Trigeminal Neuralgia Association of Canada
Lethbridge Chapter
EMAIL VERSION * EMAIL VERSION * EMAIL VERSION * EMAIL VERSION * EMAIL VERSION
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.
NEXT MEETINGS....
|
Saturday May 10, 2003 |
|
2:00 p.m. @ Senior’s Centre |
|
Saturday June 14, 2003 |
|
NO MEETING – SEE NEWS FLASH |
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
NEWS FLASH!!!!!!!!
Dr. Casey, co-author of our handbook ‘Striking Back’ will be coming to Lethbridge on Saturday June 7, 2003. Please keep this date open. Because of this, our regular scheduled meeting on June 14th will be cancelled.
NOTE: TN Stories….
If any of you submit your TN stories to the newsletter for publication, please include the following: A) a note giving your permission to publish your address, phone, email. B) a sentence stating that you would welcome other members to contact you. Otherwise, we will publish only your name with your article. Thank you.
Apologies
To Kathy Somers for not inserting her address & email in the April issue of TNAC News with her “Experience with TN”. I have had several requests from other patients who wished to correspond with her. Permission has been given to publish her address.
Kathy Somers,
248 Currey Crescent
Newmarket, Ont. L3Y 5M9
Phone: 905-853-9849
Email: dkdp@primus.ca
In our conversation, Kathy informed me that anyone in the York Region (King City, Bradford, Aurora, Holland Landing, East Gwillinburg, etc) who wished to phone her may do so. We welcome Kathy as a new Telephone Contact Person & Welcome to the TNAC Express.
Last Meeting News:
Members in Attendance:
Beverly Ens Bernard Bastian Gwen Edwards Marion Guzik Helen Scheurerman Don Brewer
Rachel Bastian Zenon Malec Erna Janzen John Edwards Deanna Malec
Dr. Casey’s lecture will be June 7th at 2:00 p.m. in Gym 2 at the Lethbridge Seniors Centre.
Volunteers to work the lecture are as follows:
Sell lapel pins and books: Don Brewer
Approach Pepsi for drinks: John Edwards
Food and Coffee: Erna Janzen & Beverly Ens
Front Desk: Mona Leslie
Dessert Tray: Zenon Malec
Deliver & Post Flyers: John & Gwen (2-3 weeks prior to lecture)
Supply Coffee: Rachel
Supply Cream & Sugar: Erna
Supply Cups, Plates, Napkins: TNAC
Contact Media: Marion
Video Taping: Zenon
Still Pictures: Beverly
Marion reminded the members that the gifts for Dr. Casey would be a signed book on the Rockies supplied by Marilyn Najm and a plaque yet to be made.
Don Brewer, Sec/Treas.
NEW MEMBERS FOR THE MONTH OF MARCH 2003
ALBERTA BRITISH COLUMBIA ONTARIO
Dave Audley Susanne Macdonald William Alderman
Bev Ens Barbara McCauley Ronald Kanerva
Vera Cail Jonathon Siegel
Rita Lieskovsky
Elizabeth Daubert
MANITOBA NOVA SCOTIA
Edie Little Mary Kyte
Donations Received March 2003:
Ronald Kanerva
Peter and Bonnie Neufeld
Brad Scidmore
Striking Back Sales: 1
HAPPY BIRTHDAY’S TO ALL THOSE WITH MAY CELEBRATIONS!
Notes From Marion’s Desk:
Have any of you experienced what I just have? I thought my computer would and should retain all information when you hit the save button but alas, when I went to close it off, I then hit the wrong button and wiped out my whole newsletter. I am now trying to remember what the heck I wrote (and I do think it was pretty good) but right now frustration has overtaken me. Marilyn Najm from Banff offered a good solution for us that are not computer literate. They should put a ‘maybe’ key on the computer instead of yes, no & cancel. Patty, please give me a couple of shacks with a wet noodle so I don’t do that again! Anyhow, I will try and remember but this is very frustrating.
Patty really surprised me by putting in a picture from our Archives in last month’s newsletter. This is the first picture we have ever had in our newsletter. Perhaps now that Patty has a new scanner for her computer (and knows how to operate it) we will be able to do more. If you have any pictures from presentations that you would like to send us, please do and I am sure Patty will put them in.
I have been very busy with the two presentations that will be taking place in Lethbridge & Calgary in June. I have not been able to respond to the emails & mail as soon as I would like to but please bear with me & I shall answer you as soon as I can.
Our Charitable Organization Receipts will soon be ready and then Don will have the pleasure of writing out all of your receipts. Please put them in a safe place until next Income Tax season rolls around.
We have received our lapel pins & I do think they are very nice. A pin was sent to all Support Group Leaders so you may contact the SGL in your area to ask about them or to order one. we hope you will all buy them to show your support for the TNAC and to wear them proudly. This is another form of fund raising for our Association which we need very badly.
I hope you all had a wonderful and pain free Easter
Marion
RECIPES...............
To get you in the mood for Summer!
CALIFORNIA STRAWBERRY SALAD Serves 6
2 bags mixed greens (enough for 6 servings) - whichever kind you like best!
1 cup fresh strawberries, sliced
1/2 cup pecan halves, toasted (optional)
1/4 cup red onion, thinly sliced
1/2 cup goat cheese or feta or your favorite kind
2 tblsp. Poppy seeds
2 tblsp. Lime juice, fresh squeezed is best
2 tblsp Extra Virgin olive oil
1 tblsp. Honey
1) Combine the greens, strawberries, pecans & onions in large salad bowl. Set aside.
2) Cut goat cheese into small pieces about the size of a dime (or break up your feta into chunks). Roll into small balls & coat with poppy seed.
3) Add cheese to salad.
4) In a small sealed container, shake lime juice together with olive oil and honey until mixed. Drizzle over salad & serve.
NOTE: Accompany this salad with grilled pork chops & fresh bread for a real nice meal.
Taken From: recipe counter of Save On Foods.
More Strawberry ideas:
1) Blend strawberries, a banana, orange juice & ice cubes for a classic smoothie.
2) Top a fruit flan or angel food cake with fresh berries & cream for a light dessert.
3) Add vitality to your breakfast cereal with fresh strawberries.
4) Toss fresh berries into pancake or muffin batter.
5) Dip berries in chocolate for a special treat.
6) Stir fresh berries into plain yogurt.
7) Serve fresh brie & strawberries to your guest.
Taken from: recipe counter of Save On Foods.
BONUS RECIPE FOR MUFFIN LOVERS!
RASPBERRY LEMON MUFFINS
2 c flour 1 c lemon flavored yogurt
1/2 c sugar ¼ c butter or margarine, melted & cooled
1 tsp baking powder 1 tsp grated lemon peel
1 tsp baking soda 1 tsp vanilla extract
1/2 tsp salt 1 ½ c fresh or frozen raspberries
2 eggs, lightly beaten
In a bowl, combine flour, sugar, baking powder, baking soda & salt. Combine eggs, yogurt, butter, lemon peel & vanilla; mix well. Stir into dry ingredients just until moistened. Do not over blend! Fold in raspberries. Fill greased or paper-lined muffin cups three-fourths full. Bake at 400F for 18-20 minutes or until muffins test done. Makes 1 dozen.
These are really yummy. You can substitute blueberries for the raspberries if you like.
From Patty’s recipe files.
CHAPTER NEWS…….
TNAC WINNIPEG CHAPTER NEWS….
JUST A REMINDER for the Winnipeg and area people and anyone else who would like to attend. The Trigeminal Neuralgia Association of Canada, Winnipeg Chapter presentation is on May 8th, 2003 from 7:00 p.m. to 9:00 p.m. with Dr. Anthony Kaufmann, Lecturer; at the Health Science Centre, Basic Science Building, Theatre B, Winnipeg. Please plan to attend your first meeting in Winnipeg.
TNAC TORONTO AND AREA NEWS….
The SARS problem in Toronto is still on high alert. Hopefully it will soon be over. We would like to send our Deepest Sympathy to those of you who may have lost a dear one. We will be advertising in our newsletter when Dana will be able to once again proceed with her meeting that was scheduled for April 26th, 2003.
NOTE to all Support Group Leaders:
If you wish to have any of your local Chapter’s news or events printed in the TNAC News, please email it to Marion and it will be included in the next issue. We need you to become a part of this newsletter so please help us out.
TRIGEMINAL NEURALGIA ASSOCIATION OF CANADA
LETHBRIDGE CHAPTER
WILL BE PRESENTING A LECTURE FOR THE GENERAL PUBLIC
AND MEDICAL/DENTAL PROFESSIONALS
LECTURER: DR. KENNETH CASEY
WHEN: JUNE 7TH, 2003
WHERE: LETHBRIDGE SENIOR CENTRE
500—11TH Street South
Lethbridge, Alberta
Refreshments Will Be Available
PLEASE MARK THIS DATE ON YOUR CALENDAR!!!!
Dr. Casey Bio:
Dr. Kenneth Casey is an Assistant Professor of Neurosurgery at Allegheny University of Health Sciences in Pittsburgh, PA. Dr. Casey received his bachelor’s degree from Georgetown University and his medical degree from New Jersey Medical School in Newark. After a neurological Surgery Residency at the University of Pittsburgh, Dr. Casey completed two fellowships at New Jersey Medical School, one in research and a second in critical care. He then became a postgraduate fellow in neurology at London’s Queensquare Hospital.
Dr. Casey is the author of numerous abstracts and journal articles and has made many presentations to professional colleagues on topics ranging from minimally invasive techniques, to seizure surgery, to treatment approaches for back pain.
Dr. Casey is also co-author of our Handbook “Striking Back” and is on the Medical Board of Directors for the Trigeminal Neuralgia Association in the U.S. Please bring your books and have Dr. Casey autograph them for you. We will also be having our handbooks “Striking Back” for sale. You may purchase them for $35.00.
TN STORIES
Bill Alderman--Niagara-On-The-Lake, Ont.
I had an MRI back in ‘87 hoping for an answer to a number of nervous system problems that had taken place over past number of years. At that time I was officially diagnosed with Multiple Sclerosis.
It was about ‘90 when I first experienced the facial pain. My G.P. prescribed Tegretol (200 mg). The intensity of the pain continued to increase. At some point I was referred to a neurologist. Each visit with the neurologist seemed to only result in directions to increase the med dosage. At some point Bacolflen was added to the daily meds. No relief. There has to be an answer somewhere. A second opinion was overdue.
The new neurologist immediately prescribed Solumed & Prednisone. Finally some relief - albeit brief, it was relief.
For the next 2 years - almost constant pain - acupuncture was tried - herbal remedies - Name it & I’m sure I tried it. Finally in April ‘98 I was referred to Dr. Gary Ferguson at the London Health Science Centre. After taking the assessment tests an appointment was made to perform the first Rhitzotomy. The first attempt did not work but the 2nd one did. The treatment left me totally PAIN FREE/MEDICATION FREE till September ‘00.
I was aware that this is not a permanent solution. However, I didn’t expect the TN pain to come back with such a vengeance. Before I knew it I was up to 1200 mg of Tegretol. An appointment was made with Dr. Ferguson. The third procedure was performed December ‘00.
As I write this I FEEL FANTASTIC-TOTALLY PAIN FREE. I’m quite aware that this procedure is not for everyone nor is it a permanent fix but it WORKED FOR ME. There will be no hesitation arranging a repeat visit with Dr. Ferguson at the first sign of pain.
No question, I’M AN ADVOCATE OF THE RHIZOTOMY!
Bill Alderman
Box 343
Niagara-On_The-Lake, Ont. L0S 1J0
Phone: 905-468-7710 email: walderma@becon.org (Permission to print address given)
Karen Bernard—Sherwood Park, AB.
Since I was a young child I have experienced excruciating pain in the upper part of my ear lasting 20 to 60 seconds. Holding & pushing my ear usually brought relief. Using cotton in my ear helped for awhile. Now I am in my early 60’s & for the past year I have had attacks sometimes lasting three or four days. Morphine won’t touch the pain & I have tried a drug used for epilepsy with no results except a severe depression as a side effect. I began to look at TMJ & have tried a splint, this has made little difference. I have found heat is soothing & I now use across the counter muscle relaxants & sometimes Valium although I try not to use this on an ongoing basis. The only trigger I appear to have is cold blowing air so air conditioning especially in the ceiling is out. This will guarantee an attack if I am exposed for very long. I have been very careful about the cold air & wrap my ear at night to keep it warm. This is only occuring in the left ear but from time to time I do get some sensation in the right which frankly scares me to death. If I had to put up with this pain on an ongoing basis I would go out of my mind. I have seen my local doctor & neurologist & I am awaiting an appointment with a brain surgeon. I have tried Physio for TMJ. Two odd symptoms that are recent is an increase in my diastolic BP & a blue vein that is sometimes visible running from my ear to my cheek. I am not sure if this is relevant. I sympathize with other sufferers of this as it can be very debilitation. I have been symptom free for about one month now. What a blessing. Looking forward to other comments.
Karen Bernard
31 Circlewood Dr.
Sherwood Park, AB T8A 0K5
(Permission given to publish Karen’s address)
Note from Marion: Karen has advised me that she will be seeing Dr. Kaufmann in early June.
*****************************************************************************************************
Here is a copy of the Press Release from Sweden regarding the acquisition of the Gamma Knife in Winnipeg.
PRESS RELEASE
First in Canada - Elekta's Leksell Gamma Knife (R) Expands Into New Healthcare Market
STOCKHOLM, Sweden, March 8 /CNW/ -- Elekta announced today the first acquisition of Leksell Gamma Knife (R) in Canada. The purchase decision of Leksell Gamma Knife (R) by Winnipeg Regional Health Authority (WRHA) is important for the Health Sciences Centre in Winnipeg and the entire country of Canada.
"The Premiers and Ministers of Health from Western Canada as well as the Chief Executive Officers from various regional health authorities are clearly excited about Winnipeg's acquisition of Leksell Gamma Knife (R), and are quite interested in doing what they can to support us," says Vice President and Chief Medical Officer at WRHA, Brock Wright.
In a country with a population of over 33 million people, the future of Health Science Centre's acquisition of Leksell Gamma Knife (R) looks bright.
"I've seen first-hand the types of patients that can be treated. And I must say that I've been remarkably impressed just over the last 5-6 years by the increasing use of Gamma Knife (R) Surgery for a broader set of indications and the cost-effectiveness of it. Typically with traditional open surgery, patients can spend 8-12 hours in OR, 2-3 days in ICU, and a week at least in the Neurosurgery ward -- but with Gamma Knife (R) Surgery they are in and out in the same day. We are cutting down our length of stay and cost of treatment. So in our system, similar to the English National Health System -- if we can save money in that area, then we can use those hospital beds and operating times to treat other neurosurgical patients that normally are on long waiting lists. I think that's the key," states Dr. Michael West, Head of Neurosurgery at the Health Sciences Centre and University of Manitoba.
Contrary to past perceptions that only large markets can support a Leksell Gamma Knife (R) system, Health Sciences Center in Winnipeg, Manitoba has found it to be cost-effective and is looking to establish this site as a center of excellence around Neurosurgery and Neurosciences in the province.
"Winnipeg is certainly not the biggest city in the country, but I think it has demonstrated that the Regional Health Authority is really committed to the Neurosciences, which is a result of some real teamwork and having a strong financial plan supporting the decision. I looked at all the supporting material for Leksell Gamma Knife (R), had the opportunity to use it, and overall think it is really an impressive tool. Gamma Knife (R) Surgery has a very well proven track record and anyone I've spoken to has been pretty impressed by Elekta's support," says Dr. West.
Elekta's Leksell Gamma Knife (R) system remains the Gold Standard in care and has proven to be a safe, reliable and cost-efficient tool in non-invasive neurosurgical procedures. Backed by over three decades of clinical experience and documented results, Leksell Gamma Knife (R) is a dedicated and complete solution for radiosurgery from a single provider. Currently, there are 157 installed Leksell Gamma Knife (R) units worldwide with 66 in the United States.
"Elekta is excited to have the first Gamma Knife (R) system installed in Canada and we look forward to developing and supporting the relationship we have with Winnipeg's Regional Health Authority, the Health Sciences Centre, and future Canadian partnerships," states Ray Rau, Vice President of Sales and Marketing, Elekta Neurosurgery.
Elekta is a world-leading supplier of advanced and innovative radiation oncology and neurosurgery solutions and services for precise treatment of cancer and brain disorders. Elekta's solutions are clinically effective, cost efficient and gentle to the patient.
Web site: http://www.elekta.com
LOTS O’ LAUGHS:
Two gentlemen from a retirement centre were sitting on a bench under a tree when one turns to the other & says, “Slim, I’m 73 years old now & I’m full of aches & pains. I know you’re about my age. How do you feel?”
Slim says, “I feel just like a new-born baby.”
“Really? Like a new-born baby?”
“Yep. No hair, no teeth, and I think I just wet my pants.”
Recently, when I went to McDonald’s I saw on the menu that you could have an order of 6, 9 or 12 Chicken McNuggets. I asked for a half dozen nuggets. “We don’t have half dozen nuggets,” said the teenager at the counter. “You don’t?” I replied. “We only have six, nine or twelve” was the reply. “So I can’t order a half dozen nuggets but I can order six?” “That’s right.” So I shook my head & order six McNuggets.
A lady at work was seen putting a credit card into her floppy drive & pulling it out very quickly. When I inquired as to what she was doing, she said she was shopping on the internet & they kept asking for a credit card number so she was using the ATM ‘thingy’.
Patty’s Ponderings and Miscellaneous Ramblings:
Please help us out with some content for our newsletter. We are looking for more recipes, articles of interest, etc. You can email them to me or Marion.
I have recently started a new job and hopefully it will be a little easier on my back. Standing on my feet all day was just too painful by the time my shift was over. Hopefully now (or so my hubby says) I won’t be so grumpy!
I have been working on a new logo for the TNAC and have come up with a pretty good idea. It still needs a little tweaking but hopefully it won’t be too much longer. We will still look at any ideas that you have though. Our new lapel pins are made and they look very nice.
Our weather has been just wonderful here - snow every few days, wind, cool one day & hot the next - I’d like to be a weatherman - you just make a guess & even if you are wrong, you still get paid! It snowed this morning again & we had a few inches on the ground when I woke up but now the temperature is about +5 - that’s southern Alberta for you!
Since you all like my snippets, silliness & hmmmms here are some more.
1) How long a minute is depends on what side of the bathroom door you're on.
2) Birthdays are good for you; the more you have, the longer you live.
3) Happiness comes through doors you didn't even know you left open.
4) If Wal-Mart is lowering prices every day, how come nothing is free yet?
5) Some mistakes are too much fun to only make once.
6) A truly happy person is one who can enjoy the scenery on a detour.
7) We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names, & all are different colors....but they all exist very nicely in the same box.
Bumper Sticker Snickers:
1) I don't suffer from insanity; I enjoy every minute of it.
2) I used to have a handle on life, but it broke.
3) I'm not a complete idiot - some parts are missing.
4) Out of my mind. Back in five minutes.
5) It IS as BAD as you think and they ARE out to get you.
6) Consciousness: that annoying time between naps.
7) Ever stop to think, and forget to start again?
8) Being "over the hill" is much better than being under it!
9) A hangover is the wrath of grapes
10) A journey of 1000 miles begins with a cash advance
11) STUPIDITY IS NOT A HANDICAP. Park elsewhere!
12) He who dies with the most toys is nonetheless dead
13) The trouble with life is there's no background music.
Happy Mother’s Day to all you mom’s.
That’s it for this month.
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 Calgary Contact Info:
Marion Guzik Marilyn Najm
TNAC President P.O. Box 2376
1514 Lakemount Blvd. South Banff, AB T0L 0C0
Lethbridge, AB T1K 3K4 Phone: 403-762-3650
Phone: 403-327-7668 EMAIL: mguzik@telus.net 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