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THE CALGARY PN'ERS August 2007 vol.
6 issue 2 Editor and Publisher: VAL
SHAW-LEWIS HISTORY OF CNA The CALGARY (Alberta)
NEUROPATHY ASSOCIATION (CNA) came to fruition in March 2002 with
the support of Dr. Douglas Zochodne, Neurologist & Director, Neuromuscular
Clinic, Health Science Centre, Calgary, Alberta, Canada. The group is made up of
individuals who all suffer from the same condition; neuropathic pain.
The aim of the group is to offer care and education as well as emotional and
moral support to one another in times of need. As author of THE CALGARY PN'ERS
Newsletter, I believe it is important to
spread the word that there is a support group alive and well in southern
Alberta, where anyone with neuropathic problems and concerns can turn to for
help and support. Since the inception of the
Association in 2002 many new members have joined the group. On behalf of the
Board, I welcome each of you. I trust you will find the support and help that
is readily available within the group and that you will enjoy the fellowship and
camaraderie of others. Anyone who suffers from any form
of neuropathic pain needs to share this devastating condition with family
members and friends to help them understand what neuropathy is about. If you
know of someone who suffers from neuropathy, please extend a hand.
The time spent as President since the inception of the group in March 2002 has
been challenging and sometimes overwhelming. I have met some wonderful people
from physicians to other healthcare providers to pharmaceutical representatives
as well as members within the Association. As in the words of Scott Hamilton,
Olympic Ice Skater, "If I hadn't met with this terrible disease (testicular
cancer), I wouldn't have had the opportunity to meet all these great people
along the way". My sentiments exactly Mr. Hamilton. I hope that whoever agrees to my
shoes will do as good a job that I have endeavoured to do for you during the
past few years. I thank you all for your support,
encouragement and care during this part of my volunteer career...I wouldn't have
missed out on it for the world. I ask that you give the same support to the
next President. I have been invited to volunteer at other agencies in the
city. Participation will depend on health matters. I look forward to other
challenges at this stage in my life. PRESENTATION TO ROTARY CLUB
- the Calgary Chinook Rotary Club invited me to attend their lunch meeting on
July 17, 2007 at the Carriage House to present neuropathy and neuropathic pain
to its members. The meeting was well attended and many questions posed.
Interestingly enough, two of the members suffered from neuropathy. PRESENTATION TO MEDICAL
STUDENTS - at the invitation of Dr. Zochodne, I made my annual
neuropathy presentation to 2nd year medical students on Thursday, August 30,
2007 at the Libin Theatre, Faculty of Medicine. This was my fifth annual
presentation and is something that I always enjoy participating in. I believe
it's a great learning tool for these up and coming physicians, whichever field
of medicine they decide to pursue. There was a good turnout and the medical
students were a great audience. PRESENTATION TO CANADIAN
ORTHOPAEDIC NURSES ASSOCIATION (CONA) - I have been invited to represent
the CNA at a forthcoming conference to be held in Calgary on Tuesday, October
30, 2007 at the Village Park Inn. Topic will be "WHAT IS NEUROPATHY?:
the most common disease you have NEVER heard of..." CNA DUES &
MEMBERSHIP - due to the
change in the fiscal year of the Association (January 1st - December 31st in any
given year) it was agreed at the May 2007 General meeting that the membership
fee for the remaining four months of 2007 (September - December) plus the full
year for 2008, be $42.00/single or $72.00/couple. According to the By-Laws all dues
should be paid by February 28th in each year until further notice. Should you
have any questions in this regard, please touch base with me. Membership at the end of June
2007 was 89 active participants. Your co-operation in arranging, where
possible, doctor's appointments or other commitments on days other than the
dates of the meetings would be very much appreciated (see 'DATES of MEETINGS').
Please remember that guest speakers give of their time freely and therefore, a
"full" house at any meeting would be appreciated. INCREASING MEMBERSHIP - due
to the ever increasing costs to operate the Association, such as increase in
rent to hold monthly meetings at Grace Presbyterian Church, it is extremely
important that membership in the Association be increased. There are ways
that current members can help. That is by encouraging those you know or
meet at sometime during the course of a busy day and who in conversation tell
you that they also have neuropathy problems, is to suggest that they attend our
monthly meetings where they will have the opportunity to meet others with
likewise problems and concerns. Who knows, due to your selling powers
these individuals will decide to become members of the Association; thereby
increasing membership. BY-LAWS - current
By-Laws of the Association were once again reviewed, discussed and accepted by
Board members at their summer meeting on August 9, 2007. The By-Laws will be
brought forward for discussion by members in good standing at the September 26,
2007 meeting. If accepted at that time, the
By-Laws will be sent to Alberta Corporate Registries for acceptance and filing.
Changes in the By-Laws are necessary from time-to-time but it is hoped that with
acceptance of the new By-Laws no further changes will be required in the
immediate future.
RIGHT TO VOTE -
members should understand that only members in good standing
have the right to vote on any given matter presented to the general membership.
CHANGE IN CNA E-MAIL ADDRESS -
please be advised that the CNA has changed their e-mail address to
calgary.ab.na@telus.net .
Please make sure that you alter your records
in this regard. CONFERENCES/SEMINARS
- Dr. Cory Toth in collaboration with Pfizer Canada hosted a free Neuropathic
Pain Forum on the evening of May 8. Approximately 200 people attended
where a very informative and interesting presentation was made by Dr. Toth. One
of our members, Colin Taylor along with a patient of Dr. Toth's participated in
the evening's program. The CNA hosted a booth where 193
people (tally kept) stopped by to seek further information on neuropathy and
neuropathic pain. I thank the member volunteers who helped out that evening to
keep things running smoothly - Colin and Jayne Taylor, Trudy Dunsmore, Jim and
Lucy Blaxall, Doreen Szuch, Alicia Villasenor with myself bringing up the rear.
I had been invited by Pfizer to introduce Dr. Toth, which was a pleasure for me to
do...a lot of jocularity was injected into the introduction. Trudy Dunsmore and I attended a
very interesting diabetic Live Smart conference hosted by the Calgary
Chapter of the Canadian Diabetes Association on May 12 at the TELUS
Convention Centre. Dr. David Lau, one of our past guest speakers, was the
featured guest speaker for the afternoon's program. UPCOMING CONFERENCE
- The CNA in collaboration with the Calgary Health Region's Chronic Pain Centre
will be hosting a one day conference on Chronic Pain: It Takes Nerve on
Saturday, November 10, 2007 at the DELTA Calgary South Hotel, 135
Bonaventure Drive, SE from 9:00 a.m. to 3:00 p.m. Registration will commence at
8:00 a.m. with Continental Breakfast, mid-morning break and a hot buffet lunch
will be served. The cost is: $25.00/person (members of the CNA) and
$35.00/person to non-members. The featured guest speaker for the morning will be
Penney Cowan, Executive Director & Founder of the American Chronic Pain
Association. The title of her topic will be "It Takes Nerve" and the theme for
the day will centre around NEUROPATHY:
the most common disease you have NEVER heard of... The
afternoon's speakers will be three representatives from the Chronic Pain
Centre. A number of members have agreed to volunteer their time to help out.
CHRONIC PAIN -
living with chronic pain is just plain hard, harder than family and friends or
doctors or employers realize. There are good days and bad days and even worse
days. Where do you turn to when no one seems to understand? How do you get
yourself out of a swirl of negative thoughts and feelings? Sometimes it works
to reach out to loved ones and ask for extra support. Sometimes a particularly
bad day requires that you spend some time alone, re-grouping and focusing on
you. Focusing on you takes practice and discipline. (Source: National Pain
Foundation, June 2005).
DIABETIC NEUROPATHY
is a serious complication of diabetes that affects millions of people every
day. In fact, one in two people with diabetes has this condition. Nerves
damaged by diabetic neuropathy can cause stinging or burning sensations,
tingling, pain, numbness or weakness in your feet or hands. You can be
sensitive to touch and everyday activities can cause extreme pain. Diabetic
neuropathy puts you at risk for foot injury, infection, even amputation. It is
important that you contact your healthcare provider if you are suffering from
any of the above symptoms. (Source: American Diabetes Association)
. Canadian web address:
www.diabetes.ca EXERCISES - Calgary
Health Region has an excellent exercise program called The Living Well program
for people living with a chronic condition, such as; neuropathy. If you are
interested in joining the program, take the time to call 943-2584 for further
information. MEDICALERT - I
strongly urge anyone who suffers from a chronic condition, such as neuropathy,
and who is taking a number of medications to consider joining the MedicAlert
program and purchasing a MedicAlert bracelet. Wearing a bracelet such as this
may help to avoid any problems you may encounter when attending at the Emergency
Department of any hospital or any clinic. Telephone number: 1-800-668-1507 or
416-696-0267. Web address: www.medicalert.ca CNA BUSINESS CARDS
- please remember that the CNA Business Cards can be used when purchasing items
at both locations (north and south) of Home Care Medical Supplies. Just show
the card to the sales clerk who will extend a 5% discount to the purchaser and a
5% discount to the CNA.
CNA BROCHURES -
available at group meetings or physicians' offices and clinics. The brochures
have been made possible through an unrestricted educational grant from Pfizer
Canada Inc. It is important that neuropathy and neuropathic pain be
brought to the forefront. 2007 BOARD - Carl
Rollock, Chairman & Vice-President; Directors: Jim Blaxall, Trudy Dunsmore, Joe
Fleming, Alex Fraser and Lorraine Martin. Val Shaw-Lewis (President and
Secretary-Treasurer) sits on all committees of the Association. PUBLICATIONS "Peripheral Neuropathy: When
the Numbness, Weakness, and Pain Won't Stop" 2007 Norman Latov, M.D., PhD.
This book is written in layman's terms and can be purchased through our
Association for a cost of $25.00/book, includes shipping and handling. Please
let me know if you are interested in purchasing a copy. WEB ADDRESSES - the
following addresses are available for additional information on neuropathic
and/or chronic pain. Please view our website at
www.calgarypners.org for further
information under "Links".
www.ittakesnerve.org (American
Chronic Pain Association) HOW TO TALK WITH YOUR
DOCTOR - problems of poor doctor/patient communications can usually be
easily resolved. To overcome some of these issues, the following maybe of
benefit to you in your communication with your physician: Learn as much as possible about
your condition via a support group, such as the CNA, the Internet, resource
material available or other sponsored patient education programs; Arrive at your doctor's office
with a list of your concerns, insisting upon responsiveness to your
thought-out questions about symptoms and treatment options; Describe your experiences quite
specifically as to how the pain feels (burning, tingling, stabbing, aching,
etc.), where the pain occurs, intensity level (on a scale of 1-10, with the
highest number being the most painful), and how long the pain lasts, etc.; Take a complete list of all
medications and supplements for review; If a new drug is being
prescribed, you need to understand its purpose, potential side effects that
could arise, and what you should do in the event of adverse reactions. In short, you need to
become your own best advocate for your medical care. You must become an active
partner in your doctor/patient Balance
Problems? When walking, keep your
feet apart, straddling an imaginary line. When turning, turn your
feet first, then your body, lifting one foot at a time, keeping your feet
parallel and wide apart. Do not use stairs without
railings, unless you have a strong companion.
When sitting down, reach
with both hands for the arms of the chair before you begin to sit. Lower
yourself slowly. Once standing, get your
balance, and then begin walking slowly. Swallow your pride and use one or two
canes, especially if you are in a darkened theatre.
The bathroom is a dangerous
place. Get rid of loose, small rugs. Carpet the floor, or get large area
carpets with rubber undersides to cover the areas you use.
Install bathtub and toilet
handrails. Have small night lights
inside the house to act as guides. Red lights are least disruptive to your
night vision. Buy inexpensive red lights which turn off automatically in the
daytime.
The guest speakers who were in attendance for the January to June 2007 season
were excellent and well received. January 17: Melinda
Hatfield, Social Worker, HSC - gave a
most informative presentation on How to Cope with Neuropathic
Pain; She was joined by Dr. Toth and
Susan Wood, R.N. to inform members of the new Neuropathic Pain Clinic at the
Health Science Centre. February 21: Dr. Bruce Hoffman "Seven
Steps to Health & Transformation".
Members were well pleased with Dr. Hoffman's presentation and agreed that as he
only got to Step One he should return at a future date to complete the next six
steps. March 17: Martha Kinsella, CHR Chronic Pain Centre
spoke on "How to Maximize Function while Managing Pain".
This was an excellent presentation and well received by the members.
April 18: Dr. Cory Toth spoke on "Neuropathic Pain and Albertans".
Members welcomed the opportunity to
ask Dr. Toth questions pertaining to this devastating disease.. He also gave an
overview of the new Neuropathic Pain Clinic which opened in February of this
year at the HSC. May 16: Open
Discussion Meeting with Fern McNaughton, Pharmacist in attendance. It was
unfortunate that time ran out before Ms. McNaughton's presentation on
Drugs in General was
completed. Members thoroughly enjoyed the interaction between pharmacist and
those in attendance. June 20: John Hornach & John Baragar,
volunteers with the Calgary Police
Service Business Liaison Program spoke on "Counterfeit Currency
and Credit/Debit Card Fraud". Again,
members were interested in these two speakers returning to complete their topic.
There has been a great turnout at the meetings and the Board would like to see
this continuing. The guest speakers give of their time freely so out of respect
for their valuable time, I ask for your co-operation in attending the meetings,
when or wherever possible.
We are fortunate to hold our monthly meetings at Grace Presbyterian Church and
have been well looked after by the support staff. DATES OF MONTHLY
MEETINGS
All meetings are held the third Wednesday in each month unless otherwise
advised. Please notate the following dates on your calendar
for the remainder of 2007 & part of 2008: September 26; October 17;
November 21; December 19;
January 16; February 20; March 19; April 16;
May 21; June 18. PUBLIC SERVICE
ANNOUNCEMENTS -
the
CNA 'blurb' continues to be advertised as an ongoing Public Service Announcement
in local papers as well as in community bulletins. Without the support
of the Calgary Herald (Neighbours) and community associations, these public
service announcements would not be possible. It is hoped that by way of these
announcements neuropathic pain will be brought to the attention of healthcare
providers and the general public.
Dorothy Stewart for her
hard work as Kitchen Co-ordinator. I continue to be amazed at the amount of
time and energy that Dorothy puts into her volunteer position; to Dorothy's
assistant, Lucy Blaxall and to the volunteers who kindly bring goodies to the
monthly meetings for our enjoyment. I especially want to thank John (Dorothy's
husband) for his everlasting patience. To Mickie Korek for extending a hand to
help with sending cards. To Trudy Dunsmore (Recorder), Lorraine Martin and Cris
Rollock for their patience and hard work at the Registration table; Alex Fraser,
Joe Fleming and Andrew Slater for keeping our records up to date in readiness
for filing the Annual Returns with the Federal and Corporate Agencies.....I
thank you all. Without you, I'm sure our meetings and other important matters
would not run so smoothly. Dr. Douglas Zochodne
for his continued support as Medical
Advisor to the CNA; Pfizer Canada Inc., and Ken Ron Pharmacy (Ken
Whiteley) for their continued support. C-R-Studios (Chad Reitsma) for
graphic design and web updates; RRTISTIC INK DESIGN (Robert Perry) for
the Conference 2007 web page creation; Calgary Herald (Neighbours) and
the Community Associations at large for their assistance with advertising
the CNA's public service announcements in their monthly bulletins and
ndwsletters; and to Haines Consulting (Linda
Haines) for her assistance with the Association's accounting system. On a personal note, I extend my
thanks to members of the Board and membership at large. Much of what occurs
within the group would not be possible without your support and encouragement.
I thank you for the many positive comments that I receive. HANDICAPPED PARKING PERMIT
- to qualify in the Province of Alberta, contact a local registry office and
request an application form. Complete the applicant's portion and then ensure
that the appropriate physician completes their portion. Return the completed
form to the registry office where an agent will issue a temporary or permanent
parking permit, dependent upon the physician's remarks. DISCLAIMER - the
contents of this Newsletter are provided by the Calgary (Alberta) Neuropathy
Association as a public service. This newsletter should not take the place of
advice and/or guidance from your own health care provider. It is extremely
important to check with your own physician about changes in your treatment
plan. This material does not represent the views of the Calgary (Alberta)
Neuropathy Association nor its members. It is for information purposes only.
Attitude So she did, And she had May we all
thrive and not merely survive with our neuropathy condition, REMEMBER...this is
your Support Group...stand up for what you believe in.
TO be an Advocate, Support
Group Leader, Peripheral Neuropathy Researcher and Publisher - for any person
who suffers from neuropathic pain. TO inform those who have neuropathy
that they are not alone in suffering from this devastating and debilitating
disease; THAT they may benefit and be educated from the many resources
available to them; and THAT they be aware of the support readily
available at the Calgary (Alberta) Neuropathy Association. | ||||||||
MONTHLY MEETINGS
The Calgary (Alberta) Neuropathy Association wish
to thank the guest speakers who graciously donated their valuable time. Their
support is very much appreciated.
