A North Kentville family is hopeful an experimental treatment for multiple sclerosis (MS) will improve the quality of life for their loved one.
Marilyn Misner, diagnosed with MS in 1993, says the most challenging aspect of living with the disease is not having the use of her legs. She needs help to make the simplest moves, most people would take for granted.
“I have to be transferred from my chair to the wheelchair.”
Medication she has taken for 11 years has, over time, stopped working. Another drug has severe side effects.
Marilyn’s son, Mitchell Misner, and her daughter-in-law, Vanessa Nickerson; have been researching the experimental Liberation Treatment, similar to angioplasty for heart patients only it involves the ballooning of veins in the neck to allow proper blood flow to and from the head to resume.
The federal government won’t pay for it, and the MS Society of Canada has yet to back it.
Marilyn’s husband, George Misner, says the family knows of several people who have had the treatment and bounced right back: there are people once in wheelchairs now walking.
“They claim there’s too much iron in the blood and it doesn’t drain like it should,” he says.
A scan would determine if there are blockages in Marilyn’s neck. If so, she would be a candidate for Liberation Treatment. The family is waiting to hear from a New York clinic about what is, essentially, a day surgery, taking about an hour-and-a-half; hoping for an appointment in November or December.
Marilyn doesn’t want to get her hopes up, but George says, “We’re hoping to take the wheelchair and throw it away.”
Mitchell says, if his mother can just regain enough mobility to move to and from her chair to her wheelchair or get in the car, “it will all be worth it.”
The family is trying to raise enough money to send Marilyn for the treatment. Including the cost of the procedure, travel and accommodation, it could cost them about $15,000.
They have already held a fundraising yard sale and another event is planned for the Meadowview Community Hall on Brooklyn Street August 8 at 1 p.m. There will be a ticket auction, basket raffle, bake sale, 50/50 draws and donations will be taken at the door. A variety show is planned for the Kentville Legion, August 15 from 4:30 to 8:30 p.m.
The family has been in contact with Yvonne Andersen of Grafton, who travelled earlier this month for the procedure. Mitchell says Andersen has been a great source of information, and she has agreed to pass along any donated money left from her treatment to help Marilyn.
George wants to thank everyone in advance for their support and points out the family will gladly transfer any money left after Marilyn’s treatment to another in need of the procedure.
In addition to raising funds, the family also hopes to raise awareness of Liberation Treatment - and perhaps political pressure so elected officials will see the necessity to fund it. The Misners are frustrated; Nickerson says the treatment is, essentially, the same technology used to help heart patients. The government was willing to pay $2,000 a month for 11 years for Marilyn’s medication.
“There’s a pretty big chance for something that isn’t an accepted procedure,” Nickerson says about the results many recipients experience.
“It just doesn’t seem fair.”
George says, even though the treatment isn’t proven, anyone who has had it has shown some sort of improvement.
“It could be so simple,” he says. “It could be done right here.”
The Misners has created a Facebook group, “Lets help Marilyn Misner treat her MS.” - and can also be reached at (902) 678-7717.
kstarratt@kentvilleadvertiser.ca
