Being Thrown A Life Raft

Growing up, everyone told me that cerebral palsy was not progressive. I, in turn, believed that how my body moves and feels was going to stay the same my entire life. Cerebral palsy is not progressive, but my body sure feels different than what it did even ten years ago. Sure, I’m aging, but is something else at play?

After learning this spring that I have degenerative disc disease from a specialist who was fairly unfamiliar with CP, I began to wonder if there was anyone out there who could offer an explanation for my consistent back pain and its relationship to my disability.

I started looking online, and found an interesting phenomenon called Post-Impairment Syndrome. As I understand it, my body is being worn down because of the unique way it has been moving for almost 30 years. Chronic pain, increased fatigue, and depression are all normal experiences for young adults with CP. This is good news…I’m normal, I’m not crazy; and bad news….this is the reality of my life and somehow I’m going to have to deal with it.

Physical therapy has been helpful, but I found myself struggling, especially with the physical demands of my job, until I was thrown a life-raft.

This summer I volunteered at a camp for people with disabilities and met a physician who had cerebral palsy and told me that he works at Gillette Lifetime—A clinic for adults with CP. I had no idea the clinic existed and I eagerly made an appointment.

This fall I met with a team of specialists and discussed my life as an adult in detail. They were compassionate and comprehensive, attending to my physical needs in every arena of life. A physical therapist help me pair down the overwhelming amount of stretching that I had been given to do and offered ideas for incorporating stretching into my everyday routine. I was given a referral in case my back pain reoccurred and needed to see a specialist who was familiar with CP.

I talked with an occupational therapist about the fact that I often can’t find my car in the parking lot, get lost on walks in familiar places, and can’t seem to retain what side of an envelope a stamp goes on.

I worked with a physician and an assistive-technology practitioner to be fitted for custom-made shoe inserts and an ankle-foot orthotic. Finally, I was given a prescription for an ergonomic assessment to be completed at work and the opportunity to follow up with a physician at Gillette Lifetime again this summer.

The appointment was draining! It was hard to discuss the details of my disability for hours in a professional manner with strangers. But the care I received was outstanding and if I have to deal with the new twists and turns of living with CP as a young adult, I now know I have outstanding support. I have a life-raft.