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How I Cope With Chronic Pain and Aging With Cerebral Palsy

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I am 49 years old and have lived with spastic diplegic cerebral palsy since birth. As a child, I remember the surgeries, casts, intensive physiotherapy and other interventions to make sure I “achieved my highest potential.” It was hard, but it was something to strive for and it sounded so good and so right at the time.

Then I turned 18 and the bottom fell out of my world. All of the access I had to supportive treatments was gone and I was told to “go live my life!” So, I did – full of hope and a long-time dream of becoming a nurse, until chronic pain set in to both knees at age 22 and my dream of being a nurse lay shattered in a million pieces at my feet.

I had a hard time adjusting to this “new normal” as doctors told me I would “just have to learn to live with the pain.” Then at 29, diagnosed with osteoarthritis in those same knees, I began to walk with a cane for the first time. My pride took a hit and adjusting to this “new normal” was also a struggle, but four years later when my standing balance suddenly deteriorated severely, I began using a  wheeled walker. First outside only, and then all the time over a very short span of time. It was a struggle again to adjust, but a bit easier this time. Then came the manual wheelchair at age 35 (only for bad days and long distances) but it felt like another blow to my dwindling pride. Fatigue was now my constant companion and I struggled to go to work each day. I pushed myself hard, ignoring the fatigue and the fact I was running on empty most of the time. I was determined to keep working!

Fast forward to today: I have been off of work on disability benefits now for 5 years. The osteoarthritis has spread to my hips, back, neck and hands. My spasticity has increased dramatically and I now live at a constant 8-9/10 pain level 24/7, 365 days per year. I have just acquired a power wheelchair for use outside so I can leave my home independently to get fresh air, go for coffee etc. I continue to adjust again and again to my “new normal.” The doctors tell me CP is not “progressive” because the initial brain damage or lesion does not get worse. So, it’s not going to kill me… OK, but what the heck is happening to me?

I have done some research and discovered a term: “post-impairment syndrome” that is being used to describe the secondary complications adults with CP develop as they age. More research must be done and I am advocating for that in as many ways as possible.

I pray the generations behind me can learn from my experiences and do things to minimize the effects as they age. I pray for better supports and an acknowledgement of our suffering with concrete actions, treatments and positive outcomes for the young ones entering adulthood as well as for us older pioneers. I pray for hope to fan into flame, for right now it is but a flickering ember.

Until then, I embrace each day with my own personal motto: Onwards… regardless!

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Originally published: June 7, 2017
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