My Journey with GBS

“ Are you in pain? ” Or “ How would you rate your pain?” Or “Are you still in pain? ” Or “ Laura, I hardly touched you, you can’t be in that much pain? ” Hearing those questions repeatedly, especially in the hospital when they ask these questions at the beginning of each shift, I can feel exasperating at times. I am sure those people suffering with a chronic illness or chronic pain finds themselves in similar situations when asked about their pain. Also our tolerance of how much pain we can endure before reaching for pain medications like Tylenol can be different too. GBS and being in daily pain goes hand-in-hand with other. Again, comparing the pain felt in two GBS survivors with the same variant (AMSAN for me) can also vary depending on your severity of your case.  To answer your question, “ Are you in pain? ” Yes I am. I am in pain 24/7 primarily in my lower arms and lower legs. The numbness, tingling and the feeling of pins/needles is constant. If I do even the slightest e...

Starting since I was 16 years of age, my family had to face 2 cases of cancer in one year. My mom was Stage 3 breast cancer (ductal and lobular - the latter is the more aggressive form of estrogen dependent carcinoma) October 1986 and then my sister Kathryn with osteogenic sarcoma in her left humerus (same type of cancer Canadian hero Terry Fox had in his leg) just 9 months later - July 1, 1987. Though they saved her arm, the cancer back about 1.5 years later; this time not only was in found within a hematoma in her left arm but there were “hot spots” of cancer found at her T9 of her spine. She was the 5th person in Canada to have part of her vertebrae removed (bottom of T8, all of T9 and top of T10 and reconstructed with floating ribs, bone grafts from her hip and rods and screws to keep everything in place). Then in 1994, my family’s life changed forever with the sudden death by her own hands. We don’t know really why and could only make assumptions of what could have lead to her ...

The one of the things that is taken from you when you are a quadriplegic, the ability to scratch an itch. It drives me crazy not being able to scratch my nose and head especially when it becomes itchy. For my nose, I wiggle it or make faces try to relieve it. If I don’t have success, I eventually have to call my HCAs to use Kleenex to scratch the sides of my nose. Such relief when they do.  Now when my head itches, I hold off and hope the itchy feeling goes away. If it doesn’t, like the nose I have to call the HCAs for assistance to scratch my scalp. I must say I am lucky I have some talented HCAs - magic fingers who give great head massages. And this is when I feel like a cat. When you are petting or massaging your cat, they move into your hand and they start purring. Similar to me, either with their hands or with my wire device, when they start scratching, I move my head around to my relieve my itch. A big sigh of relief - it’s a little piece of heaven for me. 

The first half of 2020 has been unbelievable. Something I have not seen or lived through in my lifetime (almost 50 years). I have lived through the SARS (severe acute respiratory syndrome) in early 2000s when I lived in Thunder Bay, Ontario. The Toronto area was hit the hardest during this epidemic, but working as an employee of a hospital, we had to do the daily screenings to ensure we weren’t bringing in infections. I didn’t have to wear a mask and full PPE protocols as I was not front line interacting with the public, but mom did who worked as a RN ER nurse had to wear the full PPE outfit (face shield, gown, gloves and mask). It was an uneasy feeling going through that then, it’s way worst feeling now knowing how highly contagious this Covid-19 virus is compared to the SARS/MERS epidemics.  Now some 20 years later, our world, our global landscape will be changed forever with the spreading of the Coronavirus 19. It’s in the same family as the SARS/MERS (Mediterranean East Re...

‘I am done!” “I am so over this!” “I do not feel strong” “Why God are you doing this? What am I to learn from this?” “Why can’t I catch a break?” These are my feelings I have when I am having one of my rough days and feeling overwhelmed with thoughts and feelings. Feelings of frustration of my situation; helplessness as I have no control as I am a quadriplegic; exhaustion as I think I can’t do this for another 15-20 years; and acceptance of “this is what your life is now”. That last one - acceptance is one of the hardest ones to work through. I didn’t do something stupid to cause me to become a quadriplegic - I ate undercooked chicken! You read about other GBS survivors who was also paralyzed from head to toe, but within a year or two, they have recovered to the point they only need assistance to walk. So why at 3.5 years, am I a quadriplegic from the shoulders down? How is this fair? So I guess the other feeling I have is anger.  During counselling, 10 years ago, we worke...

Written May 20 (Facebook post) Aside from my independence, GBS took away my 30-year career in the Health Information Management fields. It was a career I enjoyed first a coding specialist in data collection in hospitals’ health records department and then as a coding coordinator here in Calgary. I had wonderful experiences in my field like travelling across twice reabstracting and recoding charts to ensure accuracy and the following of our national standards, as well as being an Alberta representative working on our national standards. In Calgary I took advantage of opportunities to spread my wings/comfort zone by becoming a trainer for new staff and doing something I never I do which was being a part of a management team. Have learned so much and made wonderful fellow colleagues too. Understandably, you could appreciate the devastation of not returning to my job.  With the direction of our global technology, some of our first glimpses during this Covid-19 pandemic, where ...

April 12, 2020 - Facebook post In the news, in Canada and other countries around the world, we read the impact that Covid-19 is having in our Long Term Care (LTC) facilities and how quickly this virus is spreading to both residents and staff workers. It became really “real” for me what I could be facing after what in the LTC facility in Washington state and in Vancouver. Won’t lie - it does increase one’s anxiety and it’s scary how fast the death could come to these vulnerable people, now my new family. I have been been at AgeCare-Skypointe for 1.5 years and in the past 6 months, some of the residents who were with me from the opening 6West have passed away. I basically have done dining with the other residents, so was surprised how some of their deaths hit me harder than others. I couldn’t imagine what it must feel being a resident in a home/facility where you lose 4 in a day or a dozen in a week. How do you comprehend that?  This week, our facility had to face Covid...

Written on April 2: WOW ticket to recognize our frontline workers. Letter sent to AgeCare- Skypointe leadership as I cannot clap or write out a WOW ticket showing my appreciation to leadership and all staff members of the facility of the care received during the Covid-19 pandemic. Unfortunately, our facility was impacted by Covid-19, we had 4 staff members who tested positive but happy to report no residents contracted the virus. The staff members have fully recovered and passed the protocols set by the Public Health Officer. So many lessons learned during our lockdown as well as seeing what protocols already in place for outbreak occurrences.  Hello Patricia and Alina.  I hope this message finds you well and healthy too.  This is difficult and stressful times we are facing today, especially for those who care for our vulnerable residents in community care facilities across Calgary as well as Canada. Seeing what AgeCare-Skypointe has been doing for their ...

Hello everyone. Yes, I am still here. These 7-8 months have simply been a roller coaster ride dealing with different aspects of my health. There is my obvious physical health but then the ripple effect begins. This leads into the emotional health which changes into your mental health. By then, your positivity, your happiness falls into negativity, lack of motivation and into your inner self. In blogging, I questioned how much to share, how personal should I go? The reality of it, blogging is not private, it is on the internet all to see if should find it. My friend Sara reminded me - you are not only blogging, I am sharing my experience and that help and/or inspire someone else facing a similar challenge.  Another obvious answer I guess - as I cannot use my hands to write in a journal, this blog should be seen as my journal typing with my mouth stick. Not that these excuses for being away form blogging but the reality of living with an autoimmune disease that has impacted many of ...

Today (September 10) marks 3 years since my life undeniably changed forever. This day I was in ICU on life support fighting to stay alive. Not knowing they journey I would have to face if I survived. Fortunate or not, the next 6 weeks I do not remember the battles I had to face - having a cardiac arrest because of severe bradycardia (slow heart rate), pneumonia, blood clots and of course paralysis from head to toe. It is through sharing with my mom and friends who were there filling me in what all occurred. Heart goes out to my mom who had bear witness to all of it but grateful for my friends who were there for me and supported my mom too. A moment in time, that Friday night after a long day in the office, I went out to buy my supper at Extreme Pita for a chicken bacon ranch pita. Who knew undercooked chicken would be the catalyst, giving me food poisoning and the stomach flu; then numbness and inability to walk a week later. How does that happen so fast? It took me a few week...

On August 5, 2019 marked my one year anniversary of arriving to AgeCare-Skypointe continuing care facility. Here there is all levels of care which falls under the umbrella of continuing care (assisted living, supportive living, long term care with mental health issues and long term care). I am on the top floor, which I kiddingly say “I’m on the penthouse floor.” So many feelings that first day, finally being discharged after 700 days in the hospital with a warm goodbye from coworkers then welcomed to my new home by my mom, Sara and her children - Casendra, William and Elysia. The Paterson family unpacked my belongings while my mom and I did the paperwork. Sharing smiles at my first meal as Elysia tried to feed me fries. It is cute to watch.  All my medical staff have been wonderful and have made me quickly feel a part of a family. Sharing stories and plenty of laughs too. The bantering back and forth makes it feel like a normal life. I can’t say enough good things about my...

Reality sucks! It really does. It’s like having cold water splashed on you when you weren’t expecting it. Well, for me it was one of those days where you just want to yell for everyone to hear, “Reality sucks!” Today (July 31, 2019) was a big day - I was going to have my nerve conduction test to see if there has been regeneration of my peripheral nerves. My last nerve conduction test was November 5, 2016 and that point I was only able to move the upper parts of my shoulders and could move my head slightly side to side. Seeing some improvements since starting physiotherapy in March 2019, I called my neuromuscular physician Dr White if he could re-do my nerve conduction test to see what improvements have occurred to my nerves. The day has come - feeling anxious and nervous as I didn’t know what the outcome would be. I started the morning typing a summary of the 3 previous nerve conduction tests from 2016. I must admit - how sobering reading how I was communicating and the severe dam...

It will be 3 years this September that I was dx with GBS. Has it been that long? Learning how to use a mouth stick during the winter of 2018 with my iPad Pro, took some time as my neck was not the strong then. To keep me entertained in the evenings in the hospital, I said I was doing my neck exercises as my bought me the biggest iPad Pro - 12.9”, so you had to move your head side to side. Must tell you that it was awesome to be able to reconnect with family and friends on my own (email/Facebook) after not being able to for the first year and a half I the hospital. You read it on the internet and hearing from your doctors, the nerves’ myelin sheath regenerates 1mm per day. So figuring being a “worst case”, it will probably take more time than the average GBS survivor to recover (6 months-3 years). Therefore my new friend is Patience, it is just going take time for recovery. And yes recovery has been extremely slow and it can get quite frustrating waiting for something to move again...

When I was given the diagnosis of Guillian Barre Syndrome (GBS), no one really knew what the disease. We were told it is considered a rare disorder affecting 1-2 per 100,000 people. With being so critical ill in the weeks following my admission, my mom and friends/coworkers were overwhelmed by the situation. My dear friend Sara is a great researcher, if she doesn’t know something she investigates to find more information to help better a situation. She did this for all of us. In her research she found there was a GBS Support meeting happening in Calgary (2017). My mom, Sara and her sister Amy attended the meeting on my behalf. My mom came back with pamphlets of information explaining more about this disease.    They met survivors, Dean Lower and Kim Lange, both had GBS to begin with but has transitioned to CIDP (Chronic Inflammatory Demyelinating Neuropathy). I met Dean and Kim at the first annual GBS/CIDP Walk and Roll fundraiser in 2018. It was so wonderful to see our survi...

Throughout my journey with GBS, people have said “You have been so brave”, “You have been so strong”, “I don’t know how you do it Laura, staying positive”. Guess what - neither do I at times. I don’t know how to answer them - shrug my shoulders and give a smile and a thank you. GBS is testing me on my physical health (paralysis) but it tests your mental/emotional health too. Testing me not to fall into the negativity or dwelling on scenarios of unknown futures or dwelling on things that are out of my control. All can lead to bouts of depression and feeling to give up/stop trying because what is the point. Saw this poem about “The Mountain” - it showed me you might want that “big step” but be satisfied you are stilling moving forward with your baby steps or even those mini-baby steps. It might not feel you are going to get to the top of the mountain but looking back, you realize the distance you have gone. Sometimes it is good to look back so you can see the improvements you have actu...