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.
NEXT MEETINGS....
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Saturday July 12, 2003 |
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2:00 p.m. @ Senior’s Centre |
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Saturday Aug. 9, 2003 |
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2:00 p.m. @ Senior’s Centre |
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
Special Notice: Member’s Only:
Our first General Meeting will be held on August 9th, 2003 at 2:00 p.m. at the Lethbridge Senior Centre, 500-11th Street South, Lethbridge, Alberta. Discussions regarding goals and the election of officers for the next General Meeting which will be held in June 2004. Please R.S.V.P. to Trigeminal Neuralgia Association of Canada, 1514 Lakemount Blve., Lethbridge, Alberta T1K 3K4 by July 30th, 2003.
Special Note:
As this is YOUR NEWSLETTER, published by the Lethbridge Chapter of the Trigeminal Neuralgia Association of Canada - we would like to have input from ALL ACROSS CANADA. Please submit your articles to Patty or Marion. We will accept almost all items of interest. Have you found a tip to help with doing housework when you are having a TN attack? Do you have a favorite recipe? Have you discovered something that helps to ease your pain? Do you have a TN story? Do you wish to thank a special person who has given their time or help? PLEASE submit some items of interest so we can keep this newsletter interesting to all of you right across Canada. If you wish this newsletter to continue, please help out.
NEW MEMBERS FOR THE MONTH OF JUNE 2003
ALBERTA
Ford Workes
Jim Van Loo
Manitoba:
Nova Scotia:
Cathy Swinkles
Donations Received:
A.M. (Peter) Miller
Brenda Sharp
Jake Groenenboom
Don Brewer
Cathy Swinkles
GIFT IN MEMORY OF…..
Susan Raphaelson’s Mother
Diane & Ronald Ennis
HAPPY BIRTHDAY’S TO ALL THOSE WITH JULY CELEBRATIONS!
Belated Congratulations
Belated Congratulations to Abe and Erna Janzen on their 49th Wedding Anniversary, June 20, 2003.
Notes From Marion’s Desk:
My apologies to those of you who have been waiting for replies to your emails & letters but this past month & a half has been an extremely busy time for me. I am very happy to report that it has all been well worth it as we had an exciting month plus. The two presentations scheduled in June were very successful.
Dr. Kenneth Casey, whom we have been trying to get for over a year, was in Lethbridge on June 7th, and his presentation “Trigeminal Neuralgia, 2003, An Update” was excellent. I have had numerous calls telling me how much they enjoyed it & that it was presented in a way they understood. There were 4 dentists in attendance of which I was very happy. One of them informed me that they could go to one of their lectures for 4 hours & not get as much info as Dr. C. gave them in 1 hr. Feedback like this is truly appreciated. The question & answer period was a real highlight. A long line of people wanting personal information was also addressed by Dr. Casey.
Dr. Anthony Kaufmann’s presentation “Controversies in the Treatment of Trigeminal Neuralgia & The Introduction of Canada’s First Gamma Knife” was held June 28th in Calgary. The Gamma Knife will be in operation in November. I am very pleased to report that there were Doctors in attendance at this meeting and Dr. K. presented an exceptional presentation. The question & answer period was also a highlight with a long line of people wanting personal information.
We would like to put Dr. Casey’s & Dr. Kaufmann’s presentations on one VHS tape. Should anyone want to purchase this, please let me know & I will get them done for you. I don’t know the cost as yet but will try & do our best. We will have to charge postage. Please email me or phone 1-403-327-7668.
Mary Nellis from Medicine Hat was in attendance & showed us the hood that she invented for those of us that cannot tolerate wind, air conditioning etc. It is an excellent hat for us & if anyone should want to purchase one—please give Mary a call at 1-403-526-4296 and I am sure she will help you.
Until next month, have a good pain free summer and hope you had a Happy July 1st.
Marion
RECIPES...............
CHERRY ALMOND NANAIMO BARS
Submitted by Mona Wells
Bottom Layer:
1/2 c. (125 ml) butter
1/4 c. (50 ml) white sugar
1/3 c (75 ml) cocoa
1 tsp. (5 ml) vanilla
1 egg beaten
1 c. (250 ml) shredded coconut
1 3/4 c. (425 ml) graham wafer crumbs
1/2 c. (125 ml) almonds chopped
Filling:
1/2 c (50 ml) softened butter
2 tblsp. Marachino cherry juice
1 tsp (5 ml) almond extract
2 1/2 c (625 ml) sifted icing sugar
1/3 c (75 ml) marachino cherries chopped
Top Layer:
4 squares semi sweet chocolate
2 tblsp (30 ml) butter
Instructions:
Bottom Layer: Combine butter, sugar, cocoa, vanilla & beaten egg in a saucepan over low heat stirring constantly until mixture begins to thicken. Remove from heat. Stir in coconut, graham crumbs & almonds. Press mixture firmly into a greased 8” square pan. Chill in fridge for 1 1/2 hrs.
Filling: Cream butter, cherry juice & almond extract. Gradually beat in icing sugar to a smooth spreading consistency. Stir in cherries. Spread over first layer. Chill until firm (1 hr.).
Top Layer: Melt chocolate and butter in saucepan stirring constantly. Spread over filling. When dried, cut into squares.
Special Note from Marion
A Special Thank You to the following who donated to Dr. Casey’s Presentation:
Safeway Pharmacies for again donating the delicious 3 trays of sandwiches.
Save-On Foods for the tray of excellent baked goodies.
The Pepsi Bottling Group for again donating the soft drinks.
Lethbridge Support Group for the fruit & cheese tray and the coffee.
Thank you very much as this was much appreciated by all that attended.
I would also like to thank the members of our Lethbridge Support Group; Gwen, John, Mona, Fred, Erna, Don & Patty for all the help received in distributing the posters and helping with the set-up of the presentation and manning the food & display tables and to Zenon for Video Taping the presentation.
A special Thank You to the following who donated & gave of their time for the Calgary Presentation with Dr. Kaufmann.
Keller Foods of Banff, Alberta for the delicious tray of veggies & the cheese & fruit tray.
Marilyn Najm, Banff for the Cracker tray & bottles of water.
Heather & Debra from the Garden Restaurant of the Foothills Hospital who so kindly brewed & delivered the coffee to us.
Zenon for video taping the presentation.
Last but not least, to Bert & Patti for all your help in getting out the posters for this presentation, answering phone call, etc and to Marilyn for all her work in getting the food, book & picking me up at the Bus Depot, and a Special thank you to Dr. Joseph Alpine for making the arrangements for the Clara Christie Theatre, parking & other numerous things that had been requested. This could not have been accomplished had it not been for the willingness of your help as it is very hard to co-ordinate from a distance.
Thank you one and all.
The gifts that were presented to Drs. Casey & Kaufmann were as follows:
The TNAC pin - presenter Marion
Book entitled “The Canadian Rockies” signed by the author - presenter Marilyn Najm of Banff. This book was donated.
Plaque entitled “The Inukshuk” - presenter Don Brewer.
THE INUKSHUK
A Meaningful Messenger
The word Inukshuk translates into “stone man that points the way”.
Lifelike figures of rock, erected by the Inuit, stand along Canada’s most Northern shores.
The stone man was used to serve as directional markers on the treeless horizons to guide those who followed.
As such, they stand as eternal symbols of the importance of friendship & remind us of our dependence on one another & the value of strong relationships.
This Inukshuk is given as a gift today to symbolize such importance.
If any single stone is removed from an Inukshuk, the structure becomes weaker, and so, each individual in a team is necessary for its strength.
TIPS FROM ANDY ROONEY
1) Three Little Words That Work!!!
The three little words are: “Hold On Please……”
Saying this, while putting down your phone & walking off (instead of hanging up immediately) would make each telemarketing call so much more time-consuming that boiler room sales would grind to a halt.
Then when you eventually hear the phone company’s ‘beep-beep-beep’ tone, you know it’s time to go back & hang up your handset which has efficiently completed its task.
These three little words will help eliminate telephone soliciting.
2) Do you ever get those annoying phone calls with no one on the other end?
This is a telemarketing technique where a machine makes phone calls & records the time of day when a person answers the phone.
This technique is used to determine the best time of day for a “real” sales person to call back & get someone at home.
What you can do after answering, if you notice there is no one there, is to immediately start hitting your # button on the phone, 6 or 7 times, as quickly as possible. This confuses the machine that dialed the call & it kicks your number out of their system.
Since doing this, my phone calls have decreased dramatically.
3) Another Good Idea: When you get “ads” enclosed with your phone or utility bill—return these “ads” with your payment. Let the sending companies throw their own junk mail away.
When you get those “pre-approved” letters in the mail for everything from credit cards to 2nd mortgages & similar type junk, do not throw away the return envelope. Most of these come with postage-paid return envelopes, right? It costs them more than the regular 47 cents postage “IF” & when they receive them back.
It costs them nothing if you throw them away! The postage was around 57 cents before the last increase & it is according to the weight. In that case, why not get rid of some of your other junk mail & put it in these cool little postage-paid return envelopes. One of Andy Rooney’s (60 minutes) ideas. Send an ad for your local chimney cleaner to American Express. Send a pizza coupon to Citibank. If you didn’t get anything else that day, then just send them their blank application back!
If you want to remain anonymous, just make sure your name isn’t on anything you send them.
You can even send the envelope back empty if you want to just keep them guessing.
Eventually, the banks & credit card companies will begin getting their own junk back in the mail.
Let’s let them know what it’s like to get lots of junk mail & best of all they’re paying for it….Twice!
I received the above tips from a friend of mine and I tried the telephone bit and it works!
Marion
BURNING MOUTH SYNDROME; DIAGNOSIS AND TREATMENT
ORAL PATHOLOGY DIAGNOSTIC SERVICE - MARCH 1995
Imagine the frustration of having a disorder that cannot be definitively diagnosed, interferes with eating, becomes progressively worse with time, has no know cause, and for which there is no effective treatment. Such is the dilemma for both the patient with burning mouth syndrome (BMS) & the doctor who has to treat the case.
Clinical Features: BMS is found almost exclusively in postmenopausal females. The most common complaint is a “burning sensation that is not particularly painful but is annoying”. Typically the tongue is affected, but the anterior palate & lips are also frequently involved. Patients will sometimes describe “bumps” that have been intermittently present in the affected area. Acidic foods such as tomatoes & orange juice cause considerable distress. A “metallic” taste is also a frequent finding. Some degree of xerostomia is usually present. However, the oral mucosa appears normal.
Psychologic Features: It has been our experience that BMS patients are very tidy, orderly people who are concerned about their social appearance. Usually they are well-educated & often their social history reveals a major change in their lives at the time the symptoms first appeared. Various psychologic profiles have consistently indicated that most BMS patients have significant deviations in certain personality traits.
Diagnosis: It is not possible to establish a diagnosis of BMS by one particular test but the combination of complaints & lack of mucosal change is highly suggestive. There is no advantage to doing a diagnostic biopsy. Although many of these patients are postmenopausal & are taking estrogen replacements, there does not seem to be much value in doing serum hormone levels because most of them are normal.
Treatment: Reassurance is critical so that the patient understands that this condition is not premalignant & it is NOT transmissible. However, the patient should be informed of the chronicity of the problem & that there is no “cure”. It has been our experience that although the symptoms are cyclical in severity, there is a gradual progression toward greater severity.
Many medications have been used in the treatment of BMS: antidepressants, antifungals, steroids, vitamin supplements & iron supplements. None of these are uniformly effective & the patient needs to understand that partial reduction in symptoms is the only reasonable therapeutic goal. Frustration is quite common among BMS patients which leads to doctor “shopping”. For one of our patients we were the 29th doctor consulted.
Oral and Maxillofacial Pathology Diagnostic Service.
Note: I was asked for information on Burning Mouth Syndrome and hope this helps. Anyone wanting more info may log on to www.dentistry.vcu.edu/departments/opath/newslets/n1395.html
Marion
ASK THE SPECIALIST:
1) Is there anyone studying using stem cells to fight TN in Canada?
2) Has there been any research done regarding any links between Shingles and TN and if so, what are the results of such findings?
3) I have Arterial Vessel Malformation (AVM) in the head. Is it possible to do the surgery MVD? Do you know anyone who does the MVD's in Saskatchewan? Had it in right side of face (neuralgia). Then got nerve snipped - Now in left side of face (neuralgia). Twitching now in right side. Lifts whole side of face.
TN STORY…..
MY TN STORY…..
Ray and Betty Trudeau, Abbotsford, B.C.
Hi, this story of living with TN is about Ray and Betty Trudeau, who have both suffered with TN, I think perhaps a
rarity.
Betty first started having facial pain while we were living in FL. around 1982, and our first experience with a medical professional was a dentist, and Betty went through a number of dental treatments to no avail including a special dental plate for TMJ. At one time, they had set Betty up with some sort of a gizmo that used to give electrical shocks to her cheek, we tried acupuncture and probably a few others that escape me now.
Finally, we were sent to a Neurologist, and the problem was diagnosed as TN and that started the medication treatment, tegretol was first, and that worked for a period of time, then we were referred to Shands teaching hospital, which is a part of the University of Florida in Gainesville. After many tests it was suggested that the best treatment, among others, was Micro Vascular decompression surgery, we were explained the risks and the benefits and decided to go with this procedure.
The MVD worked for about a year, and then the pain returned with a vengeance, Betty had a Ritzatonnamy in Gainesville, and again it worked for a period of time but then back on Tegretol when the pain returned.
By this time we had moved to Vancouver and was referred to a DR at the VG and had another Ritzatonnamy, which turned out to be a horrible experience for Betty after the treatment she received in Florida.
About this time 1996-97 I also began experiencing facial pain and went to a Neurologist right away and was also diagnosed with TN. Now I knew what it was like for Betty, the electric like shock pain, that can come like a thief in the night. This lasted until I was on about 1000MG of Tegretol, then I had to do something. I found the Gamma Knife on the Internet in Seattle Wa. and because I been through all Betty’s possible solutions, and the GN was non invasive, I opted for this solution and it proved the right one for me, no pain since the procedure. Before Betty could be pain free she had to undergo two GN procedures before she had the same result. It has now been close to four years since the procedure and she is still pain free, and medication free.
And that’s our story …..
Over the years, after being on many web sites for TN &Hemi facial spasm, and communicating with a lot of people over a span of twenty years or so, the lesson that always seemed to appear was that if you do decide to opted for a MVD procedure, make sure the surgeon has a long track record concerning this particular procedure and not just one or two a year . Thanks
For any Questions ,contact ray.trudeau@shaw.ca or 604-852-8263
Benefits of Water:
We all know that water is important. 75% of all Americans are chronically dehydrated. (Likely applies to half the world population) In 37% of Americans, the thirst mechanism is so weak that it is often mistaken for hunger. Even mild dehydration will slow down one’s metabolism as much as 3%. One glass of water shut down midnight hunger pangs for almost 100% of dieters studied in a University of Washington study. Lack of water is the #1 trigger of daytime fatigue. Preliminary research indicates that 8-10 glasses of water a day could significantly ease back & joint pain for up to 80% of sufferers. A mere 2% drop in body water can trigger fuzzy short-term memory, trouble with basic math & difficulty focusing on the computer screen or on a printed page. Drinking 5 glasses of water daily decreases the risk of colon cancer by 45% plus it can slash the risk of breast cancer by 79%, and one is 50% less likely to develop bladder cancer.
ARE YOU DRINKING THE AMOUNT OF WATER YOU SHOULD EVERY DAY!!!!!
JOKES & SILLINESS…..
Instead of having some Jokes and Silliness in this issue, I thought that we would have something with a touch more meaning.
A Powerful LIST To LIVE By ....
The Most Destructive Habit ………………………. WORRY
The Greatest Joy...............................................…..... GIVING
The Greatest Loss………………………………….. LOSS OF SELF-RESPECT
The Most Satisfying Work………..………………... HELPING OTHERS
The Ugliest Personality Trait…………….....…....….. SELFISHNESS
The Most Endangered Species……………..…...…... DEDICATED LEADERS
Our Greatest Natural Resource.............………….…. OUR YOUTH
The Greatest "Shot In The Arm"....…………...…..... ENCOURAGEMENT
The Greatest Problem To Overcome............……...... FEAR
The Most Effective Sleeping Pill......………..……... PEACE OF MIND
The Most Crippling Failure Disease........……...…... EXCUSES
The Most Powerful Force In Life…….............…...... LOVE
The Most Dangerous Pariah....…….…............…..... A GOSSIPER
The World's Most Incredible Computer......…..…… THE BRAIN
The Worst Thing To Be Without.........….....…........ HOPE
The Deadliest Weapon.................................……...... THE TONGUE
The Two Most Power-Filled Words………………. "I CAN"
The Greatest Asset........................................…….... FAITH
The Most Worthless Emotion...............………........ SELF-PITY
The Most Beautiful Attire....................………......... SMILE
The Most Prized Possession.....………........…........ INTEGRITY
The Most Powerful Channel Of Communication.... PRAYER
The Most Contagious Spirit….………................... ENTHUSIASM
The Most Important Thing In Life.......…………… GOD
I am uncertain as to the Origin Of This List, but it is truly a
Treasured Keepsake & something to Live By ......
PHOTO
Thought you might all enjoy this photo that Marilyn Najm took of Marion and Dr. Casey at his Lethbridge, AB presentation.
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.
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.
Patty’s Ponderings and Miscellaneous Ramblings:
Howdy all. Hope your summer is progressing along nicely. I was forwarded the following from one of our members and thought you all might enjoy it.
HOW OLD ARE YOU?
My dad was cleaning out my grandmother’s house & he brought me an old Royal Crown Cola bottle. In the bottle top was a stopper with a bunch of holes in it. I knew immediately what it was - my daughter had no idea. But I knew it as the bottle that sat on the end of the ironing board to ‘sprinkle’ clothes with because we didn’t have steam irons.
How Many Do You Remember?
Headlight dimmer switches on the floor.
Ignition switches on the dashboard.
Heaters mounted on the inside of the fire wall.
Pant Leg Clips for bicycles without chain guards.
Soldering irons you heat on a gas burner.
Using hand signals for cars without turn signals.
Wax Coke-shaped bottles with colored sugar water.
Candy cigarettes.
Soda pop machines that dispensed bottles.
Coffee shops with tableside jukeboxes.
Home milk delivery in glass bottles & cardboard stoppers.
Party lines.
Newsreels before the movie.
Butch wax.
Peashooters.
Howdy Doody.
45 rpm records.
Metal ice trays with lever.
Packard’s.
Roller Skate keys.
Cork popguns.
Drive-ins.
Wash tub wringers
And a couple more that I personally remember from my younger years growing up in Toronto:
Getting your ice in big blocks delivered to your house.
Having the ‘coal man’ come during the winter to deliver your coal for home heating.
Hand milking the cows and then having to walk a few miles to the one-room school house that housed grades 1-12 (those poor teachers!!)
The old ‘pot-bellied’ stove in the middle of our living room that supplied the house heat. My brother & I used to spread margarine on a piece of bread & toast it on the sides - made my mom pretty mad!
Having to add the little color pack to the margarine.
Mom pouring water into the reservoir of our cook stove.
And one of the best things about ‘modern technology’ has just simply got to be ‘indoor plumbing’ - those nightly trips outside were pretty cold in the middle of winter!
Thought you all might enjoy these. Anyone want to send in more? Till next 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