Trigeminal Neuralgia Association

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.

DISCLAIMER

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 February 8, 2003

2:00 p.m. @ Senior’s Centre

Saturday March 8, 2003

2:00 p.m. @ Senior’s Centre

DONATIONS

Donations to the TNAC are gratefully received. Your monetary support helps defray the cost of TNAC News, copies, supplies, postage, etc. The TNA National Headquarters does not share in the funding of our Association. We now have obtained our Incorporation as a Society but NOT our Charitable Organization Number & therefore we cannot issue Tax receipts as yet. Your cheques can now be made payable to Trigeminal Neuralgia Association of Canada, 1514 Lakemount Blvd., Lethbridge, Alberta T1K 3K4

CALLING ALL WITH ARTISTIC TALENTS!!!!!!

Do we have any artists out there? We are in need of a new logo for our TN Assoc. of Canada. The logo must be fairly easy to reproduce as we plan to produce TNAC pins at some point in the future. Black and white images or maximum of 3 colors. Please submit any ideas to Marion at her address on the last page of the newsletter. We hope to have lots to choose from!!!

Happy Birthday:

Hunter Walker – February 23

Last Meeting News:

Wow!!!! What a turnout for our letter-stuffing bee. I was so pleased - 20 people were there. John Melec was working so he sent his wife Deanne and Hugh Laycock couldn’t attend so he sent his daughter-in-law Carol. We all had a great time and the refreshments were delicious. We would like to welcome Dorothy Illingworth and her daughter-in-law Shirley to our group.

Our handbook Striking Back was discussed and 12 more copies have been ordered. Three have been sold and I will let you know when they are received. We unanimously agreed to give copies to the Lethbridge Public and Coaldale Libraries to be used in their Medical section.

This was our line-up for the stuffing bee:

Folders: John Edwards, Don Brewer, Rae Bastian, Erna & Abe Janzen

Stuffers: Mona Wells, Katy Edmundson, Bernard Bastian, Shirley & Dorothy Illingworth

Sealers: Deanne Melec, Mona Leslie, Dorothy & Shirley Illingsworth

Labels: Deanne Melec

Writers: Patty Moyer, Susan Brewer, Carol Laycock, Tovi & Jim Nalder

Stampers: Beverly Ens, Rae Bastian

Checkers: Mona Wells, Erna Janzen

Gophers: Gwen Edwards

Refreshments Plus: Marion Guzik, Co-Ordinator

John & Gwen took all the letters, even the ones I was not supposed to touch, & mailed them for us. Those letters, I might add, did not come back - How about that Patty!!

Gwen Edwards served a delicious variety of baked goodies. Mona Leslie supplied the coffee & drinks. We were finished in 2 hrs & stuffed over 650 letters. I am very proud of you all. Thanks so much as you have made many TN sufferers aware of the TNAC & hopefully Support Groups will be formed in many areas of Canada.

IMPORTANT NOTE:

IF YOU HAVE NOT RECEIVED A LETTER WITH A QUESTIONNAIRE ENCLOSED PLEASE LET MARION KNOW (ADDRESS ON LAST PAGE). We had a bit of a glitch in our mailing and some of the glued on labels came off (I think that the glue must have been too old!). We are trying to rectify this. If you should happen to receive a duplicate, please ignore it.

We are trying to establish a database so please remember to return your questionnaire (by regular mail). In this way, it will help us to serve you better. Should you have previously paid your Membership fees - Please mark as such. The sooner we get back all the questionnaire’s, the quicker we can complete the database. Thank you to all for your co-operation.

Marion

NEW MEMBERS FOR THE MONTH OF FEBRUARY 2003

Alberta

B.C.

Manitoba

Ontario

John Baxandall

John Block

Bruce Cousens

Arlayne Davis

Jim Nalder

Kerry Snider

Dorothy Stoutjesdyk

Eleanor Wetherelt

Mary Yates

Edgar Campbell

Poppy Dawson

Nadia Lewis

Janice McDonald

Jean Reimer

Dorothy Shields

Kimberly Allen

Pat Pozerniuk

Helen Amos

Albert Cummings

Sherry Davis

Marguerite Devos

Robert Dunlop

Keith Ennis

Don Fletcher

Lily Goldman

Lee Hughes

Rose Marie James

Ivan MacDonald

Katherine McCran-Leach

Shirley McDonald

Allan Miller

Margaret Nikiforuk

Kurt Otto

Mary Payeur

Susan Rawlins

Heather Scully

Kathleen Somers

Rev. Frank Stone

Pearl Sullivan

Jane Tilden

Cheryl Thompson

Phyllis Waugh

QUEBEC

Daniel DesJardins

Brennan Jones

Elaine Stahl

DONATIONS RECEIVED

Edgar Campbell

Albert Cummings

Robert Dunlop

John Edwards

Clara Greenberg

Hugh Laycock

Nadia Lewis

Diane Lieptke

Margaret Nikiforuk

Lydia Penner

Dorothy Shields

Kathleen Somers

Phyllis Waugh

Mona Wells

Eleanor Wetherelt

STRIKING BACK SALES: 1

“My Best Friend”

This story is of two friends that were walking through the desert. During some point of the journey they had an argument & one friend slapped the other one in the face. The one who got slapped was hurt but without saying anything, wrote in the sand “Today My Best Friends Slapped Me In The Face”. They kept on walking until they found an oasis where they decided to take a bath. The one who had been slapped got stuck in the mire & started drowning but the friend saved him. After he recovered from the near drowning, he wrote on a stone “Today My Best Friend Saved My Life”. The friend who had slapped & saved his best friend asked him “After I hurt you, you wrote in the sand & now you write on a stone, why?” The other friend replied “When someone hurts us we should write it down in sand where winds of forgiveness can erase it away. But when someone does something good for us we must engrave it in stone where no wind can ever erase it.”

LEARN TO WRITE YOUR HURTS IN THE SAND & TO CARVE YOUR BENEFITS IN STONE.

They say it takes a minute to find a special person, an hour to appreciate them, a day to love them, but then an entire life to forget them

.Notes From Marion’s Desk:

I want to welcome everybody to the TN Assoc. of Canada.

We have successfully completed our letter-stuffing bee & I am so pleased at the number of questionnaires I have received back from our TN Friends in 2 short weeks. I have had numerous emails and phone calls. If you have not received a reply as yet, please do not get discouraged, as I am trying to contact everyone. To those of you who have sent in your Memberships/Donations your name appears in the newsletter so that you know it has been received.

Thank you everyone for your kind remarks & congratulations. By all accounts, it is apparent that a TN Organization was needed in Canada. I hope that we can be of help to you all by setting up Support Groups in your area. This will take time but I am confident that if we all work together it will become a reality.

We are trying to set up a proper database & when that is partially completed we can then begin getting regions organized. Your questionnaires need to be returned in order to accomplish this. We have had numerous letters returned with moved, no such address, deceased, etc. we also had a small glitch in our labels, some of them came off the envelopes. If you know of someone who should have received a letter, please let us know and one will be sent out to them.

Patty is setting up the database for us & Susan Brewer is doing the labels to send out the newsletters. Great job you gals are doing.

I received a call from Dana Lavrence regarding the meeting which was held in Toronto on January 25. By all accounts it was a terrific success. Attendance was over 200 and Dr. Kaufmann and Dr. Tymianski’s presentations were wonderful. I also received an email from Carol Horvat, St. Catherine, Ont. Relating how wonderful this meeting was. Congratulations again to both of you for organizing this great presentation.

There is one thing that I have noted & that is our GP’s & Dentist’s are not attending these sessions & we have to get them interested in us. I suggest that you photocopy any material you have on TN & give it to them. We have to be more assertive & let them know that we also need help, even though we are in the minority (but we are increasing in numbers). We have to get this info to them so that they will refer us to a neurologist or neurosurgeon much faster than what they are doing. Together we can & will make a difference!

I have some very good news that was passed on to me from Irene Klassen of Regina. Irene informed me that Hope Air is a non-profit organization who’s intent is that no one in Canada goes without medical treatments because of distance. This means that anyone in Canada who has to go anywhere to have an operation may apply to them for assistance for travel. This is just great, so I mentioned it to Patty & she got on the net & found out more about this. Please look in Patty’s Ponderings to find out more about this very interesting information. Thank you so much Irene for sharing this information with us. I was unaware that anything like this existed.

I’ve also received some inquiries from people who have seen our newspaper announcements in the Miramichi Leader, Miramichi, N.B. and Kitchener Record, Kitchener, ON. We have responded to these requests and I hope we will receive many more inquiries. Thank you notes have been sent to both of these newspapers.

Till next time, have a great month.

Marion

HEMIFACIAL SPASM

Hemifacial spasm is a condition similar to trigeminal neuralgia & is due to an abnormal discharge of another nerve called the “facial nerve”. In trigeminal neuralgia the abnormal discharge is in a pain bearing trigeminal nerve. In hemifacial spasm the abnormal discharge is in the facial nerve which supplies the muscles of the face & thus causes abnormal twitching or spasm of the muscles of the face.

No drug has proven effective in preventing or stopping hemifacial spasm. Muscle relaxants & the drugs used for trigeminal neuralgia commonly are give to patients with hemifacial spasm, however, they rarely help. In the past, attempts were made to cut or crush the branches of the facial nerve. However, these destructive procedures were associated with facial paralysis & when the paralysis recovered, the spasms returned.

One form of creating damage to the facial nerve now in current use involves injecting a bacterial toxin into the nerve. This results in relief of the spasms by causing weakness of some muscles of the face. It often is necessary to repeat the injections after two to six months.

The most effective treatment of hemifacial spasm is a vascular decompression procedure of the facial nerve. The procedure is similar to the vascular decompression procedure described in the section on the treatment of trigeminal neuralgia, however, this procedure is directed to the facial nerve approximately one-half inch away from the trigeminal nerve. The site of the skin incision & skull opening are nearly the same for trigeminal neuralgia & hemifacial spasm, however, in hemifacial spasm the facial nerve is exposed.

The risks of this operation are the same as those described in the section on vascular decompression operations for trigeminal neuralgia. The operation relieves the spasm permanently in the great majority of patients, however, as with trigeminal neuralgia, the problem may persist or recur in a few patients in spite of this form of treatment. The vascular decompression operation is the most effective, permanent treatment for hemifacial spasm.

For further information please contact Dr. Albert Rhonton, Jr. MD, Department of Neurological Surgery, College of Medicine, University of Florida, P.O. Box 100265, Gainesville, FL. 32610-0265 (352) 392-4331.

The appearance of the face with hemifacial spasm.

RECIPE ...............

Baked Spaghetti (Patty’s Kitchen)

1 cup onion, chopped

1 cup bell pepper, chopped

1 Tablespoon butter or margarine

1 large can (about 28 oz) tomatoes with liquid, chopped

1 can (6 oz) mushroom stems and pieces, drained -or- use

fresh that you have sautéed in butter.

1 can (4-oz) sliced ripe olives, drained (optional)

2 teaspoons dried oregano

1 lb. ground beef, browned and drained

12 oz. spaghetti, cooked and drained

2 cups shredded Cheddar cheese

1 can (10-3/4 oz) Cream of Mushroom soup, undiluted

1/4 cup water

1/4 cup grated Parmesan Cheese

1) In a large skillet, sauté onion and green pepper in butter (or margarine) until tender.

2) Add tomatoes, mushrooms, olives, oregano and ground beef. Simmer, uncovered for 10 minutes.

3) Place half the spaghetti in a greased 13" x 9" x 2" baking dish. Top with half of the vegetable mixture. Sprinkle with 1 cup of shredded Cheddar cheese. Repeat layers.

4) Mix the soup and water until smooth; pour over the casserole. Sprinkle with Parmesan cheese. Bake, uncovered in a 350-degree oven for about 35 to 40 minutes, or until heated through.

Serves 8. YUMMY!!!!

WISDOM FROM THE 1st GRADE:

A first grade teacher collected well known proverbs. She gave each child in her class the first half of a proverb & asked them to come up with the remainder of it. Their insight may surprise you!

Strike while the………………….….bug is close

Don’t bite the hand that…………….looks dirty

No news is………………………......impossible

A miss is as good as a…………...…..Mr.

You can’t teach an old dog new …..Math

Love all, trust…………………….….me

The pen is mightier than the…..….....pigs

An idle mind is……………………....the best way to relax

Where there’s smoke there’s………...pollution

A penny saved is………………..…...not much

None are so blind as………………....Stevie Wonder

And the favorite……

Better late than…………….….…….pregnant

Patty’s Ponderings and Miscellaneous Ramblings:

As Marion mentioned, I have done some research on HOPE AIR. I knew of Corporate Angels which is an organization in the U.S. that arranges free flights for cancer patients on Corporate jets. I didn’t realize though that Canada has something very similar. The non-profit organization is called HOPE AIR. They will assist Canadians from every province, all walks of life, from all age groups & represent a wide variety of illnesses. They arrange flights using empty and/or donated seats on both commercial & corporate aircraft. The main airlines used are Air Canada & WestJet but there are others too including private planes. Their vision is that one day no one will have to forego necessary medical diagnosis or treatment because of an inability to travel to care. The requirements for assisted flights are: 1) You must be a Canadian citizen or landed immigrant living in Canada.

2) Demonstrate financial need.

3) Have a scheduled appt. for medical treatment covered under a provincial medical plan.

4) The appt. must be at least 2-3 weeks away to allow time to arrange transportation.

5) Pay a $25.00 processing fee.

When you apply, you will need certain items of documentation. If you wish more information on this program you can get in touch with me or directly with them at the address below. I have been in touch with Corrie Fraser, the Executive Director & will be sending her more information on TN as she has requested. She has indicated to me that they would be pleased to be able to help our sufferers. I have also offered to volunteer some of my computer skills to assist them in any way that I can.

Their contact information is:

HOPE AIR

Proctor & Gamble Building, 4711 Yonge Street

Toronto, ON M2N 6K8

416-222-6335 (phone)

416-222-6930 (fax)

Email: mail@hopeair.org

Other ramblings from me: 1) I’m still working on the web site design - has anyone out there had much to do with designing these? Any suggestions are welcome! 2) I am also working on obtaining financial grants to help support our organization - again, any help is appreciated if you know of any funding agents or grants available. Just email me! 3) We need a new logo - all designs can be sent to either myself or Marion for consideration. 4) I’m working on compiling a complete database for all the TNAC members. 5) I’m making a list of ideas for fundraising events to be held by us – any ideas? Submit them to me!

Don’t forget to send your questionnaire’s back to Marion. She needs the actual form returned to her so that we can compile our database. If you already paid your membership, please indicate that – don’t send it in again!

That’s all for this month!

Patty

Accident Excuses:

These are actual statements found on insurance forms where car drivers attempted to summarize the details of an accident in the fewest words possible:

1. Coming home, I drove into the wrong house and collided with a tree I don't have.

2. The other car collided with mine without giving warning of its intentions.

3. I collided with a stationary truck coming the other way.

4. A truck backed through my windshield and into my wife's face.

5. A pedestrian hit me & went under my car.

6. The guy was all over the road. I had to swerve a number of times before I hit him.

7. I pulled away from the side of the road, glanced at my mother-in-law, and headed for the embankment.

8. To avoid hitting the bumper of the car in front, I struck the pedestrian.

These people do not deserve to have a license, do they?

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

THE TN NEWS

FEBRUARY 1, 2003

Volume 3, Issue 2

DISCLAIMER

DONATIONS

QUEBEC

Patty