When Were You Diagnosed?
CAUTION: This is a longone.
There is a very, very high probability that everyone reading this post will have been diagnosed at some point in their lives. I like things to be organized, so lets get a definition of diagnosis. Google time!
Di-ag-no-sis (noun)
- The identification of the nature of an illness or other problem by examination of the symptoms.
The keyword in that definition is symptom(s). Let’s take things one step further and define symptom as it pertains to medicine. Back to the google! The Oxford English definition is as follows.
Symp-tom (noun)
- A physical or mental feature that isregarded as indicating a condition of disease, particularly such a feature that is apparent to the patient.
Ugh! So many definitions, so little time. I want to share another definition of symptom that uses the terms subjective and objective to help explain further. And the google of “objective symptom definition” produced this:
“Medical Definitionof Symptom: Any subjective evidence of disease. In contrast, a sign is objective. Blood coming out a nostril is a sign; it is apparent to the patient, physician, and others. Anxiety, low back pain, and fatigue are all symptoms, only the patient can perceive them.”
(taken from www.medicinenet.com)
Time to get real personal, real quick to keep this story going. Remember my vibrating feeling, unpleasant discomfort, stress state from when things were not balanced or even in kindergarten? Turns out that is a symptom of obsessive compulsive disorder (OCD). Think Dr. Sheldon Cooper (Big Bang Theory) not Howard Hughes (played by Leo DiCaprio in “The Aviator”). At times elements of both, but mostly quirky and needy. My science loving, no stranger to doctors brain, was actually pleased to have a diagnosis. I had a reason why. My eyes are bad = cataracts and astigmatism. Certain things make me feel “off” and I have a few quirks = OCD. Life went on. Both of my first diagnoses came from signs of something being wrong and MY description of what my brain perceived.
My family doctor, who delivered my sister and I, was Dr. Sandy Nash. He removed my appendix when I was 9, the year after my first eye surgery. 1999-2001, ages 8-11, were a tough go. I really liked Dr. Nash because he listened to me. Unlike my stubborn mom. Just a joke mom, I love you. There is no chance that aspirin use or exposure to second hand smoke during pregnancy turned on the specific genes responsible for my DNA to express the defect for congenital cataracts. YOU HAD ONE JOB WOMAN!!! Again, I joke, I tease, I love my mother. Just a little epigenetic humour. What’s epigenetics? Check out this youtube URL https://youtu.be/JTBg6hqeuTg. Joking aside, my mother is the most loving and selfless person I know.
Story Time!
About 1 year after my first eye surgery, where I was convinced I was going to go blind after, I started to experience intense stomach pain on a Thursday in June. Now, being the high energy, quirky little guy I was, I sometimes did not want to eat until I was hangry (hungry-angry). I would describe this hunger as a sharp bone trying to poke out through my stomach, and in my mind I was going to die. Back to that weekend in June. My stomach was killing me but I could not describe it verbally. Closest thing was hunger and also that my shorts were too tight and this was driving my OCD into overdrive. So my mom – first generation Canadian, born of Italian immigrants, no stranger to sacrifice and hard work – fed me, and fed me. I survived a roller hockey game, a soccer game, a piano recital, and a dinner with my grandparents, before I finally convinced my mom that is was not just hunger; something was really wrong. Dr. Nash answered my mom’s call and, through her, I was asked some pointed questions, did some movement tests and then I was hauled off to Kelowna General Hospital for an emergency appendectomy. We had to wait a while because I had eaten so recently. That night was a long and very painful one, but I survived. Like I said, I really liked Dr. Nash. He listened and understood me. And yes, I really do love you mom, don’t worry.
Okay, what does this have to do with the story of this blog? Chill. You don’t even know how many posts there are going to be. So let me continue on with the story of me.
Years passed, trophies were won, hardships were burdened, meals were shared and some education was completed. Calgary was home for the first time and I was finishing up my undergraduate degree in Kinesiology; working as an exercise therapist for Keren, a 3-year-old girl, who lived with a rare form of cerebral palsy (CP). I was essentially a manny. A manny who’s job it was to facilitate normal physiological movement to allow for normal cognitive development, and give her mom a break. This time in my life is hard to describe. But here goes. While working through the hardest semesters of my undergrad, I was volunteering at a pilot project gym for cancer survivors and getting a crash course in caring for a child with a neurological disability. I loved every minute of it.
I remember experiencing lower back pain during my exercise therapist (manny) job. Keren’s CP is classified as quadriplegic athetoid or dyskinetic cerebral palsy (ADPC). A google search will bring up a lot of great information on CP and the different forms. I will explain in as clear terms as I can. Developmentally she was physically the size of an average 3 or 4 year old. Cognitively, she passed all appropriate milestones. However, her output was not what would be expected from someone her age and there is not yet a way for children, with severe forms of CP, to show what they really know. She understood verbal communication but communicated back through a few sounds, eye movements and slow head nodding. At times she had trouble swallowing, so eating and drinking were challenging.
Keren’s CP classification means that all 4 of her limbs, plus neck, are affected. And her muscle tone would fluctuate between hyper and hypotonic. So many terms….The muscles of her arms, legs, trunk and neck would mostly be really relaxed (hypotonic), unable to support herself in a sitting position. However, she would experience spasms in these muscles when she would try to move on her own, and her body would experience developmental reflexes at inappropriate times. In order for her to experience movement and explore her environment she needed a lot of support. Enter The Incredible Manny! I was her human walker, chair,and imagination facilitator. Seeing her face beam when she was able to experience sitting, walking, jumping and kicking was indescribable. It was more than enough to distract me from any perceived dangerous pain in my body. My lower back would get sore and numb, and my left leg would go numb from time to time, but it never lasted long. My physical perception of pain was dampened by descending cortical control. My brain would say “of course your butt is numb, you have been sitting cross legged in a posterior pelvic tilt for one hour. Playing blocks and reading stories, while supporting a 35 lbs child who needs you in order to learn and escape her physical reality. Relax, it will go away once you move around. Look how happy she is.”
I warned you at the beginning this was a long one.
As my time with Keren came to an end, my back and leg pain started to linger. I was able to do my normal olympic weight lifting and workouts, but I could not stretch my left leg without increasing pain into my back. Lucky for me I was at UofC and I knew some of the best physios and sport medicine doctors there. I eventually had an MRI and was diagnosed with a L5 protruding disc impinging on the S1 nerve root.
Okay great! I have a diagnosis, now what? Well, my brain went into overdrive and I researched and tested and tried anything to help me feel balanced and even again. I tried real time ultrasound to see my Transversus Abdominus (deep core) activate and practiced this to stabilize my spine. Nothing helped with my pain and my physical functioning started to decrease. I had numbness on the outside of my left foot for about 6 months and sitting was torture. Then my left leg started to lose muscle strength. I tried physio, chiro, RMT and acupuncture/intramuscular stimulation (IMS). Nothing provided substantial changes to my condition. At one point, I was told I had a midline issue; which meant my nervous system was out of balance and my brain was perceiving the right and left sides differently. Great (loud sigh), now my brain is just completely confused …and I thought I was the one in control of it. Medical professionals kept reminding me that it was such a shame how young I was to not be responding to conservative treatment. This really freaked me out and I was getting desperate because I was supposed to be moving to Vancouver, to attend UBC, for my Masters in Physical Therapy. My brain and body felt frantic, searching for answers. Hauntings of my kindergarten woes started to creep into my mind.
A plan was formed. My doctor at UofC suggested two weeks of bed rest as a last attempt. If things did not improve or if things got worse, surgery would be my option. For a mover such as myself, 2 weeks of bedrest was its own form of absolute personal hell.
Goodness gracious I have to wrap this post up soon.
Two weeks passed. My pain did not change and my bladder started to not fully empty. This is a bad sign. In medical terms this is considered a Red Flag. I was accepted on a surgeon’s emergency list and had a L5/S1 discectomy over the Canada Day Long weekend 2012. Hooray!! Before surgery, I, like all patients, was briefed on the procedure, risks and benefits. There was a 5% chance of a spontaneous recurrence. In that moment I did not care about anything other than feeling normal and balanced again.
Bleary eyed I woke up post surgery and there was no more pain! I was so emotional to have that burden lifted. The numbness took about 3 months to fully resolve because nerves heal slower than other tissues in our body. Eventually, I was back to normal, even better than I could remember. I conquered my Masters at UBC and life went on.
So there it is. The story of how my back got turned upside down… WAIT! Why am I currently in need of repair? If you care, Post 6 is where I will continue to share.
Keren, age 10. The photo on the left is her in her gait trainer (my old job). The photo on the right is her meeting the Dalai Lama. For more about her trip to China follow this URL:
http://www.facebook.com/Ariel.rak/posts/10156401024015337
Below is another URL for a video about the New York City Ballet (NYCB) and their involvement with neurologically affected children.
https://vimeo.com/nycballet/review/255086880/3b40ba0ec5
For more information on Cerebral Palsy, please go to: