Hitting the CANVAS Very rare disorder has Cambridge senior down but not out

By  | December 8, 2014 | 0 Comments | Filed under: Golden Years

IMG_3380.2 (1280x913) (1)A lot can change in a year. With another one ringing in the near distance, many of us take stock of the things we would change if given that chance.
What if the moment of possible change could not be pinpointed with any clarity, so that even if we could see into the future, the unexpected would still have tripped us up, and in a blink, left us falling through life without a parachute.
This time last year, Linda Achilles was bustling in the kitchen of her home near Fergus, preparing for one of the many bid-euchre games she organized, complete with brightly wrapped prizes and home-baked treats. At the age of 67, she was always on the go.
“You could sum my mom up in one word: active,” says Linda’s daughter, Reverend Morgan Craig of Cambridge.
The superficial scars from Linda’s fall the previous October had healed. It had been a simple accident. Living in a modular home where everything was compact, it was easy to tangle her foot on the leg of a chair. When her head slammed onto the counter, she opened a gash that required 17 staples. No one knows if this was the trigger for the incurable syndrome that was about to manifest.
Linda had waited to drive to the hospital until the day after the accident. A scan was never ordered, and as her daughter had predicted, the x-rays taken were useless.
Symptoms of something serious began with Linda’s vision – blurry, and her depth perception was failing; then, her balance swayed. By Christmas 2013, she seemed ill, but it was Linda’s slurred speech that gave Morgan a scare. They headed to Grand River Hospital to check for signs of a stroke. Nothing showed on the tests.
By January 2014, Linda was still undiagnosed and admitted to Freeport Hospital; each of her symptoms worsening by the day. A neurologist at McMaster was consulted. Linda was finally told she had a rare disease called CANVAS. Few people, possibly less than 20 in the world, have this disorder and not much is known. Morgan has heard that three have recently died.
The neurologist would not prescribe treatment until he had researched the disease. Linda is scheduled to see him in January 2015, a full year after diagnosis.
Only one question has been answered – there is no cure.
“I’ve lost everything,” Linda says. Her words are garbled, but her distress is perfectly clear as tears of frustration fill her eyes.
CANVAS is the acronym for Cerebellar Ataxia, Neuropathy, Vestibular Areflexia Syndrome. The disease is characterized as loss of sensory perception and speech as well as loss of balance and coordination. Linda has had multiple mini-strokes caused by the disorder adding to her functional inabilities.
She is confined to a wheelchair, needs round-the-clock care, and her speech must be translated by Morgan. She will soon lose her home and her car. She tells me that she loved to drive.
She also says that she has lost hope.
We’re sitting in the visitors lounge at peopleCare Hilltop Manor, a long term care home in Cambridge. Linda hasn’t seen her own home since that fateful Christmas one year ago.
“We have to get the research going,” says Morgan. “This is torture.”
Tests show no cognitive delay, however the disease and multiple mini strokes have chipped away at Linda’s outgoing personality.
Morgan reminisces about her mother, and an effervescent personality surfaces. Linda has her undergraduate degree and worked in the University of Toronto’s Registrar’s Office before leaving (CANVAS Cont.)
to have her two children.
She loved tramping over rocks while camping and creating gourmet meals over an open fire to astound her kids. She managed the office for her husband, Jerry, before his passing in 2005, and it wasn’t long ago that she wouldn’t leave the house without her hair perfectly coiffed.
“She should have had shares in hairspray.” Morgan smiles at her mom who refused to have her hair or makeup done for today’s interview. “She was an amazing mom. Everything I could have asked for.”
The pair are trying to be patient, but the barriers are steep while they wait for treatment. Both agree that research is the answer, but realize that it is not a priority with so few cases.
“It’s frustrating,” Morgan admits. “One person with this syndrome is too many.”
Linda and Morgan have a Christmas list which includes support for Linda’s physical disabilities and the inevitable depression that has set in. Their greatest gift would be the knowledge that someone cares; and that will lead to a better quality of life.
Linda says she’s given up hope, but this interview proves that somewhere deep inside, she has a few more games of bid-euchre left to organize.
“I try to be positive. Giving up is not part of the game plan,” says Morgan. “My mom taught me that.”

About 

Shelley Byers has worked in the charitable sector for over 25 years promoting her passion through newsletters, local newspapers and various publications throughout the region. In 2007, she wrote and told stories on behalf of Pride Stables and won the United Way Speakers Award. Currently, she is working on a graphic children’s story with a local artist and hopes to one day give a copy to her mother.

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