The first sign for Terri came with loss of function in her right hand. She was diagnosed with ALS in March 2016.
She accepted there was no effective treatment for the condition, but then learned about Edaravone, being used in Japan and South Korea.
“I was hoping it would slow, or stop, the progress of ALS,” she said. “I wasn’t expecting to get any function back but knowing this might slow things gave me hope.”
She and her husband, Bruce, contacted the ALS Society of Japan, Dr. Hiide Yoshimo – who was involved in the Edaravone clinical trials – and the drug’s manufacturer. They would need to travel to a country where the drug is approved, be treated by a neurologist, get a prescription and purchase the medication to bring back to Canada.
When Terri and Bruce, along with son Mark C, left for Japan on March 3, her right thumb required a brace and the fingers were bent and hurt if she tried to straighten them. She received her first dose of Edaravone March 7. Two days later she could move her thumb and straighten her fingers.
“We were shocked,” said Bruce. “Her hand strength had improved by 10 per cent on her right hand and 15 per cent on her left, compared to the baseline from three days earlier.”
Although there were patients from around the world being treated at the Yoshino Neurology Clinic, Terri was the first from Canada.
Her family doctor, Dr. Stephen Ellis, was very supportive.When she returned to Canada, he gave her the initial treatments, which are administered intravenously in his office.
After a six-week struggle with the Nova Scotia Health Authority, approval was given for the medication to be administered at the local hospital. Receiving approval meant getting a letter from Health Canada – with help from Dr. Supriya Sharma, Chief Medical Adviser with Health Canada – stating nurses can administer Edaravone. This directive will apply across the country if a person with ALS wants to be treated in hospital.
“It took a lot of people to get this done,” said Bruce. “Because the medication labels were in Japanese we had to get translation help from Leroy and Michelle Lowe.
They also received help from Dr. Stephen Ellis and Raj Makkar, director of ambulatory care, and Stephen Leadley, risk manager at the hospital.”
The patient normally must accompany medication coming into the country but Bruce received permission to bring back more Edaravone for Terri later this year.
“Everybody is different, but this works for me,” said Terri. “I’ve encouraged other people to go for it because there’s nothing else out there now.”
She said one of the problems for many people is the expense involved with getting medication. Because it’s a small market the company that makes Edaravone hasn’t hurried to get it approved in Canada. It’s expected to be available in Canada in late 2018. It recently became available in the U.S. but costs about $1,300 Cdn per dose, compared to $48 Cdn for each dose in Japan.
“I say, ‘I have ALS; I am not ALS.’ I am still me, the same person I used to be,” asserts Terri.
“ALS is a frightening disease but I am not going to let that fear dictate how I live my life. Fear kills hope and right now ‘hope’ is a place called Japan.”
Terri will be taking part in the ALS walk again this year. Anyone wishing to sponsor her can go to http://alsnbns.ca/en/register/ and under Nova Scotia click “Truro”; under “support this event” click “search” and scroll down to Terri’s name. People can also register for the walk themselves.
– Also known as motor neurone disease (MND) and Lou Gehrig’s disease
– 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. (Terri Bishop does not have hereditary ALS).
– The condition causes nerve cells that control muscles to degenerate, affecting movement, speech, swallowing and breathing.
– Edaravone is sold under the brand names Radicava and Radicut.
TRURO WALK FOR ALS
WHERE: Victoria Park
WHEN: Sept. 10
CHECK-IN: 10 a.m.
WALK BEGINS: 11 a.m.
Contact: Greg MacArthur at firstname.lastname@example.org or 902-957-1097