I did two interviews on my life with Myotonia if you would like to listen, please click on the links below.

http://www.blogtalkradio.com/tippytalk/2014/07/01/james-lyons-1st-segment

http://www.blogtalkradio.com/tippytalk/2014/07/02/james-lyons-segment-2

Type of Myotonia: Thomsens

Country: USA

Here is the radio interview posted on the regular website, Intention Radio. Please like them and subscribe if you are interested: http://intentionradio.com/efactor/

Type of Myotonia: thomsens

Country: USA

Thanks for helping educate! It's amazing how few doctors even know what MC is.

Jan

Type of Myotonia: Thomsen's

Country: US

Jim, Ya know..I may regret even replying. Yet, I really feel the need to. But, I can not stress enough that referring to our MC as "The Fainting Goat Disease" is completely, and fully, unnecessary. I've said it before, and, obviously, I'm saying it again....I resent the reference and when explaining to those who haven't a clue as to what MC is...why is it so difficult to just give the HUMAN version of it? Why make it even more confusing? I started listening to the interview and you lost me when you mentioned that same phrase you use so often, Jim. No need to reply to this, Jim. Nothing will change my mind about this. It just is so frustrating that someone that is out there "advocating" for OUR MC, is adding another unknown element to the explanation?? Why? If they haven't a clue about the dam* goats, then why even add the reference? Just stick to the HUMAN facts. While you're at it why don't you continue to go way off course and add the reference to the kittens, too? How will we ever get people to begin to understand this if we confuse their understanding even more? Truly? Keep it simple. Keep it direct. Sometimes I wish you wouldn't even speak of it to the public........this is a subject that I am very passionate about, and I understand we (and, possibly a few others) will NEVER see eye to eye on. I'm disappointed and somewhat angry...but, those are my own reactions. I'm not easily riled...but, this a supject that is very dear to me. Just felt the need to give you a peace of my heart.

Type of Myotonia: Beacker's variant

Country: USA

Tammy, I'm sorry that I made you feel this way. It is not my intention. I realize that I am one of the few people out there who are speaking in public about Myotonia, and so what I say is pretty much all that people are going to hear about this. I have mixed feelings about your response, but at the very least if I speak about my personal story going forward, and decide to mention Fainting Goats, I will definitely mention that this is how I view my muscle disease and not everyone who has this muscle disease likes being compared to Fainting Goats, in fact some deplore the fact that I even mention it--they consider it dehumanizing.

My reasons for bringing up Fainting Goats is that after many years of suffering from the shame that I experienced in my childhood, which is so similar to thousands of others, I have come to depend upon humor as one of the main healing forces in my life to live with the reality of this condition. If I didn't have humor as a resource, I don't think I would be as good mentally as I have become.

When I first saw the Fainting Goats on Youtube and saw the millions and millions of people who were viewing and laughing at the goats, I felt deeply hurt and injured by this phenomenon. In fact this was how I felt anytime that anyone made fun of anyone's weaknesses. For instance I can remember getting upset when people used the word "gimpy" to refer to themselves after they had injured a leg or something like that. Just one comment would take me back to those anxiety filled days when I hid my stiffness from everyone. I could not continue to live my life like that.

So instead of that I finally embrace the reality that Fainting Goats do have the same muscle condition that I have and that if I could laugh at them and at myself, then maybe some of my panic would go away. In fact it did more than that. It has greatly freed me from the shame I felt growing up--a shame that almost destroyed me.

The reason why I say "if" I decide to mention Fainting Goats again is that if my decision only rested upon how the comparison of my disease to Fainting Goats affected you, then I would not do it, but that is not the only reason. For the rest of my life I am going to have to deal with the affect of MC, and my childhood experiences due to MC, on my mind. I apologize once again if this upsets you, but for me it is the healthy choice.

Type of Myotonia: thomsens

Country: USA

It doesn't bother me at all, but I guess I'm used to having nicknames for my diseases (I inherited several genetic conditions). When I say I have SCID, people have a blank stare. But if I say I have the "bubble boy disease" they immediately think of the Seinfeld episode and understand that my immune system is totally messed up. When I say I have porphyria, even most doctors don't know what it is. But they recognize "vampire disease," especially if they saw the "House" episode about it.

So using a phrase that people have a frame of reference for saves a ton of explaining and even opens up the opportunity for an intelligent, educational conversation. I raised goats and think they're a hoot, so it I don't mind the comparison.

I respect your feelings and opinion, Tammy. Sorry the comparison offends you. I do get irritated about people exploiting the goats and scaring them on purpose so that they'll fall. So I tell people that it DOES hurt and that I hated going to birthday parties when I was little because if a balloon popped I'd be incapacitated. They laugh but they get it and are more considerate in the future.

Jan

Type of Myotonia: Thomsen's

Country: US