2018 in reflection
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 - Get Better Slowy. 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 with, so visitors had to read my lips to have a conversation.
Christmas 2017 - I am now a patient at the Acute Rehabilitation Unit at Foothills Hospital. Gone are the PICC line, feeding tube, the tracheostomy and mechanical ventilator. I now have a voice with makes communication so much easier as well as feeling mo connected 9th people now that I can talk. For movement - not much though I am doing range of motion exercises with my limbs.
Start of 2018 - continue my recovery at Foothills Hospital. With the help of my Physiotherapy and occupational therapists, I gained tolerance in seating in my wheelchair longer and seeing some improvements with m arm strength and hand movement. My recreational therapists assisted me in opening my lifeline - with a 12.9” touchscreen iPad and a mouthpiece stick with a stylus at the end - my world opened up again by allowing to reconnect with family and friends and my Facebook family
too.
April 2018 - On the move again. I met the goals we set up at Foothills when I arrived September 21, 2017. While awaiting placement to a LTC (long term care) facility, I was transferred back to Peter Lougheed Hospital to the transition unit where I continued my Physiotherapy and range of motion exercises.
Spring/Summer 2018 - Tara (my PT aide) help me see movements in all limbs while gaining strength too. Went to the movies again - seeing Jurassic World and Mission Impossible. So good to do something I enjoyed in my “old life” again, made me feel normal.
August 5, 2018 - On the move to my temporary home - AgeCare Skypointe. Talk about a learning
curve and adjustment for me due to the obvious generation gap between me and the other residents on my wing.
August/September 2018 - Adjusting to my new home and establishing a new routine to continue with my recovery. Nina, my OT aide, continued where Tara left off with my range of motion exercises on arms and legs twice a week. Seeing more improvements with my hands and fingers. Aside from having a summer heatwave, I was having an issue with legs and hands swelling/being puffy. September 13, I met my massage therapist Jenny to help reduce the swelling as well as improve my circulation too. I realized quickly that I should my massage therapy sessions 3 days a week. September 19 I had my 6-week admission family meeting. Not only was my doctor there (Dr.
Bhatia), my primary nurse Amanda, and my recreational/occupational therapists and social worker
but my friends Bev and Marilyn represented my mom who returned to Thunder Bay after spending almost 2 years by my side, along with Jenny and close friends Amanda and Sara. You quickly could see what an awesome team I have professionally and personally. I am so blessed.
October 19 - On this day I had to close the chapter of my former life. I sold my cute starter bi-level home and my KIA Sportage. It was sad as it was last physical items of my independence, but both sells have given me some financial security to be ready of what lies unknown ahead.
November/December 2018 - Movement!!! These past couple of months I am seeing obvious movements in all limbs. The work I have been doing with Nina and Jenny are paying off. I feel like yelling - FINALLY!!! Moving my fingers into a half fist and able to raise my right arm higher than ever but the major improvement is my legs. I can move the legs side to side unassisted and I can lift my foot off my bed (small amount).
So as we close 2018 - I can se my baby steps are turning into a big step. This is one way to help me stay positive seeing though it is “doing it slowly” - I am improving and I am still recovering.
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 with, so visitors had to read my lips to have a conversation.
Christmas 2017 - I am now a patient at the Acute Rehabilitation Unit at Foothills Hospital. Gone are the PICC line, feeding tube, the tracheostomy and mechanical ventilator. I now have a voice with makes communication so much easier as well as feeling mo connected 9th people now that I can talk. For movement - not much though I am doing range of motion exercises with my limbs.
Start of 2018 - continue my recovery at Foothills Hospital. With the help of my Physiotherapy and occupational therapists, I gained tolerance in seating in my wheelchair longer and seeing some improvements with m arm strength and hand movement. My recreational therapists assisted me in opening my lifeline - with a 12.9” touchscreen iPad and a mouthpiece stick with a stylus at the end - my world opened up again by allowing to reconnect with family and friends and my Facebook family
too.
April 2018 - On the move again. I met the goals we set up at Foothills when I arrived September 21, 2017. While awaiting placement to a LTC (long term care) facility, I was transferred back to Peter Lougheed Hospital to the transition unit where I continued my Physiotherapy and range of motion exercises.
Spring/Summer 2018 - Tara (my PT aide) help me see movements in all limbs while gaining strength too. Went to the movies again - seeing Jurassic World and Mission Impossible. So good to do something I enjoyed in my “old life” again, made me feel normal.
August 5, 2018 - On the move to my temporary home - AgeCare Skypointe. Talk about a learning
curve and adjustment for me due to the obvious generation gap between me and the other residents on my wing.
August/September 2018 - Adjusting to my new home and establishing a new routine to continue with my recovery. Nina, my OT aide, continued where Tara left off with my range of motion exercises on arms and legs twice a week. Seeing more improvements with my hands and fingers. Aside from having a summer heatwave, I was having an issue with legs and hands swelling/being puffy. September 13, I met my massage therapist Jenny to help reduce the swelling as well as improve my circulation too. I realized quickly that I should my massage therapy sessions 3 days a week. September 19 I had my 6-week admission family meeting. Not only was my doctor there (Dr.
Bhatia), my primary nurse Amanda, and my recreational/occupational therapists and social worker
but my friends Bev and Marilyn represented my mom who returned to Thunder Bay after spending almost 2 years by my side, along with Jenny and close friends Amanda and Sara. You quickly could see what an awesome team I have professionally and personally. I am so blessed.
October 19 - On this day I had to close the chapter of my former life. I sold my cute starter bi-level home and my KIA Sportage. It was sad as it was last physical items of my independence, but both sells have given me some financial security to be ready of what lies unknown ahead.
November/December 2018 - Movement!!! These past couple of months I am seeing obvious movements in all limbs. The work I have been doing with Nina and Jenny are paying off. I feel like yelling - FINALLY!!! Moving my fingers into a half fist and able to raise my right arm higher than ever but the major improvement is my legs. I can move the legs side to side unassisted and I can lift my foot off my bed (small amount).
So as we close 2018 - I can se my baby steps are turning into a big step. This is one way to help me stay positive seeing though it is “doing it slowly” - I am improving and I am still recovering.
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