The Early Years ( 1979 - 1982 )
In 1979, when I was two years old, I began to experience Legg Calvé Perthes Disease in my left hip joint. Although the doctors meant well the available treatment I received set me up for a life time of mobility challenges. Various attempts were made to stabilize my left hip joint using traction and a hip dysplasia brace with an abduction bar. At such a tender age this backfired over stressing my right hip and knee joints. In 1981, when I was five years old, it was realized surgical intervention was inevitable to rebuild my left hip joint. I underwent a pair of surgeries and intensive physiotherapy. This only provided me with six good years of mobility.
AIDS Test ( 1987 )
During my first surgery I received two emergency units of blood. It came to light Canada's blood supply was tainted with the HIV / AIDS virus. As a 10 year old child I was tested for HIV / AIDS. Thankfully the blood that saved my life was clean.
The Mobility Challenges Begin Again ( 1992 - 1997 )
As soon as I began puberty I developed a limp. My left leg length wasn't keeping in sync with my right leg length. I was prescribed customized shoes and arch supports to manage the symptoms. My parents had my skates modified so I could take part in this winter activity. In my mid teens I helped lead Cubs. I have fond memories of turning my parents back yard into a skating rink and having the boys over to skate, playing bowling on the ice rink with 2 liter plastic pop bottles being the pins and finish with hot chocolate.
Unsuccessful Medical Treatment ( 2006 - 2015 )
In the intermediary years I began to experience arthritis attacks. These started with my left hip. Then they progressed to include my right hip joint and eventually both of my knees. This culminated with the loss of use of my left hip joint in the fall of 2006 setting in motion a marathon treatment. After an initial stint of physiotherapy failed to restore my mobility I wanted to return to the work force. I accepted employment at a local call center doing customer care and answering billing questions. I accelerated at this job and was eventually asked to help train new employees.
After undergoing testing it was determined my left hip joint needed to be rebuilt in order to make it work again. I underwent specialist hip joint preservation surgery in September 2007. By August 2008 my left hip joint was needing an additional tweak and I underwent day surgery. Sadly 54 weeks after my 2007 surgery the main repair came undone. In the intern my right hip joint suffered the same unusual ailment. In June 2009 both of my hip joints were operated on during the same surgery as a last ditch effort to avoid hip replacement surgery. My right hip came undone after five days; My left hip joint came undone after seven weeks. I was enduring constant pain and broken sleep. I was unable to return to the work force and instead began receiving a disability pension. My ability to walk had become so deteriorated that I began using a power wheelchair in December 2009. I had to re-learn how to live and function with a power wheelchair being my mobility and chronic pain debilitating me.
The challenge then became two-fold: A radiologist misdiagnosed me and at the age of 33 years old several orthopedic surgeons refused to operate based on the misdiagnosis. My family doctor saw my determination and believed in me. We continued to knock on doors. In June 2012 I was given the special opportunity to have a consultation with a 91 year old orthopedic surgeon. He mentored the orthopedic surgeons in my community and made himself available in special circumstances. I presented my case during a marathon 2 1/2 hour appointment. When this orthopedic surgeon reviewed my diagnostic imaging he found the mistake of the radiologist and recommended I be offered hip replacement surgery. He cautioned that my hip replacement surgery would be complicated on account of my childhood hip disease and I became the patient of the head orthopedic surgeon at a teaching hospital.
My left hip joint was replaced in May 2013. Sadly I didn't heal and recover as was hoped for. Typically when both hip joints are worn out it is recommended to replace them both during the same surgery unless there is a medical reason that would place the patients health at risk. Otherwise the patients healing is prolonged and very challenging. In my case the doctors hoped I would recover and my right hip joint was only over stressed. They wanted to give my right hip joint a few more years of usage. My right hip joint prevented me from engaging in the physiotherapy. Even water based physiotherapy was too strenuous for my right hip joint to withstand. I continued to be dependent upon a power wheelchair for my mobility.
My right hip joint was replaced in February 2015. My entire medical team was so hopeful this would lead to the end of this chapter of my life. Two weeks following the surgery it was apparent my right knee joint would make the recovery challenging. A month after the second hip replacement surgery I lost the use of my right knee joint for a week. As 2015 came to an end my right knee joint had continued to interfere with the healing for my hip replacement surgeries. My mobility wasn't restored. My hip replacement surgeries only managed to trade one set of challenges for a far more difficult set of challenges to manage.
Thankfully throughout this ordeal my mental health didn't deteriorate.
A Year Of Physiotherapy ( 2016 )
Throughout 2016 I faithfully continued using a swimming pool for my physiotherapy and experimented with what conditioning center equipment might help me. The support which developed from my consistent attendance at the gym was wonderful. The challenges I had been experiencing in 2015 gained momentum as the setbacks with my knee joints continued to occur.
My first setback occurred on January 14th 2016 by simply repositioning my right leg in bed. I was later diagnosed as having a partial ACL tear within my right knee joint and sent home to heal for six months. My mobility peaked at the beginning of August 2016 with the ability to walk a modest 70 feet a few times during each day. Then a setback on August 13th 2016 reduced my ability to walk to a distance of 30 feet. On October 14th 2016 I was encouraged to try a squatting exercise outside the pool. This severely degraded both of my knee joints. I was left with an awkward looking gait and only able to walk a distance of 10 feet.
After loosing the gains I had worked so hard for I was re-admitted to a physiotherapy clinic on November 10th 2016 for closer supervision. With cutbacks to Ontario Canada's health care this only provided me with a home exercise program --- much the same as a person would engage in life coaching. This gave me a fresh brain to probe but not someone to help me through setbacks following each coaching session. Ultimately this attempt at physiotherapy was futile. I was discharged on February 3rd 2017 with the physiotherapist recommending my family doctor consider other treatment methods with me.
Throughout this ordeal I focused on what I could do and not what was taken from me.
- I learned how to develop web sites.
- I started a YouTube channel to support others who endure the challenges of mobility and chronic pain. My mobility peaked at the start of August 2016 with the ability to walk a modest 70 feet. Setbacks on August 13th 2016, October 14th 2016 and December 20th 2016 progressively left me with less mobility.
- I spent time using my hands with crafts.
- I was able to be a mentor to various youth in my community.