Mother, Daughter Face MS Diagnoses
Suzanne Robertson and daughter, Janie, both went to Highland Park High School, both graduated from TCU, and both were diagnosed as young adults with Multiple Sclerosis (MS).
(ABOVE: FROM LEFT: Janie Robertson and her mother, Suzanne, can laugh now about their shared symptoms. Photo: Marissa Alvarado)
Both also receive substantial support from the men in their family – a family chosen to receive this year’s Dee Wynne Courage Award from the Yellow Rose Gala Foundation for MS Research.
The foundation has raised millions of dollars for the research of MS, an unpredictable disease of the central nervous system that disrupts the flow of information within the brain and between the body.
Suzanne was diagnosed in 1981 at age 22 during what she calls “dark ages of MS” because neither she nor her doctors knew much about it. Janie was diagnosed this past year at age 32.
“I had [drop] foot, my lip was drooping, my right side was pretty much worthless,” Suzanne said. She spent two weeks in the hospital.
The doctors advised against having children, but Suzanne had two, John Malcolm III, aka Bud, and Janie.
Last year, Janie awoke in the middle of the night extremely dizzy and unable to walk. Bud carried her to the car to go to the hospital where she stayed for five days, receiving two MRIs, a CT scan, and a spinal tap. The familiar diagnosis would follow.
“I already had a game plan because I’ve seen a multiple sclerosis patient my whole life,” Janie said.
Her boyfriend, Dakotah Richardson, visited her in the hospital similarly to how Suzanne’s husband, Malcolm, had in 1981.
“I already had a game plan because I’ve seen a multiple sclerosis patient my whole life.” – Jamie Robertson
“Mom told me how she knew my dad was the one,” Janie said. “He was with her every day that she was in the hospital as was my boyfriend when I was in the hospital.”
Janie met Dakotah while volunteering for the gala when he brought a donated shotgun from the store where he works.
“I thought he was going to be a crotchety old man selling a gun when he came up to the event,” Janie said. “Two days later he asked me out on our first date.”
Suzanne and Janie explained that “no MS patient is alike,” but the toughest part is the fatigue.
“I stay caffeinated most of the day,” Suzanne said. “That helps a bit, but I don’t do anything after about 3 p.m. because sleep is too important.”
Another obstacle Janie has had to overcome is discrimination in the job market.
“I utter the words, ‘I have multiple sclerosis,’ and they look at me like I have the plague,” Janie said.
“It’s disheartening because I want to be normal, I want to work again, and I still have plenty to offer.”
Another thing mother and daughter have in common: a positive spirit.
“We laugh about more stuff now,” Janie said, listing symptoms and other things that only they can relate to.
“You’d cry if you didn’t laugh,” Suzanne said.
Looking to the future, Janie said, “I would love to see a cure found. I definitely see that happening in my lifetime.”
They may both have Lyme. I have had “MS” for 32 years and now my daughter is undergoing tests for a demyelinating disease. We will look for a good Lyme doctor since most neurologist don’t recognize LD. It can be passed from mother to the fetus. Check out “Bullseye – Low Dose Naltrexone and Lyme Disease”. LDN stopped my exacerbations ten years ago… just wish I had found it earlier.