Labrador City — Maureen Ayles was diagnosed with multiple sclerosis in 1995 but believes she’s been experiencing symptoms since childhood.
“I knew something was wrong, even as a child,” said Ayles, who lives in Labrador City.
“I never had heat tolerance and I always used to say I was allergic to the sun. Not only hot — you’re zapped right out — it’s like a fatigue. It drains you of every ounce of energy that you have.”
Now 49, at her lowest point she was losing the ability to walk and was in constant agony.
She said she reached her breaking point about 15 years ago, when she went home after attending a New Year’s Eve party and the right side of her face became completely paralyzed.
It started as an earache, then a toothache and a headache. The only relief she found was by putting warm plates against her face.
She didn’t sleep that night and in the morning the symptoms went away. Ayles was confounded.
After that, her family doctor referred her to a neurologist, and a CT scan and an MRI revealed she was suffering from primary progressive MS.
“When you’re diagnosed with primary progressive, you know it means you will eventually lose everything: bodily functions, mind or sight,” said Ayles.
“Most people with it end up in a hospital bed with a feeding tube down their throat. What I read on primary progressive is, within seven years I would be in a wheelchair, and that was pretty accurate.”
The diagnosis brought a strange sense of relief, though Ayles was frustrated that the MS had gone undiagnosed for such a long time.
Ayles figures her condition is hereditary because her mother also had low heat tolerance. She thinks she may have had a rare type of MS that didn’t affect her severely. Ayles watches now for signs of the disease in her son, daughter and grandchildren, but so far they’re all healthy.
For Ayles, day-to-day life became more and more challenging.
“I couldn’t put dishes up in the kitchen cupboard. I couldn’t even get on the phone; I’d have to have my elbow rested on something.
“I would constantly be putting words where they didn’t belong,” Ayles recalled.
“If you’d ask me, ‘Can I have that pen?’ I would answer, ‘Here’s your shoe.’ I started to slur. … It was embarrassing, and you’re almost afraid to open your mouth.
“My biggest fear was going blind — I don’t know why. I have a friend with MS who went blind. It’s like the worst thing that could happen to me.”
She credits her family with being supportive.
“I think that it bothered them more than it did me, because they were watching me deteriorate,” Ayles said.
“They know how active I was and how much it bothered me. My son used humour a lot — he’s a lot like my husband — and my daughter wanted to do everything to make my life easier.”
Recently, she became the first person from Labrador West to travel to Poland for the controversial Zamboni procedure — also known as the liberation treatment.
Dr. Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, believes MS may be caused by chronic cerebrospinal venous insufficiency, and he’s developed a procedure to counteract that. It has not yet been sanctioned in Canada.
According to the Multiple Sclerosis Society of Canada, it is thought that MS stems from the disruption of blood flow caused by the narrowing of small veins in the neck, chest and spine.
“I couldn’t put dishes up in the kitchen cupboard. I couldn’t even get on the phone; I’d have to have my elbow rested on something." - Maureen Ayles
The Zamboni procedure involves a small incision in the groin to insert a catheter into the blocked vein, which is then opened up with a small balloon.
It gave Ayles hope at a time when she felt she had little to lose.
She read about the procedure online a year ago and then saw Ginger McQueen interviewed on the news — she was one of the first Canadians to have the procedure.
That’s when Ayles decided she would, too.
Just before she went to Poland, her speech had become more slurred and she experienced brain fog, heat intolerance and difficulty walking.
“I used to really think about mercy killing,” Ayles admits.
The thought of heading to Poland for the procedure scared her.
“Thoughts were like, my God, am I going to die over there? … I just thought, what’s the worse that’s going to happen? … And it wasn’t the dying I was afraid of, it was the living.”
Feeling desperate and determined, she finally booked an appointment to have the procedure performed by Dr. Jacek Kostecki at his clinic in Tychy, Poland.
The trip cost her $12,000, some of which was paid through her daughter’s fundraising efforts. She was accompanied by her good friend Peggy Mugridge.
Ayles went into hospital on May 29. The procedure took 45 minutes.
The next morning, she got up and did the unexpected — she walked to the washroom without her cane.
She was overjoyed.
Later that day, she was released from the hospital and spent time with Mugridge, touring castles and shopping.
A week later, they boarded the flight for home. For the first time in years, Ayles was able to raise her arms above her head and adjust her pillow. It was another success.
Back in Labrador City, the miracles continued — she was finally able to take a shower without feeling drained of energy, and could wash and style her own hair.
She was able to put things up in the cupboard and walk from room to room without hanging on to things for balance.
Her heat tolerance had improved and the brain fog had disappeared.
When she went back to work, her colleagues said her complexion had improved.
“It gave me back my life and it took away my fear,” Ayles said of the procedure.
“It might be false security; no one knows. Only time will tell. But I don’t go to bed every night frightened to death or worried or tormented thinking, is this the night I’m going to go to sleep and wake up the next morning and not be able to see?”
For now, she feels on top of the world, and plans to do more travelling in the future, including a visit to her grandchildren in Alberta in the spring.
Maureen said she’ll continue to be outgoing as long as she’s physically able.
“It’s not a cure,” she said, “but it makes life a little bit more comfortable and it appears to have halted (the progression of MS). I know for me, it not only halted the disease, I went a little bit back in time, and my biggest regret is that they didn’t come out with (the treatment) sooner.”