WATCH: ‘It was like a death sentence.’ MND warriors speak out
All they knew at diagnosis was it was “the illness that Joost had”. Soon, two woman of Kempton Park’s lives drastically changed. One because her mother had it, and another because she has it.
Its causes are unknown and there is still no cure but a group of warriors hope to fight the disease that forever changed their lives.“It felt like a death sentence when I was first diagnosed,” Birchleigh resident Brenda Winterton (43) told Express.
She sounds tired, a side-effect of the medicine she’s receiving through a drip.
“No, now’s a perfect time to talk,” she insisted. She is a fighter.
This former Sandton businesswoman and mother of two was diagnosed with motor neurone disease (MND) a year ago. This life-shortening disease affects the nerve cells that control the movement of muscles.
“The news was difficult for my sons, who are 11 and 18. They were big fans of Joost van der Westhuizen (who died from MND six months prior to her diagnosis), so they knew what the illness did.”
Brenda’s health deteriorated immediately. She struggled to walk, talk, eat and swallow. She had to make use of a wheelchair and a feeding tube was put in her stomach for her to receive nutrients.
Her life also drastically changed when she was medically boarded from doing her job.
“The company I worked for saw my diagnoses as the end. Because of MND, they felt my career had to end and I had no say.”
But all hope is not lost. The medicine she receives regularly through a drip slows her specific disease; progressive bulbar palsy, an extension of MND.
“Since starting the medicine, my speech, ability to walk and breathing has improved,” she said, and although Brenda was only given between six months and three years to live, she is positive about the future.
“I know that more will be done in medicine to find a cure, and I encourage family and friends of people with MND not to treat us differently. We are still the same people, our bodies are just changing.”
Brenda attributes her positivity to faith.
“Without God, I would not be here,” she explained. “To people who are diagnosed with MND: don’t give up. Keep fighting.”
One person who fought MND for five years was Aston Manor resident Marsha Merrick. She died on April 22 last year. She was 70 years old.
Her daughter, Cindy Brits, met with Express to discuss amyotrophic lateral sclerosis (ALS), also an extension of MND, which caused her mother to suffer for five years.
“It felt like a death sentence when she was first diagnosed,” Cindy said. A silver pendant with a picture of her mother hangs around her neck, close to her heart.
She admits that all she knew about the illness at the time was that “Joost has it”. Between countless doctor appointments and research, Cindy and her family quickly familiarised themselves with the illness to give Marsha the best care possible.
“Soon, my mother couldn’t walk, talk, eat or do anything for herself. It was difficult to see because my mother was always a very proud woman.”
One of the worst events of Marsha’s illness was when she choked on food during her last Christmas Eve with her family. By then, MND had affected her speech so much that she couldn’t ask for help.
“By the time we noticed she was starting to turn blue,” Cindy remembered. “I thought my mom was going to die in front of my eyes, in front of my children’s eyes.” Luckily, her brother was able to remove the obstruction from their mother’s throat.
By the next Easter weekend, Marsha’s suffering would come to an end.
“There was nothing medical we could do anymore,” Cindy said, fighting back tears. “All we can do now is to create awareness.”
“If there was a telephone line to heaven I would like to say, ‘I’m sorry, Mommy. I’m sorry I didn’t spend more time with you’,” Cindy added, no longer fighting her tears.
Following her mother’s death, she became part of the J9 Warriors, supporters of the Joost van der Westhuizen Centre for Neurodegeneration, which hopes to improve care for patients and support local research efforts.
All the J9 Warriors, including Brenda and Cindy, are on a WhatsApp group, where they share news, advice and support. Readers who would like to form part of the group can contact Cindy at cindybrits@icloud.com. They can also like the Facebook page: mnd-Brenda’s journey to follow Brenda’s progress.
