Trigeminal Neuralgia Association of Canada
Published by: The Lethbridge Chapter
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WHO WE ARE.....
The Lethbridge Support Group is open to everyone who wishes to learn more about Trigeminal Neuralgia and who would like to support TN sufferer’s and their families. Meetings are held at 2 p.m. every second Saturday monthly at the Lethbridge Senior Centre, 500-11 Street South. Occasionally, films and/or guest speakers are presented. There is time reserved at each meeting for open discussion.
This newsletter is not intended to diagnose, prescribe, or to replace the service of your physicians; but only to give you information about our member’s experiences.
Donations to the TNAC are gratefully received. Your monetary support helps defray the cost of TNAC News, copies, supplies, postage, etc. Please make your cheque payable to Trigeminal Neuralgia Association of Canada and mail to: 1514 Lakemount Blvd., Lethbridge, Alberta T1K 3K4
NEXT MEETINGS.…
Saturday Sept. 13th, 2003
2:00 p.m. @ Senior’s Centre
Saturday Oct. 11th, 2003
2:00 p.m. @ Senior’s Centre
NEWS FLASH!!!!
Our Web Site will be online soon. The domain name has been purchased and the actual set-up has begun. Hopefully by the end of September the site will be active. The domain address will be: www.TNAC.org. You will be able to directly email either Marion or Patty through the web site. Stay tuned for further developments and news on this exciting event.
Lethbridge Support Group
Is hosting a fund raising Garage Sale on September 6, 2003. It will take place at 413 - 7 ‘A’ Avenue South, Lethbridge, Alberta. The sale will run from 9 a.m. to 4 p.m. Tell your friends to come and help support our sale. Proceeds will go to the TNAC, Lethbridge Support Group.
MARION’S DESK:
I have not been feeling too well lately. Perhaps things will be better next month. I hope everyone will have a pain free September.
My computer decided it was sick also and I have not been able to do anything, so please forgive me for not answering your emails. I will do so as soon as possible.
I want to thank the Lethbridge Chapter members who have given so generously to our Garage Sale, which Patty is coordinating on September 6th. Hope we have a good turnout and it doesn’t rain. We have had such hot weather for so long. Anything that has been donated & not sold will be given to the Salvation Army so no matter what, someone will benefit.
A request has been made to have our information packets & newsletters in French. We are trying to get people who will be able to do this for us. Nora Kudrenecky from Kitchener, Ont. Has agreed to help us with the information packets & Patty said she would give it a try to do the newsletters. Hopefully in the near future, we will be able to accommodate our French speaking members, but this would only be upon request. I have enquired in Lethbridge about having someone translate this for us but we would have to pay for it and it does not come cheap, so will see what our people can do. Any suggestions on this topic would be greatly appreciated.
That’s it for this month. Have a great September.
Marion
RECIPE FOR SEPTEMBER:
MEAT-A PIE
From Patty’s mom’s kitchen
1 lb ground beef
1/2 tsp garlic salt
1/2 cup fine bread crumbs
2/3 cup evaporated milk
1/3 cup catsup or tomato paste
2 ounce can sliced mushrooms, drained
2-3 slices processed cheese slices
1/4 tsp oregano
2 tblsp grated Parmesan cheese
Preheat oven to 400 F.
Combine beef, garlic salt, crumbs & milk in 9” pie plate. Mix with fork; spread evenly on bottom, raising rim about 1/2” around edge.
Spread catsup on meat mixture to rim. Cover with mushrooms, top with cheese strips in criss-cross pattern. Sprinkle with oregano & grated cheese.
Bake for 20 minutes or till done.
Note: This was a favorite of my mom’s because it can be doubled or tripled when company came. I always think of it as a ‘comfort food’ meal!
WINNIPEG SUPPORT GROUP MEETING:
The Winnipeg Support Group will be holding a meeting on September 11, 2003 at the Health Science Centre—off the Cafeteria Room. I am sorry, but I have no other information than this. Please phone Marion Hucul at 1-204-697-9459 or email to mhucul@shaw.ca for further information.
Trigeminal Neuralgia Association of Canada
2003 Annual General Meeting
Saturday, August 9, 2003
2:00 p.m.
Lethbridge Seniors’ Centre
Lethbridge, Alberta
Members in attendance:
Mona Wells Elmer Bolick Elroy Davies
Arlayne Davies Erna Janzen Zenon Maleck
Mona Leslie Patty Moyer John Edwards
Gwen Edwards Beverly Ens Jan Williams
Marion Guzik Don Brewer
The Treasurer’s Report was read by Don and adopted as read.
Marion read the letter that was sent to all Support Group Leaders. The main point of the letter was the possibility of having our 2004 Annual General Meeting during June in Winnipeg. As of yet we have had little response.
There was some discussion as to how we will have elections in 2004. By proxy in our newsletters seems to be the only viable alternative.
The letter that Sy Moskowitz would like to use for fundraising was passed around the room for approval. Everyone thought the letter was acceptable.
Marilyn Najm suggested drafting an information letter to be given to doctors & dentists. Everyone thought this was a good idea, so Marilyn “you have got the job!”
There was a discussion on donations received that are allocated to local support groups. It was decided that T.N.A.C. would keep 10% of these funds to cover handling & return expenses.
There are still some logos being presented for approval. We decided to table the logo issue to a later date when we have more to choose from.
Marion’s requests for reimbursement for travel expenses & repairs to her camcorder for damages incurred while recording the Dr. Casey & Dr. Kaufmann lectures were approved.
A suggestion to donate $100.00 to the Lethbridge Seniors’ Centre for their generous donation of a room for all of our meetings was approved. This money has come out of the Lethbridge Support Group funds.
Patty’s proposal to set up our web site with E.Q. Corp. was approved. We will go ahead with the bronze package which includes 5 email accounts, set up, & domain name (TNAC.org) at a cost of $35.00 (one time) for domain name, $19.95 (one time) for set up, & $10.00 per month as long as we use the service.
Patty will be organizing a garage sale to raise money for the Lethbridge Support Group in the near future.
We discussed the option of making our newsletter & information packets available in French upon request.
Meeting adjourned at 4:10 p.m.
Don Brewer
Secretary Treasure
TNAC
New Memberships:
ALBERTA:
Margaret Lomas
Christie Lyall
ONTARIO:
Elizabeth Pollock
Donations Received August 2003:
Robina Hughes
Arlayne Davies
Mona Wells
Elmer Bolick
Mona Leslie
John Edwards
Alice & Richard Harder
Clara Greenberg
Elizabeth Pollock
HAPPY BIRTHDAY’S TO ALL THOSE WITH SEPTEMBER CELEBRATIONS!
OUR DEEPEST SYMPATHY to the family of Hazel Nish, Cardston, Alberta. Hazel passed away on August 23, 2003. On behalf of the TNAC, I attended the funeral. Hazel, to me, was a great lady & when her biography was read I realized that she was a great, great & thoughtful lady. Many will miss her.
AN ACT OF KINDNESS:
Alice & Richard Harder, Carstairs, Alberta, have graciously donated a tape of Dr. Casey & Dr. Kaufmann’s presentations to the Association for our Library. This tape will be on loan for 1 month to any of our members who wish to view it. You must then return the tape to the TNAC. Thank you so much Alice & Richard for your thoughtfulness.
TN STORY……
Brenda Sharp, Ontario
I was in my late twenties, the mother of two young boys, living in a small country village in northern Ontario.
One spring, I developed a terrible toothache that seemed to radiate along my entire jaw. This went on for almost two weeks before I gave in and went to see a dentist. By the time I got there, the pain was so intense that he gave me several shots of freezing before even attempting to x-ray. Everything appeared normal on the x-rays. Eventually, the ache went away, but always returned. Then, the stabbing pains started. Several visits to several doctors followed. An ENT did surgery on my sinuses to look for a cause of the pain. Finally, I was correctly diagnosed with trigeminal neuralgia. Then the series of medications and treatments began. Massive doses of Tegretol…..Demerol every four hours……glycerol injections….more Tegretol…more Demerol. I refer to these years as my “zombie years”. I vaguely recall anything other than pain during those years. I didn’t work. I didn’t drive. I barely existed.
One day in 1989 I called my neurosurgeon and said I couldn’t take it anymore. I was ready to commit suicide. Life was just not worth living anymore. Sometimes the pains would hit every few seconds for days at a time. He immediately booked me for a microvascular decompression. My mother accompanied me on a plane and we traveled to Toronto. At that time, hospital stays were a little longer than today. I was in intensive care for 4 days, then left the hospital after 7 days. Even though the doctor told me that they were able to separate the nerve from the blood vessel, the pains returned within one week of arriving home, and gradually intensified to the point where I was back on full medication again. Just as I thought there was no hope of ever returning to a normal life, we found that if I applied zostrix on my face, the pain would be greatly reduced. Eventually, with constant use, it would disappear all together!
Anyway, after about a year, the pain was gone for good. I got my life back. I remember when I finally discontinued all the medication, it seemed like everything appeared in colour! I hadn’t realized that for 5 years, everything around me appeared to be in a “grey fog”.
Well, eventually it was time to get back to business! I went back to school and started working. I’ve had several very interesting jobs since then…. animal health technician, private investigator, historical photographer and medical transcriptionist!
Today I work with my husband as a management team for a major heavy construction company. Bryan is the Superintendent and I am the Quality Control Plan Administrator.
We have been building bridges across Ontario for the last 7 years and are away from home about 8 months of the year. We also take a wonderful tropical vacation for two weeks every winter!
I’ve tried very hard to keep this story short. Of course, there’s so much more to it. Anyone experiencing TN knows this. I just want everyone to know that there IS life after TN! I’m living proof…..and loving every minute of it!
Brenda Sharp J
THERE IS LIFE AFTER TN!
By Brenda Sharp
Since you have requested additional input for the newsletter, here's something that might interest you. It's a photo of me that was in a local newspaper recently. Here's the story:
My husband and I work together as a management team building bridges across Ontario. Each time we finish a bridge, we have an "unofficial opening" before he allows traffic to cross it, where I do cartwheels from one end of the bridge to the other! This is something we started several years ago for fun, and have continued. Anyway, we recently completed a bridge in Cobourg over Hwy 401, and here's a photo of me "doing my thing".
We are now in a town near Bancroft, Ontario working on another bridge.
Anyway, I just thought it was worthy to note that there IS life after TN. After suffering with severe trigeminal neuralgia for so many years, isn't it wonderful that after treatment (MVD), I could return to a career and even be healthy enough to do this? (Don't forget I'm a grandmother of 7!) ha ha!
Well, that's it for now. Keep up the great work everyone!!
THE TRIGEMINAL NEURALGIA ASSOCIATION OF CANADA
Presents a lecture for the general public and medical/dental professionals
THE INTRODUCTION OF CANADA’S
FIRST GAMMA KNIFE
And
ITS USE IN TREATMENT OF
TRIGEMINAL NEURALGIA
Hosted by:
Trigeminal Neuralgia Association of Canada
Toronto Chapter
Dana Lavrence and Carol Horvat, Support Group Leaders
Lecturer:
Dr. Anthony Kaufmann, MD. BSc (Med.), MSc. FRSC
Director, Centre for Cranial Nerve Disorders
Winnipeg, Manitoba
Saturday, October 18, 2003
1:00 p.m. - 3 p.m.
Where:
TORONTO WESTERN HOSPITAL
399 Bathurst Street & Dundas W.,
2nd Floor, West Wing, Auditorium 401
For more information, please call Dana Lavrence at (905) 886-7563
Or
Carol Horvat at (905) 687-8562, after September 15, 2003
Using Complementary Therapy to Relieve Pain (taken from The National Pain Foundation)
Part 2 (Continued from August issue)
As so many people in chronic pain know, medication alone often is not enough to relieve pain. The tenacity of chronic pain often leads people to areas outside of conventional Western medicine. More and more Americans are trying complementary and alternative treatments for their ailments, and this is especially true for those in chronic pain. The quality of research supporting complementary and alternative approaches varies from therapy to therapy. As with any treatment approach, before trying or using any of these suggestions, the use of complementary therapies should be discussed with your doctor.
Acupuncture: Originating in China more than 2,500 years ago, acupuncture involves inserting long, extremely thin needles into specific points along the body to prevent, diagnose and treat disease. Acupuncturists believe that energy - called qi - circulates through the body & that pain or illness results when this energy is blocked from moving along specific pathways, called meridians. According to principles of acupuncture, health can be restored by inserting needles along the meridians to remove energy blocks & achieve balance. Acupuncture can be used to relieve pain & discomfort. It also can be combined with electrical stimulation (electro-acupuncture). The American Academy of Medical Acupuncture states that acupuncture is useful as a primary therapy for both acute & chronic musculoskeletal pain problems, including muscle spasms, sprains, repetitive strain disorders (e.g., carpal tunnel syndrome), myofascial pain conditions (e.g., muscle tension headaches, soft tissue pain in the neck, regional shoulder pain), postherpetic neuralgia, peripheral neuropathic pain, and headaches. The World Health Organization recommends acupuncture for disorders such as tennis elbow, sciatica, low-back pain, headache, migraine, trigeminal neuralgia, peripheral neuropathy and more.
Biofeedback: Biofeedback is a technique that teaches people to use visual or sound cues to control their own biological responses to pain & stress. To teach people to “listen” to their bodies, a biofeedback trainer may use a device that detects electrical signals from the muscles & translates those signals into a sound, like a beep, or a visual, like a light, that people can recognize. For example, the machine flashes a light or sounds a beep every time a person’s muscles become tense so that people learn to associate sensations occurring within the muscles with tension levels. They then can learn to relax muscles & induce a state of calmness that can help improve pain. After going through a series of treatments, people learn how to respond without using the machine. Some devices help people learn to control their physical functioning by measuring skin temperature, heart rate, sweat gland activity & brain wave activity.
Chiropractic Manipulation: Chiropractors, osteopathic physicians & manual therapists most commonly practice this intervention, which involves moving tissue by the laying on of hands. According to the International Chiropractic Association, the primary focus of chiropractic is the detection, reduction & correction of spinal misalignments & nervous system dysfunction. Doctors of chiropractic attempt to get to the root cause of a health problem & seek to maximize the natural strengths of the body & its capacity to heal itself without the use of drugs or surgery.
Guided Imagery: Guided imagery is a relaxation technique that involves sitting or lying quietly & imagining yourself in a favorite peaceful setting (e.g., beach, forest). Guided imagery, also called visualization, is more than just picturing your favorite peaceful setting - it’s truly imagining yourself in that setting. Be as specific as possible. Imagine what sounds you hear, what sensations you feel (e.g., cool or warm breeze), the textures you might feel, the sights you might see. The more specific your visualization, the higher level of relaxation you’ll experience as your mind truly is “in” the relaxing place you’re picturing.
NOTE: Next month we will bring you Part 3 of this article. The rest of the article will continue over the next couple of months. More subjects that will be talked about will cover a paragraph or two about Herbal Medicines & Supplements, Homeopathic Medicine, Hypnosis, Naturopathic Medicine, Progressive Muscle Relaxation, Relaxation Breathing, Yoga, Conclusion, References and Resources.
Patty’s Ponderings & Miscellaneous Ramblings:
Did you notice the News Flash on the first page of this month’s edition? Finally, it’s all coming together. I’m working hard on creating the pages and hopefully you will all like it when it’s done. It probably won’t be ready until near the end of September though because I just can’t devote more than a few minutes every night to working on it. I will be the webmaster for now. I really didn’t know very much about all this but I’m sure learning fast. So lookout world - www.TNAC.org is on it’s way!
And now for your enjoyment:
The following are different answers given by school-age children to the given question:
1) Why did God make mothers?
-She's the one who knows where the scotch tape is.
-To help us out of there when we were getting born.
2) Why did God give you your mother and not some other mom?
- We're related.
- God knew she likes me a lot more than other people's moms like me
3) What ingredients are mothers made of?
- God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
4) What kind of little girl was your mom?
- My mom has always been my mom and none of that other stuff.
- I don't know because I wasn't there, but my guess would be pretty bossy
- They say she used to be nice.
5) What did mom need to know about dad before she married him?
- She had to know his background. Like is he a crook? Does he get drunk on beer? Does he make at least $800 a year? Did he say NO to drugs and YES to chores.
6) Why did your mom marry your dad?
- My dad makes the best spaghetti in the world. And my mom eats a lot
- She got too old to do anything else with him.
- My grandma says that mom didn't have her thinking cap on.
7) Who's the boss at your house?
- Mom doesn't want to be boss, but she has to because dad's such a goofball..
- Mom. You can tell by room inspection. She sees the stuff under the bed.
Have a super September….. Patty
TNAC (Trigeminal Neuralgia Assoc. of Canada)
BOARD OF DIRECTORS
EXECUTIVE DIRECTORS DIRECTORS:
Marion Guzik; President Mona Leslie
Don Brewer; Secretary/Treasurer Patricia Moyer
John Edwards
CONTACT INFORMATION:
Head Office and Lethbridge Support Group
Marion Guzik
TNAC President
1514 Lakemount Blvd. South
Lethbridge, AB T1K 3K4
Phone: 403-327-7668 EMAIL: mguzik@telus.net
Calgary Contact
Marilyn Najm
P.O. Box 2376
Banff, AB T0L 0C0
Phone: 403-762-3650 EMAIL: najmmar@telusplanet.net
TNAC Newsletter:
Patty Moyer, TNAC Editor
P.O. Box 973
Coaldale, AB T1M 1M8
Phone: 403-345-6262 EMAIL: pgmoyer@telusplanet.net