Barbara Gaskill is a myasthenic diagnosed at the age of seventeen. She has a degree in psychology with a minor in philosophy from Southwest Missouri State University. Her graduate studies at the University of Missouri-Kansas City were in Social Psychology and her master's thesis was on "MG and Stress." She has worked with MG support groups in Missouri, as a certified health-educator in Memphis, and as a health educator for cancer prevention in Boston.

This log has been edited from its original version for your convenience.

Dale Wurtenberger: Good Day to you. We thank all of you who have sent questions to Allen Tacey. He will be asking Barbara Gaskill your questions. We did this to allow you to ask questions anonymously and to maintain confidentiality. You will not be able to post questions during the interview. This will limit the length of the interview for those myasthenics who can not sit and read a screen for long periods of time. After we adjourn the meeting, the room will be opened for discussion. At that time you will be able to ask questions. Thank you all for coming. I would now like to introduce Donna Whittaker, our Program Director. Donna:

Donna Whittaker: Thank you Dale. Our dreams for MGnet are coming true. We are having meetings using the Internet to connect to patients in their homes around the world. It is my pleasure to introduce Allen Tacey and Barbara Gaskill.

Barbara Gaskill: hello everyone

Donna: Allen Tacey is a MG patient who has been a long time volunteer for MGnet especially helping with the MGnet web site. He is now a Board Member for the MGnet Chapter. He has recently assumed the position of Parliamentarian for MGnet. Allen has a background in psychology, especially the human resources field. Allen has collected questions from MGers to ask Barbara. He will be our discussion leader for this meeting.

Allen Tacey: Hello Everyone.

Donna: Barbara Gaskill was diagnosed with MG at the age of 17. She has experienced all the symptoms of MG at some point. Her treatments have included Mestinon, Prednisone, thymectomy and plasmapheresis. She graduated from Southwest Missouri State University in 1987 with a major in Psychology and a minor in Philosophy. She worked the MGF office from 1987-1989 helping with the Mg support group, and she did her master's thesis on "MG and Stress" while attending the University of Missouri-Kansas City from 1987-89 working on her master's in Social Psychology. Since then, she has worked as a health educator and also begana business with her husband. In Missouri she has facilitated a support group for myasthenics. Allen and Barbara:

Tacey: Hello Barbara

Gaskill: hi

Tacey: To help everyone understand can you explain your thesis and what it determined?

Gaskill: I interviewed mg patients in Kansas City. They took a personal inventory about stress, and they also listed their symptoms. They described their family life and work.

Tacey: Did everyone have the same symptoms as to stress?

Gaskill: no, not everyone, but, I did find that most people had symptoms of their mg worsen when they reported stress.

Tacey: How many were involved in the study?

Gaskill: There were about 60.

Tacey: Why are some of us more vulnerable to stress?

Gaskill: I think some of it is genetic, some of it is lack of knowing or learning coping strategies, and it also depends on the type of stress.

Tacey: How can we identify our individual stressors?

Gaskill: I think you have to spend some time thinking about what upsets you. My husband says I never know when I'm stressed. So, I guess I'm always stressed. LOL

Tacey: Some questions arise on stress. Some question stress as a cause because they have stress always. So the question is - What can they do when they are overpowered by it?

Gaskill: I think you have to know what you can change and what you cannot. That's when you have to seek outside help if you feel you are "overpowered"

Tacey: Considering the characteristics of MG, is it possible to say if the majority of MGers choose the "flight" or "fight" in dealing with the stress that the illness causes.

Gaskill: I would say a lot of mgers choose the fight response.

Tacey: Is that the "better" way to respond?

Gaskill: I think it may ward off the initial depression of a diagnosis of mg,but, later, it seems to have negative effects on the symptoms of mg.

Tacey: So at first it might be "the good fight"?

Gaskill: yes

Tacey: Does this then hinder the individual later?

Gaskill: and then if you continue to use the same "fight" when you could use other coping techniques, this is a problem, and it is difficult to learn new coping strategies. We get used to doing the same things the same way.

Tacey: Can you give your insight as to what may help us break down this "fight" barrier?

Gaskill: Acceptance of the diagnosis and learning as much as you can about how to treat mg. You also need to find out what helps you deal with stress. Not everyone can relax the same way.

Tacey: Different people deal differently?

Gaskill: For example, I have a friend that runs every day to deal with her stressful family situation. She has 2 children with special needs. I am envious of her ability to run. So, I have to rechannel my thoughts into what things I can do to relieve stress. I can exercise, but not like her.

Tacey: How do we as MGers climb that mountain?

Gaskill: explain?

Tacey: MG makes us weak so it is all the harder for us to exercise. So, How do we keep motivated, which is perceived as stress?

Gaskill: yes, but if you are doing nothing, that doesn't work either. Is keeping motivated stressful?

Tacey: It is a "good stress" correct?

Gaskill: yes, good stress is needed to keep us from giving up.Bad stress is dealing inappropriately in reaction to a negative event in which you have no control.

Tacey: So as in your example you knew your limits and dealt with positive stress?

Gaskill: yes, knowing your limits reduces your stress, because you will not put pressure on yourself to do more or be like someone who does not deal with mg. You don't owe anyone an explanation on why you cannot do what you used to do before mg.

Tacey: Is there available a "blueprint" for MGers to follow to help get them out of "distress?

Gaskill: no. most things written on chronic illness deal with more common problems. I think mg is unique in that people cannot visibly see a lot of our weakness, and also that it fluctuates. Since it fluctuates, we have to constantly adjust with different coping mechanisms.

Tacey: So support with 'invisible illness" is best treated by contact with others in the same "boat"?

Gaskill: agree. Even though each of us have different situations, I think we understand each other's frustration.

Tacey: Have you found any evidence that volunteering helps?

Gaskill: yes, it focuses your thoughts onto others rather than yourself and also helps with isolation and loneliness which can occur with mgers in the beginning of a relapse or diagnosis.The problem is if you are very weak you will have to get creative on how you help others. At one point when I was pretty ill, I just tried to be a resource for other young people that were diagnosed.

Tacey: And, do you have suggestions as to how to develop this creativity?

Gaskill: Well, I rely on god, but if you are not spiritual, you will have to either use writing skill, if you can speak try phone work where you don't have to get out of the house. A lot of it is knowing yourself and getting in touch with what you want to do with your life despite having mg.

Tacey: So the loss of MG in this way follows other losses? and Time heals?

Gaskill: Sure, the loss gets better. I've had mg for 19 years and I'm still learning how to deal with it even though I'm in remission. I still can't run like my friend, but I can raise 3 children, work part-time, volunteer at my daughter's school and so on. I also know that my symptoms could come back at any time and I would have to totally readjust again!

Tacey: So experience will make it easier?

Gaskill: I think that's true. But, you must learn that what doesn't work must not be repeated. We all have difficulty figuring that one out. For example, I was taking mestinon at a particular time and would start to feel sick. It took me awhile to figure out that it was too much mestinon, not a literature class that was making me sick.

Tacey: So one skill we have discussed is volunteering another is exercise any other ideas?

Gaskill: another skill is the importance of sharing your fears with a trusted person. I think this is very important, so that you don't make small problems seem larger than they really are.

Tacey: Trust can be developed at a time when we lose trust?

Gaskill: Yes, with someone who understands mg.

Tacey: at a time we tend to want to fight?

Gaskill: there will always be times when you want to fight

Tacey: so a reoccurring theme is make contact with others?

Gaskill: yes, isolation, makes the problem worse

Tacey: sort of making a mountain out of a mole hill?

Gaskill: yes. or that your mg is worse than mine, that kind of thing

Tacey: any advice on how to communicate or really to listen better?

Gaskill: That's a hard one. I try to pray before I say something that might be emotional to someone. It's hard to say what you really mean, if you are having slurred speech, or are embarrassed about your drooping eyelid.

Tacey: yes that is a hard question

Gaskill: especially since we all communicate at different levels. Some people listen better and are not so great at communicating their own needs. As an mger though, we need to communicate what we need so people will understand us better. Our symptoms can seem strange to others at times. So taking time in a response helps, like a short prayer, visualizing a pet and then also trying to relate on the same level as the question. And, we need to keep in mind reduce our stress?

Gaskill: Well, maybe the way we perceive what is stressful to us. Yes, mg is stressful, but you can get control of your life and help control the anxiety you might experience because of the loss and uncertainty that comes with having mg.

Tacey: so summing up all we have discussed Communication is probably the most important thing in dealing with MG?

Gaskill: agree, on many levels, with your loved ones, doctor, employer, children, etc.

Tacey: so a good plan of attack for the fighters is to communicate, exercise, do something for others anything more?

Gaskill: know your limits, take time out for some down time, keep educated about mg, support groups

Tacey: So Barbara you have provided us with much insight and in trying to wind things down we need to open up the floor maybe so that the people who are here can voice questions?

: would it be possible to get a copy of your dissertation, Barbara, at my expense of course.

Gaskill: sure

Tacey: We have received a lot of thought from Barbara

Donna: I think someone was trying to ask earlier "how do you exercise when you are too weak to exercise?"

Gaskill: there's not a lot you can do except to remain flexible and not focus on cardio activities. I teach an exercise class for those who have arthritis and lot of it is flexibility

Tacey: such as just doing stretches?

aubrey: she talked a lot about stress when being newly dxed. I was dxed in 1963 and am the most unstressed person I know. But when stressed, I know if I just chill out it will go away.

Gaskill: what do you do to chill out aubrey?

aubrey: music, play drums as much as I can and sing so the neighbors hate it. I love old rock and roll makes me peaceful

Gaskill: what happens when you can't play drums, aubrey?

aubrey: then I play the air drums on my leg or just listen to the music

aubrey: after having mg since I was 11 years old I have learned to cope real well

Dale: Tai Chi works great too

Donna: and Dr. Youmans always recommended isometric exercises for MGers, right?

Gaskill: yes, donna

Dave: mech exer machines are also available to those that qualify

MonicaP: I'd like to ask a question, please.

Gaskill: ok monicap

MonicaP: Does it help to keep a "log" of feelings to break the cycle of our "usual attitudes" towards stress?

Gaskill: I would think it would be useful in determining what works and what doesn't.

Gaskill: sometimes we don't realize that are coping strategies aren't helping us.

MonicaP: I c. thank you, Barbara. :)

Meadowmouse: While I don't have a question, I do want to say the emails I receive each day from Bette's & Stan's Support Groups have really helped me. They have educated me about MG and alsothey make you feel as if you are not alone in this world.

Bette: Thanks, Meadowmouse. May I say something in response to Meadow's statement

Gaskill: yes, bette?

Bette: The MG support club I have started helps me as much or more than the members -It is my way of volunteering support from my home/my computer. It is my way of coping with Mg -by helping or trying to help others with MG. chat rooms are great

Gaskill: that's great and it's something to do to when you can't leave home.

John_SC: That's the same reason this room was set up too.

Donna: Bette, that is the way I always felt about our Prodigy chats - especially when I couldn't talk on the phone

Bette: We have a very active message board where people post a message or ask a question if they can't get to chat rooms

Dave: I will make this statement, that Bette works as hard as any person I have ever seen (sometimes to the point of illness) trying to help her fellow MG

Bette: Thx, Dave -but actually it helps me as much as others

Tacey: it is validating your abilities?

Dave: Yes Bette, I to get the same feeling from helping others find their way back to a better way of life even with MG

chip: Before I leave I want to thank Allen and Barbara and may God Bless all of us.

John_SC: Gosh Dave, you should include yourself in that category too. You do a lot for others yourself.

Tacey: Thank you Chip

Bette: True, John

Gaskill: thanks chip

aubrey: yes thank you muchly

Tacey: Yes Dave you do a lot of encouraging others!

Donna: Are there any more questions for Barbara and Allen?

Dave: Thanks John and Bette, I make this statement and retire, Tacey, I have found nothing that helps me more than helping others

Tacey: Dave I have noticed you making changes and growing in a very positive way

John_SC: Barbara, we may be able to help get your dissertation out to others.

Dale: Thank you Barbara and Allen

Gaskill: let me know where to send it

Tacey: one more question?

Bette: Thanks so much for this wonderful meeting

Dave: GOOD PROGRAM, HANDLED WELL

John_SC: thank you Dave, and everyone.

Meadowmouse: THANK YOU ALL, IT WAS A VERY GOOD DISCUSSION. HOPE TO HAVE ANOTHER ONE SOON.

John_SC: You are all welcome to stay as long as you like.

Tacey: Barbara one more question from me?

Gaskill: ok

Tacey: sometimes the same strategies that helped cope before are not working now?

Gaskill: yes

Tacey: how can we develop even a wider coping strategy?

Gaskill: our situations are always changing and we have to respond to that change

Gaskill: experience will show you the way, but you have to be mindful of what helps you and what hurts you, and we don't always know the difference

Tacey: ok thank you. Wisdom!

MonicaP: A big thank you to Barbara for coming to us and answering our questions.