My Journey with GBS

  Grief and loss. Two human emotional reactions we deal with in our lives. Traditionally, we relate grief and loss to losing a loved one in our lives. Or when someone faces a challenge or trauma, there is a loss and/or grief. On Sun Sept 27, 2020 I attended a webinar on dealing with grief and loss, hosted by the GBS/CIDP Organization of Canada. Initially, it was difficult to link my grief and loss as many of the examples given were related to a death of a person. Luckily halfway through I was able to try taking the tools given and adapt them to a “thing”, which would be GBS in my case.   These traumas can be small or large but impacts your life none the same. Plus each time our reaction to these traumas can be different as one’s coping skills vary. They speak of the 5 stages of grief - Denial, Anger, Bargaining, Depression and Acceptance. It is these stages of grieving I learned about when I went to counselling in November 2009. My counsellor shared with me, I had not fully grieved fo

  What a wonderful few days it has been receiving family and friends Facebook birthday wishes, cards, ecards, texts, phone calls and outdoor visits. I was able to arrange 3 community walks too. We went about a block from my facility where there is playground equipment. The kids got to play for awhile so the adults get a chance to visit with minimal interruptions. The great thing was were the only ones there, so we had our own Covid-19 bubble for playing and visiting. Yesterday I had a Timmy’s tea - a special treat for sure. Thank you everyone for making my special day all that more special despite Covid-19 restrictions.   As the recreational activities are primarily focused on the senior citizens in our facility. So I don’t tend to involve myself in these activities. With my cognitive skills, I have gotten involved by becoming co-chair of the Resident & Family Council. With becoming more confident in using my “voice” for not only myself but for my fellow residents too. With obser

I never did met that special someone to share my life with me. My brother and his wife did not have any children, so never thought I could become an “auntie”. I was so wrong in my thinking. I have some dear friends who are actually more than friends - they are my sisters, they have made me feel a part of their family. Through this, I have become “auntie “ to their children. What a honour and blessing they all have been to me. So many cherished memories from when they were newborns to young adults.  Watching over the years as they developed their personalities and how they interact with one another. Their cute sayings and being blunt (saying it as they see it), their wonderful hugs and when they were babies sleeping so peacefully on my chest or shoulders. As they become teenagers, watching how they are figuring out what is important to them and figuring out their future goals and dreams. My friend, Sara Paterson’s daughter Casendra, I have known her since she was a newborn, born in Feb

Well, I have had a week to begin processing and accepting what my present will be. This past week, I also received news that 3 staff who have been here with me from day one are leaving AgeCare-Skypointe for other positions - taking advantage of opportunities to advance their career; for their families or simply for a shorter drive. I will miss them as they were a great encouragement to me. They had my back for sure. Had a small cry earlier this week when speaking with Dr. Bhatia about it all. I am sure there will be more tears in the future. On Sept 16, I had a wonderful visit with my friend Sara along with 3 of her children - Casendra, William and Elysia. We went for a tour of the strip mall across the street that just was built this past year. Unfortunately, the buildings that are open majority of the doors are too small for me to enter. Even McDonald’s. I asked to see the manager while bought our food. When I asked how I would have McDonald’s if I couldn’t get through. She told me,

On September 17, 2020 - I turn the big 5-0!! Imagine I will be a half century old - 5 decades. How it has been a learning journey as I look back. Thought I would be reflective as I move into a new decade. Seeing how I evolved into the person I am to, you can see your strengths and weaknesses to your personality. Also you can see how events you have in life can change the direction you would have been going down. Of course, these same events can “forever change your life”, and one needs to learn how to pick up those pieces to continue on with your life. Some people don’t like to look back and only forward. If you lost someone, you don’t feel comfortable talking about this person, maybe as it hurts too much to remember the pain of losing that someone. I am of the mind - looking back helps me see how far I have come or what I have overcome.  In November 2009, I hit a low, probably a form of depression. I didn’t realize at the time, I was heading into a pool of darkness and negativity, not

  Hello   This letter is long overdue. Hearing from you through cards and encouragement, has meant so much to me, especially as I move from Thunder Bay 15 years ago now. Your prayers each Sunday comforts me knowing God is beside me and He has surrounded me with warm and caring people in my life. This has given me strengths and positivity to carry me forward in my journey.  Jeremiah 29: 11-12: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” This verse has come up over the last 4 years when I needed to be reminded the importance of having our faith. I would never wish this GBS on anyone, it has tested my faith that is for sure. In my first 6 months of my diagnosis, I was so fragile that had 2 near fatal complications but my body fought along with the medicine I was receiving and came through them. Throughout this whole journey thus far, I have received such blessings that has humbled me, made

Reality really sucks, you know that? Why does it feel you can’t catch a break? I didn’t ask for this to happen to and over eating uncooked chicken, imagine? A moment in time, is all it takes to change your world upside down and back again. Yesterday (Sept 10), I had an Nerve Conduction test and an EMG (electromyogram) to measure the reaction of my muscles and nerves. These are the tests they use to identify Guillian Barre Syndrome and your variant to help with the treatments to provide. The news yesterday was defeating as I was hoping for better results. In comparing the results from November 2016, July 31, 2019 and yesterday - there is minimal improvement to my nerves and therefore to my muscles. My nerves are too damaged to send the messages for my muscles to move. With the variant of GBS I have, Acute Motor Sensory Axonal Neuropathy - AMSAN. It the the axonal component of this variant that makes it have poor recovery or fatal outcome. The reasoning is how much the nerve has been dam

  Today (September 9) marks 4 years since my life was forever changed. Almost everything of my “old life” with a flick of the finger was destroyed and disappeared. For 45 years, I was an able-bodied person going merrily on my way. Enjoying a good life - being a first time home owner; a job I enjoyed doing (and I think I did well in it too); and the freedom to just get into my car to venture to unknown places or visiting friends on the weekend. In a blink of an eye, it was gone. I was in and out of consciousness for the first 5-6 weeks. What I still remember are the continuous nightmares which at the end of each one had me dying. Scary, really. When I finally woke up (just before Halloween), I could not move nor could I talk but I could hear everyone talking around me and constant beeping of all the machines; plus seeing the different tubes around me too. Dr. Zuege came to my room to explain I have been diagnosed with a rare autoimmune disease called Guillian Barre Syndrome (GBS) which

  September 8, 2020 Dear Premier Jason Kenney.  Hello. My name is Laura Jean Rutherford and I live in a long term care facility, AgeCare-Skypointe in Calgary, Alberta. I am writing to you as a concerned Alberta citizen of the policies and bills you have pushed through since during the Spring/Summer 2020 sessions. I am concerned as I feel you are truly not thinking of the impact to the Alberta citizens, only looking at how it benefits those who support and lobby for you, as well as benefiting those large corporations who you support and basically doing whatever you wish to do just because you have a massive majority government that the opposition parties can hold you accountable in the changes you have made for Alberta.  I am originally from Thunder Bay in Northwestern Ontario and I moved to Calgary in March 2005 for a position at Alberta Health Services (formerly Calgary Health Region). I was lured to Calgary because of a career opportunity to advance myself professionally and it

  Being oblivious of obstacles that one’s face is easy to do when you are not “walking in their shoes”. This has been the case for me in respects going from able-bodied to disabled as a quadriplegic from the shoulders down. Then to add to the obstacles we face, I am also overweight with an oversized wheelchair, it makes if even more difficult for me. The obvious obstacles we face is limited access to public transportation especially when it comes to the width of one’s wheelchair. We have limited options - public buses with specialized ramps to allow to enter/exit the bus from the sidewalk; or wheelchair accessible taxis which has a ramp which allows access; a specialized van which includes a ramp coming from the side of van to allow access; and the public Handicap-Van service. I can only use the last choice for transportation due to width of the wheelchair from wheel to wheel. Actually when I was in Foothills Rehab floor, the wheelchair I bought, they had to remove the inner wheel (whe

  Finding a purpose. I definitely have been struggling to find a purpose that could be passionate about again. Before being diagnosed with GBS, one of my purposes was working in the Data Collection section of Health Records. I was involved with sharing the data collected by our coding specialists to physicians along with our coding specialists too. In addition, I was a part of training new staff or assist in the cross-training of a new coding discipline as well as representing my health zone (Calgary Zone) on a provincial data collection workgroup or representing Alberta on a national committee to review our national coding standards. For me, I found it interesting as I learned from each task.   Unfortunately, with my diagnosis of GBS, almost everything has been taken from me - starting from scratch you would say. Reinventing myself - challenging for sure as my “right now”, I have to face it has a quadriplegic with limited movement, none that can allow me to do any of my daily basic n