care Unit was that of the doctor telling me that my lungs were putting air into the ventilator. This was late April by then, and there is no denying that before that, I had been very ill. Communication was initially by winking an eye or shrugging a shoulder but later progressed to a chart with letters on it and I had to spell out the words indicating by whatever means each letter.

I did have many dreams when I was in my comatose state – I wrote them down as soon as I had use of my hands – but that is another story. I still get flashbacks now, all these years later.

But I was getting better. My lungs started working again and I was gradually weaned off the ventilator until there was no need for the tracheotomy – this was removed mid-May. Suddenly there were no tubes attached to me accept for the catheter, and I had my voice back!

I was no longer being fed through my nose but progressed to more solid food.

When I transferred to Winterslow Ward on 23rd May I could sit up and balance on the edge of the bed for a short while, I had limited use of my right (dominant) hand and I could digest normal food: I was incontinent and could not feed myself but I could just about reach the television touch screen!

Winterslow was a ward dedicated to the older patient and I was the youngest there – I was in a side room because I also had MRSA which could not be cleared by medication. I think that was the main reason why I was sent home as soon as possible.

Slowly through June and July, my body began to come back to life. My left hand followed my right hand and I could use my smartphone again and a computer keyboard! Then I could lift my left foot slightly off the ground. Soon there was no need for an overbed hoist for wheelchair transfers and a “Cricket” was used, and just as I was getting used to that, I was introduced to the Gutter Frame.
When I left hospital to return home on 30th July I had progressed from the parallel bars, could walk short distances with the support of the Gutter frame, my catheter was gone and I was continent.

Learning to write again

I weighed 10 stone and none of my clothes fitted me anymore! The first meal I had when I got home was Chicken Burger and chips from the local take-a-way!
The weather that summer was lovely – a friend made a ramp for the front door and I spent many days in my wheelchair on the patio.
The practice nurse visited not long after I got home and I was shucking peanuts on the patio table – “not much wrong with your dexterity” she said.
I had a hospital bed in the dining room and a rehab care package. Carers visited three times a day.

Eight weeks (24th September) after leaving hospital and nearly six months after the onset of my illness, my rehab care package successfully ended; I was walking with the aid of a Zimmer Frame, doing exercises that the Physio’s had set me, standing at the kitchen worktop and transferring easily to the downstairs WC (such luxury). I transferred from a wheelchair to a car for the first time on 26th August when we went to the Rustic Fayre at Verwood.

One of my achievements was when I stood up for the coffin of a dear friend at our chapel on 13th September – although the backs of my legs were supported by the wheelchair I was at least standing.

The Zimmer Frame was replaced with a Roma Rollator on 25th September.
I climbed the stairs on 1st October and started using Elbow Crutches on 28th October.
I walked into the Intensive Care Follow-Up Clinic on 8th November on Elbow Crutches.
I was already planning my return to work – maybe the end of October!
It did not happen – my doctor would not allow it!

The hospital bed was returned during November and I began sleeping upstairs again – in a newly decorated bedroom. We now had our dining room back again!
I was still having visits from the Physios, but this stopped at Christmas.
I returned to work as a QA Inspector on crutches in January 2014 – all I needed was eyes and hands and they worked fine! It was a phased return and I was fulltime again by April – the first anniversary of my illness. The company doctor visited to check on my working conditions.

Back at work

I have nothing but praise for my employer – my wife had received a letter at the beginning saying, “we are family and you will be supported as long as it takes for your recovery”

March 2015 in the New Forest

That was nearly four years ago – how am I now?
The illness has only left me with drop foot on my left foot which is corrected by an ankle support with a strap that attaches to my laces. My toes are permanently fuzzy.
I am not in pain and do not suffer from fatigue. I do not take any medication for my condition.

Initially for a year and a half I had to rely on friends to transport me around. I received my driving licence back in April 2015 and now drive an automatic.

It was a good feeling taking my wheelchair back in my car.

I progressed from crutches to one crutch, then a pair of walking sticks and then one stick. For a period, last year (2016), I did not use a stick at all, but after a couple of falls I take a stick with me just in case!

I remain reasonably active. I do not think that I will ever be able to walk like I used to. I walk on my own now because I can set my own pace. In 2016, I began to do longer walks – a five-mile walk over the Mendips and Trooping the Colour in London (which entailed a lot of walking).

I started flying again this year (2017) with a long trip to New Zealand. Having a stick was very useful when boarding the plane, but I did not ask for assistance in getting to the gates.
While in New Zealand I climbed a few “hills”.
Returning via Hong Kong I could spend time with the friends I should have been seeing in March 2013.

March 2017 on Mount Maunganui

I don’t think that I had specialist doctors or rehab but the care that I received was certainly professional – I have only seen my doctor once since 2013.

I am still unsure what triggered it – seems strange that it started the day my father died!

I put my recovery down to a gracious loving God – behind me I
have had a praying church and friends. I have had wonderful hospital care and prompt treatment that halted and reversed the paralysis. There have been concerned friends and work colleagues.
My wife calls me stubborn – I usually do it myself and will not ask for help! Some would say that I have a positive attitude.

I retire in June and would like to be able to help those who are suffering from this dreadful condition.

Adrian King
April 2017

The Faces of Guillain Barre 2017: Day 29- K.C.

Monday, May 29, 2017 0 Comments

I had a healthy baby girl at home in the end of September 2015. On November 4, 2015 I noticed I wasn't feeling right and went to urgent care because I couldn't stand up without feeling faint. I was sent home diagnosed with vertigo however it started to get worse and I began having tingling and numbness in my limbs. I went to the ER about 5 different times. I had numerous MRIs, CTs, and bloodwork and everything kept coming back normal. 

Most every doctor I saw said it was post partum related but I knew it was far from it. At my worst I could hardly eat and it was difficult to swallow. I almost wanted to give up finding an answer but a good friend drove me to a bigger and better hospital in the middle of the night where I was given a spinal tap and then later admitted. They suspected gbs due to my elevated spinal proteins and I was given IVIG. It took 2 weeks before I finally got any treatment. They said I had a mild/atypical case and I would be better in a few weeks. This has been far from the truth. I have struggled with waxing and waning symptoms for 7 months and while I am improving it is very slow and I still have days when symptoms come back. It was a difficult thing to experience because I got rejected by the medical community so many times before I was taken seriously. I was afraid to hold my daughter because my hands were very weak during this time yet somehow I was being told it was in my head. 

At my worst I had bladder dysfunction and irregular heartbeat and blood pressure. My blood pressure would sky rocket and one night my heart rate dropped into the low 30s. It was a traumatic thing to go through because I didn't get a whole lot of support and I was very scared and alone in the hospital. I am doing much better and able to do a lot of everyday activities but some days I have to take it easy and most nights my hands and feet will have varying degrees of numbness. 

The mental part of it all has been the most challenging. I've had to find strength I never knew I had and I've had to accept the unknown which is incredibly scary when it's your health at stake. I am much more understanding of people who fight invisible illness on a daily basis and only wish more doctors were more empathetic for their patients. I hope to use my new knowledge to help people one day but for now I am enjoying being a mom of two beautiful children. Every day is more precious than ever before and that is the hidden blessing that occurs when you face a serious health issue. To the world I look completely normal and even looked normal while sick since I was never paralyzed, yet internally I honestly think my body was fighting the hardest it's ever fought. I realize how often we take our bodies for granted and in a second it can all change. Ive always tried my best to be healthy; eat healthy, think good thoughts. But sometimes bad things happen and there is no explaining it. 

I am much more aware to how fragile life really is and as a result I am trying to live in the present more than the past or future. It's a good lesson to learn but almost always at a price. I am glad to be more in tune with my body and not feel guilty for taking days of rest. We should all be taking care of ourselves more and enjoying each day because anyone can be struck with illness at any time. I also think spinal taps should be routine in ERs when people present with neurological symptoms. It would have saved me 2 miserable weeks and might have resulted in better recovery. I've discovered that gbs is far from textbook. Why can't doctors be forced to read out stories?? Not only would they be learning to empathize with us but they would also be aware that there is variability in diseases and syndromes because everyone's body reacts differently. Hopefully some of you out there will find comfort in reading my story and if you are in the medial field I hope you learn a little about the importance of empathy. 

My strength and stamina are mostly 100% back most days. I only feel remnants of gbs when I overly exert myself whether it's physically of mentally. My last neurologist appointment he said I have autonomic neuropathy so I guess my case of gbs focused mostly on my autonomic nervous system. It's been a journey but I am thankful to be living life and living fully. It definitely changed my perspective on living each day to the fullest. 😊

 K.C. Sweet
Date of diagnosis: 11/16/15
Hospitalized dates: 11/16/15-11/26/15
State/country: Washington/United States

The Faces of Guillain Barre 2017: Day 28- Denise

Sunday, May 28, 2017 0 Comments

Little did I know that my life was going to change dramatically in the very near future.  It was a beautiful Friday (June 24th) and I was so excited as we were getting Ava (our 8 month old Grandaughter) at 10 am and were having her for the weekend while Jake and Erin went up north.  Beth (my youngest daughter) and I took her out for breakfast at the Lancer and then to Dunc’s (my husband) work and then to my work. Beth watched her while I drove my bus run in the afternoon and ended up watching her after supper also as I was not feeling very well and ended up going to bed.  Saturday was much of the same.  I was a bit dizzy and figured my vertigo was kicking in again.  Spent most of the day in my bedroom.  Sunday morning Beth had to go to work so Dunc stayed home from church to help me with Ava.  Jake (my son) and Erin (his wife) got here about 11:30 and after a short visit took Ava home.  I was glad as I went back to bed.
Monday morning I still didn’t feel well.  I took my sugar and it was 10.6 which was a lot higher than I like.  Angela (my friend) came to visit and I told her how I was feeling.  Dunc was out of town til Wednesday.  Tuesday morning I was feeling worse.  I took my sugar and it was 13.2!!  Okay time to go to the Dr.  We were suppose to leave on Thursday for Chicago.  I definitely had to feel better.  I had diarrhea and some vomiting so was thinking I had a flu and that was why my sugar was up.  Called Dr. Zuliani’s office but no chance of an appointment that day and they were closed on Wed.  Went to the Walk in clinic.  The Dr. There started me on Janumet right away and ordered a bunch of blood work for me.  I left there and had a nap.  That night was Kobe’s (my grandson) grad so Beth and I went to see it.  I felt rotten but I knew I had to go.

Wednesday morning I went for the blood work and then back home to take it easy.  I was not feeling any better and decided I couldn’t leave on Thursday to go to Chicago.  We went to Lindsay (Daughter and her husband) and Brian’s for Kobe’s grad dinner at night and I didn’t eat much.  Thursday and Friday I spent most of the time in bed.  I had a fever,  still vomiting and diarrhea.  By Saturday morning I got Duncan to take me back to the walk in.  They had my blood test results back and sent me to the emergency to have some special test done.  After 8 hours and a few tests I was diagnosed with a UTI.  The Dr. put me on a strong antibiotic for 10 days and sent me home.  By Sunday I still  felt so sick that we decided instead of going to Chicago, I needed to stay home and get better.
Dunc was home to take care of me but the antibiotic made me sicker.  I didn’t feel good at all.  That whole week was spent mostly in bed.  By the following Monday Dunc left for New Mexico and I still had 3 days left of the antibiotic.  By the Tuesday I couldn’t even swallow the pill with out gagging. I quit taking it.  Wednesday I started to feel a bit better.  Lindsay asked me if I wanted to go and get my nails done with her on Thursday and I jumped at the chance.  We got our nails done and went to wendys for lunch where I got a baked potato and a small frosty.  Then we went shopping at Giant Tiger.  By then I was pooped out and needed to rest.  The next day we were leaving for our family reunion at Martins (my brother) and I was so excited because all my kids were coming and that was a first.

Thursday evening I went to bed really early because I wanted to get lots of rest.  Dunc had packed the car before he left and the kids were taking care of the food.  So I didn’t have to worry about to much.  I woke up lots that night.  I was sick and still had diarrhea and then my bum was numb.  Next time my right hand was all tingly with pins and needles and it wouldn’t go away.  When I woke up next time my left hand pinky and ring finger were the same way.  When I woke up just before 6am I felt a dull ache between my shoulder blades.  I felt absolutely horrible. I was alone and didn’t know what to do.  I text Duncan at 6 am and asked him if he was awake and surprisingly he said “yes”. (I didn’t know it was 4 am in New Mexico and the reason he was awake was he had to catch the 4:30 shuttle to the airport)  I told him what was going on with my body and how I felt and he didn’t answer me right away. I just laid in bed waiting.  Then he phoned me and told me that Bethany was on her way to get me to take me to the hospital.  He had called her while I was waiting.  So I just laid there till she got home and she helped me put a sun dress on and helped me get to the car.  I felt weak and so out of it.  Once at the hospital I told them my symptoms and they took me in right away and did an EKG. Then put me in a room and so started all the tests. I had a chest x-ray, a cat scan, a few more EKG’s and lots of blood work.  I don’t remember much of what happened that day as I was in and out of sleep.  When I had to go to the washroom Beth had to help me as I was very shaking and unstable on my feet.  My poor Duncan as he was traveling home and so unsure of what was going on with me.  He couldn’t wait to get home.  His plane landed around 3 in the afternoon but the traffic coming in from Toronto was terrible.  It took him till after 6 pm to get home.  Just before he got home I text him to tell him that the Dr. Had come to see me and that they thought I had “had a minor heart attack or that I was going to have one!”  Wow, that was scary!!  By this time my kids were all wondering what to do.  Lindsay and Bethany didn’t want to leave and go to Beeton because they wanted to stay with me, and Amber (daughter and her husband) and Jason didn’t know whether to skip Beeton and just come to the Hospital and Jake and Erin were about 15 minutes away from Martins when Duncan called them all and told them to come to the hospital.  At one point I woke up and looked and all my kids were standing in a half circle around me.  At that point I thought “Oh boy, I must be really sick!”  I felt like I was burning up inside.  I was so hot!

I guess later that night they moved me to the cardiac floor in the hospital and they still weren’t convinced it was a heart attack.  Dunc never left my side that night.  In the morning I barely remember but Amber and Lindsay came to visit and each brought me flowers.  That is all I remember.  Duncan explained much later to me (a week and a bit later) that later that day between 3pm and 6pm I was really struggling to breathe.  He said it was like watching me drown and there wasn’t anything he could do to help me. He said I looked at him and said “Your scarred” so I must have seen in on his face. There were 3 cardiologists that didn’t know what was wrong with me.  They said it wasn’t my heart but said they must be missing something.  Duncan called all the kids back and Martin (his brother) and his Mom.  He feared I was dying and he wanted everyone there.  His mom chose not to come back but to stay home and pray.  She prayed that someone would be able to figure out what was wrong with me and that they would help me.  Martin was talking to the one cardiologist that he knows and he said he was going to get a colleague from ICU to come and see me.  Her name was Dr. Zhang.  She came in and did a few little tests and with in 10 minutes said I am not a neurologist but I believe she has Guillain Barre Syndrome.

She took me to the ICU and intubated me.  I was totally unaware of anything.  Thank Goodness!!  But God was there and he was taking care of me!  Dr. Zhang got me stabilized for the night and in the morning Dr. Chang another ICU Dr. had called Hamilton General Hospital and spoke to a Neurologist there and he said he would take me on.  So I was sent by ambulance up to Hamilton.

So began my 8 days in Hamilton General.  I can only write what I have learned from my family about this as they kept me heavily sedated the whole time.  “Snowed“ as they called it.  I had the life support tube in my throat, a pic line in my neck and a feeding tube. They ran many tests on me I heard.  I had an hour and a half MRI on my brain and spine (which I am really grateful I have no memory of as I am sure I would have panicked for that), an echo-cardiogram, an abdominal ultrasound, a lumbar puncture which confirmed I had GBS, more x-rays, and lots of blood work!! I had all my family spending time with me. In pictures I cant believe it was even me.  I was up there for Duncan s birthday on July 23rd and he told me I gave him the best birthday present.  I asked “How?” as I don’t remember anything and he said I opened up my left eye half way and that was so exciting for him.  Brian brought him  and Martin up a cupcake to celebrate.
I was moved back to St. Catharines on July 25th.  I was put in room 4 of the ICU.

When I woke up there all I could do was blink my eyes.  Nothing else on me would move.  The nurses told me to blink once for yes and twice for no when they would ask me a question.  I can remember thinking I had no way to know if I needed anything as I couldn’t feel anything.  My medications were reduced so I was awake allot.  Duncan said that it had to be the best day ever since I got sick since I was awake so much.  One thing that scared him was the alarms that would go off.  My bloop pressure one was the worse. It went over 280!! They didn’t know if it was because I was in pain or because of anxiety.  My pulse would also send the alarms off.

Unfortunately when I looked at anything I saw everything double.  I couldn’t laugh but I wanted to.  People who came in with glasses were the funniest because I would wonder why they were wearing two pairs at the same time.  Duncan asked me if I saw double and I looked at him and saw 4 eyes, 2 noses and 2 mouths.  Very strange.  This lasted a good couple of weeks.

I got known as the Ice Princess!  I had the temperature turned down in my room as cold as it would go.  Duncan went out and bought me a fan for my room and I had it blowing on me all the time.  I also had to have a cold cloth on my head all the time.  And no covers at all!! Just my hospital gown.
On Friday July 29th they lifted me with their mechanical lift and put me into a wheelchair to see how I could do in it.  It was so uncomfortable!  I couldn’t hold my head up so it was bouncing around like a bobble head.  Duncan held it up for me for a bit and then they put a neck pillow around my neck backwards and that really helped.  My shoulder was in so much pain I couldn’t stay sitting in the chair.

On Sunday July 31st they reduced the amount of oxygen coming through the Trachea and I had to do some breathing on my own.  I was off for about 20 minutes.  That was really scary!  On Tuesday Aug 2nd I was able to sit in the chair for 1.25 hours which was amazing!  I was also able to go longer with little assistance from the ventilator.  I actually went 2.5 hours which they thought was amazing!
On Aug. 4th I was able to go 11 hours on assisted breathing!  By the time they switched me back to the ventilator I was exhausted. I found this extremely hard to do.  I felt I couldn’t catch my breath near the end.  It literally felt as some one was pulling really tight on an imaginary corset and I couldn’t take a deep breath.  I couldn’t talk to tell them how I feel so all they look at is my numbers.  Which include oxygen levels and pulse rate and blood pressure.  As this went on everyday they would stretch the length of time longer and longer.  I would look at Duncan, Bethany or Lindsay whoever was there at the time and I first look at them, then the ventilator and then to the nurse trying to tell them that I wanted to be put on the ventilator and they would all tell me the same thing that your numbers are great.  Your doing great they would say!!  I just wanted to tell them, “I don’t feel great and I want to breathe!!!!” but I couldn’t talk.

Friday Aug. 5th was a day I wont forget.  The neurologist sat at the chair at the end of my bed and told my family that I was chronic and I would be months (a year at least) in the hospital. I had no reflexes no movement and basically no hope from how he sounded.  Well, he just didn’t know who he was talking about!!!  My family had a meeting with the Dr.’s and the nurses and were told what they can help with when it comes to my care and what they can’t do.  They were told it was going to be a long recovery time and not to expect anything quick.

Aug.  9th I had a spa day.  Bethany and Lindsay (my two daughters) came and gave me a really nice sponge bath and washed my hair.  Wow!  It sure felt good.  Its nice having a PSW and a Nurse for daughters.  I went almost 16 hours on assisted breathing.  I felt like they were pushing me so hard.  I don’t like this at all.  I am able to wiggle my fingers a bit.  That’s pretty exciting!

August 14th – today was exciting!  I actually raised my arm a bit off the pillow!!  Funny thing is I just wanted to show off that I could raise my arm and when I went to show Lindsay and Brian, it went up and then flopped over on my stomach.  It scarred me as I didn’t expect that.  Lindsay laughed as she knew from my reaction I didn’t know that was going to happen.

Aug. 15th – Big day today!  I was breathing completely on my own for 30 minutes.  That is huge!!! Today was the first day I didn’t have any alarms go off for blood pressure and no panic in my breathing.
August 17th, today I was able to do two one hour sessions and 1.25 session off the ventilator.

Aug. 24th – I am getting so much more movement. I can touch my nose without smacking my self in the face, and wiggle my toes, and starting to be able to move the trunk of my body!  They tried sitting me up on the side of the bed.  Well that was pretty interesting.  I felt like a newborn baby with no control of my trunk muscles at all.  It was all them holding me up.  In my mind I thought that it would be easy.  Not so when your paralyzed.  The ENT Dr. Came in to see me and told me he was going to change my trachea from a size 8 to a size 6.  I was pretty nervous.  Well he tried but my trachea wouldn’t budge.  He said it must have some swelling around it and ordered some anti-inflammatory medicine and said he would be back the next day!  I was so scarred I made sure Duncan would be there the next day with me so he promised he would take the day off.

Aug. 25th – What a day!  I waited all day it seemed like for the Dr. To come back.  Finally at 4 pm he came in with another Dr.  He said if he couldn’t get it out then the Dr. That was with him would put me to sleep and he would take it out that way.  Well, he didn’t have to pull to hard and out it came. I thought that was bad but nothing could prepare me for him putting the smaller one in.  Duncan and Bethany were there watching and wow, I choked and gagged as he put it in.  I did not like that one bit!  Once it was in he told me that I would be able to talk but I needed to learn how.  I had to take a deep breath and then try to say 1,2,3 when he told me.  So he told me to take a big breath and he plugged the hole in my trachea and I said 1.2.3 in the smallest voice.  It was so cool.  I was going to get to talk!! After he left the Respiratory therapist got it all secured and put what they call a “cork” on it and then I could talk.  I was so excited that I didn’t know what to say!  I had waited so long to talk.  We face timed all the kids and my friend Pat (who also had GBS 10 years ago) so I could talk to her.  I talked for about 2 hours straight and then I was tuckered right out.  They uncorked me and put me on the Trachea mask.

August 27th – I asked the Dr. When I could have some ice chips.  My mouth wanted to have something wet and cold.  He said I could have them now!  I was so excited.  6 weeks since I had been able to put anything in my mouth besides when they brushed my teeth.  That first ice chip tasted like a big steak dinner!!  It was so good.  Then the nurse said I could try water and if I could drink that they could give me a diet ginger ale.  I said bring in the water.  That was pretty easy going down so next came the ginger ale.  It was like I was at a party!

Aug 29th – today I had a swallow test to see if I could swallow okay.  I passed no problem so they told me I could have pureed food.  I wasn’t sure how that would be but it was roast beef, mashed potatoes and veggies.  It was amazing!!!!  I couldn’t eat a whole lot but it was really really good.  I think I ate all the meat and a bit of potatoes.  YUM!!!

On Sept 1st I was moved out of the ICU.  I was moved into the PCU!
Sept 6th the best day ever and scariest, I got my trachea removed completely!!!  I was able to breathe all on my own.  They don’t stitch it they just cleaned it up and put gauze over it and a big band-aid. It looks like a bullet hole. lol At first I tried to talk and the hole would blow air out of it and it felt like the band-aid would blow right off.  Funniest feeling ever.  But that only lasted about 45 minutes and then it was fine!  They switched me to minced food today!!!

Sept 7th I was moved to a regular medical floor.  Physio came and got me to sit up on the side of the bed and this time I could actually sit.  I sat unassisted briefly.
Sept 8th – I was able to sit unassisted for 10 minutes and move my legs and arms without loosing my balance.  They decided to get me to try and stand but the pins and needles in my feet felt like daggers and I couldn’t do it.

Sept 9th – was able to sit for 15 minutes on the side of the bed.  Feeling so much stronger. Was taken to Niagara Falls General Hospital to start my rehab program.  This was the first time that I wasn’t in a private room.  I had a room mate! A 100 year old! She was pretty much deaf and blind so not much talking took place between us.

Sept. 13th – Physio came and took me to the physio room.  I was shocked when she told me they were going to try and stand me up. They pushed my wheelchair in between the parallel bars.  I had 3 physio helping.  One on either side and one on a stool in front of me.  She put a sheet around my lower back and held on to it.  They told me on the count of 3 she would pull the sheet and they would help me up to stand.  I DID!!!!  I couldn’t believe I could stand and that it didn’t hurt my feet.  I couldn’t wait to get back to my room to call Duncan and tell him!!  They did this 2 more times and the one with the sheet didn’t pull and told me I did most of it myself!

Sept 14th – This was a big big day for me!  When I got to physio I thought they were just going to get me to stand again but they wanted to see if I could walk.  I was really nervous and thought no way!  But once I was standing in the parallel bars she told me to move my right foot first and to slowly try to walk!  I walked 15 feet of the parallel bars!  She let me rest and then brought over a walker and had me walk another 20 feet with the walker.  I was Ecstatic!!!!!!

Sept 15th – Today was the first day since I got sick I was allowed to have an actual shower.  The PSW wheeled me down and helped with allot of it.  I washed my hair and was able to wash my upper body which was so great!  Unfortunately that tired me right out and when I went to physio I was unable to even stand up let alone walk.  I was really disappointed.

Sept. 19th Duncan took the day off to come and see my do my physio and occupational therapy.  He was amazed at what I could do.  He even treated me to Swiss Chalet for lunch!!

Sept 20th – I finally got my feeding tube out.  I couldn’t believe they literally just pull it out.  Again no stitches just gauze and a big band-aid.  Yay I am free of all foreign objects in my body!

Sept 28th – I was able to walk up and down 4 stairs!  This is exciting as I have to be able to climb 5 in my house to get to my main level.
Sept 29th – I got moved to Hotel Dieu Shaver rehab center.  This is my last stop before I  finally get to go home.

Sept. 30th – Well today didn’t start out the best.  I was in the washroom and somehow I ended up on the floor.  I went down in slow motion. My sore knee just buckled.  I had to ring for the nurse to come and help me off the floor.  Talk about feeling stupid!

Oct. 2th –  I am sure if someone was in the room with a video camera we could have won for funniest home video’s.  I wheeled out of the bathroom with me sitting on my walker and Dunc asked me if I wanted to sit in the chair instead of my wheelchair and I said “Sure”.  But when I tried to stand up I wasn’t strong enough to be able to do that in the walker as the seat was pretty low on it.  So Dunc said he would help.  He thought he could lift me by grabbing me at my elbows.  He bent over to do that and when I stand I come up at an angle.  I bounced the top of my head off his chest and down I went on the floor.  If it didn’t hurt so much I would have laughed but it hurt.  My sore knee went under me and stretched it beyond anything I had been able to do with it.  Had to get the nurse in again  (Same nurse as Friday) helped get me into bed.  I took some tylenol for the pain and put ice on it.  Wont try that again!

Oct. 7th – Today I get to go home for the thanksgiving weekend.  3 days at home.  I am so excited as all my family will be there to see me.  I took home a walker and a wheelchair and a raised toilet seat.  I got home just after 5 pm and by 7:30pm everyone left and I went to bed.  My first night at home I didn’t sleep to well at all.  Saturday was a good day.  Got to visit with the kids a bit and then had a nap.  Everyone came back for dinner which was really good.  Was in bed early again.  Amazing how tired I get.  Slept much better Saturday night.  Sunday was thanksgiving and we have so much to be thankful for.  The turkey dinner was delicious!! Monday was a quiet day.  I did not want to go back to the hospital.  But I knew it wouldn’t be for long.  Went back at 7pm.  I have a lot of nausea and not sure why.  Seem to get sick to my stomach atleast once a day for the past month or so.

Oct. 13th – Yeah!  I get to go home for good today!!!  I know I still have a long road of recovery ahead of me but I can do it from home and that I am looking forward to!!!

The Faces of Guillain Barre 2017: Day 27- Tiesha

Saturday, May 27, 2017 0 Comments

My name is Tiesha Scipio. I'm from Manhattan, KS. I'm now 25yrs old and currently 3years without GBS. Right out of highschool I went to college for swimming, but due to injuries and other series of events I left that school and actually pursued track at Fort Hays State University in 2013. Training started right in September, and everything was going great besides shin splints. The end of October/ beginning of November I noticed my feet were kind of tingley or somewhat "asleep" as we tend to call it. I always thought it was just that my body wasn't used to me running again so it was just dealing with that rather than swimming. Nothing ever hurt so I completely ignored it all. By Thanksgiving my feet and hands were just always cold and tingely but again nothing hurt and it wasn't that everything was numb , it was something I set aside and ignored since it didn't actually bother me. 

Our first indoor track meet was roughly Dec13/14 of 2013. I was beyond excited but because of how bad my shin splints were, we were actually trying to figure out if I could compete that weekend. On Tuesday Dec 10, 2013, I woke up feeling fine (again nothing hurt). I got ready for class and walking out to my car I noticed I was alittle off. It seemed like I was walking weird. At this point I had also occasionally been sleeping infront of a heater (not safe!) to try to keep my feet warm because they started to bother me but it never hurt. But my first class was on a third floor of a building, going up the stairs I noticed I was actually having to use the rail almost to pull myself up way more than usual. After class when nobody was around me I thought "ok something is was off, I feel like I can't run" so I actually tried to run, and I almost fell flat on my face. Like my balance had disappeared or something. I decided to go tell my coach that I don't think I'll be able to compete that coming weekend because something was off. As soon as I walked in my coach was watching me and he asked why I was limping.. I told him "I honestly don't know, nothing hurts at all but it's like I can't walk normal". He sent me to the athletic trainers at our school who bounced around the thoughts of pinched nerve, slipped disk (I had just pulled a muscle lifting), but then our head trainer actually said "What was that French word we just learned about?" He went to his computer and was looking something's up. 

About 15min later he came back out with a note and asked if I was sure I could drive, I told him yes and he told me I should go ahead and go to the ER. He gave me a note saying "Possible symptoms of Guillain-Barre Syndrome". So as I'm driving to the hospital, I'm on the phone with my parents letting them know everything going on (they live in Manhatten), and we're all basically looking up what the heck GBS is. The first thing the nurse at the ER does of course is ask if I've had the flu shot... which I didn't because I stopped getting them after highschool (2010) so they gave me the flu shot. I truly believe something sped up the deterioration of the sheath & learning everything doctors think it was the flu shot because of how slow it was first moving to everything that changed after.

After being admitted, it then took 3 days for me to not be able to walk or move my arms at all. I stayed at Hays Med from the 10th-12th. From which they only let me leave with my mom because I already had a dr appt at home for my shin splints; now it would just be for something else. That day we realized how bad it was from my mom trying to help me walk, and us both falling when I tried to step up onto a curb, to my dad having to carry me from the car into the house to the couch. December, 13th I think went to Irwin Army Hospital for my dr appt, but things had already showed getting much worse and I honestly don't remember much of that day. I know I started at Fort Riley, but took an ambulance to Stormont Vail Hospital in Topeka straight to the ICU. 

I ended up only being in the ICU for a week but it was definitely the worst part. I developed Bells-Palsey right away affecting half of my face and my speech. I cried when they put the feeding tube in. I learned I can absolutely NOT pee in a bed pan haha the nurse agreed to help me get on the camode & the moment I did I could pee haha. I also scared my bestfriend and her mom the day they came to visit me because we didn't realize I had started aspirating with water so I was choking but wasn't strong enough to cough to clear it. My little brother wouldn't speak to me because then he'd have to acknowledge it's real. My little sister wouldn't leave my side but shut down socially and in school. I had horrible hypersensitivity but being an athlete literally all my life my muscles started cramping so bad, my parents spent the nights rubbing out my legs lower back just so I could attempt to sleep some. I ended up being paralyzed and somewhat unresponsive for two days except for my lungs. My back had just really started becoming numb so they were pretty sure lungs were next. My first treatment was the plasmapharesis for the few days, which ended up halting the progression enough I could leave ICU and go to the acute section of the hospital under close watch.  
My family decorated my room for Christmas (they took an extra IV pole from the hallway and put ornaments on it lol). Two of my bestfriends visited me on Christmas Day even which thankfully was a "good day". The 27th was the day we learned that my stomach or bowels or something wasn't cooperating with the food from the feeding tube. I actually ended up throwing all of it back up (it truly tastes horrible!!) and they had to take out my feeding tube (the nose one) on the 28th. I then had to decide if I was going to the one through my nose again or if I wanted the G tube (stomach one). After discussing everything with my parents I decided on the G tube. I ended up using it ONE DAY.... and then I passed my swallow test and could eat food 🙄🙄 . But of course you have to leave it in for 6weeks to heal now so I was stuck with it , not even needing it. We celebrated New Years watching the ball drop and decorating my room with glow sticks lol. Jan3rd 2014 , I was released from Stormont Vail and could either have my dad drive me or take an ambulance to Nebraska for rehab. I chose my dad right away... anything to be out of the hospital scene for a bit. 

This shower my progress: Sept'13 during track, Apr'14 the day I got out, Feb'15, and Feb'17.

Madonna Rehabilitation Hospital in Lincoln, NE then became my home for the next 3months. I had already started light physical therapy back at Stormont and showed some progress so I was anxious to get started. My first day there I actually took 3 steps with help and a walker but that was 3 steps I hadn't taken in so long. I pushed myself so hard for 3 or 4 days, inside and outside physical and occupational therapy. Within a week I was noticing weakness in places I was originally starting to make progress.. not long after that I was taken back to a hospital in Lincoln because I was starting to relapse. I had pushed myself way too hard and my body wasn't ready for that yet. I had another series of plasmapharesis and they kept working with me some for PT and OT. My mom took my outside a lot because it helped my mindset and I just love being outdoors. After about a week I was able to go back to Madonna to start again. This time we made sure to take our time. There were 4 other men at Madonna that also had GBS, much older than me. Me and the youngest guy of them all were the only ones that were able to be in wheelchairs compared to the motorized ones. 
While I clicked with all the men with GBS on the level of understanding I was still much younger than them all ( I was 21, they were my dad and grandpas age). There were two other patients at Madonna who were too old for pediatrics but the younger of the halls; us three soon became inseparable (as much as we could be). Without Tabitha and David, I most likely would've stayed a lot quieter in my room a lot. There was also another patient I met, a father of three gorgeous little girls I got to meet, who became such an impact on pushing me. Being an athlete, somewhat "competing" makes me push myself. Alex and I always somehow made jokes about our situations. He was also able to use his arms while I struggled but I was progressing with my legs quicker sobwe kept pushing eachother through it all. Those three patients are a huge reason Madonna didn't seem so "bad" to me. 

I'm pretty sure I annoyed the heck out of my PT Matt though, he had to deal with every attitude I had whether it was good or bad each day. I was making pretty good progress, but one of my favorite days was when I got to the G tube out. I still to this day do not know what it looked like but I was on FaceTime with two friends; they watched the nurse pull it out and about threw up lol. Taking out the G tube meant I could finally start aquatic therapy, which being a swimmer I was beyond excited for. Water therapy I think is one of the things that truly helped me the most personally physically mentally and emotionally. Being able to stand and walk, and I loved the water personally all helped so much. At some point I hit kind of a plateau so I went ahead and had a few treatments of IVIG, and from then on everything seemed to keep moving well. I started practicing a walking with my braces and a cane. PT and OT got alittle more intense and I was able to push myself more. I even talked my AT into letting me try to swim freestyle which I did with no hesitation like nothing was ever wrong. (I was able to swim 100% again before I could walk.. I'm a fish). 

By my birthday (March 27th) I was doing most of my PT with a cane wth braces and sometimes working on walking without braces. My goal was originally be out by my bday, but when that didn't happen I think it was my PT who told me about a 5k hosted in Lincoln every year called RunningDownGBS. The money raised went to a patient with GBS to help with medical bills. That was my new goal. 

 Progress picture of my birthdays.. my 22nd spent in Madonna & my 25th bday from this year.

April 5,2014 was one of the happiest days of my life and my family's too. Not only did I walk out of Madonna only with my braces, but my family took me straight to the 5k where we met up with the rest of my family. Being the athlete I am and being able to push myself alittle harder , I was determined to finish the 5k. No I was not able to run at all that year obviously but I did not use the wheelchair once during the race. I walked with my little brother, who at one point gave me a piggyback ride for alittle because I did not have much endurance & my little sister who pushed the wheelchair just incase. Finishing the 5k that day made me more determined that I could get back to things I loved and get my life back.

right after we all completed the 5K the day I was released from Madonna.

After living at home for a few months, I was determined to move back to Hays. I moved back in July and tried to put my life back together. I started learning more what I could and couldn't quite do yet. And fell in love with working out all over again. I had intended to pushing for track but soon that became something I didn't want to do. Now.. on May 13th I'll finally be graduating for FHSU with my first bachelors & will be walking across the stage with no hesitation or problem. I do still have some nerve damage in my feet but at this point I'm so used to it it's never bothered me much. It's all been a long time coming but I'm thankful and blessed that I'm at this point.

This is one of my favorite since I'm finally wearing the exact leggings I wore during GBS... Feb'14 to Apr'17

The Faces of Guillain Barre 2017: Day 26- Becki

Friday, May 26, 2017 0 Comments

I am nearly 7 yrs post GBS. I was Misdiagnosed twice before a doctor took me seriously and I was finally admitted to A&E. I was admitted straight into critical care as my breathing and speech were starting to go...just 2 days later i was on a ventilator via a tracheostomy ...this is where i stayed for 4 months. My lung collasped twice, had pneumonia 6 times and a blood clot. I was on the strongest pain medication including ketamine. I missed Christmas and new year. 

I dont remember alot just small snippets. After 4 months I left the safety on GCC and embarked on my rehab. I really did go from strength to strength, I had servere drop foot which I had botox for. After 3 months i discharged myself whilst on a walking frame and wheelchair. I continued my journey at home and after a year returned to work on a 6 month phase return. I went on to return as a full time enployee. I got married in August 2013 and my daughter followed in November 2014. Pregnancy was a scary prospect for me even though it was tonsillitis that triggered my GBS.