MEXICO CITY – A Mexican woman says her mother’s life took a dramatic turn for the worse when she contracted amyotrophic lateral sclerosis (ALS), a disease that left her unable to continue working at a grocery store and do activities she once enjoyed like taking walks and going to Zumba classes.
“She was independent and took care of herself,” Gabriela Camarena Martinez told EFE, saying she is serving as full-time caregiver for her mother, Maria Dolores Martinez, and also must speak on her behalf.
In an interview coinciding with World ALS Day (June 21), Camarena told EFE that that debilitating illness – also known as motor neuronal disease and Lou Gehrig’s disease because it ended the career and claimed the life of that famed New York Yankees slugger of the 1920s and 1930s – has had a profound impact on her own life and that of a half-million people worldwide.
ALS is an incurable disease that destroys the neurons that control voluntary muscles and eventually causes complete paralysis. The life expectancy of most people afflicted by the disease is just three years, although it is more than five years in 20 percent of cases and more than 10 years in 10 percent of cases.
While Gehrig survived just two years after the disease began markedly affecting his play and forced him to retire from baseball, renowned British theoretical physicist Stephen Hawking, who brought global attention to the illness, has lived with ALS for 54 years after being diagnosed at the age of 21.
ALS’ average annual global incidence rate is around 1.6 cases per 100,000 inhabitants, though in Spain and the United States that rate is between 3-4 per 100,000, according to ELS associations in those countries.
In Mexico, the disease affects between 1-2 people per 100,000 annually.
“My mom began feeling one of her arms falling asleep. She felt it tingling. She went to different doctors, and they said she needed a vitamin B complex. A year then went by until I started doing some Web research and (at the hospital) they confirmed the diagnosis: ELS,” Camarena recalled.
She said her own life had also changed drastically because she was forced to quit working, move to a different home and devote herself fully to her mother’s care.
“It’s tough as a family member. I also have a 13-year-old son with diabetes, so my life has changed a lot. Taking care of her is sometimes difficult because it’s a disease that also affects her mood. They get angry because sometimes they can’t express themselves. They get frustrated and become rude,” Camarena said.
She added that she now has to bathe and feed her mother, who is now almost completely immobile and sits in a wheelchair at all times.
Camarena said the indifference of health authorities also made the situation even more difficult.
“When we went to the Social Security (hospital), they diagnosed her but didn’t know much about the illness,” she said, adding that people at a Mexican association of family and friends of motor neuronal disease patients provided them with assistance.