E P I G R A M M
Epilepsy Association of Calgary 4112 - 4 Street NW, Calgary AB T2K 1A2
Website: www.epilepsycalgary.com Email: epilepsy.calgary@telusplanet.net
Phone (403) 230-2764 Toll free 1-866-EPILEPSY
Fax (403) 230-5766
Our Mission: To support independence, quality of life, and
community participation for people with and affected by epilepsy.
Musician
Frank Leahy Becomes Spokesperson for Epilepsy
We are pleased to announce that gifted Canadian musician,
composer, actor, playwright and producer has been named the National Spokesperson for the
Canadian Epilepsy Alliance (CEA). Mr. Leahy,
who lives in Waterloo, Ontario was bestowed one of the greatest honors in Canadian folk
music in 1997 when he was bequeathed Don Messer’s violin. Leahy was also the youngest competitor to win the
Canadian National Fiddle Championship in 1984 at the age 23.
Leahy,
41, is delighted to represent the CEA since epilepsy has affected his family personally. His eight-year-old daughter, Jasmine, has
intractable epilepsy. Frank and his wife Lisa
have six children and Jasmine’s seizures are a daily part of family life in the busy
Leahy home.
“At first it was devastating, we were terrified and
panicked. There is the stigma of epilepsy
that parents have
deal with.”
Leahy
has overcome the stigma and has willingly chosen to share his personal triumph. Leahy has elected to represent the Canadian
Epilepsy Alliance to help dispel the myths surrounding epilepsy. Like all parents, Leahy hopes for a cure to stop
his daughter’s seizures. In the
meantime, epilepsy agencies across Canada continue their work offering help and hope to
people affected by seizure disorders. As
National Spokesperson, Leahy hopes his affiliation with the CEA will help raise funds and
much needed epilepsy awareness. Leahy is signed with CBC records and is often referred
to as “Renaissance Man”, a fitting title for a parent with a mission to promote
awareness, understanding and acceptance of epilepsy and help bring epilepsy out of the
shadows and into the light.
"Everytime
a child is born the world lights up with new possibilities."
Unknown
Protect
Yourself from Crime During Summer Travels
Summer
is a time for fun, relaxation and enjoyment. Becoming
a victim of a crime is the last thing most people plan on.
Thanks to Kate Savage of the Calgary Police Services, the following tips and
guidelines will help ensure that your travels are fun and safe!
Secure
Your Home Before You Go!
- Make sure your doors and windows
have good locks.
- Keep your residence looking lived
in (use light timers).
- Arrange for mail pick-up and yard
maintenance.
- Don’t use your telephone
answering machine to announce your absence.
Take valuables to a safety deposit box.
Stay
Healthy, Happy and Wise!
- Ensure you have adequate supplies of
any medication needed and take it in the
original containers with a copy of prescription information.
- The name of an emergency contact
person and your medical information should be with you.
Arrange for up to date medical shots and have documentation
of inoculations received prior to leaving the country.
"The
trouble with learning from experience is that you never graduate."
Doug
Larson
Muttart
Foundation Assists EAC with Technology Replacement
With the help of the Muttart Foundation, the Epilepsy Association
of Calgary recently received five new computers – four for our Calgary office, and
one which will be used in our Central Alberta office.
This will greatly assist us as we continue to utilize technology in
our day to day tasks, and as an increasingly important communication medium. For example, we will now be able to share
documents easily and inexpensively between Calgary and Red Deer, which will assist greatly
in our work in Central Alberta. This would
not have been possible without the support of the Muttart Foundation Technology Assistance
Program to whom we would like to extend our heartfelt thanks!
New Report on
Standards of Epilepsy Care and Epilepsy Related Deaths Released in Britain in May, 2002
By Kathy Fyfe and Pam Campbell
Source:
Hanna N.J., Black M., Sander J.W., Smithson W.H., Appleton R., Brown S.,
Fish Dr. (2002). The National Sentinel
Clinical Audit of Epilepsy-Related Death: Epilepsy
– Death in the Shadows. The Stationery
Office.
The first study of its kind, The
National Sentinel Clinical Audit of Epilepsy Related Deaths: Epilepsy – Death in the
Shadows, was initiated and managed by Epilepsy Bereaved. Organizations participating
in the study included the International League Against Epilepsy, the Royal College of
General Practitioners, the Royal College of Nursing, the Royal College of Paediatrics and
Child Health, the Royal College of Pathologists and the Royal College of Psychiatrists.
One of a series of initiatives to improve epilepsy services, the study was
conducted to enhance understanding about deficiencies in the clinical management of
epilepsy and its fit in the overall spectrum of health care, and to gain insight into the
post-mortem process. The study utilized records of individuals who had died of an
epilepsy-related cause between September 1999 and August of 2000. A brief summary of
the results and the response from the British medical community follows. The report
in full can be viewed at www.sudep.org.
Findings
related to the investigation of epilepsy related deaths
The audit suggests that 60% of the deaths investigated appear to
have been SUDEP (Sudden Unexplained Death in Epilepsy) related. It asserted that
this could be as high as 67%, but this could not be confirmed due to insufficient post
mortem. Previous estimates had suggested SUDEP in only 11-17% of the deaths in those
with epilepsy. According to the study, a challenge in reporting these deaths relates
to inconsistencies in how they are reported (i.e. inconsistent terminology, a cause not
supported by the evidence, causes listed that had not contributed to death). It
suggested that this is due to a lack of awareness about epilepsy related deaths by
physicians, coroners, and pathologists.
The
study asserts that these findings point to an increased need for sufficient post mortem
examination and clarity/standards about how epilepsy related deaths are reported.
Findings
related to general practice and hospital based care
- The GP was the primary caregiver
even though a number of cases presented evidence that a reassessment by an epilepsy
specialist was called for.
- Long waiting periods before a
referral to a specialist and then waiting periods in excess of six months once referral
made.
- Some referrals were made to
neurologist, but not an epilepsy specialist.
- Many individuals experienced an
increase in seizure activity during the three months before death, although a small
percentage of these cases did not.
- Medical records were generally
poor. Documentation of history, seizure type,
frequency, triggers, medication, and other pertinent issues was not always sufficient nor
was the use of medical tests such EEG and CT scans.
- Continuity of care issues was
identified in the transfer from children’s services to adult system.
- Information on epilepsy related
risks was not provided to individuals and families.
- Low referrals to support services
provided community based epilepsy organizations.
- Lack of follow-up with families
after an epilepsy-related death was seen as problematic.
Response
to study from the British medical journal, The Lancet
The
Lancet’s commentary to this study viewed it as a wake-up call to management and made
some interesting points:
As many
cases of SUDEP are probably avoidable (estimated in the audit at 39% of deaths in adults
and 59% of deaths in children) a strategy to improve the quality of medical care for
persons with epilepsy is indicated.
·
People at risk should be identified and they and their families
should be educated about this possibility.
·
Recognition that there will be particular problems to address in
managing epilepsy in people who have associated problems such as learning disabilities.
As
continuing seizures is one of the most common correlations with SUDEP early and aggressive
treatment is essential. If seizures persist
for more than two years other treatment options such as surgery, vagus nerve stimulators,
or clinical trials of new anti-seizure drugs should be explored.
Pathologists need to be educated about SUDEP.
There is a need for continued study of causes, triggers, and mechanisms of SUDEP.
There
should be a targeted campaign to improve quality of care for people with epilepsy.
Response
from Chief Medical Officer of Britain
Sir Liam
Donaldson, the Chief Medical Officer of Britain, announced that he will have an action
plan in place within three months (of report) to reduce the level of preventable deaths
from epilepsy.
What
can be done now?
The Lancet suggests that “because primary-care
providers manage most patients with epilepsy in the USA and Canada, results of a similar
audit in North America would probably differ only in degree”. The findings of this study, therefore,
“may” be of constructive use both to the medical community and to those with
epilepsy. It must always be remembered that
a physician does not “manage” epilepsy in a vacuum. The person with epilepsy is also an active partner
in this process. While the report provides
concrete suggestions
for the medical profession to improve the quality of care and
reduce the number of preventable deaths, there are also steps that those with epilepsy can
implement to enhance seizure control and thus reduce their risk of an epilepsy related
death.
·
Do not discontinue
medications without first consulting your physician.
This can be extremely dangerous. Medications
need to be taken as prescribed.
·
Maintain a sensible
lifestyle (sufficient sleep, proper diet, regular exercise, stress management, and so on).
·
Maintain regular
contact and open communication with your physician. Family
physicians and neurologists can provide the information and expertise to allow those with
epilepsy to make informed decisions about
their life and lifestyle.
·
Use reasonable care and
caution when participating in activities (for instance, don’t swim alone and wear
helmets or other appropriate protection gear) and avoid sudden or excessive changes in
activity levels.
Epilepsy organizations can provide information and support to
individuals and families affected by epilepsy that will enhance their ability to cope and
adjust to the challenges they encounter. They
can facilitate referrals to other agencies and be advocates for individuals. They can help educate the community and raise
awareness about epilepsy. They can provide
concrete skill development to others about how to recognize and appropriately assist with
a seizure.
Please feel free to call us if you would like any further
information on this issue.
"If you ever think we are too small to make a difference,
try spending a night cooped up with a mosquito."
Swahili ProverbSource: EnableLinker
Publisher:
Canadian Abilities Foundation
THIRD
HUMOR COURSE
SCHEDULED
FOR SEPTEMBER 11, 2002
We are now
taking registrations for
our third "Epilepsy - Out of the Shadows… into the Spotlight Humor Course"
set to begin in September. The course will be
held on Wednesday evenings and is scheduled to begin on September 11th from
7:00 to 9:30 p.m. This course is possible
thanks to the support of an anonymous donor and is limited to 14 participants. It will be facilitated by Derek Wilken and Melanie
Burnell of the Cheers Project, and coordinated and evaluated by Kathy Fyfe of the Epilepsy
Association. If you are interested in
participating or learning more about the course, please call Kathy at 230-2764.
Benefits of Humor
This course offers a unique
method of learning to overcome personal obstacles and challenges that many people living
with epilepsy face. It teaches participants
to become more resilient and confident by “humoring” their physical and mental
health. Epilepsy is seldom associated with
fun, yet this course helps participants find the humor in their lives and situations. It's a fun, funny, and unique course that has
helped our participants in the following ways.
Using Humor and Stand-Up
Comedy Techniques Participants Gain Enhanced Coping Skills
·
Self-confidence
·
Self-esteem
·
Social support networks
·
New perspective
By Completing the Course
and Activities, Participants Gain Enhanced
Communication Skills
·
Public speaking
·
Ability to share ideas and
experiences using humor
·
Creativity
·
Social skills
“...mental health is a two way
street. Smiling is not just a result of
happiness. It’s also a cause.”
Goodman, 1996:203
Top Ten Reason’s to
take “Epilepsy – Out of the Shadows … into the Spotlight Humor Course”
By the Graduating Class,
December 2001
10. You can spread the word
– let people know what epilepsy is and what to do with a seizure.
9. Your jokes will be funny.
8. It keeps you from being
institutionalized.
7. It’s easier, and
more fun than AA.
6. We thought
it was just a joke!
5. Without the class your
performance will suck!
4. Food and
instructor’s jokes are cheap.
3. It gives you something to
talk to Jebb [Fink] about.
2. The snacks and dessert
bar are free for performers – there’s a real caloric pay off for making a fool
of yourself.
The number one reason to
take Epilepsy – Out of the Shadows – into the Spotlight Humor Course is
1. You will learn how to
‘seize’ the day!
LAUGHING ALLOWED
HUMOR CORNER
Counterfeiters: workers who put
together kitchen cabinets.
Pharmacist: a helper on the farm.
Polarize: what penguins see with.
Primate: removing your
spouse from in front of the TV.
Paradox: two physicians.
"Do little things
now; so shall big things come to thee by and by asking to be done."
Persian Proverb
UPCOMING EVENTS
AT THE EPILEPSY ASSOCIATON OF CALGARY
Adult
Support and
Information
Meetings
7:00
- 9:00 p.m.
Tuesdays
September
17
October
15
November
12
…………………………………..
Drama
and Theatre
for
Teens
12:00
noon - 2:00 p.m.
Saturdays
September
21
October
19
November
23
…………………………………..
Parent
Support Group
1:00
- 3:00 p.m.
Saturdays
September
14
November
16
For more information, please call Janice at 230-2764.
CONGRATULATIONS
JANICE!
e are pleased to announce that EAC’s Support
Coordinator, Janice Shaw was honored with a Life of Learning Award presented by the
Calgary Community Adult Learning Association on April 18, 2002. Janice has overcome some
incredible barriers in her life, not least of which was a severe learning disability.
However, Janice succeeded as a student, first at Mount Royal College and then at the
University of Calgary. There were virtually
no supports for students in Janice’s situation – so she had her work cut out for
her. Not only did Janice complete a Bachelor
of Social Work Degree, she also led the charge for the creation of services that would
support other learning disabled students at the University of Calgary, making it easier
for the students that followed her to maximize their potential and realize their dreams.
Telephone
Support Network
To
facilitate a link between participants, we provide
a Telephone Support Network Program that matches individuals with
the same or similar situation.
Phone Janice at
230-2764 for more information.
VOLUNTEER
OPPORTUNITIES
· Revenue Generation
·
Public
Education Speaker
·
Penguin
Actor or Guide
·
Educational
Displays
·
Special
Events
·
Childcare
·
November
- Epilepsy Education Month
· Office Assistant
·
Casino
For more information, please phone Pam at 230-2764.
EPILEPSY
SUPPORT IN RED DEER AND AREA
ur support group
meeting held on June 20 at Great Chief Park
picnic area was a fun night and it was an opportunity to meet with other members of our
association.
We will begin our meetings again in the fall on the third
Thursday of the month. We're looking for an alternative meeting site. Please contact
Sharon at our Red Deer Office at (403) 358-3358 or by email to epilca@telus.net for more information.
Support
Group Meetings
Red Deer
Office
Room 204B, 4805 - 48
Street
7:00 - 9:00 p.m.
Thursdays
September 19
October 17
November 21
December 19
The past three months have been very busy for the Central Alberta
Office. Day care providers were targeted and
we have had great success with public education in these organizations. The Red Deer Child Care Society invited me to do a
presentation at their local conference, which was attended by a large group of people. Every presentation that is done has educated that
many more people regarding first aid for seizures and awareness of epilepsy.
Funded by:
Donations Memberships
Fundraising Events
United Way
Of CENTRAL ALBERTA
The
recent workshop on Alternative Therapies presented by Dr. Roy Paulson, Naturopath and
Kristi Forster, Massage Therapist was very informative
for persons with epilepsy. Both speakers reiterated
that alternative therapies complement the care already in process. As a certified yoga instructor, I spoke about the
benefits of yoga and participants requested more information.
We
have two fund-raisers on the back burner and hopefully will have an update on them soon. We will be having a raffle and require volunteers
to help sell tickets. At the present time I
will be soliciting businesses for donations.
If
you have some free time to volunteer, please contact the Epilepsy Association - Central
Alberta office at (403) 358-3358.
Resource Guide
for Post-Secondary Students with Disabilities
Source: Karan
Smith, President, Alberta Committee of Citizens with Disabilities
he following web sites provide useful information for disabled
persons who are considering post-secondary studies in Alberta.
Alberta Committee of
Citizens with Disabilities
www.accd.net
Alberta Learning
Information Service
www.alis.gov.ab.ca
Canada Student Loan
www.hrdc-drhc.gc.ca/common/home.shtml
Disability Related
Employment Supports
www.gov.ab.ca/hre/dres
National Education
Association of Disabled Students
www.neads.ca
The
Epilepsy Association of Calgary has meeting space available at
4112
- 4 Street NW Calgary
Phone
230-2764
Rates:
Full
day $100.00
Half
day or evening $50.00
Accommodates
5 - 35 people
Our
meeting space includes:
separate
kitchen
washrooms
TV/VCR
whiteboard
overhead
projector
flip
chart stand
tables
and chairs
Parking
available on-site only evenings and weekends.
Nearby
street parking during the day from Monday to Friday.
In Memory of
Jim Leonard
he Epilepsy Association of Calgary would like to acknowledge the
memorial donations received for the Jim Leonard
Memorial Fund. The amount of $1,570.00
has been designated to purchase materials for our resource library. Thank you to Colin for initiating this project in
memory of Jim, as well as those who supported this effort.
STAFF
___________________________
Name
___________________________
Address
___________________________
City
Prov Postal
Code
_____________________________________________
Home Phone
Work Phone
Yes, I want to participate!
Please indicate by a checkmark:
? Epilepsy Association of Calgary (Calgary Office)
? Epilepsy Association of Calgary (Central Alberta - (Red Deer Office)
Annual Membership………. $
20.00
(January to December 2002)
Life
Membership…………. $200.00
Donation amount
…………..$_____
Total
enclosed……..$_____
Cheque___
Money Order___
Visa___
MasterCard___
___________________________
Credit card number
__________
Expiry Date
___________________________
Cardholder signature
A tax-deductible receipt will be issued
for charitable
registration number 11890
0778 RR001
My email address is:
______________________________
Please contact me at my email address about upcoming events and other information.
Material contained in this newsletter concerning epilepsy, research, treatment
and patient experiences is solely for information purposes.
Each individual's experiences of epilepsy are different. Please consult your physician for medical advice.
CALLING
1-866-EPILEPSY
If you live outside the Calgary and Red Deer local
calling areas, you can now reach us at no cost to yourself at our new toll free number to
ensure that support, information, and answers to your questions are just a telephone call
away.
If you live
within the Calgary calling area, please call us at 230-2764.
If you live within the Red Deer calling area, please call us at 358-3358.
Funded by:
Donations
Memberships
Fundraising Events
United Way of Calgary
& Area
BOARD OF DIRECTORS
2002-2003
George Jacob,
President
Marcel Ouimet,
Vice President
Julia Robichaud,
Secretary
Pat Frank,
Treasurer
Dan Pyper,
Past President
Kathryn Robson,
Director
Ken Davidson,
Director
Honorary Director
Derek Morris
Calgary
Flames
