My Journey with GBS

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...

I know in a previous post, I said that the one word to describe my journey with Guillian Barre Syndrome was BLESSINGS. That statement is still true. Of course in any journey we walk we will have many others words to express our experiences. One of those words for me would have to be Frustration.  How could it not be in my situation? A rare disorder (1-2 per 100,000 people) with no real reason and no cure either. To top it off, “Sorry to say this is the worst case I have ever seen.” - needing to be on life support for 10-11 months because I couldn’t breath on my own, but devastatingly I am unable to move from the shoulders down. I am a quadriplegic. Frustration, anger, feeling sorry for myself that I could no longer move my body. I have lost control, I have lost my independence with a snap of my fingers.  Almost 3 years now (September 9, 2019) - I would categorize myself as an incomplete quadriplegic as I have begun recovering some movements in my body but still paraly...

“Trust in Him”    - easier said then done. How can you trust in God when life feels so unfair? Why do I have to face yet another challenge in my life? Learning to live with Guillian Barre Syndrome (GBS) I think is the toughest I have had to face just by the debilitating impact it has had on my life; plus those loved ones around me.  Since I was 16 years old my family had to face: my mom’s stage 3 breast cancer diagnosis; 9 months later my sister was diagnosed with osteogenic sarcoma (bone cancer) and only to have it recurred 18 months later. Talk about putting a family through the ringer for sure. Life was finally feeling a bit normal, when the unthinkable happened - my sister’s death. For 21 years I had the title of Big Sister, and suddenly it was taken for me. All the “Why’s” - Why Kathryn? Why did we have to have more pain? Why do we deserve this?. Kathryn had a stronger faith than I did. I remember my mom telling me before my sister went into one of her major su...

Hearing “I am the worst case of GBS they have ever seen” by doctors; you do feel alone because you have anyone who could truly understand what I am going through. Please don’t get me wrong, the support I have received from family, friends, coworkers and my medical staff are amazing and I couldn’t get this journey without them. I guess it the mental perspective that I feel alone. All those mental/emotional feelings - frustrations, realizing the things I have lost and probably won’t get back, sadness, helplessness of can’t helping others like I use to and worry about things out of my control or scenarios not yet occurring. The variant of GBS that I have is Acute Motor-Sensory Axonal Neuropathy (AMSAN). Not only the motor-sensory nerves damaged but axonal part of the nerve has been damaged too. The other contributing issues with this variant is the autonomic dysfunction diseases. Below is good pictorial of the body systems GBS can impact and I have/had 5 of 6 body systems affected. ...

Living in it Day in and day out, sometimes it’s difficult to see the baby steps I am making in my recovery. One of those baby steps is sitting on the side of my bed. The second time I attempted it was March 23, 2019 when my mom was visiting. We were both excited about this achievement as it was the first time I sat up without the assistance of a sling. My HCA Webster helped me swing my feet over the side of my bed while my physiotherapist Kashish swung up into the sitting position. Then using the core and back muscles that are working to straighten me up. With Kashish providing support, I even kicked my lower legs back and forth too. About 2 months later, another achievement reached - sitting without being supported by Kashish. Though a didn’t get a video of it, on this day I even did exercises where I tilted side to side brought myself back to the middle. I was amazed that I was doing it, so I had to get Webster to take a photo to prove it to myself.  After each session, ...

On Saturday May 25, 2019 Calgary held their 2nd annual GBS/CIDP fundraiser event at South Glenmore Reservoir. This yea we had fine drizzle while we walked or rolled the mile or two. We had a couple of people from Edmonton as well as Red Deer this year. I was reminded how fortunate I am to have an awesome support system in Calgary from friends and coworkers.  Last year, which was organized by my fellow coding coordinators and the GBS/CIDP Organization we raised $11,167 towards GBS/CIDP research. This year, the Laura’s Cheering Squad raised $2800.00 and this year’s total was $11,056. So close in matching last year’s total. It’s amazing in 2 short years we have raised over $22,000 for research. We are looking forward to next year’s event and add what we can do next year to bring more awareness to this disease.  Just like last year, I had a wonderful day seeing friends and colleagues making me smile all day long. Thank you Amanda for being my attendee and wheelchair drive...

My journey with GBS has been a long and agonizingly slow process. Reading other survivors’ stories and finding the whole thing frustrating and asking myself many times, “Why”.  ‘Why me?”; “What did I do to deserve this”; or “Why did have to get the worst case anyone has seen?”. Doesn’t make sense. Of course, in life what happens won’t always makes sense - no rhyme or reason , it just is and accept it.  When I was lying in my ICU bed for a few months now attached to life support as I couldn’t breath on my own (mechanical ventilator via a tracheostomy), and the only movement I had was my shoulders, I was obviously teary thinking “Is this my life?”. Dr Zuege said to me a couple of times, “If you don’t give up, I won’t give up”.    Not wanting to disappoint, I didn’t give up as I had a doctor in my corner cheering me on. Flash forward to 2019, 2 more physicians have given me the same encouragement. Dr Chris White, my neuromuscular physician, did give the “truth”...

Acceptance. We all have to deal with this feeling some time during our life, some more than others depending on what people are having to deal with in their lives. For myself, I have had to deal with acceptance, especially now in my current situation of being an incomplete quadriplegic (having some movement in my limbs but still require total care for daily needs). Before you arrive to accept something as reality, I find myself putting it has a far-off dream, as not being a part of my own reality; therefore I don’t to accept it because it’s not true. Denial is a gift until one has to finally face the reality of their situation.  My journey in recovering from GBS has been agonizingly slow, to say the least, it is still progressing which tells me I have not come to a final outcome yet. Therefore, I don’t have to accept my outcome because changes for the positive are still happening. But in recent months I find this is not the case. Yes I am improving, but realities need to b...

It’s almost been a year since arriving at AgeCare - Skypointe continuing care facility. Quite the adjustment for a 47 year old to be living in home where I am 15-20+ years younger then everyone. I arrived mid-morning and as I came off the elevator, there in the tv common area, a circle of residents in wheelchairs facing the tv. Hard dropped thinking is this my life now? One of my first HCAs (home care aide) to assist me in getting settled into my room was Edith. Such a bubbly and positive person - you can tell right away. Edith is originally from Peru, but has been in Canada for 20 years now, but she not lost her Spanish accent. We became good friends this past year, not surprisingly as she is just one year older than I am. I love her energy - we share many laughs. People must wonder is going in my room with both of our loud laughs. The times for changing or transporting me to my chair from my bed, plenty of laughs as we share stories. Just like Edith I have  a good relationsh...