THE CALGARY PN'ERS
NEWSLETTER
December 2009 vol. 8 issue 4
Editor and Publisher: VAL SHAW-LEWIS
e-mail: info@calgarypners.org
web: www.calgarypners.org
HISTORY OF CNA
The CALGARY (Alberta) NEUROPATHY ASSOCIATION (CNA) came to fruition in March 2001 with the support of Dr. Douglas Zochodne, Neurologist & Director, Neuromuscular Clinic, Faculty of Medicine, Health Sciences Centre, Calgary, Alberta, Canada.
THE group is made up of individuals who all suffer from the same condition; peripheral neuropathy and/or 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. We 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, as well as family members and friends.
SINCE the inception of the Association in 2001 many members have joined the group. Members of the Board extend a “Welcome” to you. Support and help is readily available within the group…we hope 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 helping hand.
PAST-PRESIDENT’S NEWS – As you are aware in March 2007, I notified the Board and the general membership that I would relinquish the President's position in June 2008 after a number of years at the helm. This also encompassed the positions of Secretary, Treasurer, Memberships and Phone Secretary. This decision was not made lightly but was made with a very heavy and saddened heart. Unfortunately, things didn't turn out as I had hoped for.
AFTER numerous attempts within the CNA and through community association postings, the Board has not been able to find someone to step up to the plate to take on the role of President. The Board has found it difficult to recruit members from within the Association to accept positions on the Board. For this reason, it was necessary for me to continue in my role as Executive Director and Founder. Andrew Slater is our current Treasurer, Dennis Dickason, Vice-President and Sylvia Donley, Correspondence Secretary, along with the Directors, Joe Fleming, Andrew Hardy, and Ian MacLean. Unfortunately, the previous Membership and Phone Secretary had to step down due to additional health ailments.
IN ORDER to continue functioning as a non-profit, charitable organization we are in need of those members who are able to put their best foot forward and step up to the plate. In any organization, big or small, we, the CNA, need to come together as one body. We need to spread the word about this devastating and debilitating disease in order to increase membership in the organization.
UNTIL such time that the position of President is filled, Dennis Dickason, Vice-President, will Chair both the Board meetings and the General meetings, commencing in January 2010.
CHANGES are necessary and inevitable in any organization and the Calgary Neuropathy Association is no different in this regard. As times and demands change so must the Calgary Neuropathy Association. It is hard to find comfort in change but to remain a vibrant, accountable organization we must be committed to looking after many, not just the few. Change sometimes brings about a human cost - one that must be measured against the reality of dollars and sense.
AS I indicated in a previous Newsletter, during my tenure as President of the organization, I met some wonderful people along the way; from physicians to other healthcare providers, pharmaceutical representatives and members from within the organization.
I SHALL miss my time being at the helm of the Association but do believe that I endeavoured at all times to do my best for you, the members. I take this opportunity to extend to the Board and the Association my very best wishes for continued success. I will continue as Executive Director and offer my services and expertise in an advisory capacity (if needed); I will of course, remain as Founder of the Association.
I THANK each and everyone one of you for your support, encouragement, respect and care that you have shown to me during this part of my volunteer career...I wouldn't have missed out on it for the world. It is said that one door closes and another one opens. I have other irons in the fire as far as volunteer work goes; I want to get back to singing again and taking the time to attend the theatre; such as opera, and of course, to spend time with family and friends who I have put on the back burner for quite a while. So with this in mind, may I take this opportunity to wish you sincere wishes for the coming year and good health in all aspects of your personal life.
CNA DUES & MEMBERSHIP - According to the current 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 a member of the Board.
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. 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; for example, increase in rent to hold 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 the meetings of the CNA where they will have the opportunity to meet others with likewise problems and concerns. Who knows, with a word here and there, this may help to increase membership.
CHANGE IN CNA E-MAIL ADDRESS - please be advised that due to necessary changes, the e-mail address for advising of confirmation of meetings should be sent to info@calgarypners.org . Please make sure that you alter your records in this regard. Telephone number remains the same at: 403-831-2187.
CONFERENCES – We were fortunate to be invited to participate by way of hosting the CNA booth at two diabetes events during November 2009: Canadian Diabetes Association (Calgary Chapter) and Dr. David Lau's diabetes event. Both had excellent turnouts and many, many people stopped by the CNA booth on both days for information and questions on neuropathy.
AT this time, I want to give a special thank you to Peggy Clarke (Member) who volunteered her services on both days and Mickie Korek (Member) who volunteered her services at Dr. Lau's event.
WE were fortunate to receive funding from the following pharmaceutical organizations to help defray costs for resource material, etc.:
Baxter Corporation; Janssen-Ortho; Origin BioMed; Pfizer Canada and Talecris Biotherapeutics.
WE extend our thanks and appreciation to these pharmaceutical organizations.
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. There are times that 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).
THERE are some things you can do to help you feel more in control of your pain and get through those bad days. Learn to pace yourself or better still attend the meetings of the Calgary (Alberta) Neuropathy Association where you can join with others who may have similar problems to yours. Come and enjoy the camaraderie of the group and listen to excellent guest speakers talk on many topics associated with neuropathy.
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 - Alberta Health Services 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 403-943-2584 for further information.
MEDICALERT – anyone who suffers from a chronic condition, such as neuropathy, and who is taking a number of medications would be advised 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 or when travelling. Telephone number: 1-800-668-1507 or 416-696-0267. Web address: www.medicalert.ca
CNA BROCHURES - available at group meetings or physicians' offices and clinics. It is important that neuropathy and neuropathic pain be brought to the forefront.
CHANGE OF ADDRESS / TELEPHONE NUMBER(S) / E-MAIL ADDRESS OF MEMBERS - please notify the CNA if this is applicable to you by either calling 403-831-2187 or via e-mail info@calgarypners.org
The following information is once again offered for your perusal:
PUBLICATIONS -
"Numb Toes and Aching Soles: Coping with Peripheral Neuropathy"
1999 John Senneff
"Numb Toes and Other Woes: More on Peripheral Neuropathy" 2001 John Senneff
Both of these publications are available at local libraries. Apparently, they are very hard to obtain through www.amazon.ca Origin BioMed. in Halifax, Nova
Scotia has copies of the books available priced in Canadian dollars.
"Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop" 2007 Norman Latov, M.D., PhD.
WEB ADDRESSES - the following addresses are available for additional information on neuropathic and/or chronic pain. Please visit our website at www.calgarypners.org for further information under "Links".
www.ittakesnerve.org (American Chronic Pain Association)
www.holisticwebdirectory.com
www.medifocus.com/peripheral-neuropathy-guidebook (apparently this book is $29.95 (US) to buy)
www.nationalpainfoundation.org
www.neuropathyresearch.org (Neuropathy Research Foundation)
www.paincare.ca (Purdue Pharma)
www.pfizerforliving.com/register; (register on-line with Pfizer for free information)
www.theacpa.org (booklet "Ten Steps from Patient to Person)" - available on-line at 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 and become an active partner in your doctor/patient relationship.
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.
MEETINGS
THE guest speakers who were in attendance for the January to December 2009 season were excellent and well received. We thank them very kindly for giving of their time freely. Out of respect for their valuable time, your co-operation in attending the meetings, when or wherever possible, would be appreciated.
WE are fortunate to hold our meetings at Grace Presbyterian Church (15th Avenue S.W.) and have been well looked after by the support staff.
MEETINGS - due to ever increasing costs and effective January 2009 the meetings were cut back to six per year instead of ten. All meetings are held the third Wednesday in the appropriate month unless otherwise advised.
Please notate the following dates on your calendar for 2010:
February 17; March 17 (wear your green); May 19; September 15; October 20; December 1 or 8 (subject to change).
PUBLIC SERVICE ANNOUNCEMENTS / NOTICES OF MEETINGS - 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. The CNA is continually thankful to the many volunteer departments at the local hospitals and clinics through Alberta Health Services. It is hoped that by way of these announcements neuropathic pain will be brought to the attention of healthcare providers and the general public.
THANKS & APPRECIATION are extended to the following:
Dorothy Stewart, Lucy Blaxall and Nellie Guillemaud for their continued hard work during 2009 as Kitchen Coordinators; volunteers who kindly bring goodies to the meetings for our enjoyment; Mickie Korek for extending a helping hand with sending cards; members who help at the registration table; Alex Fraser, Joe Fleming and Andrew Slater for keeping our accounting records up to date and other individuals along the way. Without you, I'm sure the meetings and other important matters would not run so smoothly.
CONTINUED thanks and appreciation to Dr. Douglas Zochodne as Medical Advisor to the CNA; Kenron Pharmacy (Ken Whiteley) for their continued support; Calgary Herald (Neighbours) and Community Associations at large for their assistance with advertising the CNA's public service announcements.
THANKS and appreciation should be extended to the membership at large. Much of what occurs within the group would not be possible without their support and encouragement.
ONCE again, may I personally take this time to wish you all every good wish for the holiday season and a Very Prosperous New Year.
May we all thrive and not merely survive with our neuropathy condition,
whatever the cause.
REMEMBER...this is your Support Group...stand up for what you believe in.
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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.
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