MG Meeting Notes for November 2009
Hello Fellow MGers>>>>>>>>
We tried something new this month by meeting at a different place. We did not want to meet on the 4TH Wednesday because it was the day before Thanksgiving, but when we tried to change to the 3RD Wed at Health Link, they were all booked up. So, we made arrangements to meet at the Blanco Cafe for a dinner (supper) meeting. By the size of the attendance, it was a success as we had 19 people in attendance and everyone enjoyed the change of atmosphere. We had a very short meeting, a lot of visiting, a good meal and an enjoyable evening.
Those in attendance were: Charles Bailey and Jennifer Bailey, Carl and Jackie Marmion, Dean and May Nell Neugent, Louis and Helen Sanchez, Andy and Barry Williams, Lani Ord, Elroy and Gail.
Special guests at the supper meeting of Elroy and Gail were Bill and Shirley Connolly. Bill is Elroy's great nephew and he developed our website >>>> www.mgsouthtexas.org >>>> and maintains the updates. Needless to say, the website is instrumental in directing people to our support group as the paragraph next attests. Thanks Bill for all you do for our support group.
Also attending the supper meeting was newcomer Aida Soler who just moved to SA from Virginia after her husband passed away to be close to her daughter Frances Nenjivad. Shortly after she moved to SA, she was diagnosed with MG. She was accompanied to the meeting by Frances and her friend Carl Collazo and her son Michael Font. Michael came to SA from Patterson, Pennsylvania, to visit with his mom and sister and to help get his mother established here. He is the one who discovered our support group through our website. We are so glad that you've found us and we look forward to getting to know all of you. We especially want to hear that Aida is getting the medications that she needs to control her MG. Hang in there, Aida!
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Before we had our meal, Gail reported that Zayna had come through her thymectomy the day before very well. She was already walking and eating and still exhibited her positive attitude. During the time she spent in ICU, she found another Myasthenic---one of her nurses. He reported to her that his medications were keeping it in check. We missed you at the last meeting, Zayna, and we are looking forward to seeing you soon.
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We have already started thinking about MG Month in June. We'll accept contributions, corporate sponsers, and/or a fundraiser just to be able to put a large ad in the San Antonio Express News in June announcing MG Month with MG symptoms and our support group information. AWARENESS is what we are seeking. I have done a lot of telephoning and e-mailing, but I need your help in contacting people you know who might be interested in funding this ad, and with other ideas for what we can do in June to spread the word about MG. THINK, THINK, THINK and talk it up with others. Then we will talk it up some more at our meetings for some good results---I know!
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NEXT MEETING: Again it will be on the 3rd Wednesday (December 16) instead of the 4th because of Christmas, but it will be held at our normal meeting place at the Baptist Health Link Center at 6:30-8:00. Come have a bowl of hot homemade soup, and please bring your favorite appetizer or dessert or-----just bring your appetite-----or just come. Remember to bring your family and friends.
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MG Shirts: All shirts are still available for ordering. Myrna, your shirt is ready for you also. We hope you are doing well.
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H1N1 Shots: The article on this subject from MGFA was sent on line for all of you to read. We hope you were able to read it. Whether MG patients should get the shot is still controversial since some of your doctors are telling you not to get it; however, you'll have to make up your own mind and act accordingly (when the shots are available)l. Remember that the nasal sprays for flu of any kind should not taken because it comes from a live virus.
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Website>>>>>>>> Don't forget our website at
www.mgsouthtexas.org. We
have added Andrea "Andy" Williams's story
and picture. Check it out and consider adding your story so others will know
they are not alone in fighting this misdiagnosed and often very debilitating
autoimmune disease. We'll share some of
the hits on the website from time to time and other correspondence from MG
patients that we receive.
We've also added the meeting dates for the first six months in 2010. Remember the 4TH Wednesday of the month.
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THE KITTY FUND:
YTD income as of OCT 2009 is $291.60
Collections at NOV Meeting 28.00
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Total Income $319.60
Total expenses as of SEPT 2009 are $222.49
NOV mailout of OCT notes 3.96
Envelopes and copies 3.18
Snacks, water, etc 0.00
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Total Expense $229.63
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Balance $ 89.97
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It's that time of year where we assess our personal financial situation with regard to the IRS. A part of this assessment is to see if we want to make a contribution to a charitable organization before the calendar year is over. Since we are not a chapter of MGFA, our support group is not a charitable organization as defined by law, so contributions made to us are not deductible for tax purposes. However, if someone wants to make a donation to further programs designed to contribute to myasthenia gravis awareness and research and have it count for income tax purposes, we suggest the Myasthenia Gravis Foundation of America or MGFA. They are a registered 501 (C) 3 not for profit corporation and any contributions to them are tax-deductible. You could contribute as a Memorial or Honorarium for that special someone in your life. We have some envelopes for this purpose. Additionally, you can find out more about the organization and their mission by going to their website at www.myastheniagravis.org.
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Looking Forward to 2010:
As we approach the new calendar year, it would be good for us to look at where we are heading as a support group. In March it will be three years since we came into existence. My how time flies! From a humble beginning where only three people attended that first meeting, we had a record 24 at our October meeting. We now have 50 people on our email list (some are mg patients and spouses) plus 10 members that we contact by mail. So we probably have 75 people that we are in contact with regarding MG in SA and South Texas. We've come a long way and it is still exciting to get an e-mail or a phone call from an MG patient or family member wanting information because it is such a great feeling to know we are in a position to help and to connect them with other MG's. We feel extremely blessed to have found all of you as support for Elroy and his MG and to know that maybe we have been of some help to you. Thanks a lot to all of you!
Some things to consider:
+ Plans are underway for participation in June 2010 MG Awareness Month. We need participation and ideas.
+ It would be good for someone to step up and become our Public Affairs rep. ?????
+ Would someone step up and volunteer to start a scrapbook?
+ We need someone, or a family member, to take over the webmaster role. Our present webmaster has done it for 3 years and would like to relinquish that task.
+ We need help in contacting potential speakers for our meetings from time to time.
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We look forward to seeing you on Wednesday, December 16. Let's finish 2009 with our best attendance for the year.
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MG South TX Support Group Promotes
MG Awareness ~ June 2009!
Fellow MGers>>>>>>>>>>>
Shown here are pictures we took during the Health Fair at the HEB Plus on IH 37 (formerly McCreeless Mall). Everyone looks great and many thanks to the eleven people who participated. The get together for lunch and fellowship afterwards at The Little Red Barn was very enjoyable and topped off our morning of "getting the word out about MG".
"UNITING FOR A CURE -- TOGETHER WE ARE STRONGER"
MG South TX Support Group Meeting 6/25/08 Update
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Greetings Everyone>>>>>>>>>>>
We know that summer is a time for traveling and visiting so we were happy to have eight of our regulars at this meeting: Buzz and Bette Newman, Carl Marmion, Lani Ord, Janie Mora, Jennifer and Charles Bailey, and Cathy Miller, and we welcomed for the first time: Fred Voigt, Patricia Mcguire, Erin and Mike Hermes, and Myrna Flores. It is always great seeing everyone and meeting new people for the first time is an added bonus.
For this meeting we invited Jana Miller, a message therapist, to give a presentation on stress and its effect on the body and muscles, in particular. She founded her own massage school and clinic at one time and has taught all kinds of classes pertaining to anatomy in the past twenty-five years. So after talking about stress, she gave us some relaxation techniques which we practiced. Hopefully, we remembered what she told us over the summer and will remember the relaxation techniques in the future as well. We are grateful to her for giving us her time and expertise.
We definitely want to hear how everyone fared with the hot weather this summer and if you used any new and inventive ways to stay cool. Stress and heat are not the MG patient's friends for sure.
We are very excited to tell you about the Support Group's new web site. You can find it at www.mgsouthtexas.org. Log on to it, check it out and give us some feedback. Please share this information with your family and friends. If there is additional information which you would like to see posted, let us know.
Regarding the testimonials sections, you are encouraged to tell your MG story. And, you can do it complete with a photo if you so desire. Some of our members have some very moving and touching stories which would be well received by others who have MG.
We are looking forward to seeing everyone at our next meeting--Wednesday, September 24 at 6:30 at the Baptist Health Link Fitness Center. DON'T FORGET! Bring a friend or family member. Ya'll come!
Until then, Elroy and Gail
FYI>>>>>>>>the Kitty bank had $42.00. Thanks to everyone for contributing. Expenses recently were as follows: Poster $18.65; article copies from Kinkos $17.82 and phamplets from MGFA $24.00 >>>>>>>total of $60.47. Now we have a good supply of aricles and phamplets so we shouldn't have that expense for awhile. Maybe we can have someone else bring either snacks or drinks when we start again in September so we can spread that task around. Also, we are continually looking for ideas for speakers.
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JUNE MG MEETING NOTE:
A massage therapist was the quest speaker for the meeting. We gave a report from the MGFA annual meeting. Also, we told of our TV depute this month on the channel 4 - WOAI - San Antonio Living Show. We had five minutes to present our MG message. We think it went well.
Remember there will be no meetings in July and August.
Elroy
Check out the following websites to get more information about MG.
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Myasthenia Gravis Foundation of America, Inc (MGFA)
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Northwest Texas Chapter of MGFA
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Myasthenia Gravis Central Texas Support Group
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Muscular Dystrophy Association, Inc
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Myasthenia Gravis South Texas Support Group
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Mayo Clinic was a sponsor ot the MGFA annual meeting
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DECEMBER MG MEETING NOTE:
Greetings and a HAPPY NEW YEAR TO ALL:
We met on Wednesday December 19th, one week before our regular 4th Wednesday meeting date, to avoid the hectic rush of Christmas. Probably because of the Christmas season, we did have a sparse turnout. Nevertheless, everyone enjoyed the presentation by
Health Link's resident physical therapist, Michelle McGravan. Her topic was Exercising & MG. She pointed out some benefits of exercising: 1) decreased stress, depression and anxiety, 2) boosts immune system, 3) decreased fatigue/increased endurance, 4) increased cardiovascular health, 5) decreased blood pressure, 6) increased bone density and 7) weight control. She emphasized not to overexert when beginning an exercise program and to pay attention to what your body is telling you. She also stressed to consult your doctor before beginning an exercise program or starting a new exercise routine. Overall, the talk was very interesting and informative. I told her that perhaps she could come back again at our January or February meetings when we had a larger attendance.
Carl was a newcomer to our group and this was his first meeting. He has been recently diagnosed with MG and his problem is mostly with his eyes. After some discussion with the rest of the group, he thought perhaps he had other MG symptoms mostly in the throat and face area. It is a small world indeed as I came to find out that Carl lives in our former subdivision and we were practically neighbors for years>>>>but never knew each other.
That makes three people in the same subdivision that have MG.
Lani was in attendance and seems to have her MG under control as long as she sticks to her medication. She is one of our regular attendees. Lani, we appreciate your regular attendance and input at our meetings.
Buzz and Bette were with us again too and we appreciate their being here and contributing to our meetings. Buzz appears to be doing OK too. After some discussion, I found out that they do not live very far from where we meet.
Dean and Mary Nell joined us again. At the last meeting Dean informed us that he was having an MRI for a possible tumor on his thymus and to determine if surgery was necessary. He was happy to report that the test was negative and he was not going to have surgery. He still struggles to find the proper dosage and combination of medicine. He is very pleased with his new neurologist.
I had to wing this meeting alone as Gail came down with a stomach bug at the last minute and was in no shape to participate. I'm happy to report that after a couple of days she was fine and we had a great Christmas and New Year's and really enjoyed our toddler grand kids >>>> both almost two. Now I know why God gives children to young parents. WOW, they are active.
We started this support group last March so we will be approaching our first anniversary. We do hope that it is what you are looking for and that you will continue to come to the meetings and participate. If we can get a larger number of regular participants at our meetings, we will do our best to find interesting and informative speakers. Your input and ideas for the meetings are encouraged and appreciated. Also, finding speakers is always a challenge so if you can help in this area, please let us know. All of us are in this together. We need to get the word out to other MG patients about our Support Group and to learn as much as possible about MG to help ourselves and others. Thanks for your help and participation!
Wishing you peace, good health and happiness in the new year--
Elroy & Gail
Previous Support Group Meeting Reports and Notice Information:
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REPORT ON SAN ANTONIO - SOUTH TEXAS
OCTOBER SUPPORT GROUP
Good morning everyone,
We had a good turnout last evening with three new couples - Pablo and Margaret from Floresville, Dean and Mary Nell from Helotes, Richard and Mary from San Antonio plus regulars Lani and Xavier. Pablo, Dean and Mary are MG patients. as are Lani and Xavier. Sharon, our daughter-in-law who is a Dr. of Pharmacy, also joined us to give us some insight into the drugs we are taking to combat the disease. A list from the members was compiled and written on the board. She also gave us some information about vitamins for MG patients. Our son Toby is a pharmacist as well and alternates with Sharon in attending our meetings. We appreciate their presence at our meetings and their sharing their knowledge with us.
Each MG patient present was asked how many doctors they had to see to be diagnosed and how long they searched to find the right diagnosis. We found that several doctors had to be seen in order to get the right diagnosis and the wrong diagnosis was not uncommon. Self-diagnosis and information from the internet were common factors also.
The Heimlech Maneuver was demonstrated as it was during our last meeting.
We received word from one of our Support Group members that the shingles shot was denied for her because she is taking 20 mg. of Prednisone and, therefore, her immune system is already being compromised by the drug. Checking with your doctor is a must before getting the vaccine.
Gail reported that she continues to contact various media, especially the Express-News, to try to get publicity for our Support Group. So far she has been successful with two community newspapers. It is in the North Central News today on page 8. The article is not all correct but the important information is there. She is trying to convince the SA Express-News that this is a "rare, misdiagnosed" disease and the public needs to know about it as a lead-in for an article.
In the meantime, the Support Group members were given fliers to take to their churches or to distribute wherever they go to inform the public about our Support Group.
Everyone was thankful for being able to talk to someone else that is in the "same boat" so to speak. They were glad to see a support group in San Antonio.
The next meeting will be on November 28. Please mark it on your calendar and bring someone with you to the meeting.
Elroy & Gail
SA/South Tx MG Support Group Coordinators