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 January 11, 2003

Envelope Stuffing

2:00 p.m. @ Senior’s Centre

Saturday February 8, 2003

General Meeting

2:00 p.m. @ Senior’s Centre

DONATIONS

Donations to the Lethbridge Support Group will be gratefully received. Your monetary support helps defray the cost of TN News, copies, supplies, postage, etc. The Trigeminal Neuralgia Association National Headquarters does not share in the funding of our local support group. We now have obtained our Incorporation as a Society Number but NOT our Non-profit Organization Number so your cheques can now be made payable to Trigeminal Neuralgia Association of Canada. The address will remain the same: Marion Guzik; 1514 Lakemount Blvd.; Lethbridge, Alberta T1K 3K4

An Urgent Plea…

Calgary and District Members

I have been in contact with Dr. Casey & Dr. Kaufmann re their visit to Lethbridge. I have asked for May 31, 2003 to have this presentation & am awaiting their response. Dr. Kaufmann would like to have a presentation in Calgary & could possibly arrange for a venue at the University or Foothills Hospital & perhaps get additional speakers from the field of neurology/pain management & oral facial surgery/dentistry & this could & would be our first TNAC Symposium. This meeting would have to take place either the Friday night May 30 or Sunday afternoon June 1.

I am trying very hard to set up a meeting with some of the Calgary people but so far have not had any success. If anybody in Calgary would help me do this, I would be most grateful as this would be a great time to get our Support Group together again in Calgary. Please let me know ASAP if you would be willing to help me set up a meeting & I would come to Calgary to fill you in on the details. You may email me—Marion Guzik at mguzik@telusplanet.net or phone me at 403-327-7668.

SPEEDY RECOVERY:

We want to wish Kathy Somers, Newmarket, Ontario a speedy recovery and the very best in her upcoming MVD operation in Winnipeg on January 14th, 2003.

Happy Birthday’s

Mona Wells - January 1

Zenon Malee - January 13

Belated Happy Birthday’s

Arlayne Davis - December 9

Erna Janzen - December 28

Last Meeting News:

What a nice group we had out for our Christmas Party. Three new people came out and we would like to welcome Zenon, Jim and Hugh along with their spouses to our group. We all had a very good time and the food was delicious. The prizes, though a bit fattening (chocolates) were a big hit. The letter from Santa was the highlight and it read:

To: Trigeminal Neuralgia Association of Canada

Lethbridge Chapter

Congratulations members, you’ve come a long way. Here are a few little gifts for your party.

-one for the person dressed for the season

-two for the people with yellow dots under their chair seats

-one for the member who has traveled farthest

-one for the person with a birthday closest to Christmas

MERRY CHRISTMAS TO ALL, SANTA

We want to thank Mrs. Santa who so generously donated these gifts to us and will be appreciated by those who won them. Also a big thank you to Mona Leslie (Mrs. Santa) who gave us the Door Prizes-a lovely Angel which was won by Rae Bastian and a Snowman which was won by Susan Brewer (which she wanted). Mona, her husband Fred and daughters Rene and Lisa do wonderful craft items under the name of Wood ’N Whimsey and are at our Craft Fairs in Lethbridge.

We started our meeting with the usual introductions and as we had three new guests, told a brief history of our TN. I do hope that our newcomers gained some knowledge from the rest of us and that you enjoyed us as much as we enjoyed having you. Don Brewer, our Secretary/Treasurer, was in pain and although he has had an MVD, couldn’t talk or eat. But, Don, your presence there for the rest of us showed us the support we all need. Don went to Winnipeg on December 23 and had his 2nd MVD and I am happy to report that Susan, Don’s wife, phoned me to let me know that he got through his surgery. I am sorry I was not at home when she phoned but I trust that everything is okay and we will be anxiously awaiting his return. Don is now home and we are looking forward to seeing him hopefully in January when he will be able to tell us all about his latest MVD.

Thank you one and all for the lovely lunch. We really had ourselves a spread and a good time was had by all.

HAPPY NEW YEAR

Marion

Notes From Marion’s Desk:

Another year has come and gone and we have made such a big impact for the TN Association of Canada in the past 4 months. I am still awaiting confirmation for our Non-Profit Organization Number so hope it will be forthcoming shortly.

So much has happened since our last newsletter. First of all there was our website. We could not go on to Dr. Kaufmann’s website due to University restrictions so we have to set up our own site. I talked to my friend Rene and asked her if she knew of someone who we could contact that could help us and up popped a name—John Walkey. I got in contact with John who is a teacher at the College and a very smart computer programmer. He was more than willing to help us out and I explained to him that we had no money to pay him. That didn’t seem to matter to him. Patty and I had a meeting with him on Monday, December 16 and he is instructing Patty in setting up our website as she is so knowledgeable on the computer whereas yours truly is not! John is also taking over our Grant Funding campaign. Normally his fee for setting up a web site would be $800.00, which both Patty & I thought was very reasonable, but he is not charging us anything for his services until he gets us a grant. His fee will be included in his estimate

on the application for funding for us.

Congratulations goes out to Dana Lavrence of Toronto for setting up a Support Group there. She will be holding their first meeting on January 25, 2003 with Dr. Kaufmann in attendance. Keep up the good work Dana.

Sy Moskowitz from the Quebec Support Group informed me that he had an inquiry from a gentleman in Ottawa who expressed interest in setting up a group there. Nothing in the Ottawa area exists, so I do hope that this will come to being.

This is just what we want to happen. We will be sending out a letter to all of the patients in Canada (about 750) who have registered with the TNA in the U.S. Hopefully Support Groups will then spring up in the different Provinces & we will truly have a Canadian Association.

I am not quite sure when our letter stuffing bee will take place but we will have lots to do in the coming months so please plan to attend the meetings.

Patty & I are pretty excited over being able to get the newsletter on email also. To those of you who have a computer, Patty will be able to email the newsletter to you. If you prefer this method, please let Patty or Marion know. This is just an experiment right now so we would greatly appreciate your input. If you receive an email from Patty Moyer (pgmoyer@telusplanet.net) please open if you can & it will be a duplicate of our January newsletter in Microsoft Word format. If you have an email address, please send it to us asap. Even if you have given us your email address previously, please resend it to either Marion (mguzik@telusplanet.net) or Patty so we can update our info. We will still mail out the Newsletters to those of you without a computer.

I am now going to pass this over to Patty’s Desk as I am sure she has a lot to tell you about what she has been doing.

Happy New Year to you all, Marion.

Donations:

Kermitt Newman, Calgary $75.00

Olga/Luis Ferrer, Red Deer $5.00

Don Brewer, Lethbridge $20.00

Nora/Norman Kudrenecky, Ont. $100.00

Memberships:

Hugh Laycock, Lethbridge $25.00

Kermitt Newman, Calgary $25.00

Olga/Luis Ferrer, Red Deer $25.00

My apologies to Marilyn Najm of Banff who so generously donated stamps for our use in the mailing of the Newsletters and this should have been mentioned in the December issue. Thank you Marilyn and all of you who have donated or paid for your memberships as you are keeping our Association going. It will be so nice when we receive our Non-Profit Organization number and then we will be able to issue receipts for Income Tax. I am watching my mail box every day!

Please make your cheques payable to the Trigeminal Neuralgia Association of Canada & memo them TN Membership or Donations. We depend on your memberships & donations to help defray the cost of printing the TN News, supplies, postage, etc.

Patty’s Desk:

As Marion mentioned, I have been busy with my newest endeavors of learning about Web Sites, Funding Grants & fund-raising ideas. I plan also to take a class at the College on learning how to set up and put on presentations using the computer & other audio/visual aids. This will be needed in the future in order to assist Marion with giving speech’s across Canada so that she can help educate the public about the TN Association of Canada and about TN itself.

As for learning about Web sites, I am very honored to have John Walkey’s help. He is very knowledgeable in this area. I am also blessed to have 2 brother’s who both just happen to be computer guru’s & I will be enlisting their help also (although they don’t know this yet!). I have done a domain-name international search and we are going to try to buy the domain name of TNAC.org for our web site as Marion and I both thought that it would be a good name and easy to remember for people. There is a one time registration fee for the use of the name and then there is a yearly charge in order to keep the name registered internationally.

I have already received a number of names of organizations that award various sums of money for non-profit organizations such as ours. Most of these groups give monetary grants for research and development. I will be looking into these organizations more closely in the next few weeks.

As for fund-raising - this is something that we will be asking for all of your help with in the future. We will need to raise money consistently throughout the year in order to keep the TNAC (Trigeminal Neuralgia Association of Canada) operating. We can’t rely on Grant money all the time as a lot of these are one-time awards only. So, an alternative is to have fund-raising events. And boy do I have a lot of ideas on this! But, they will be all talked about in a future issue as needed. If any of you have any fund-raising ideas, please feel free to contact me with them as you may have some real good ideas that I haven’t thought of. Some fund-raising ideas are probably not as good for our group as, say, a high-school fund-raiser - such as a car wash day for example - but others may work quite well. Events such as a bake/craft sale, garage/rummage sale, etc. may be quite feasible. But, please help me out and send me some ideas.

In my spare time (I have spare time???), I have been working on updated lists of all people who have TN or have registered with the U.S. TN Association. I’ve been sorting the names (about 750 so far) into various groups - alphabetically, by Province, etc. in order to better utilize the information. Please help me out with this - if you have changed your postal code, email address, phone #, etc. within the last year or so please, please let either Marion or myself know. We need to have a totally up-to-date listing of names in order to be an effective organization & I am sure that some of our information is incorrect, especially email address’. I see that some of the email address’ are showing as home.com & I know that they are no longer in existence. You can contact us either by phone, email or letter-mail.

Thank you everybody in advance & I will keep you all posted on further developments in future issues. Patty

RECIPES PAGE...............

AEGEAN BEEF (from Patty’s Kitchen)

2 lbs. Beef steak, cut into 1 1/2” cubes (marinating, chuck or tough cuts of steak work very well)

2 c. chopped or sliced onion (your preference, I like sliced)

10 oz. Can cream of Chicken soup

1/2 tsp. Oregano

1/4 tsp. Thyme

1/2 tsp. Salt (don’t over salt - it will be noticeable!)

1/4 tsp. Pepper

1/2 tsp. Liquid gravy browner or “drippings”

Braise the beef cubes first in a heavy fry pan to brown & seal in juices. I then add a touch of water to the pan after I remove the meat, stir it up to get the bits off the bottom, and then I use some of this for the “drippings” needed in the recipe.

Place beef cubes in a slow cooker. Add the onion over top of the beef cubes.

Mix remaining ingredients in a bowl & pour over the top. Cover & cook on Low for 7 hours or High for 4 hours. I cook mine about 5 1/2 hrs. on Med. (Times are approximate)

Serves 6-7 (more if you add other vegetables)

Variations: You may add other vegetables to this such as carrots, parsnips, potatoes etc. & kind of turn it into a stew dish. My hubby Brad added a tin of mushrooms about 1/2 hr. before it was done & that was real tasty too. This is a really versatile recipe & you can spruce it up almost any way you can imagine. It is absolutely awesome! The meat literally falls apart on your fork so it’s easy to eat if you are having a TN day!

NOTE: You can still make this dish if you don’t have a slow cooker. Use a roasting pan instead. Cook at a low heat (about 275 F.) for about 6 hrs. or at 325 F. for about 5 hrs.

LETTER FROM NORA KUDRENECKY:

I (Marion) received this letter from Nora Kudrenecky and I would like to share it with you. I had the pleasure of meeting Nora and Norman in Pittsburgh in 2000. I am so happy Nora that we have been of help to you and Norman and that another success story has been reported. I do agree with you that we have to get our message out to our Doctors and hopefully we will be able to achieve this mission.

December 22, 2002

Dear Marion;

First of all congratulations on achieving Incorporation! Enclosed is a small donation to help in this important work.

When you called at the end of September I must have told you that Norman’s TN had returned & that Tegretol was not helping in the way it had done for the past 17 years. We requested & were able to get an appointment with Dr. Peter Watson in Toronto. His name was on the list in your September newsletter. Dr. Watson changed the medication from regular Tegretol to the slow-release version. This only made him worse & he ended up 10 days later dehydrated & toxic. He was in the hospital here in Kitchener for a week. He came home somewhat better but still unable to eat proper meals, shave or brush his teeth. His speech was slurred so we had no social life & he was unable to work - which really bothered him. It was during this attack, which was worse & longer lasting than any other, that Norman decided to have an MVD. Dr. Watson referred us to Dr. Michael Tymianski who is taking over from Dr. Tasker (who was also mentioned in your September newsletter). Dr. Tasker is now more or less retired & only does consultations. Dr. Tymianski does the surgery. Co-incidentally, Dr. Tymianski, our family doctor & the doctor who was in charge when Norman was in the hospital were classmates in medical school.

The surgery was done at Toronto Western Hospital on November 26. Now almost a month later I am very happy to report that Norman is almost fully recovered. He still gets a little tired but he is pain free & off Tegretol. We are both enjoying this new lease on life & are off tomorrow morning for Christmas in Quebec City. Then we are going to Connecticut to spend New Years with our daughter & her family. After that we will drive south to Florida for a week close to Daytona Beach. On the way home we will be spending a week at Colonial Williamsburg in Virginia. We expect to be home on January 28.

Nora goes on to say - All of this underlines the need to disseminate information among the medical & non-medical world. For example, there are only two neurologists in Kitchener-Waterloo and no neurosurgeons. Our hard working general practitioner might have been able to find someone who could help us but then again maybe not. The local neurologist on call at the hospital did not even know of any neurosurgeons. And yet there could be help for people at McMaster that we do not even know of & certainly we were helped at the University Health Network-Toronto Western Hospital. We would not have known of Dr. Peter Watson without our contact with the TN Association & the information that we obtained.

I asked Dr. Tymianski’ secretary if it would be acceptable to pass on his name to you & the TN Association of Canada. She said “absolutely”. If anyone wants to make a referral they should fax the details. So here it is:

Cerebral Vascular and Skull Base Neurosurgery

Toronto Western Hospital

West Wing 4W-435

299 Bathurst Street

Toronto, Ont. M5T 2S8

Phone: 416-603-5896 Fax: 416-603-5298

Best wishes to you and all the good folks at TNA of Canada.

JUST FOR FUN:

SIGNS AND SLOGANS

On a septic tank truck: “We’re #1 in the #2 business.”

On a plumbers truck: “We repair what your husband fixed.”

At a towing company: “We don’t charge an arm and a leg. We want tows.”

On an electrician’s truck: “Let us remove your shorts.”

At an optometrist’s office: “If you don’t see what you’re looking for, you’ve come to the right place.”

On a fence: “Salesmen welcome! Dog food is expensive.”

In a restaurant window: “Don’t stand there and be hungry, come on in and get fed up.”

Funeral Home front yard: “Drive carefully. We’ll wait.”

At a Chicago radiator shop: “Best place in town to take a leak.”

RETARDMENT:

Even if you aren’t a grandparent you’ll enjoy this. A teacher asked her young pupils how they spent their vacation. One child wrote the following:

“We always spend our vacation with Grandma and Grandpa. They used to live here in a big, brick house, but Grandpa got retarded and they moved to Florida and now they live in a place with a lot of other retarded people.They live in a tin box and have rocks painted green to look like grass. They ride around on big tricycles and wear name tags because they don't know who they are anymore.

They go to a building called a wrecked center, but they must have got it fixed because it is all right now. They play games and do exercises there, but they don't do them very well. There is a swimming pool too, but they all jump up and down in it with their hats on. I guess they don't know how to swim.

At their gate there is a dollhouse with a little old man sitting in it. He watches all day so nobody can escape. Sometimes they sneak out. Then they go cruising in their golf carts.

My grandma used to bake cookies and stuff, but I guess she forgot how. Nobody there cooks, they just eat out. And they eat the same thing every night: Early Birds.

Some of the people can't get past the man in the dollhouse to go out, so the ones who get out bring food back to the wrecked center and call it pot luck.

My Grandma says Grandpa worked all his life to earn his retardment and says I should work hard so I can be retarded one day, too. When I earn my retardment I want to be the man in the dollhouse. Then I will let people out so they can visit their grandchildren.”

THE TN NEWS

January 1, 2003

Volume 3, Issue 1

DISCLAIMER

DONATIONS