“I had MS in mind because I have an aunt with that, but this wasn’t even on the radar,” she said. “When Dr. (Ian) Grant told us, the shock was immense.”
ALS – amyotrophic lateral sclerosis, also known as motor neurone disease and Lou Gehrig’s disease – causes nerve cells that control muscles to degenerate. There is a progressive loss of ability to move, talk, swallow and breathe. There’s no cure, nor is there effective treatment.
ALS is usually diagnosed by ruling out other diseases.
“I had a lot of tests,” said Terri. “There’s no marker for it so they eliminated everything else.”
It took about a year before she was diagnosed on March 8.”
The next day she phoned the ALS Society and spoke with someone for about an hour. And there were long talks with her husband, Bruce.
“I’m a very emotional person and I did cry a lot but it was a release to cry,” she said. “I felt it was releasing toxins from my body and when you embrace your emotions it gives you strength. But we went through a lot of Kleenex.”
Terri and Bruce have faced various stages of grief since she was diagnosed. They’ve found it helpful to talk with a psychologist.
“With most diseases there’s hope but with ALS there’s only one outcome,” said Bruce. “It’s 100 per cent fatal.”
They were grateful to learn this form of ALS is “sporadic” and not hereditary. She doesn’t have to worry it will be passed down to her sons.
Terri has made adjustments. She uses her left hand more and orders food that requires little cutting when dining out. She still cooks; it just takes a bit longer. She still walks, but doesn’t venture as far. Bruce helps, taking on extra tasks.
“A big loss will be not being able to drive,” said Terri. “It will be a loss of independence.
"I want to live for the day but be one step ahead. I think of what will be next but don’t want to look too far ahead because it produces anxiety.”
She’s a retired teacher who has been instructing with the Roots of Empathy program and she plans to continue.
Though some people have avoided her since the diagnosis, she’s received a lot of support from family and friends.
Her son Mark C has been a real support.
“He’s our little ray of sunshine and keeps us focused on the day.
“I would like to have the gift of time to spend with family and friends. I want to do normal things.”
One of the normal things she will be doing is to celebrate her 65th birthday Sunday, Sept. 18. But earlier that day she’ll take part in the Walk for ALS.
“Krista Miller has organized a walk and barbecue,” she said. “When I looked at events for many other diseases I noticed many of the biggest fundraisers are survivors, but with ALS there are no survivors and the family is often burned out, so the number of people involved is limited. Only through donations will there be treatment, and maybe a cure.”
It’s common to hear people say they are “dying of ALS.”
Terri’s not buying in to that.
“I’m living with ALS,” she stressed. “The word is living. Every day may not be good, but there is always something good in every day.”
Anyone wishing to sponsor Terri in the walk can go to http://walkforals.ca , select Nova Scotia under “find a walk” and them click on “search individuals” under “make a donation” to find her name.
ALS FACTS
- 2,500-3,000 Canadians are living with ALS.
- About 1,000 Canadians are diagnosed each year.
- The average life expectancy after diagnosis is two to five years.
- Only five to 10 per cent of cases are inherited.
TRURO WALK FOR ALS
WHERE: Victoria Park
WHEN: Sept. 18
CHECK-IN: 10 a.m.
WALK BEGINS: 11 a.m.
INFO: Contact Krista Miller at [email protected] or 902-671-2583
“I had MS in mind because I have an aunt with that, but this wasn’t even on the radar,” she said. “When Dr. (Ian) Grant told us, the shock was immense.”
ALS – amyotrophic lateral sclerosis, also known as motor neurone disease and Lou Gehrig’s disease – causes nerve cells that control muscles to degenerate. There is a progressive loss of ability to move, talk, swallow and breathe. There’s no cure, nor is there effective treatment.
ALS is usually diagnosed by ruling out other diseases.
“I had a lot of tests,” said Terri. “There’s no marker for it so they eliminated everything else.”
It took about a year before she was diagnosed on March 8.”
The next day she phoned the ALS Society and spoke with someone for about an hour. And there were long talks with her husband, Bruce.
“I’m a very emotional person and I did cry a lot but it was a release to cry,” she said. “I felt it was releasing toxins from my body and when you embrace your emotions it gives you strength. But we went through a lot of Kleenex.”
Terri and Bruce have faced various stages of grief since she was diagnosed. They’ve found it helpful to talk with a psychologist.
“With most diseases there’s hope but with ALS there’s only one outcome,” said Bruce. “It’s 100 per cent fatal.”
They were grateful to learn this form of ALS is “sporadic” and not hereditary. She doesn’t have to worry it will be passed down to her sons.
Terri has made adjustments. She uses her left hand more and orders food that requires little cutting when dining out. She still cooks; it just takes a bit longer. She still walks, but doesn’t venture as far. Bruce helps, taking on extra tasks.
“A big loss will be not being able to drive,” said Terri. “It will be a loss of independence.
"I want to live for the day but be one step ahead. I think of what will be next but don’t want to look too far ahead because it produces anxiety.”
She’s a retired teacher who has been instructing with the Roots of Empathy program and she plans to continue.
Though some people have avoided her since the diagnosis, she’s received a lot of support from family and friends.
Her son Mark C has been a real support.
“He’s our little ray of sunshine and keeps us focused on the day.
“I would like to have the gift of time to spend with family and friends. I want to do normal things.”
One of the normal things she will be doing is to celebrate her 65th birthday Sunday, Sept. 18. But earlier that day she’ll take part in the Walk for ALS.
“Krista Miller has organized a walk and barbecue,” she said. “When I looked at events for many other diseases I noticed many of the biggest fundraisers are survivors, but with ALS there are no survivors and the family is often burned out, so the number of people involved is limited. Only through donations will there be treatment, and maybe a cure.”
It’s common to hear people say they are “dying of ALS.”
Terri’s not buying in to that.
“I’m living with ALS,” she stressed. “The word is living. Every day may not be good, but there is always something good in every day.”
Anyone wishing to sponsor Terri in the walk can go to http://walkforals.ca , select Nova Scotia under “find a walk” and them click on “search individuals” under “make a donation” to find her name.
ALS FACTS
- 2,500-3,000 Canadians are living with ALS.
- About 1,000 Canadians are diagnosed each year.
- The average life expectancy after diagnosis is two to five years.
- Only five to 10 per cent of cases are inherited.
TRURO WALK FOR ALS
WHERE: Victoria Park
WHEN: Sept. 18
CHECK-IN: 10 a.m.
WALK BEGINS: 11 a.m.
INFO: Contact Krista Miller at [email protected] or 902-671-2583
