Introduction to Chronic Conditions and Lifelong Adaptation

The journey of living with chronic diseases is a unique and often challenging one. Personally, I have been living with spastic cerebral palsy since birth. This neurological disorder has affected my lower limbs, leading to significant physical limitations and requiring a series of medical interventions over the years. My story is a testament to the resilience of the human spirit and the importance of adaptive strategies for managing chronic conditions.

Chronic Diseases and My Early Struggles

My journey with spastic cerebral palsy began at birth, and my condition was severe enough to prevent me from walking unassisted for many years. At one point, I relied on a walker for movement. Eventually, I underwent physical therapy and numerous surgeries to improve my quality of life. Ankle foot orthotics (AFOs), botulinum toxin (Botox), and later, intrathecal baclofen from a pain pump implanted in my abdomen became a part of my daily routine.

Complex Medical Interventions

From 2005 onwards, I faced a series of challenges. In 2005, the Botox treatment was no longer effective, leading to the implantation of a pain pump. The pain pump was replaced twice in subsequent years, each requiring a meticulous selection of a non-replaceable battery. Despite these efforts, my condition gradually worsened, making it difficult for me to walk unassisted for even short distances.

Assisting Devices and Adaptations

In 2014, my parents acquired a custom-made manual wheelchair for me - a Ti-Lite Aero-Z with a titanium frame painted neon green. This tailored wheelchair fit me perfectly, addressing the unique challenges I faced due to my low birth weight and body shape. In 2019, I transitioned to a second custom-made manual wheelchair, an Aero-Z with an aluminum frame, painted dark blue. This decision was driven by my parents' desire to provide me with the best possible mobility options. My parents also installed a SmartDrive power assist device to make uphill propulsion easier and reduce strain on my arm muscles.

Maneuvering Through Life with Cerebral Palsy

Importantly, I chose to maintain a manual wheelchair rather than an electric one due to the benefits of weight and the independent nature of manual chairs. My upper body is not affected by the cerebral palsy, making manual wheelchairs more practical for me. However, the decision was not made lightly, as I needed to weigh the pros and cons of each option.

Challenges and Solutions

Despite the improvements, I still faced difficulties. In 2017, I was diagnosed with scoliosis, a poorly understood condition that could have been a grave risk to my health. The diagnosis came 12 years after the initial implantation of the pain pump, highlighting the importance of long-term monitoring for potential side effects. In 2019, spinal fusion surgery with metal rods and a new backrest were performed to correct the curvature and alleviate back pain. The surgery was remarkably successful, and I did not require a blood transfusion post-operation.

Adaptive Strategies and Future Goals

The scoliosis has affected my mobility, limiting my ability to bend at the waist. To compensate, I now bend at the hips. Furthermore, the surgery has provided me with a renewed sense of independence, though the challenges of managing a chronic condition continue. I am currently considering seeking a service dog to help with mobility, but I am focused on understanding the implications of this decision thoroughly first.

Conclusion: Navigating Life with Chronic Diseases

Living with chronic conditions is a lifelong journey of adaptation, resilience, and continuous improvement. From managing an early diagnosis of cerebral palsy to facing more recent challenges with scoliosis, my experiences underscore the importance of innovative medical interventions, adaptive devices, and ongoing care. Each step of the way, support from my family and a growing understanding of my condition have been instrumental in helping me adapt and thrive. My story speaks to the importance of perseverance and the ongoing pursuit of a better quality of life for those living with chronic diseases.