My Journey with GBS

Music therapist pulls strings for Foothills patients | Alberta Health Services In March 2018, I was asked by my music therapist, Sam, if I would participate in a music demonstration for a TV interview she was doing. I agreed. When I got to the 3rd floor Physiotherapy room, there were two other patients who were recovering from strokes. The reporters asked if they could interview one of us, and I was the lucky one to be asked to be interviewed. I didn’t have to get nervous as I was asked minutes before it occurred. I was glad to help my therapist who has helped me in my recovery.

One afternoon a lady with a guitar came into my room. She led the music therapy on Unit 58 Rehabilitation floor. She spent some time “getting to know you” and finding out what type of music I enjoyed. Had to tell her I cannot carry a tune, unless of course it’s in the privacy of my car or shower (haha). One of the songs we sang was Dancing Queen by ABBA as I shared how it was a request of one of my Mom’s friends as he passed. Thought that was great - a bubbly song. Turns out my NA, Don, had told her about me enjoying music and that I might want to take part in music therapy. Since I can’t really sing, I wasn’t sure about music therapy. Well, I think it was a great addition to my therapies. Sometimes we did more talking than singing on Wednesday afternoons, but it brightened the day. The music was all different genres and the type of music chosen depended on my feelings on that day. Feeling good/positive - chose lighter and bubbly music; Having a low day - chose reflective music; a

Being in the hospital for a year and a half, I have been able to see the health care dollars at work. From the care received by doctors, nursing staff, therapists and even those in housekeeping; I was treated with dignity and respect and kindness. In PLC ICU, my nurses Morgan, Chelsea, and Sweetie saw me through some of my dark days sharing their faith with me. Sharing a verse or two to give me encouragement and praying with me which gave me strength. Colleagues Darby and Kiwi (she was from New Zealand, hence the name) each brought me “contraband “ to make me feel better - cherry popsicles and Timmy’s stepped tea respectively. When I was transferred to PLC Unit 39 - my nurse Michelle decorated my room with streamers, balloons and a Happy Birthday sign and Dr Samis brought me up to the hospital helipad to see the city of Calgary to make my birthday special. I met a nursing aide (NA) who came from Nigeria and shared his story that it’s important to have faith when going through a jou

 One of the steps in my rehabilitation program is “re-entry” into society. In other words, having someone feed me in public. For the last year and a half, I have eaten my meals in the privacy of my own room. SSB Unit 58 has a unique set up in which it has its own dining room, so it’s only patients, their families and nursing staff use it. One day after my recreational therapy, I found I was feeling okay in my wheelchair so I made the decision to have lunch in the dining room instead of my room. I survived. :)  So begins a new addition to my routine - eating my lunches in the dining room. As my pain tolerance in the wheelchair improved, I added going to the dining room for supper.  As time went on during my admission, my confidence grew in not caring what people were doing around me. Throughout this experience, my sister Kathryn was not far from my mind. She was a person of great inspiration as I had watched her face cancer with grace and strength. February 3, 2017 was 23 years

 It’s been a year and a half since being admitted to ICU, my contact to the outside world was limited. For starters, I was unable to speak for a good 10 months so communication was challenging for sure. When I was getting my voice back, I used my mom’s cellphone to phone family and friends to stay in touch. On my behalf, I was fortunate my friend Sara wrote on my Facebook page to update my family and friends on my condition and recovery. Here I lie in bed, and when not visiting with people or going to therapy, I watch TV for hours on end or ask the nurses to turn on my CD player and  close my eyes to nap. In the new year, Kim (RT therapist) knew my goal was to return to work but more importantly she knew I needed to learn how to live as independantly as possible as a quadriplegic. One lesson to learn was how to communicate. The first step - learn what medical assisted devices are available for me. She gave me a card holder so I was able to play cribbage again. Then we looked at th

Settling into a routine my first month or so on SSB Unit 54 - my meals in my room being fed by mom or a nursing aide; having range of motion exercises twice a week; playing games with another patient in recreational therapy in the mornings Monday to Thursday; and meeting with my psychologist on Friday mornings. In the afternoons was visiting with my mom and friends popping in to say hello. About this time, Kim my recreational therapist told me I will doing yoga on Mondays for an hour. I looked at her funny “ You’re kidding me? How can I do yoga when I can’t move my limbs? ” . Yoga to me was posing and stretching and it is usually for able-bodied people. That afternoon I go down to the recreational room and there were about 4 other patients there, also in wheelchairs. The type of yoga we were doing was Breathing Yoga. Basically, the therapist plays meditation music and we do breathing exercises to assist with controlling pain levels as well as decrease a person’s anxiety levels. Must

I have now been living with GBS for 1.5 years  - it has not been easy always staying positive and optimistic about my recovery. Many tears are cried from my frustrations about my situation. I hate seeing what is doing to my Mom - she uprooted herself from Thunder Bay to be by my side to see me through this journey I am now facing. GBS - no known reason, no known cure = so many unknowns. The challenge with unknowns it is difficult to predict one’s future. You also learn that thinking too far in the future leads to frustration and negativity. To stay positive and maintain optimism, I struggled to stay “in the now” and being a thinker, only look a few months ahead. Another dose of reality is that a wheelchair is going to be in my now and short term reality so I better accept that. The OT staff were so patient with me as I adjusted to sitting in a wheelchair. The OT team became my “MacGyver” in helping me increase my endurance in the chair and creating for me a tray to relax my arm

Knowing my recovery is going to be a slow recovery, I had to celebrate another Christmas in the hospital. My Mom tried making my hospital stay cheery by bringing in a small Christmas tree to brighten my room. It was a battery operated tree and these nice white lights that was a night-light. When I woke up during the night, it gave me something to smile about, a feeling of happy memories with my Mom and family. Christmas 2017 was a wonderful day. My pain was under control, which was a nice present for me. I had a good day sitting in the chair too. Mom and I enjoyed opening gifts under our little tree. Myself and the nursing staff enjoyed Mom’s homemade shortbread (oh so yummy!!) and chocolate chip cookies she brought in. What made the day special - my Three Hills families came to all feed me lunch. What a wonderful surprise - Jon J; Amy and Garron with their kids Journey and Sol; Sara and John with their kids Sierra, Ethan, Casendra, William and Elysia; and David with his kids Emma,

FMC Unit 58 is an acute rehabilitation unit that serves as far north as Red Deer; as far south as the Alberta/Montana border; as far west as Kelowna, BC and as east as Alberta/Saskatchewan border. That is a huge area when you only have 45 beds focusing on: head/brain injuries; stroke and spinal cord injuries. So I feel fortunate to be given this opportunity to continue in my recovery. I know they took a chance on me; in that I had only sat in a wheelchair for the first time 4 days before my transfer. This unit has a great medical team which includes physiotherapists, occupational therapists, a psychologist and recreational therapists. I had no clue what recreational therapy can be given for a quadriplegic. How can I participate in activities when you don’t have use of your arms and legs. Well, to my surprise there were many activities I could participate in. They reintroduced me to my love of cards. They gave me a wooden card holder. I was able to play cribbage again - one of my favo