A Red Deer woman has been one of the latest multiple sclerosis patients to benefit from a new treatment, known as the “Liberation Procedure,” that has been welcomed by many MS patients and medical staff, but also scorned by many doctors.
Phyllis Johnson, 55, was diagnosed with multiple sclerosis in 1997. She was a nurse working at the penitentiary in Drumheller, where her husband Neil Johnson was a guard, when she started to notice a numbness in her tongue. Her doctor sent her to a neurologist and they told her she had MS.
Multiple sclerosis is the most common neurological disease affecting young adults in Canada and it can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.
Phyllis had a fast-acting form of the disease and it wasn’t long after being diagnosed that she was in a wheelchair. She had to give up her career as a nurse, training she had worked hard to get as an adult at Red Deer College. Neil took early retirement to be able to look after he wife and they moved to Red Deer 13 years ago to be closer to a hospital with many neurologists and to have access to an Multiple Sclerosis Society of Canada office, where they could have a connection with the disease.
Phyllis and Neil headed out on July 5 for the Liberation Procedure, staying until July 22 after Neil came down with food poisoning. They flew to Germany and then flew to Bangalore, India, booking the trip and the treatment through Surgical Tourism Canada. Before heading out they spoke to many other MS sufferers who had undergone the procedure.
The Liberation Procedure took place on July 9, on her husband’s birthday. Phyllis calls it her “lucky day.” Two stents were put into veins in her neck to increase the flow of blood.
Before the operation Phyllis was constantly in pain, with Neil often putting hot compresses on her in the middle of the night as she cried out in agony. She couldn’t move her right arm or her head, even speaking was becoming a challenge and her memory was going.
But now just a couple of months after the surgery, although Phyllis is still in a wheelchair she has seen a world of difference in her comfort levels. She is dropping the amount of morphine she needs to use and thinks very shortly she may not have to use it at all. She can move her right arm and her head from side to side.
Phyllis can carry on a good conversation easily and her memory is fine again.
“The biggest thing for me is the pain is gone,” Neil said. Before the operation his wife of 35 years was as pale as a sheet of loose leaf paper, but he has seen the colour go back into her cheeks.
She has been going to physiotherapy at the Red Deer Regional Hospital Centre, working with Karen and Jeff and occupational therapist Hillary — all of which she credits and thanks for helping her further with her recovery.
The procedure, with travel and lodgings cost the couple close to $30,000, but Neil said it was worth it just to see his wife no longer having to suffer through the pain.
Neil and Phyllis would both like to see the Canadian medical community and the Canadian government start looking into and funding the procedure and can’t understand why they haven’t moved forward with it.
Neil said if 100 MS patients go to India for treatment and 99 of them experience a reduction in their symptoms why wouldn’t the government look at funding research into the procedure.
“I urge the government to look into this,” he said.
Phyllis said she would like the government to do more, with Canada having one of the highest rates of MS in the world. “They’re doing nothing. They’re doing absolutely nothing for us,” Phyllis said.