Scotiabank branches across most of Ontario are celebrating Epilepsy Awareness Month with community tables March 22 – March 28, 2015. Scotiabank customers can make donations and pick up epilepsy awareness ribbons from the community tables at participating branches in the following communities:
Alliston
Amherstburg
Ancaster
Angus
Aylmer
Azilda
Bancroft
Barrie
Beardmore
Belleville
Belmont
Blind River
Bracebridge
Bradford
Brantford
Brigden
Bright’s Grove
Caledonia
Cambridge
Cannington
Chatham
Chelmsford
Cobourg
Cochrane
Collingwood
Dorchester
Dorset
Dowling
Dundas
Earlton
Elliot Lake
Exeter
Fergus
Fort Erie
Goderich
Gravenhurst
Grimsby
Guelph
Haileybury
Hamilton
Hannon
Hanover
Hearst
Huntsville
Innisfil
Kapuskasing
Keswick
Kincardine
Kingston
Kitchener
LaSalle
Leamington
Lindsay
Linwood
Listowel
London
Marathon
Markdale
Mattawa
Maynooth
Meaford
Midland
Milverton
Mitchell
Mount Forest
Napanee
New Liskeard
Niagara Falls
North Bay
Orangeville
Orillia
Owen Sound
Parry Sound
Penetanguishene
Peterborough
Petrolia
Picton
Port Carling
Port Colborne
Port Dover
Port Elgin
Port Hope
Powassan
Rama
Sarnia
Sault Ste. Marie
Simcoe
South Porcupine
Spanish
St. Catharines
St. Jacobs
St. Marys
St. Thomas
Stoney Creek
Stratford
Strathroy
Sudbury
Sutton Branch
Tavistock
Tecumseh
Temagami
Thorold
Thunder Bay
Tillsonburg
Timmins
Trenton
Val Caron
The Ontario Brain Institute (OBI) is hosting a free public talk in Toronto March 24 that will see three people living with neurological conditions share their inspirational stories of the challenges they’ve faced and how they’ve overcome obstacles. One of the speakers is epilepsy awareness advocate Whitney Goulstone, a Toronto woman living with epilepsy who received a new type of deep-brain surgery that has stopped her seizures.
The other guests are Andy Barrie, the former host of CBC Radio’s Metro Morning, who will be speaking about living with Parkinson’s disease, and Rick Green, an advocate for people with attention deficit disorder and attention deficit hyperactivity disorder awareness.
The OBI hosts several of these talks every year, with most consisting of researchers discussing their work or entrepreneurs showcasing new products.
This event will be the first one focused purely on the perspectives of people living with neurological conditions, says Michelle Wilson, the OBI’s communications lead.
“We’re very patient focused at the OBI, so we really want to hear from people themselves who are living with different types of brain disorders,” she tells Voices of Epilepsy. “This is the first time for a truly patient perspective, so we’re pretty excited.”
The event, which will be emceed by Globe and Mail health columnist André Picard, is a forum for people to learn about how the speakers have lived with their disorders and, in some cases, how their condition has helped them learn more about themselves, Wilson says.
“We’re promoting the idea that you can live a full life with a brain disorder, and that there are a lot of new treatments and a lot of new things that people can do to be a very successful person who lives a full life,” she says.
Asked who the event is aimed at reaching, Wilson says people interested in brain health and health care in general will find the speaking engagement enriching.
“Most of all, anyone who wants to hear great, inspiring stories will want to attend,” she adds.
The event is being held March 24 from 6:30 p.m. to 8 p.m. at the Bloor Hot Docs Cinema in Toronto.Click herefor more information or to register.
Writer: Deron Hamel
If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.
Next to his family, there’s nothing Rob Jamieson says he loves more than his career in law enforcement.
A sergeant with the Ontario Provincial Police (OPP), he has always given a 100-per-cent effort to the organization he serves and to his colleagues.
And after he suffered his first two seizures in November 1996 and February 1997, he saw the OPP and his fellow officers throw their support behind him and accommodate him so he could continue to give his all.
Sgt. Rob Jamieson
Jamieson admits he had concerns at first. Would he be able to continue the career he loved? Being able to go into work each day and do his job to the best of his ability is a value at his core.
However, the OPP, Jamieson says, made great efforts to accommodate him.
For example, when Jamieson lost his driver’s licence for a year after being diagnosed with epilepsy in 1997, the OPP put him on foot patrol for a time. When it came to working overnight shifts, the detachment scheduled him to work until 3 a.m. rather than to 7 a.m. because working until dawn negatively impacted his circadian rhythm, the changes in mental and physical characteristics occurring in our bodies during a 24-hour period.
Jamieson underscores the importance this support has had on his life.
“It allowed me to continue in a career that I love. It allowed me to retain my dignity, which was integral. It allowed me to lead a team and to give back to the community,” he says.
And it has not just been his detachment’s leadership that has been supportive.
“The officers in my platoon never really asked about it; they just understood,” Jamieson says. “I think as long as I was a good person, and a good worker and a good leader, they didn’t care that I was leaving at three in the morning, even though it did bother me because I was leaving three hours in advance, but everyone in the OPP has been very supportive.”
Then there was a change in Jamieson’s condition.
After suffering a tonic-clonic seizure at home in December 1999, he began taking a new medication, Epival. This switch in medication reduced Jamieson’s seizures. Once the optimal dosage was determined by his doctor, the seizures stopped – permanently.
He has not had a seizure since 2004.
While seizure-free for more than 10 years, Jamieson still does all he can to keep his health in top shape so he can keep his condition in check.
“I try to eat better, I try to respect the circadian rhythm, and I think sleep is a critical component, and I also try to manage my stress to the best I can, and I think that helps.”
He also offers advice for others who are living with seizure disorders. Topping the list is that people with epilepsy need to let others around them know about their condition.
“I think it’s important for those around you to know the steps to take in the event that you have a seizure,” he says.
And for those who have disclosed their condition to their employers, Jamieson says they shouldn’t feel guilty if their job needs to be modified to accommodate them.
“Just because your shift gets modified a bit, you’re still out there doing your job, giving 100 per cent,” he says.
“It comes down to who you are as a person. Do you do a good job? Are you a good person? Those are the things that matter. From my own experiences, people were able to see that that’s the kind of person I am and they didn’t think twice about accommodating me.”
If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.
Daryl Yeo recalls the day in January 2013 when he learned of a clobazam shortage from an Epilepsy Ontario newsletter and had to contact his daughter, Lindsay, to ensure she had enough of the medication.
Lindsay, who lives with epilepsy, contacted her pharmacy only to learn it had run out of clobazam, which sent her scrambling to find a supply.
Eventually, Lindsay obtained the anticonvulsant medication, but for Daryl, the president of Epilepsy Toronto, this situation was another example of why national medication shortage notices needed to be mandatory.
Epilepsy Toronto president Daryl Yeo and his daughter, Lindsay, are seen here.
Naturally, Daryl is pleased the federal government announcement Feb. 10 that mandatory online reporting for all actual and anticipated medication shortages by pharmaceutical companies is forthcoming.
For several years pharmaceutical companies have been able to voluntarily post medication shortages online at Drugshortages.ca, however, the limited response was not satisfying many in the health-care community, according to consultations conducted by Health Canada last summer.
“We’re very, very pleased that the government has finally concluded that the voluntary system just wasn’t working,” Daryl tells Voices of Epilepsy.
Daryl says the announcement is “a great first step” to eliminating some “unnecessary stress” people experience when they’ve not had ample time to secure medication supplies during shortages. But, he adds, it’s not a solution to the drug-shortage program. There needs to be work done to better manage drug shortages when they do happen, he says.
“There’s a lot more work that can be done there,” Daryl says. “Once one discovers that there’s a drug shortage … the question is still ‘what do I do now?’”
In the case of people with epilepsy, for example, many of the medications they take have no alternative.
“Now that we have mandatory notification when there is a medication shortage, what kind of system can we put in place to more effectively manage the shortages when they do occur – because they will occur,” Daryl says.
Currently, if a person’s pharmacy runs out of their epilepsy medication but they find another pharmacy with a supply, the individual must get their prescription transferred – but once it’s moved over it can’t be transferred back to the original pharmacy.
This is one of the things that needs to change to foster better drug-shortage management, Daryl says.
“But, hopefully, (the announcement) is the start of managing shortages better across the board.”
Epilepsy information specialist Suzanne Nurse underscores the importance of developing preventative measures to avert medication shortages.
“There must be two priorities for governments: prevention of drug shortages and better management for situations when a shortage cannot be avoided,” says Nurse, who also chairs the Canadian Epilepsy Alliance’s drug shortages committee.
“Ontario and other provinces have been working on management strategies, but so far this work has been related to hospital pharmacy shortages and has not addressed the needs of patients who encounter shortages at their community pharmacy.”
Writer: Deron Hamel
If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.
