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My Hemiplegia

by Jeanne Kennedy, D.C.

I was born with a condition called congenital hemiplesia.** It is considered a form of cerebral palsy. In the UK it affects about one in every 1000 births! That is pretty common, and I only just recently learned this. For some reason, it never occurred to me to research my own condition, I just thought that it was an unfortunate thing that happened to me. But maybe it wasn’t so unfortunate, because it helped me want to learn, and made me have to work a little harder.

I always knew I wasn’t the best floor model of a human body. Why won’t my right leg do what my left leg can do? I have a weak right hip that has been significantly weaker than normal my whole life. I can move my hip in flexion at a limited range, and that diminishes quickly in seconds or with repeating. In certain positions I can’t lift my leg at all. The muscles fire, they just don’t work to lift my right leg against gravity effectively.

There is also a significant sensory deficit, I am not as sensitive to pressure on parts of my right leg, and I have almost no temperature sensation down the front of my right leg in the L2-L3-L4 dermatomes. I had to learn to be protective of my right side, when I was young I seriously injured myself from being unaware that I was being hurt, specifically burned, cut, and I had a case of infective arthritis (staph,) from having no pain sensation in my right leg.

My family tells me that when I was born, my right side was paralyzed. It didn’t move. My right arm and right leg were affected. My doctors told my parents that I was going to need mobility devices and a brace on my body for my life. Wow. My parents and my three brothers all took care of me and did exercises for my leg, and also my mom took me swimming. My arm weakness resolved, and my leg got better too, although it was always noticeably weaker, and my family so thoughtfully referred to it as my lazy leg. Ugh. There was also some teasing I had to endure about my posture, which I will not elaborate on.

I’m sure this experience somehow helped develop my character and empathy, although I learned from this website and also some articles in the medical journal Neurology and the National Institute of Health that this condition also comes with certain emotional and cognitive challenges. It’s a brain injury. 20% of us have epilepsy, depression, learning challenges, etc. There’s physical fatigue from altered movement patterns and accommodations that lead to chronic pain and tension. It’s frustrating for a kid to notice a physical difference from their peers. It’s recommended that these people are more suited for ‘desk jobs,’ and not a physical profession.

I have tried my whole life to be physically challenged and active. I participated in all my assigned gym classes, but I did get a bit of grief for not trying hard enough. I don’t believe my parents informed my school or my teachers about my condition.

But… this makes a lot of aspects of my physical experience and personal development fall into place. I’ve always had balance issues, all kinds of knee problems when I was younger, maybe from falling, and sore, tight hips and legs.

I played basketball for St. Mary’s and I was a starter! This was 7th and 8th grade. I had a good shot and I liked being a tough, smart girl. But learning the plays was so hard for me. We had to do a lot of running and jumping at team practice and I would get very weak and winded, and felt like I’d never be a real athlete. I played softball too. I loved skating as a kid, and it still feels really good for me to ice skate. I’ve done backpacking trips in the wilderness, and I have spent extended periods without a vehicle, walking a lot in my life. I have used bicycles as transportation, sometimes with big hills involved. I always had to get off and push the bike up long or steep hills, I had no endurance to stay on and pedal it all the way up.

I would say I have rhythm (maybe just from listening to and analyzing so much music) but I am still not a good dancer. Very awkward in couples situations where I have to ‘match’ or ‘follow.’ I much prefer exercising alone than in any kind of group. I love playing music but it’s challenging because reading charts is hard for me and puts me to sleep a little bit, but it makes my brain and my spirit feel really good, too.

I was drawn to chiropractic school because I knew I could have a lot of body work, and my right hip always hurt from being on my feet. Becoming a chiropractor has made a lot of great opportunities for transformation, and my right hip function has definitely improved, although there is still a notable weakness, and diminished function. I work on it regularly, trying new approaches to improve function, circulation (lymphatic – this limb does tend to get boggy) and gait quality. The right hip never hurts anymore. I do chronically have very tight muscles in parts of my low back, hips, and legs. My paraspinal muscles in my low back (the vertical line of muscles running up the left and right sides of the spine) are overdeveloped, hypertrophied.

I have been worked on by very skilled chiropractic doctors and other therapists (all as an adult professional – I didn’t have any formal therapy as a child or adolescent.) I’m so thankful for this. This is a privilege that I think many with my condition can’t access, although I think things are improved now since the 1960s for patients.

**Addendum: I revisited some medical documents saved for me by my mother. They’re pretty great, in a retro kind of way, but they do leave a lot of questions I have unanswered. The second neurologist, Dr. Mashman, concludes in his report that he doesn’t think I have Congenital Hemiplesia, he thinks I suffered a lumbosacral plexus injury during birth. This also makes sense, because I was a large baby born to a small mom (9lbs 6oz.) But it leaves questions also, because there are no articles found when I Google ‘lumbosacral plexus injury in newborns’ and other variations. The only results that come up in the search for the first 3 pages are only referencing mothers’ low back injuries from pushing post-partum.