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Fight rare neuro-immune disorders. Together.
My name is Anibal Molina Lugo and the following describes my journey from confronting paralysis to where I find myself presently.
At the age of 23, I started to have a pinching pain at the base of my head and neck. It began to worsen, until one night about four days hence, my back began to violently spasm from the level of my neck to mid-chest. During this time, I was living with my parents. They subsequently transported me to a tertiary medical center, satellite hospital. Slowly, while being observed and interviewed by emergency medicine staff, I lost sensation and motor control of my legs. The most frightening moment was when I could no longer empty my bladder. It felt very full, but no matter how much I tried I could not begin to urinate.
As I continued to decompensate neurologically, attending staff decided to transport me to the main medical facility associated with the hospital. Initially, a preliminary diagnosis based on symptoms and neurologic exam seemed consistent with transverse myelitis. Upon subsequent work-up the diagnosis changed to that of ADEM (acute disseminated encephalomyelitis). This auto-immune disorder caused my immune system to aggressively target my nervous system, resulting in the profound deficits described above.
I spent a number of months bound to a hospital bed with extreme back pain, along with profound weakness and sensory loss in both my legs. Furthermore, I had to catheterize myself on a daily basis to empty my bladder approximately every three hours and begin to use a wheelchair.
After treatment with steroids and two treatments with intravenous immunoglobulins, it appeared as though the auto-immune attack had subsided.
Soon after, I began aggressive physical therapy. Slowly, with much effort I regained motor function of my legs and the ability to walk. However, I never regained full improvement and I continue to have a moderate degree of nerve pain and difficulties with bowel and bladder function.
While convalescing, I decided to make a career change from pursuing a doctorate degree in chemical engineering to becoming a neurologist.
The most challenging part of dealing with ADEM is the sense of loss. The mourning period never ends completely. However, one must find the courage to continue finding meaning in life. Obviously, the reality of readjustment to new physical limitations and/or changes requires time.
I hope to continue to pursue my passion within the healthcare profession to help others and to educate others about the realities of disability.
Anibal Molina Lugo, MD
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