Day 2- The Faces of Guillain Barré- Alison Story

My name is Alison Behan, I am 17 years old and I'm from Ireland. I got GBS in 2014 when I was just 15. It came upon me so quickly, one day being so able and the next to be completely bed bound. 

Before GBS

None of the doctors had ever really treated a patient with GBS before. I went through 2 round of immunoglobulin and was transferred into the intensive care unit. They were very close to ventilating me but I fought hard and thankfully didn't have to to be ventilated. I spent 7 weeks in hospital fighting hard against such a debilitating illness just like you and all the other GBS survivors had to do.

I had days where I wanted to give up so much but my family really encouraged me to fight and that's what I did. I made a huge recovery going from the wheelchair to a walker to crutches in about 5 weeks after being left out of the hospital. I am everyday thankful for my recovery and look back on that time with a bitter sweet outlook, even though it was so hard it has made me grow as a person.  

After GBS

Thank you for listening to my story!

Alison lives in Ireland. If you would like to contact her email me- Justine at justinesgbsjourney@gmail.com

Day 1- The Faces of Guillain Barre: Justine's Story

Decembers of 2014- the beginning of the longest year in our life's... Hell it was the start of the longest days, hours, minutes and seconds. The start of more fear, confusion and stress than we have ever felt.

But it was also when my faith in humanity was restored. I have never felt more love in my life. The generosity of so many... It's just overwhelming. I'm forever grateful to my family, friends, community and so many more... The donations, food, prayers. The constant company and holding my hand meant more than you could ever know.

In early December I came down with my first ever sinus infection... It was horrible and also a ear infection. I went to an imeadate care who prescribed me a z-pack of antibiotics. By day four I was feeling great. The next day, day five. I felt terrible. I had no energy and mixed with a cough that was making me vomit- I felt like I was dying. The next morning- December 11th 2014 I woke up with my left eyelid droopy. Later in the day my hand, feet and mouth all went numb and tingly... Including my teeth. I was talking funny and when I tried walking, it was more like a dance.

Waiting at Imeadate Care

Of course there was a huge storm in our area and everything was flooding. I felt guilty but had my husband, Bryan take me back to the imeadate care. I have never felt like a bigger hyprocondract than that day. The Doctor said that I was probably having an allergic reaction to the privious antibiotic I was taking. To just sleep it off and it was nothing.

The next evening I was admitted into the ER. At that point both of my eyelids were droopy, it was hard to understand what I was saying and I had to have assistance to walk and when I took a drink of something it would go back up my nose. We didn't know then, but my trachea was already paralyzed.

The ER doctor mentioned Guillain Barré Syndrome but that it was rare. They started running what seemed like every test known to man. The next morning the Neurologist came to see me and he was confident that I had Guillain Barré Syndrome but was waiting to confirm it with the results of my spinal tap.

I was coughing so hard and producing a crazy amount of spit. I was terrified to have the spinal tap done because I had to stay completely still. That's when I was introduced to the suction wand. They gave it help with the coughing and mass amount of drool. The spinal tap came back negative for elevated proteins which are needed to diagnose Guillain Barré Syndrome. My neurologist was stumped.

That night my aunt and husband stayed with me. I woke up to use the bathroom and realized that I couldn't feel my face or move the right side of my body. I started yelling that I needed a basin to puke in because I was so terrified to learn that nobody could understand what I was saying. I stood up to walk to the bathroom and fell on the floor. From there the hospital staff was in a frenzy yelling all kinds of scary things including that I couldn't protect my airway and that then needed to take me to the ICU and have me intubated.

My husband and best friend, Whitney later yelled at me for taking this selfie my self and sending it to a few people. Lol- the nurses said I was the first patient that they ever had that was intubated in the ICU and texting.

By 72 hours after my first GBS symptom I was connected to a ventilator and nearly all the way paralyzed. I was started on IVIG. By that time I finally tested positive for GBS. I continued to get worse and worse in the following days. I had to have a tracheotomy and have a G Tube inserted for my feedings. At my worse I was completely paralyzed- my eyes and all. I was unable to open my eyes for 4 weeks and it took a few more weeks for them to focus so I could see clearly.

I was at our locally hospital, Enloe for 2 1/2 weeks. They did a nerve conduction test and decided I had the AMSAN variant of Guillain Barré- Acute Motor-Sensory Axonal Neuropathy. With is the most severe variant of GBS. I was transferred to UCSF where they did all of the same tests that Enloe did. The sent me back to Enloe for a week. From there I was sent 2 hours away to a long term care facility called Vibra on January 8th. 

While I was at Vibra I started getting some return. My eyes opened... But wouldn't shut completely for months. I finally weened of the ventilator after relying on it for nearly 2 months. I got to the point where I could move everything from my waist up.

A month into GBS. I had no idea that I changed so much. My face was still paralyzed.

On February 22nd I was admitted to Sutter- Roseville Rehab Facility. I was there for 2 months and learned to be more independent. Before I was discharged to go home I was able to use a slide board with help to transfer to different surfaces- both room, bed, couch, wheelchair ect.

 I could twitch my legs and was able to take a few steps while I was in a sling.

My first week at the rehab. I was so happy to be visiting with my grandma, Aunt Leann and Cousin Kasie but I was unable to smile.

My last day at the rehab! Dad and I were so excited to go home. I do have to mention how amazing my dad was. 

I was discharged to finally go home after 131 days in hospital care and my dad was with my for 127 of those days and most of the hospitals I was at were 2 or more hours away from home. He is amazing and I'm so blessed to have him.

After being home and having Physical therapy 2-3 times a week I finally graduated from PT in February 2016- 14 months post GBS. I'm now able to walk short distances with a walker and walk unassisted for a few steps around the house. 

It's been a long hard ride but I'm so grateful for the people who have been by my side. I couldn't of asked for a better husband, dad, family, friends and community that never skipped a beat. They always did their best to make me feel safe, loved and taken care of.

I'm forever grateful for all of the wonderful people I have met because of Guillain Barre. Including all of my fantastic therapists; speech, occupational, physical,recreational and respitory and the amazing nurses, doctors and CNA's. 

September 2015

September 2015

February 2016

So many of these people worked hard for me to make the best of my situation, be comfortable as possible in an impossible situation. They were my sounding board. They let me cry when I needed to and never stopped pushing me. My journey would have been a lot different without Allison, Tracy, Alyssa, Julie, Tossin, Erik, Gabe and so many more. You will never know how much I appreciate you all.

Life isn't always fair... But I'm alive and thats beautiful.

I'm Justine, the owner of this blog. Thank you so much for tuning in for- "The Faces of Guillain Barre" I would love for you to follow along and like me on social media and share all of the amazing stories to come! I'm located in Northern California. If any of you would like to contact me about sending in your stories or any questions, feel Free to email me at justinesgbsjourney@gmail.com

What is Guillain Barre Syndrome

I'm excited to be kicking off "The Faces of Guillain Barre" tomorrow. I'll be featuring one story of a GBS fighter every day for the month of May. 

I'm still accepting stories so if you would like to share yours, feel free to send them to justinesgbsjourney@gmail.com

Below is an explanation for GBS (Link included) for those of you that are not familiar with it. Guillain Barré is so different in every case and has a handful of variants that are grouped under the Guillain Barré name. I have the AMSAN varrient which is the painful one and the most severe. But I'm so very thankful to be recovering. Progress is progress.

I found this a few weeks ago while researching. Im glad I didnt see this a year ago... It just proves how diffrent ever Guillain Barre case is from the next.

 

There is so much I could post but I know most of who will read this will get bored after the first paragraph. I encourage all of you to research GBS and become more familiar with it.

From the GBS-CIDP Foundation

http://www.gbs-cidp.org/gbs/all-about-gbs/

Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.

It’s also called:

• Acute Inflammatory Demyelinating Polyneuropathy
• Landry’s Ascending Paralysis

GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso.GBS came to public attention briefly when it struck a number of people who received the 1976 swine flu vaccine.  Although not in the news as much today, it continues to claim thousands of new victims each year, striking any one at any age, regardless of gender or ethnic background.
The rapid onset of weakness, frequently accompanied by abnormal sensations (numbness, tingling) that affect both sides of the body similarly, is common. Loss of reflexes, such as the knee jerk, are usually found.

What causes GBS?

The cause is unknown. We do know that about 50% of cases occur shortly after a microbial infection (viral or bacterial), some as simple and common as the flu or food poisoning.  Some theories suggest an autoimmune trigger, in which the patient’s defense system of antibodies and white blood cells are called into action against the body, damaging myelin (nerve covering or insulation), leading to numbness and weakness.

How is GBS diagnosed?

To confirm a diagnosis, two tests may be performed:

• A lumbar puncture looking for elevated fluid protein
• Electrical test of nerve and muscle function

How is GBS treated?

GBS in its early stages is unpredictable, so except in very mild cases, most newly diagnosed patients are hospitalized. Usually, a new case of GBS is admitted to ICU (Intensive Care) to monitor breathing and other body functions until the disease is stabilized. Plasma exchange (a blood “cleansing” procedure) and high dose intravenous immune globulins are often helpful to shorten the course of GBS.The acute phase of GBS typically varies in length from a few days to months, with over 90% of patients moving into the rehabilitative phase within four weeks. Patient care involves the coordinated efforts of a team such as a neurologist, physiatrist (rehabilitation physician), internist, family physician, physical therapist, occupational therapist, social worker, nurse, and psychologist or psychiatrist. Some patients require speech therapy if speech muscles have been affected.

Variants

There are many variants of GBS, but they all share the characteristic of being ‘rapid onset’:

• Acute Inflammatory Demyelinating Polyneuropathy (AIDP) 75% – 80% of cases fall into this ‘classic’ category
• Acute Motor Axonal Neuropathy (AMAN) Similar to AIDP, but without sensory symptoms
• Acute Motor Sensory Axonal Neuropathy (AMSAN) Severe variant of GBS more prevalent in Asia, Central America, and South America
• Miller Fisher Syndrome Characterized by double vision, loss of balance, and deep tendon reflexes

Living with GBS

Recovery may occur over six months to two years or longer. A particularly frustrating consequence of GBS is long-term recurrences of fatigue and/or exhaustion as well as abnormal sensations including pain and muscle aches. These can be aggravated by ‘normal’ activity and can be alleviated by pacing activity and rest.

Progress

It's been awhile since I put an update on here.

When I got on Facebook this morning I couldn't help but smile. Facebook's "On this Day" was filled with so many exciting messages from my loved ones & some great memories. Today marks one year of being released from hospital care.

My dad and I waiting to be released. My story would have been a lot different without him. I was in hospital care for 131 days and he was with me for 127... And most of that time I was in a hospital 2hours or more away from home.

I have to believe that everything has happened for a reason. Since starting this journey I have met so many wonderful people and learned to appreciate the little things in life.

It's been a year of settling back into our old lives. Of learning to take life at a slower pace and eventually relearning everything I once knew. 

Sure I haven't regained everything as fast as I envisioned last year but going through this has made me realize there are worse things in life. I'm alive. I'm able to tell the people in my life how much I love them. I'm able to take care of myself. 

I have come to peace with the life I live... 

I love the life I live...

Picture by: Matt Sanchez

I'm able to spread awareness about the thing that shook myself and everyone I love to the core. There is a reason this happened to me and I think that's it.

My nieces and nephews and I. -Picture by Matt Sanchez

I'm 16 months out from being diagnosed with Guillain Barré Syndrome & a year out of being home from the hospital. Last year when I was released from Sutter Roseville Rehab I was able to move everything from my waist up. My hands were week and my face was still mostly paralyzed. My legs just twitched.

My hands are so much stronger. It can be hard at times to push the right keys on my phone and extremely difficult to type on a keyboard but it doesn't hold me up. I no longer have to try with all my might to hold a cup of water. I can easily dress myself and do basically everything when it comes to getting myself ready.

My worst enemy's are still ziplock bags, hair clips and anything small that requires dexterity.

My husband let me drive once. It was too amazing for words.

I graduated from physical therapy two months ago. I can walk around inside of a house unassisted if I can touch the walls if needed. 

I'm pretty good walking with a walker. I'm in Hawaii now, lucky me. The day before we left my walking sticks arrived. I'm so glad I brought them. They have given me even more freedom to walk around the house and to a vehicle. I was even able to walk with them in the sand.

There's worse things in life than being in a wheelchair. If I was in it forever I would be ok. But I am very grateful that with Guillain Barré, typically you get better.

As I've said many times- Guillain Barré has taken many things from me... But it has given me so much more.

National Sibling Day

I come from a mixed family and I'm so grateful for all of my siblings no matter how we came to be. 

Christmas 2004/2005 

Our wedding 10/20/12

Christmas 2015

And these three have truly been my unbiological sisters :) I couldn't ask for better best friends. Who truly went above and beyond when I was in the hospital. And throughout the years put me in my place when needed :)

Having siblings is a blessing. I'm so thankful they were all there for me when my life turned upside down.

An extra shoutout to Brandi for trying her best to keep me from looking homeless and doing my hair and nails :) 

If your from Tehama, Butte, Shasta or Glenn counties and are in the market for a new hairstylists, she is your girl! She also just started a mobile spray tanning business and will come to you. She won't turn you crazy dark or orange like an Ompa Lumpa. She has taken her time with me and given me a tan while standing with my walker. She is at Sassafras in Red Bluff! http://instagram.com/beautifybybrandi

So if your lucky enough to have a brother or sister, let them know how much you love them... Even if they drive you crazy 😘😘😘

But I Wipe My Own Ass

This is a more personal post- feel free to skip it! But I feel the need to write about it to help anyone else who is going through something similar. I was told that less than 3% of Guillain Barré patients loose control of their bowels... And you guessed it, I was among that lucky 3%.

I have read in the past few weeks that loosing control of your bowels is all part of the AMSAN Variant of GBS which I have. Severe pain is also part of AMSAN. I thought that every person with GBS had the same agonizing pain that I had. Where you skin feels on fire and you can't figure out where it's coming from.

AMSAN- Accute Motor Sencory Axonal Nuropathy is the most severe variant of GBS and not much is known about it.

When your 26 years old and you have never had health problems you think you invencable in some ways... I never thought that I would go from having a sinus and ear infection to not having any contol of my body within hours. I was mortified when they said they were putting in a cathater and to make the entire situation even better, Aunt Flow was visiting... So you can imagine my horror.

Oh the embarrassment kept on coming. It seemed like every. single. time. a nurse or CNA came in my room they would ask "have you (or has she) pooped today?" I so badly wanted to tell them to mind their own business... When I was finally able to talk after 2 months, my family quickly learned that that question was off limits to ask me.

I remember doing my sign for "sorry" every time I had to be changed. Most of the time whoever had that job would tell me not to worry about it and that was their  job... None the less, I was 26 years old and it's hard to except that someone has to change you or having to wear a diaper.

On the less than fun times I needed help going number two with an enema... I would save my Dilauded IV until right before... No fun at all...

When I finally got some return and was able to move some they finally removed my cathater... But then I had to retrain my bladder... Let me tell you, I have a whole new respect for kids who are being potty trained... It's not easy, even being an adult.

As of a year today, I have been able to wipe my own ass... And that's an amazing feeling lol! I'm so greatfull that all of that is behind me!

So if you have GBS and have problems with your bowels, you are not alone. I know how hard it is to accept help with personal care and things that were once so simple.

Happiest Girl in the World

It doesn't take a lot to make me happy. It may be food, music or a drive, I'm easy to please.

Driving has always been my happy place. A place I can clear my head and refuel my soul. Since getting sick with Guillain Barré Syndrome I haven't been aloud to drive. 

GBS has left me with Drop Foot- https://en.m.wikipedia.org/wiki/Foot_drop and poor reflexes. Im only on a few medications these days but they have messed with my memory. Naturally there has been some reservations about me driving... Apparently I wasn't the greatest driver before my medical problems... No clue where everyone got that idea. :)

For months I've been telling Bryan that as soon as I could get into our truck by myself that I'd be ready to drive... He wasn't buying it. So imagine my surprise and pure joy as he pulled over on a back road and asked if I was ready to drive... I probably squealed, if I'm being honest.

It was amazing to finally be in the drivers seat after nearly 16 months. I only drove 5 or so miles because it was getting dark and I'm basically blind... Thanks GBS for making by not so great vision even worse! But non the les, those few miles were magical. Windows down, music up and green fields as far as you can see.