GBS: Her first signs

Let me preface this by saying, my mother is a strong woman. She does not let a sickness get her down.  She powers through it.  Her motto:  "Get up and get moving or you are never going to get better."  So when she called me a few days before the initial start of the GBS and told me she had a stomach virus, I thought nothing of it.  That phone call was the beginning to the end of the life we had. Every day from that point forward was a new revelation.

Monday:  My mother calls me with news that she has a stomach virus.  I shouldn't worry because she went to the store and picked up some Imodium.

Wednesday: My mother drives to her primary care physician for her yearly well woman exam.  While there, they give her a prescription of Ciprofloxacin, an antibiotic used in treating bacterial infections.   

Thursday:  She still feels bad and stays in bed.

Friday:  She wakes up feeling like her old self and runs errands.  By this time, she believes she is better.

Saturday:    AM She wakes up and her leg feel "off".  She describes it as they are weak and wobbly.  Oddly enough, the term"wobbly" is used in several discriptions in other articles. She is able to get up wash her face, brush her teeth and change the kittly litter.  But lies back down.

Noon:   By mid afternoon, she notices that she can barely walk.  She is not in pain and has no other symptoms but she decides to call my brother to take her to urgent care center.  They determine that she needs to go to the hospital.

  Early evening:  Her arms start to feel weak and she can't stand up at all.  She calls me to tell me that nothing is wrong but they are keeping her over night.  She insists that she feels fine but just can't stand up.  

  Midnight:  My brother calls me and says I should go up to the hospital because mom seems to be getting weaker.  She can't move her legs at all and picking up her arms is getting difficult.  

Sunday 2 AM:  I show up at hospital and my mother is resting but has noticed less movement in her arms.

Sunday afternoon:  Doctor comes by and notes a decrease in mobility and her oxygen intake is diminishing.  He has tests ordered for Monday.  I stay with my mother and she begins to complain of being in pain. She doesn't know where the pain is but at this point she cannot change position on the bed without aide, so I am up every 3-5 minutes to move her from one side to another.  She is given morphine to help with pain but it does not provide relief.

Monday:  It has been a week since my mother has complained about stomach virus and now she can't lift any of her limbs.  The hospital is monitoring her pulse oxygen levels and limiting the amount of pain medications they give her.  You see pain meds can make you sleepy and your breathing slows when you get tired.  They do not want her breathing to slow anymore.  They put an oxygen line in her nose.  But if they can't keep her oxygen levels up, they will have to intubate her.

Monday noon: Test results come back negative for something in spine that helps determine if it is GBS.  But after another physical examination by doctor, he officially diagnosis her with Guillain Barre Syndrome.  He states that even if diagnostic test comes back negative, physical examination trumps diagnostic test and she has classic symptoms of GBS.  It typically starts with a decrease in movement in the lower limbs and then starts in the upper ones.  For some patients, it can become so severe that they have to put them on a breathing machine.  Thankfully, my mother was not one of them.

And so treatment begins:  IVIG.

Back in the land of the living

My blogging has been at a stand still.  On October 26th, my mother became ill and many lives were changed, including mine.  My mother was diagnosed, for lack of a better word, with Guillian Barre' Syndrome.  It is rare.  So rare that only 1 in 100,000 are diagnosed with it.  So what is it? It is basically an auto immune issue where your body starts to attack your nerves in your spinal cord.  My mother went from a healthy fairly active person to being paralyzed from the neck down...within 24 hours.  It's sudden onset catches any family off guard. I hope that my weekly post about how we deal which it, will help others. So one blog post a week will be about GBS. If you found this blog because you or your family member were diagnosed with it, know that you are not alone and that there is a light at the end of tunnel.

Chain reaction 

My mother is struck ill---->New living arrangements have to be found for her two siblings that she cared for  -----> Family begins to bicker about who needs to share in responsibility of my aunt and uncle ----> my brother and I are small business owners so when we don't work, we don't get paid----> budgets are created----> hobbies and vacations are put on hold-----> my brother and I become detectives and try to figure out my mom's finances> we learn her medical benefits----> forms are filled out so that we can talk to her credit card companies, bank, physicians----> our world evolves around caring for my mom and her home -----> and I have to drop training for marathon.

That is right.  I would not see the fruits of my labor.   My mother was in the hospital until mid January and my brother and I shared the duty of seeing her and helping her.  She had become quadriplegic and needed our help and support.  In mid January she moved in with me and I no longer had the freedom to go run when I wanted to run.  If I thought taking time out of my week to drive to see my mom for  a few hours was hard, I was wrong.  Trying to be her caretaker 24/7 was harder.  Don't try this at home.  I rarely slept or ate. Doing work was impossible and the idea of leaving the house, even for an hour, was something I could only dream about doing.

But I am back.  We have a caretaker that comes in a few hours a couple of days a week. This allows me time to work and start enjoying life again.  My first run was Monday and I loved it. So what if  my pace was not the same as it was before or that I felt really sore the next day.  What a great feeling that was...soreness. I missed it. I know it sounds crazy but I did.

So here is to my first run and my first attempt at a normal life again, to be among the living.  Over the next few weeks I'll share my experiences on running and the balancing act I must do in order to be a full time care take for my mother and a full time me.

Be ready because here I come.