|Diagnosis: ADEM (Acute Disseminated Encephalomyelitis)|
Age at onset: 16
Megan was a typical active teenager, who woke up out of a deep sleep in August 2012, to find that she was unable to move her body. This traumatizing nightmare instantly became her reality as she came to the realization that she was paralyzed.
She had Acute Disseminated Encephalomyelitis (ADEM) an incredibly rare neurological disorder typically brought on from a viral or bacterial infection. ADEM involves an intense attack of inflammation in the brain and spinal cord, ultimately damaging the myelin sheath that covers many nerve fibers, potentially causing paralysis.
When Megan emerged from this process, the doctors informed her that she was lucky to be alive, and that her prognosis was for a full recovery due to her healthy background and young age. However they also warned her that the road to recovery would be long, tough, and at times unbearable.
After spending almost 3 weeks at Johns Hopkins Hospital Megan went into rehabilitation as an inpatient at Kennedy Krieger, for a further 3 months before she was able to move back to her home. It would be another two months before she was able to take her first step, and about nine months from the onset of the ADEM before Megan was able to walk with a walker. Megan progressed to walking without anything 3 months later, and was also able to go up and down stairs with assistance and shower on her own, things that had been seen as impossible earlier.
Megan has still not fully recovered from the ADEM, and has had her setbacks that tightened her muscles and reversed her progress. She is still walking with a walker for short distances and uses a wheelchair for longer distances.
She continues to attend rehabilitation at KKI as she works towards a full recovery. Her therapy regime includes, massage therapy, botox injections, workout sessions, pool therapy, acupuncture. At home she uses her RT300 for movement stimulation and strength building.
Megan was introduced to RT300 early in her rehabilitation. RT300 is an FES bike that combines power assisted cycling with FES (functional electrical stimulation). This was introduced as part of the activity based therapy program at KKI.
I believe that the time Megan spends on the RT300 is contributing to the strength of her leg muscles and aiding in her recovery, which is why it was so important for her to have one at home. At KKI Megan would use the RT300 for up to an hour for up to five days a week. At home she strives to use it for an hour at least three times a week to maintain the momentum of her recovery. As the doctors told Megan at Johns Hopkins the road to full recovery would be long, tough, and at times unbearable, but she is determined to make it all the way. The RT300 is important to her recovery progress.
I am proud of the way Megan is rebuilding her life and the strides she is taking. Her determination and courage lead her to be invited to walk in the New York Fashion Week wearing one of Nina Perdomo”s designs. When I think back to that fateful night in August 2012, I am amazed at how far Megan has come!
Mother of Megan