My Journey with GBS

Hard to believe today is the last day of 2018, and it’s almost 2.5 years since being diagnosed with Guillian Barre Syndrome (GBS). I saw another survivor of GBS give the abbreviation another statement - G et B etter S lowy. That is one way to describe my journey - Slowly. Never in my imagination that it has taken this long in recovery with what seems small progress. I am learning I will not find quick signs of progress, but I need to look at where I am today (in this moment) and where I was before. This where I will see my progress to give me that hope to carry on forward as things ARE improving in my recovery. So let’s look back: Christmas 2016 - in Peter Lougheed Hospital ICU connected via a tracheotomy my ventilator machine along with a PICC line for fluids and medications. I had a feeding tube (gastronomy) to receiving nutrition. My neck was gaining movement as well as some movement in my shoulders to allow for shrugging of my arms. Due to the tracheostomy I had no voice to speak...

On my journey living with GBS, you realize the things one would take for granted you would always can do. Things such as scratching that itch on your nose or scalp; pressing the remote control to channel for the tv; picking up the phone to answer the call; and having a shower.  I remember having a shower the morning of September 9th but then by the next day I was in ICU and intubated. Then I spent 6 weeks going in and out of consciousness and being critical acute, but when I finally came through I was paralyzed from the neck down so we could only do bed baths and washing my hair was with a facecloth as I had minimal neck movement to lift my head. When I left the ICU in September 2017, I still had not had a shower as there was no commode I could use and be safe for all of us. Off to Foothills I went for rehabilitation and getting more comfortable with sitting in a wheelchair but the bed baths would continue as there wasn’t a commode we could use to ensure the safety of patient an...

In my massage therapy session today, Jenny had asked me to be in my wheelchair for our session. We did hydrotherapy along with massaging with coconut oil. In the past we had used ice packs and hot stones while in bed to do the hydrotherapy technique. This time she used a foot soaker wth Epstom salts, along with ice packs for the upper thighs and arms. Instead of hot stones we used a large heating pad. To allow my feet/calf to soak Jenny moved my foot pedals to the side with my feet dangling. With my feet dangling after the soaker was removed, I felt that I was able to kick my legs. When I asked Jenny if it was my imagination, she said no - I was kicking. As I couldn’t see, Jenny videotaped a few seconds to show me, I am indeed kicking my legs. How exciting!! Finally process in my recovery. Below are videos of each leg.

In November I saw that The Tenors were coming to Calgary at the Jubilee Auditorium on December 8. Knowing I would need an attendee as I have a manual wheelchair, I asked friends Marilyn and Karen if they would like to go with me. Marilyn has known me since I was like 3-4 years old and Karen has become a fast friend and both are like my second moms. It was wonderful that I was able to treat them to see The Tenors. I left Skypointe feeling nervous/excited as I was happy to see the performance but nervous as I had never been to the Jubilee Auditorium before so was hoping to fit through the doors etc. Everything worked well - it had good wheelchair accessibility access and I had perfect view of the whole stage. I didn’t have to miss a thing being in the last row of main floor orchestra level. Excited for my March entertainment - taking my mom to see Il Divo  - a popular opera singing group from Europe. Then taking my mom along with Karen and her husband Ross to see the Canadian play,...

It’s been almost 4 months since arriving to Skypointe and working with Nina (my occupational therapist) with my range of motion exercises two days a week. In combination with my massage therapy, I have been feeling stronger and feel we are making progress in my recovery too. As my mom returned to Thunder Bay, Nina and I thought it would be nice to send a small video of how I am doing with my arm range of motion exercises for her. Below is the video.

At 48 years old, you don’t picture yourself to be living in a nursing home. The obvious difference is the generation gap between me and the rest of the clients in the facility. Majority of clients are 15+ years older than me and at a ladies meeting I met someone who was 103 years old (that’s over 50 years older than me!!). I remember my first night at Skypointe I met a lady who commented after I mentioned trying to go back to work, “Oh I am here until I die”. Our end goals are different; so this leads to mental challenges for me. My time on unit 54 at PLC (transition unit) has helped me prepare what I was going to face at Skypointe. I not could become anti-social, which means having meals in the dining room for my wing plus take part in the activities for the facility. Went to the September birthday celebrations, ladies group and an afternoon social with a guy entertaining us with 50/60 music. All were delightful,  but feel I couldn’t connect to be comfortable in honesty. Thankfu...

After a year in ICU and with little in the way of movement coming back, could not be in denial anymore - life as I knew it was gone. What was taken from me was my sense of independence. I am now in a situation in which everything I do I am “dependent” on someone else. Relying on someone to take care of my basic needs to doing simple tasks like scratching my nose. No wonder I experienced periods of low moods while in ICU - not something you want to hear at a young age. It took some time doing that “yo-yo” of acknowledging that loss then burying it so I could focus “in the now” and then repeating it again. Being stuck in a room, gives you plenty of time to think of things you have lost; so you can see that yo-yo experience happened a few times during my Hospital stay. To appreciate my feeling of loss, have to go back to the summer of 2004. Still living at home at 33 years old, began feeling I was ready to venture on my own again. The sudden loss of my sister in 1994 took a long time fo...

I received an email from my coworker Natasha who had helped organize the Walk & Roll for GBS in May 2018. It was an email from Kim Lange, Alberta director from the GBS/CIDP foundation inviting me to a GBS afternoon education session on the topic of GBS/CIDP and IVIG Treatments. As my recovery has been slow (2 years+ now), was interesting to hear more about IVIG treatments and how it connects with my recovery. My attendee for this event was a close family friend Marilyn Shoults (one of my second moms and one of the best cheerleader to have in one’s corner. We arrived at Mount Royal University for the event and faced our first obstacle - the doors were not wide enough for my wheelchair to fit through. As I remained on the bus while Marilyn confirmed the door size, my Access Calgary driver kindly went to the next drop off area where we found success! Then it was the elevator - no problem on the width but was the depth of the elevator that was an issue. Marilyn did some manoeuvring b...