Though she faces the fear and loneliness that comes with battling a terminal illness, Terri Bishop is grateful for many things.
Terri was diagnosed with ALS – amyotrophic lateral sclerosis – in 2016, and since then she’s found a way to access a drug that’s improved her life. She and her husband, Bruce, have shared information that’s helped others.
“I’m aware of the statistics,” she said. “I’m lucky my progression is slow. I try not to think too far ahead.”
From the time she was diagnosed, Terri was on a path to learn more about the disease, which causes nerve cells that control muscles to degenerate. She looked for ways to prepare herself for the future, while embracing the good in every day.
Finding out about the drug Edaravone, and arranging to get it from Japan, was a major milestone. There was major improvement in hand function after she began taking the drug, in March 2017. People who read her story contacted her, and since then the Bishops have shared information with 88 others from around the world.
Many have now told them of the health improvements they experienced since starting on Edaravone.
It’s possible to have the drug couriered from Japan, but an application has been submitted to have Edaravone approved for sale in Canada. That is expected to go through about the end of November.
Terri is aware her condition has progressed. At the end of the day, her throat is sore and her voice weakens. She uses a Cough Assist machine, which has been loaned to her by the ALS Society of NS and NB, to expand her lungs and clear phlegm.
She has a walker but hasn’t needed to use it yet. Since stairs will eventually make things difficult, the Bishops have put their home up for sale and are making plans to move into an accessible apartment.
Terri, a retired teacher, has been involved with Roots of Empathy for 12 years. It’s a program designed to foster empathy in children. She acknowledges it’s now time to give that up, but she admits she will miss it.
“I take things one day at a time now,” she said. “Every morning, Mark C pulls the blinds and says, ‘Get up, Mummy!’ On the days I don’t feel like moving, that’s a big help.”
Being connected to others is important for the Bishops, and they helped set up an online support group for those affected by ALS.
“Talking to many of the people we’ve come to know who are affected by ALS, we see common themes,” said Bruce. “It’s difficult for a non-ALS person to handle this. Even relatives shy away.”
Terri has experienced much of this personally.
“It’s such a lonely disease,” she said. “Many people just don’t want to talk about it. People don’t know what to do or say, so they avoid.
“We do have a core of really good friends, who’ve been very supportive. With a terminal illness, you find out who your real friends are.”
The Bishops have one friend who has brought a meal over every week, ever since Terri was diagnosed.
Bruce is facing his own health problem, being diagnosed with prostate cancer during the last year. But he and Terri are united when it comes to facing both the difficulties and the joys of life.
“We’re a team,” he said. “We’ve always been a team.”
ALS WALK STRONG
Taking it in strides
Terri Bishop is a member of the organizing committee for Truro ALS Walk Strong, which will be held Sept. 9.
Terri knows how funds raised through the walk can help those with ALS in their daily lives. The ALS Society of NS and NB loaned her a Cough Assist machine, which expands her lungs and clears phlegm. One machine costs $5,000, but funds from walks enable those who need such machines to use them without charge. The society loans more than 600 pieces of assistive equipment every year.
To support Terri at this year’s walk, go to www.walkstrong.ca and click on ‘Truro’; click on ‘Search’ in the top right-hand corner; search ‘Terri Bishop’ and click on the purple ‘Donate now’ button.