Personal Stories

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.
posted on July 1, 2013 - 9:01am
Quest Vol. 20, No. 3
IBM patient survey

In the 1970s, Elyse Bruce saw her teenage brother deal with MG — but in the 2000s, she struggled to find a diagnosis for her young son’s mysterious symptoms

posted on June 25, 2013 - 11:42am
I was a pre-teen in the 1970s when my older brother began having problems. My parents thought he was just hitting those teen years when rebellion is the word of the day. He went from being an excellent clarinetist to a mediocre one, and the more he practiced, the worse he sounded. He would get up from the supper table and fall into the wall; my parents asked him straight out if he was on drugs.

Carmelita Pallares, 31, of Albuquerque, New Mexico, finds ways to conserve precious energy so she can care for her toddler daughter

posted on June 25, 2013 - 11:37am
My name is Carmelita Pallares. I am Native American; I am a member of both the Navajo Nation and Santo Domingo Pueblo tribe. I am 31 years old. I was diagnosed seven years ago with myasthenia gravis, only three months after having emergency surgery and undergoing a temporary colostomy following an accident. My neurologist believed that the trauma my body suffered from this accident and the stress...

Rachel Pegram, 38, of Charlotte, N.C., shares her experiences and advice after 25 years of living with MG

posted on June 25, 2013 - 11:28am
I never expected that my life would change at 13. It was at age 13 that I got a bad case of chicken pox. Shortly thereafter, my arms and legs started not working right. I couldn’t climb the school bus stairs or lift my arms to brush my hair. In 1988, after a bad tumble down the school stairs because my legs gave out on me, my parents took me to see a neurologist.

Three individuals share their experiences with the ups and downs of myasthenia gravis

posted on June 25, 2013 - 11:00am
Autoimmune myasthenia gravis is an unpredictable disease. On the one hand, it is a condition that can be effectively managed with medication and surgical interventions. On the other hand, even with treatment, symptoms may come and go, and treatments that once worked unaccountably may stop working.  To gain a personal perspective on life with MG, read:

On being treated as a person first during hospitalizations

posted on April 1, 2013 - 9:19am
Quest Vol. 20, No. 2
MJ Purk Individuals with neuromuscular disorders oftentimes spend a great deal of time in the hospital and even more time interacting with those who work in the medical profession. In their interactions with medical personnel, some individuals are lucky enough to experience more than the expected amount of caring.
posted on April 1, 2013 - 9:05am
Quest Vol. 20, No. 2
Rock 'n' roll