How did your MC affect the attitudes of teachers, coaches and classmates?

I was schooled in England between 1966 and 1977. My teachers were ignorant of my condition during this time but then many physicians remain equally ignorant today. They knew that something was wrong with me but did not know what it was or what to do about it. Some teachers acted as if there was nothing wrong and some overcompensated, most chose only to acknowledge the problem when an incident occurred.

Sports teachers quickly reached a pretty accurate assessment of my physical abilities but for the most part encouraged me to participate as much as I could, which was quite supportive of them.

Classmates were generally good to me and I never felt particularly bullied or treated differently. I had plenty of friends, some I am still in regular contact with today, and very few bad memories of my time at school in this respect.


Were you teased because of the stiffness?

No one understood what was happening so there was some teasing but I don’t remember it being malicious.

Did you try to hide or distract from the MC?

Always. I wanted to be the same as everyone else, I didn’t like being different.

Did MC keep you from participating in various activities?

My symptoms were severe enough to make some activities too dangerous for me, such as adventure sports, so it was commonsense not to even participate. I cannot swim due to my myotonia being so severe so anything to do with water was out of the question. I was not able to compete in track and field events although I could do most of them, just not to a good enough standard.

Were you depressed or angry because you were different?

I grew that was as I got older and became more self-conscious.

Were you accused of being lazy, attention-seeking, or uncooperative?

No, it was just accepted that there was something wrong with me.

Did you feel anxiety about going to school or having to go to PE class?

No. I enjoyed school for the most part but there were certain aspects that I did not like, such as having to climb stairs to get to the next lesson. If a sport or exercise was being done in PE that I could not do I was always excused.

If you weren't diagnosed as a child, were you afraid that something very serious was wrong?

I was diagnosed as a child but never fully understood what was wrong with me until I was an adult. I knew what was wrong with was serious in that it stopped me doing certain activities but it took time to realise what degree of seriousness it reached.

Do you have any specific memories of an instance where the stiffness caused a humiliating situation? If so, how did others react?

Yes many, usually resulting in temporary paralysis and a fall. I don’t remember anyone being anything but concerned and supportive however. I think the suddenness of the experience shocked most people and as a result they tended to be sympathetic.

How did your family respond to your condition?

They have always been very supportive.

What did doctors say to your parents before you had a confirmed diagnosis?

They offered all kinds of diagnosis from muscular dystrophy to obscure congenital conditions.

Do you think the emotional trauma you had as a child related to MC has affected you as an adult?

Yes. I don’t make friends lightly as I don’t like having to go through the whole process of explaining myotonia to people, or having to excuse myself from social activities because of my condition. I am friendly, just reticent about making close friendships.

Are there any positive things that have come out of your experiences dealing with MC as a child?

My cynical nature would leap to a big, loud ‘no’, but in retrospect I know that this is not true. I have become particularly observant as I am always on the look out for trip hazards and I do value those activities that I can participate in safely when they come along. The real friends that I do have all come from my childhood and I value them very much because they have stuck by me and put up with me despite everything.


Hope this wasn't posted too late?!

Type of Myotonia: Becker's

Country: England

Thanks, Pete.

No, it is not too late. You gave me some good material. Thanks, Clint

Here is some more technical information.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2698970/

Type of Myotonia: Unk

Country: USA

How did your MC affect the attitudes of teachers, coaches and classmates?

When i was younger my teachers didnt really notice it... or if they did no one said anything about it...... I am sure that coaches noticed it cuz i was on a lot of the sports teams... but again no one said anything or asked about it..... My classmates also did not say anything about it.... i dont think it really showed...... but with my 6 year old daughter who is now in grade 1..... her classmates notice it.... her teachers too..... i think her MC is a bit worse than i remember mine to be.....
some teachers are ignorant about it..... some try to help her... and some have told me that they dont ask her to come up to the board to erase it or something because they are afraid that she will fall... when going up the step in front of the chalkboard..... her sports teacher has noticed it and asked me about it... and she does not push her to do sports with them when they are running.... or doing something that she can get hurt doing...... when i was younger i participated in all gym classes.... since i didnt think that there was anything wrong with me..... i thought everyone was like me........
My daughter's friends dont tease her about it..... she is one of the popular kids...... and the top student in the class...... they all try to help her though on the stairs but she wont let them.... she is too independent to let anyone help her....


Were you teased because of the stiffness?
I was never teased about the stiffness... i always tried to hide it.... i would always look to see how everyone else would walk..... i thought that everyone was like that and they were all hiding it....

Did you try to hide or distract from the MC?

yes .... very much so.... i tried hiding it...... the worst was when a teacher called me up to the front of the class to pick up a book or a test or something..... i would have to get out of my seat and walk to the front so i warmed my legs up first before getting out of my seat.. but sometimes it would not work..... i would still be stiff and i would look around at the corner of my eye to see if anyone was looking at me the way i was walking......
i also hated giving speeches.... cuz i think the nervousness makes it worse.. i remember when i was in grade 11 i had to give a presentation.. when i got out of my seat and went to the front of the class there was a step at the front and i fell...... cuz i was so stiff... i think cuz of the nervousness...... oh how i hated those days.....

Did MC keep you from participating in various activities?

MC did not keep me from participating in activities at all...... i was on the basketball team, soccer, badminton and volleyball team...... it did not keep me from participating but i was self conscious..... like when i would get a rebound in basketball i would be so worried how i was to run the other way to score a point..... i am pretty sure i fell a couple times.....

Were you depressed or angry because you were different?

i really didnt think that i was different.... i thought everyone had it since my brother, and sister are like me..... and my dad ...... so i just thought it was normal and everyone had it but hid it .... but when i saw my daughter at 2 years old walking... i was angry and depressed how she turned out like that..... so i started taking her to doctors and physiotherapists to see what the problem was.... and i finally found out that it was thomsen's.... which makes me mad... well not really mad.... sad..... i want to cry sometimes.....


Were you accused of being lazy, attention-seeking, or uncooperative?

Not at all..... No one noticed it for them to accuse me of all those things....


Did you feel anxiety about going to school or having to go to PE class?

Anxiety yes.... especially when i had to get on the bus in the morning..... every morning my legs would lock .. as i was going up the stairs on the bus..... cuz i would think that everyone is watching me......
i didnt want anyone to see me fall or walk locked....
I still sometimes lock up when i am going up the stairs at school..... since i am a teacher ......
and i also try to hide it from my students....


If you weren't diagnosed as a child, were you afraid that something very serious was wrong?

i was not diagnosed as a child..... my parents didnt see it... or didnt make a big deal about it.... so i didnt really think there was anything wrong.....


Do you have any specific memories of an instance where the stiffness caused a humiliating situation? If so, how did others react?

Like i said before... when i was going up to the front of the class to give a presentation i fell on the step that is at the front of the class..... i was so embarrassed...... but no one really said anything..... and no one laughed or anything.....


How did your family respond to your condition?

My family didnt give it any attention...... since my dad brother and sister have it.... we never talked about it at home...i mean at all.....
with my daughter it is different.... she knows what is going on with her... she knows that it is something that i have too... and that she is different in that way from the kids in her class.... sometimes i wish we did not draw any attention to it.... just like my parents had done with us..... cuz now it's like she is always thinking about it..... and if she like falls or something.... i always tell her that everyone falls... its no big deal...... she does not do gym at school cuz she is afraid of fallling in front of her friends.... but i did gym when i was younger...... i did worry about falling but the thought did not stop me from doing everything like my friends.....


What did doctors say to your parents before you had a confirmed diagnosis?

i still dont have a confirmed diagnosis... but my uncle has done the dna test and my dad's cousin and they both came out thomsen's..... so most likely it is thomsens.... doctors told my husband and I that my daughter has to do exercises..... and all these motor skill things...... we started doing them for her but it just stayed the same so we stopped going to that doc..... he didnt know about thomsen's.. we went to another doc and he knew that it was thomsens after doing an EMG i think it is called......


Do you think the emotional trauma you had as a child related to MC has affected you as an adult?

Yes.... when i was a child... i would always make friends with the popular kids and then just feel out of place.... maybe cuz of low self esteem or i was self conscious about it.... so i would make friends with the kids that were not so popular.... and now as an adult.. i still am a little shy and dont try to like make new friends and a little introverted..... i remember thinking when i was a kid..... why am i friends with the cool kids.... i shouldnt be ..... i am not like them...... i would think that they would be thinking like why is she around us.....
but now i see that they wanted to be friends with me but i would just like pull away....... i am sure that i had a very low self esteem..... I was told many times that people thought that i was snobby or thought highly of myself..... when really the opposite was true...... i would just push people away thinking that they didnt want to be around me.... but they would think that i wouldnt want to be around them....... cuz i thought of myself as better than them....... really my mind was a mess....


Are there any positive things that have come out of your experiences dealing with MC as a child?

Nothing positive has come out of MC.... for me at least......

Hope this sort of helped you with your report.......
Your report should be called

A Look into the Twisted Minds of MC Carriers

hehehehe... maybe it is just my twisted mind.... i dunno......

Type of Myotonia: thomsen's

Country: lebanon

Is he still looking for responses?

Type of Myotonia: SCN4A

Country: USA