The MS International Federation makes the Evelyn Nicholson Award to recognise people who are, or who have been, caregivers to people with MS and who have shown outstanding commitment and devotion in support of a loved one.
Throughout 40 years of marriage Amalia María Villareal de Sepúlveda cared for her husband, Ernesto Sepúlveda Morales, who had MS. He died in March 2014, aged 76, six months before their golden wedding anniversary.
Amalia and Ernesto got married quite young without imagining that he would be diagnosed with MS within seven years. By then, they had four children and another would be on the way soon. After the diagnosis, Ernesto was able to walk with the help of a cane, and continued to work for almost five years. Thereafter, he was pensioned for permanent disability.
As a caregiver of a MS patient, Amalia’s case is extraordinary because her husband suffered from a debilitating rare symptom associated with MS, an excruciating facial pain known as trigeminal neuralgia (TN). The diagnosis of TN set off the beginning of a lifelong battle against neuropathic pain, which required Ernesto to take pain medication day and night for the rest of his life.
After Ernesto stopped working, his motor capabilities, vision, and digestive functions got worse. Eventually, he could not pass solid food because of the pain, and lost weight. In his mid-forties, he was confined to his bed, unable to eat, shower, and shave. He felt into depression. He had to have a gastrostomy. But Amalia provided him with all the care he needed, from being fed through a gastric tube to emptying his urine bottles to cleaning him up. She never stopped sleeping with her husband in the same bed despite his condition.
After many years in bed, an impressive recovery gradually took place. Ernesto started to experience longer periods of low facial pain, which enabled him to eat by himself and regain strength. The depression lifted. With the help of a walking frame and a wheelchair, Amalia gradually reintroduced her husband to social life.
The rest of Ernesto’s illness was characterised by up and downs: long pleasant periods of stability with a few acute relapses. But the last years were particularly difficult as his physical skills were severely diminished. He became blind, wore diapers and used a urinary catheter. In the very end, he was unable to swallow. His life gradually went out in peace, like an exhausted candle.
Amalia was an inspiring caregiver not only to her husband but also to many others in her community and in the Asociación Regiomontana de Esclerosis Múltiple – part of EMMEX, the national MS society in Mexico.
Although still mourning Ernesto’s death, Amalia was overjoyed to hear the news about the award. Her son Roxana said: ‘She did not expect to win, and already considered her nomination her award. She was quite emotional and shed some tears, remembering all the years she spent with Ernesto.
‘But she was very satisfied with winning, because their long battle against MS would be known by many people in different countries. She recalled that once Ernesto wrote to her: “I have this illness, but we both suffer from it.”’
Amalia generously donated her prize money to the Asociación Regiomontana de Esclerosis Múltiple, which is currently raising funds to support the building of an Assistance and Rehabilitation Centre for People with Multiple Sclerosis in Monterrey, N.L. Mexico.
The other nominations for this year’s award were:
- Len Burleigh from Canada
- Marie-Elaine Dixon from the UK
- Brenda Fisher from Australia
- Antoni Kladko from Poland
- Ambrosio Vellasco Gallo from Spain
- Anna Sorel from Belgium
- Trond Sundhaugen from Norway
To be nominated for the award is an honour in itself and the MS International Federation would like to acknowledge the achievements of all the nominees.