My Journey with GBS

Learning from waiting over 12 weeks to find out I had an appointment to see neuromuscular physician, Dr. Chris White, I wasn’t going to wait that long to see how long I would have to wait and see Dr. Stephanie Plamandon, the Rehabilitation physician. So in early March I confirmed they received my referral from Dr White’s office but couldn’t tell me how long the wait time would be. I waited a couple of weeks later to find out there is a 6 month wait list!. Well there was no way I was going to wait for another 6 months without physiotherapy. With the help of my friend Karen, we found a mobile physiotherapist who could come to start doing some physio while waiting for my rehab physician appointment. I met with Kashish Goel and he has been coming to my nursing home 3 days a week to do physiotherapy exercises. It is amazing how far I have come in a short period since starting weekly physio sessions, an hour in length. The biggest change I can see is with my leg mobility. I was able to ...

When you face a challenge or you find yourself at a crossroad, after making the decision you see the outcome; and then you play the “ What if...” game with yourself. I know I played this game when my sister Kathryn died. “ Was I a good sister? ” Or “ What if I did this? ” Or “ What if I did that? ” would Kathryn still be here. No surprise, I found myself lately play the “ What if... ” game with my GBS recovery. Understanding in my past dealing with bullying, I kept my feelings inside. I then do something silly, like stub my toe, and I would explode crying over something that occurred months earlier. Through my counselling (2009-2011/12), I learned it was important to acknowledge the feelings not to hide them away, the lesson is not to dwell on those feelings. I acknowledge my “ What if... ” statements but tell myself that I can’t them but I can learn from them moving forward (living in the present and looking forward to the future. “What if I didn’t go to Extreme Pita on Sept 2 f...

Name your journey in one word - Go! Wow, isn’t that a question. There are so many words one could use to describe my journey with Guillian Barre Syndrome (GBS) - some are negatives that I feel on my tough days and then positives on my good days. I think it is important to acknowledge both feelings. So when I try to choose my word, I need to look “Big Picture” as I look at the past 2.5 years and what I have experienced. When I had this discussion with my mom - first word that came to me BLESSINGS. Caught me by surprise, but thought about it again; yup that’s the word. How can getting a devastating disease be a blessing? Yes, being diagnosed with Guillian Barre Syndrome has changed my life forever, giving me plenty of challenges to constantly to overcome but still when I get down to it, I am blessed.  When I first woke up 6 weeks later one of the first things you see is the window sills filled with Get Well cards. I felt the love of family, friends and coworkers, it actually ...

Where does the time go? The days seem to blur together. Thankful for a calendar to help me know the day. Hard to believe it’s been 9 months since arriving to my new home, AgeCare - Skypointe. Trying to accept this is my home until my body recovers from it paralysis. Admittedly has been difficult connecting here as majority of the time, I am 15 to 20 years + younger than the residents on my wing. For meals, I am with 3 other ladies and we try to share some laughs. They are 83, 81 and 67 with me being 48. Where we sit in the dining area, we have a good view of everyone. You can see the routines of the others; which table they sit at or what refreshments they like with their meals. It has come in handy knowing this when you have nursing staff working unfamiliar with our floor. I have tried a few group activities, but felt outside my comfort as some activities are focused on the majority of residents which are senior citizens. So I mainly keep to my room and join others at meals time. Of...

On Sunday February 10, 2019 I had a wonderful evening of sharing, laughs and fellowship with friends. Schedules did allow for a Christmas gathering and then was put on precautions due to my laryngitis; so it was exciting getting together for Valentine’s Day. My two “second moms”  Karen Humby and Marilyn Shoults help organize the event - we ordered Chinese food from Ginger Beef and had carrot cake from Cheesecake Cafe (yum!). My friends/colleagues Bev (her husband Danny) and Chris were able to come. They have been my rock for me when I was bullied at work and they have been by my side from day 1 of my GBS diagnosis. Karen, her husband Ross and their daughter Elizabeth came to enjoy good and fellowship. The remaining friends who came from the Shoults’ clan many of them who have known me 25+ years - Marilyn and Wally, their son Chris, their son Tim and wife Maureen, their daughter Amanda and boyfriend Eric, From Wally’s family - brother Gary and wife Lynne (a great support to my mom...

For those who knew me when I was in my schooling, you probably met a different Laura compared to the one now. If I told you I see myself as an introvert, would you believe it? Many people who know me now have a hard time believing I was; but it is true.  Growing up - I was a typical loner. Quiet and shy for one. Add to having difficulty at times with pronunciation of words and being a “big girl”, I was a target for bullying right from kindergarten to adulthood, which I kept hidden inside. There would times where I would do the silliest thing, like stub my toe and I would babble to my mom about bullying that happened 6 months prior. I found I was content doing solo activities - reading books, playing cards, and playing with my dolls or barbies. High school years you would find me sitting in front of locker or in the library doing schoolwork. I developed a wall, figuratively as well as literally (staying overweight), which helped me protect myself from hurt. Didn’t always work t...

Have you ever asked yourself, “ God why are you doing this to me? What did I do to deserve this? ” I sure have especially in the beginning of this journey of GBS, why does my family have to go through yet another trauma, don’t see the purpose. My family has to face cancer (4 times with mom and sister!), death, and divorce. Just in 2016 alone - mom faced and beat her bone metastatic cancer, my brother Bruce severely injuring his foot and me being diagnosed with Guillian Barre Syndrome. Enough is enough I think.  Each of these “ traumas ” I have had experience, my faith was tested. Can I rely on something that is not tangible - can not see it or grab onto it physically? In short, the answer is Yes. Being in a room for hours on end or the quietness of night as you prepare to sleep - you have time contemplate things, replaying memories and thinking of the past and present and what future holds now.  I remember a verse that helped when I had to face my future without Kathr...

On September 22, 2018, my friend Marilyn and I had the opportunity of attending an education session at Mount Royal University hosted by the GBS/CIDP Organization. The topic was GBS and IVIG treatment (intravenous immunoglobulin). The last speaker was Dr. Chris White, a neuromuscular physician from Calgary’s South Health Campus Hospital. In his presentation he described how IVIG treatment works depending on the type of GBS variant you have. In the presentations earlier left me a bit disheartening as I keep hearing people’s questions asking, “ I have been taking IVIG treatments for the past 2 years.. ”. I thinking, “ Are you kidding me? I only got in the beginning, September 2016 and now it’s 2 years later. Has my recovery been slow because I haven’t received additional IVIG treatments while in hospital?” But Dr. Chris White’s presentation helped me turn my feelings around. There are various variants of GBS and how you use IVIG treatments depends on your variant. Okay, feeling better...

25 years ago - on February 3, 1994, my life changed forever. A piece of me was taken from me. My sister Kathryn at 21 years old passed away suddenly. Her death, as expected, was devastating for my family and all those who loved her too. We were sisters, but best friends too. She missed by many. Going through my own health crisis, recovering from Guillian Barre Syndrome (GBS), I think of Kathryn often and think of what encouragement she would say to me. When she was 14 she was diagnosed with Osteogenic Sarcoma of the humerus bone (same cancer of Canada’s hero - Terry Fox). They were able to save her left arm the first time but when she relapsed about 1.5 years later, they couldn’t save her arm this time plus microscopic hot spots were found in her thoracic spine. She had to face 2 major surgeries within a month - one was the total amputation of her left arm (including the shoulder joint) and the second surgery was the removal of her T9 vertebrae, with the bottom of T8 and the top of ...

There is a quote: “ We have 3 types of friends in life. Friends for a reason; Friends for a season and Friends for a lifetime. ”  That saying is quite true for. I have had to live through a few traumatic family tragedies since I was 16 years old to 23 years old. Within 12 months both my mom and my sister Kathryn were diagnosed with cancer. My mom with stage 3 breast cancer and my sister with osteogenic sarcoma (bone cancer) and then my sister had a recurrence and then her sudden death when I was 23 years old. I wouldn’t have been able to get through those times without the friendships I made through my times spent at Dorian Bible Camp as a child. Kathryn was 5 and I was 7; and Kathryn’s friend Kimberley Pidgeon told us she was going to Dorian Bible Camp (less than an hour east of Thunder Bay, Ontario) for a week. It sounded like fun so we asked if we could go and thus started a summer tradition of going to DBC every summer first as a camper than as a staff member. It were ma...

Throughout this journey, the one thing that has constant - a reminder of how blessed I am. That is evident in those in my cheering squad. During my stay at Foothills unit 58, acute rehabilitation unit - the recreational therapists helped me reconnecting to the outside world on my own by telling my mom I would need an iPad. Mom was awesome and bought the latest on the market - 12.9” iPad. One of my occupational therapists made me a mouthpiece stick that could use on my touchscreen iPad. It was an amazing feeling to text one of my friends. Beginning stages of feeling normal, getting a sliver of independence as I didn’t have to rely on my mom to text someone for me.  Knowing my mom had to head back to her home in Thunder Bay, my friend Bev came with us in August to get myself an iPhone. It was like another world opened up again for me. At my 6 week admission meeting with the Skypointe staff, my GP Dr. Bhatia, Jenny, and a few of friends - we had talked about gaining more independen...

It’s been 6 months since moving into my new home - Skypointe. When I arrived August 5, yes the movement was starting with my legs but quite small. I started with Nina, my occupational therapist, for first month for range of motion exercises twice a week and then I hired a massage therapist Jenny my second month at Skypointe, originally for twice a week too. Jenny did the massaging but also did range of motion exercises too. So I went from doing the exercises twice a week, to doing them 4 times a month! Jenny and I agreed, a better treatment plan was three times a week. For the last 5 months, I have been doing our range of motion exercises 5 days a week plus getting a massage 3 times a week. One of the most notable improvements has been my legs. First is how my left knee is able to bend more when I am in the wheelchair. Now my foot doesn’t stick out as much. Makes getting into the Access Calgary bus easier as well as getting around the facility. Second is to be able to re-teach my bra...

Now that my healing is coming along; I have noticed that my right side of the body is healing or showing more strength than the left side. I am figuring as I am right-handed that is why I am noticing more recovery on the right. During the Christmas season I did some retail therapy. Bought a couple of heating pads; a pair of 5lbs ankle/wrist weights and for fun I bought the Ancestry DNA kit as my ancestry has always been an interested in. I am definitely Scottish as I have “Rutherford” on both sides of my family tree. My last purchase was a hospital table that goes over the bed. I love it!! (and so do the staff). When my friend Karen was visiting yesterday (January 18, 2019), I decided to try when I was in the bed to try lifting my hand/arm onto the table. I was successful!! Below is a video of me lifting my right hand onto the table as well as showing how I am moving my fingers on the right hand. Motivation - gaining dexterity in my right hand leads me closer in upgrading to a powe...

One of the things that frustrates me about the English language is multiple words sound the same (there, their, and they’re; or to, too and two). Then there are 2 words that have opposite meaning of one another. For me, those two words are Empathy and Sympathy; as I seem to get mixed up remembering their meanings. So went on Google to find the definitions: Empathy - the ability to understand and share the feeling of others Sympathy  - feelings of pity and sorrow for someone else’s misfortunes ‘ Now you are probably wondering where I am going with this. Everybody knows that saying, “ Walk in another person’s shoes to understand their feelings”. I am now in a position to say that I am walking in their shoes. I am speaking about being considered “disabled”. Thinking of growing up, I do not remember too many people I encountered went at school or in my circle of friends that had obvious physical disability. Probably my main encounter came when my sister Kathryn became a full arm...

My previous experience with severe pain were my gallbladder stone attacks. The come out of the blue and literally take my breath away. Definitely not fun. The pain with GBS is on a whole different level. The slightest touch and it’s agony. Getting a sponge bed bath - it felt electrifying! When they cleaned my fingers and toes especially - the pins and needles were so painful. And you get bathed twice a day so wasn’t a day I wasn’t feeling pain. They use a scale of 1 to 10, and 10 was most painful - I was ranging between 7 to 10 during my days in ICU. Then came the dreaded Tilt Table. You lie flat strapped to a table and then your physiotherapist begins to tilt you upwards to having you stand. I was one big cry baby when it came to do this exercise. The pain that would make me stop was not my lower back or hips - it was my feet. That pain was definitely a 10. My physiotherapist Maureen was a wonderful Scottish lady and to make me smile she would sing a line or two of a Christmas car...

On Friday night (January 4), I downloaded an iBook, “ Happily Ever After ” by Holly Gerlach. She is a GBS survivor from Edmonton who contracted this disease 3 weeks after delivering her beautiful baby girl as well as getting the flu a week before her symptoms surfaced. I had the privilege of meeting Holly when she drove down to Calgary to participate in the Walk & Roll fundraiser which my coworkers organized in my honour. Meeting Holly and another GBS survivor Dean at the fundraiser and seeing them both walking gave me new hope I will be like them one day too - walking. Reading Holly’s book provides an insight of what life with GBS looks like. What you learn when meeting other GBS survivors, all our stories are different - how we were diagnosed and even how we are treated or how long it took to recover. The obvious similarities between the three of us were: we had to be intubated and with a tracheotomy, stayed in ICU for more than three months, had post-admission and/or postopera...

Happy New Year 🥳! A new year upon us - new chapter, fresh outlook to the future. A new year traditionally allows us to set new resolutions we hope to achieve. In January 2014, I changed my perspective - instead of resolutions, I would make goals to achieving looking at my physical, mental and financial healths. Definitely my goals for 2019 would involve all 3 healths. My financial health this year is to remain debt-free and have enough financial security to face any of the unknown decisions that lie ahead this year. The goals for my mental health is primarily to continue with a positive frame of mind. Yes, I will have my bad or rough or frustrating days on my road to recovery; I need to acknowledge those feelings as they are real and would be worst if ignored. What my goal is to learn not to stay too long in that “sad or negative space”. Having a positive outlook as well as surrounding myself with family and friends providing me with positive encouragement has gotten me this far i...

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...