I think the hardest time for me is when I see my child trying to get out of a car, even if it is only a 10 minute drive. He is now taking driving class with us (DAD) and professionals. It hurts me, because I don't know what MC feels like. I only see it. I cry (not much anymore)everyday, inside, wishing it was me and not him. I use to cry outside all the time. The pool scenerio for us was, our son hated the pool and never wanted to swim....from day one. It has only been two years that I really know why. He does love the pool now and deals with it in his own way. He learned to swim himself. My trying to offer him a dollar was really not the answer...but I did not know better. I did not know he had MC. It is starting to get easier watching him advocate for himself and do things for himself as he gets older....in his way and on his terms. Imagine, not knowing and trying to pay your child to learn to swim across a pool...not knowing he can't and he is afraid because his heart told him he could not. If there is anything I learned about MC is that people with it are way more adaptive early on and they don't even know it. It is like GOD is with them and tells them as kids, you don't like bananas because it is bad for you. Watch out in the cold waters when you start to learn to swim. Forget what people think about you, you are better then them. I, honestly, don't think that I could face what my son does but maybe I could and would. If I had MC and not him, I know I would be happier. I wish it was me. But, watching him grow up and become this amazing person who has dealt with his woes better then his mom has is amazing. My son is happy. My son loves life. My son has shown me that I need to stop being sad for him...and start being happy, stop crying inside...because he is not crying at all. Actually, it is sad a mom can say this and be honest...but I could never walk in my own child's shoes. My son is amazing and I worship the ground he walks on. I vowed, I would do anything for him but I am learning that he will do anything for himself. He is going into 11th grade and, he is doing for himself and I can't cry inside anymore. I am learning that I have to put the MC behind me and clap, clap, clap. Cheer, Cheer, Cheer. I'm learning thanks to all of you. And, thanks to all of you, I am working on my sadness and just enjoying the precious gift GOD gave me, my amazing son who has MC. The one thing I have finally overcome is the cruelty of other's...parents and kids. They never bothered my son but those parents and kids irked me and made me cry. No longer. My son does not cry, he does not care...and I am learning not to either. But, I have to be honest with all of you and say, I could never walk in my son's shoes. He is so amazing. All he has in his heart is love, for himself, his family, his friends and all the ignorant people he meets. I am catching up with him. He makes me do that.

mcboarder - Don't cry! Be very proud of yourself for being sensitive and caring and insightful enough to let your son be who he is, and realize that he'll be better for it. I would have been so grateful for a parent like you!

My dad was a water safety instructor in the Army (among other things, like paratrooper, and more) - He was (and to some extent still is) an athlete. He's also an engineer and scientist and mathematician, so he requires empirical proof for something to be a fact.

Since my family assumed I was just a lazy, fat faker, when he decided it was time for us to learn to swim, there were no excuses, and I had to learn to swim. I was always very suspicious of water, and I innately knew I was in some sort of potential danger - but I struggled, and basically learned to float, and do a very desperate dog-paddle. I eventually learned a lot of strokes, but I could only do them after warming up, if the water wasn't too cold, for very brief periods, and if no-one was watching. Somehow, I did enough to satisfy my Dad that I was as good as I was going to get, and he let it be.

After that, I never went in the water again until 1990, when we bought a house with a pool, and very slowly and carefully, my husband helped me get over my panic and fear...but only barely - but we both thought it was just fear of the water. So we concentrated on just being able to be in the water without being terrified. I figured my muscles tightening up when I panicked was just part of my fight/flight response, even though it really makes no physiological sense.

In the last 3 years, since I learned my diagnosis, and discovered that all the things I have been dealing with for the last 57 years have been directly or indirectly attributable to MC, I have been able to actually allow myself to figure out how my body can swim, and just let it do its thing. I do a very clumsy but rewarding dog paddle, and I can now swim in the deep area of the pool and feel confident. It's an amazing feeling. Like much of my new medical and physical self-understanding, it just makes me giddy!

I applaud and commend and respect you for letting your son be who he is, letting him work out his own style of dealing with things - and for being so supportive and empathetic and kind. You have no idea how much of a difference that would have made in my life, and how much I believe you are strengthening your son's self image and esteem. MC does not have to be horrendous - if you know what it is, and can be open about it and relax with it, you learn to deal with most of it.

As many of the folks here say, it forces one to be patient, philosophical, have a good sense of humor, be very strong in your sense of self. Very few of us turn out to be slouches ...we have too much to prove! Lois

Malcolm, thanks so much for sharing. I do think a list of excuses would be fun. I'd like to put them on my website!

Lois, your experience with swimming sounds a lot like mine. My mom was a YMCA swim instructor and I did love to be in the pool, but had to do it at my own pace and work out my own strokes. The first time I stood on a diving board I nearly passed out from fear and climbed back down the ladder.

When I was in high school I actually earned my lifeguard certification. I was pretty okay in the water, it was just when I got out and quit moving that I got really stiff. But when I had to do rescue swimming there was no way in the world anyone was going to get out of my grip!

Jan

Just wanted to add a note that I have always loved swimming, like a fish in the water. I have never experienced stiffness in water to a degree that would cause me concern. I loved swimming so much that I went out for the swim team in highschool! It was then, when I had to stand on the edge, dive in and "take off!" that I became like a piece of lead! So . . .no sprints for me. After reading your posts and "looking back" I see that I always just pushed through the stiffness, refusing to let anyone know I had a problem. The result? Much pain, and BIG muscles! I always looked very athletic and people probably just thought I was lazy or slow. I just always lived like I was "normal"--making excuses, laughing off comments.
I do think that water is the best form of exercise for me (I take water aerobics classes at the Y--and the pool is WARM) It is much less strain on the muscles. There is no need to fear the water--just like other things, take it SLOW, especially if the water is cold.
ONce again, thanks for all your posts--it has given me much to think about and pray about. I do pray that none of my children get "the disease" as my family refers to it. I will not have any of them diagnosed--it has caused too many prob's with insurance--can't even get life insurance--but that's a whole other issue!
God bless! Keep your head up, and be good to yourself!
Jill

For me it was after swimming that i had a problem. You know, when your shivering with the towel wrapped around you. Standing there all purple and stiff. The other kids running around playing and all you want to do is lay in the sun and get warmed up.

I myself have never learned to swim and I think that whilst perhaps we should try and encourage people to do so also be acutely aware of the serious danger that it could potentially put someone with MC into. It is about the only 'normal' (depending upon what you class as normal) thing that I dont do.

Thinking about our condition I think that after readings peoples notes on this board one of the things we all have in common is the ability to pick ourselves up after a fall.... and I mean that quite literally... cant remember how many times the back of my head has come into contact with the floor.. amazing we arent all a little scatterbrained with all the bumps...

Kev

I still remember vividly,being eleven years old and being in an unheated outdoor swimming pool in May, and looking up from the water at a teacher with a coat and scarfe on,praying she would notice that i was in difficulties,but couldnt yell as my mouth was under the water,my breast stroke had become some poor excuse for a doggy paddle as my muscles siezed up..it was a friend nearby who realized by my saucer shaped eyes that i was in trouble...mum had a word with the school,i never went swimming in the outdoor pool again.

Jan here are a few.

Doctor’s/ Dentist’s Surgery – Always read a magazine so that when you are called up you can stand and then look at the magazine pile as if you are interested. Place the magazine back neatly, this gives you time to relax and make your way to the doctor’s room. Believe it or not the receptionist thinks you are tidy because have placed the fashion magazine (from 1991 that you can/t believe anyone actually bought), back in the rack.

Going up stairs – always position yourself to allow others up before you. This makes you look very considerate and if you pick a less agile person this is perfect because you can casually walk up behind them and no one will know you are the one having difficulty. Buses can be a problem because if you are the only one at the stop, well you just might have to let the bus go passed until there are more people there. Having spent the last 32 years in the Navy, trust me, stairs have been a considerable issue.

Getting out of a chair – this only works with people that don’t know you very well. As you get out, you let them know: ‘My back is playing up’ then you stretch and indicate that it feels better as you move. Be careful how you use this one as people may start to actually think you really do have a problem with your back.

Shaking hands – either try the 'wet fish' handshake of a dodgy car salesperson or if you do close the grip then make it worthwhile so that the person really thinks you mean it. You have to be a good judge of character for this one as it can become dangerous if you hang on a tad longer than is expected

Chew your food – usually not a problem when younger but certainly an issue when you get older. Over my life I have been able to rescue a piece of metal from a Thai meal, bones out of boneless fish fillets, plastic from a from a casserole and sultanas from curry. This last issue is a personal dislike; it has nothing to do with MC. Your throat will become your foreign object detector for your stomach - trust it.

Multi Focal Spectacles – Dangerous, these things reduce you peripheral vision, not a good thing when you can’t turn your head quickly when driving. I do use them, but find I have to turn my head prior to an intersection to warm it up, strange but it works. This is better done by yourself otherwise other people in the car my think you are having some type of turn. If they don’t know you well, but have seen a couple of other strange things you have done they may start wonder why they are in a car with you.

When Ordering Drinks - always verbalise what you want, don’t hold up your fingers to indicate the number of drinks because nine times out of ten your fingers will not indicate what you said. Even worse if you have asked for two drinks and you show three fingers just try and get the third finger to fold down quickly. But it is fun watching the person serving, seeing three fingers when you are asking for two.

Big muscles – Look this is somewhat bias as I am male and what can I say, apart from difficulty in finding clothes that fit, only going to the gym two to three times a week and seeing the increase in muscle size – well you have to be happy with that.

Yup, Malcolm... You have picked out some of the very favorites from the "hit list" of MC ruses. For girls, the pocketbook is a lifesaver - you get to the bottom of the staircase, or the entry of the bus, and "suddenly" have to fumble around in it for God knows what - change, a list of some sort, your keys, etc... Wonderful accessory, the pocketbook!
And music in the car - if you have music playing, you can bop your head around without looking the fool - and then turning it is much easier to do!
Trying on shoes, and walking around the shop to test them out - when you first stand up, you wince and wiggle your foot a bit, as if the ties are too tight, or the shoe doesn't quite fit right, and then walk a bit funny at first, until you realize it's the most comfie shoe you've ever tried on.
Raising your hand in class - it won't go down right away?... well, scratch the itch you discovered there while it was waving in the air.
You shrug your shoulders about something, and they won't unshrug, so you make a very philosophical face, and sort of re-shrug them a bit, like you are contemplating a very deep and important issue.....
Oh, there are thousands of these things, aren't there?

Thanks for the laughs! I read many of the "coping mechanisms" you all shared to my husband. I use many of them myself! I appreciate the advice from Malcom about the magazines at the Doctor's office. One that my Husband and I use often, and it makes him appear to be quite the gentleman (which he actually is!) is that when we stand at church, he takes my hand, or I take his arm, to stand. When we have to walk up onto the platform to sing, he takes my hand and walks with me up the stairs. When we are standing and singing for long periods of time, I always move or sway back and forth on my feet! I am sure everyone thinks I am just very "charismatic" and really get into the music! Another Church coping mechanism is that I never sit in a pew that isn't behind another, so I always have the one in front of me to hold on to as I get up! As far as driving, I love having a mini van that I can just slide in and out of. Have to get down into a car, or out of it, is very difficult.
As far as eating, I read that if you take a nice slow drink--preferrably of something warm--before taking your first bite of food, it helps with the swallowing. As I have gotten older, chewing and swallowing has become more difficult. You would think that would help with the weight, but . . .I still manage to eat my share!
Jill

Curious:

Do any of you have a handicap pass for parking? We were given one for our son (for lifetime) by his neurologist who said you might really need this when your son is having a really bad day. So we accepted it. We have used it only 3 times. Twice in San Diego when he was hurting really badly and today. He worked with me all day and his hands/legs were hurting. We had to pick up his computer from the geek squad and I parked in the spot to make it easier for him to carry. You should of seen the looks and then this man had the nerve to say to me, why are you abusing the handicap spot. My answer was, If I could transfer my sons disease to you...then I won't use it...and you will. My son saw how upset I was and for that I am sorry but what he said made me smile. He said mom, maybe your friends that have MC could come up with a bumper sticker to educate people that we look perfect but some days we just struggle. Kudos, to my son.

I have a permanent handicap placard, but it is due to my knee injury/reconstruction. Had I not had it for that, I believe at this point I probably would have asked for one.

As a rehab nurse, I have learned that sometimes those who look least "disabled" have the most devastating conditions. And if you are not in a power wheel chair, it may be a real godsend to be able to park in a spot close to where you are going.

As a person afflicted with some pain and difficulty with mobility - but looking like just another fat middle-aged woman - I have witnessed people being arrogant and presumptuous about handicap parking spaces. (fortunately for them, it hasn't been personal, or I'd have verbally skewered them).

I have actually counseled some people about ways to respond, because it is no-one's business but yours and your doctor's and the DMV's. But a well-turned phrase can wilt even the most obnoxious person, and they would deserve it. You don't owe anyone an explanation, but hopefully your son will learn to say something that is not snotty, but tremendously dignified and brilliantly clever, letting the person know that they are way out of line, and invading his medical privacy. (and what the heck business is it of theirs anyway!?!) LOL - lois

Absolutely right Lois, the sticker should read
No i dont look disabled, and YOU dont look stupid.....We were both wrong

When someone questions our right to park in a handicapped spot, we are presented with the perfect opportunity to educate them. I think most people who make negative comments are simply trying to make sure that handicapped parking is available to those who really need it; I give them credit for having the courage to speak up. There is no need to tell the individual what our exact problem is. Just give them some examples of people who look able-bodied but aren't such as heart disease, severe back pain, etc. We'll catch more flies with honey than with retaliatory remarks. Of course if the individual won't listen to reason and is truly obnoxious, all bets are off.

Anne H.

I LOVE THAT!!! It's BRILLIANT!!!!!!!!! thanks! lois

When I see someone parking in a handicap space with no placard or disabled person license plate, I do approach them (or leave a note, if they aren't in the car), and simply ask if they've forgotten to display their placard. THEN, if they say no, I advise them that the basic fine for parking in a handicap spot is $356 (actually, it may have gone up, but that's the last one I am sure of, because I got one by mistake once!), and that those spots are really important to the people who need them. They are usually polite and compliant, and if not, I take their license #, and advise them that I will notify the police that they are misusing the space, as I have a placard, and find it offensive.

However, if someone HAS a placard, I would never make a comment. Few doctors hand them out like door prizes, and no-one has the right to be the Handicap Police, except police and security guards assigned to the site. And who am I to question a total stranger's health status? It's not just a violation of HIPPA regulations, it's downright rude! I believe it is the highest form of hubris and "chutzpah" to feel so self-righteous and important that you would feel it your right, somehow, to ask a total stranger to justify something that is none of your business. Though I am not, by nature, rude or gruff or nasty, I see no reason, in a case like this, to explain or justify or educate. It makes it sound like you're trying to justify yourself, and gives the offender a sense of satisfaction that they don't deserve. It is, in actuality, not one iota of their business. lois

Lois,

I think we are talking about two different situations. I was referring to people who question someone who appears to be parking in a space reserved for the handicapped without a permit. Once when I questioned someone as to why they were parking in the handicapped area without displaying a permit, I was embarrassed to learn that their status was shown on the car license plate, something I had not seen before. It has never occurred to me that someone would question my right to park in a handicapped parking space while my permit was visible since that has never happened to me. Who would be that stupid? Or do they speak without looking to see if there is a permit? Or have they made a mistake like I did with the license plate? In any case, I think education is the most desirable and effective approach. I don't see any need to justify myself. I would simply ask them whether they saw the permit and if I received a reply in the affirmative, I would explain what that placard means or better yet, ask them if they know what it means. If they are embarassed like I was, so much the better.

Anne H.

I have to say that my husband is either crazy or has guts!! Once when he saw a "temporarily handicapped" sign displayed in the front of a car window, he watched as a young, obviously healthy young woman walked very quickly from that same car to a nearby store after parking in a handicapped spot. There seemed to be nothing wrong with the woman, so my husband copied down the phone number on the sign and called it when he returned home. It turned out that the handicapped sign was for the young lady's father, and the young lady's mother was quite perturbed that her daughter would be so bold as to park in a handicapped spot when she was not the handicapped person. One never knows. I was berated one day for using a handicapped stall in a lady's room. It was one of those days when my legs were feeling very weak, so I decided I needed the bar in the stall to hold onto. I let the complaining party know that I had a form of Muscular Dystrophy and that not all handicaps are visible. I believe I educated her that day. Mary

A lot of people get temporary placards when they have surgeries such as arthroplasty, bunionectomies, etc... and often, they are all better before the placard expires - but people get spoiled easily, and like the convenience of the handicap spots. It's like being a member of an exclusive club. LOL!! But one can feel fairly sure if it's a temporary one - but the permanent ones are harder to tell - what if the person has MS, or neuromyotonia or something else where you simply can't tell unless they are having an acute exacerbation? Or a heart condition or sarcoidosis? It can get dicey! Lois

Very true,my sister has Lupus and mc, some days she looks quite well,but has often been given the evil eye by,mostly elderly i have to say,people,they dont allways actually voice their disbelief but it's quite obvious what they are thinking, a lot of the time she is not given the chance to explain even if she felt inclined to

Yah - I figured. I love older folks - they have a lot to offer, and are often much more philosophical about things and have great stories to share - - - BUT, sometimes they do think they have the corner on the market regarding physical restrictions and ailments. As long as they aren't nasty, I just mutter some gently crabby German saying under my breath - but if they want to get feisty, I'll duke it out with'em! LOL!!! lois

what are they?...I learnt this yesterday,excuse spelling i'm bad enough in english,es tut meer leid,ich kann nicht es finden. so lois i may need at some point to understand some gentle German sayings cos'if i go there again i recon i'll hear a few. take care everyone

Hi Barbara - If you meant to say "I'm sorry, I cannot find it", it would be "mir", because "meer" is a word for sea, and so it would mean kind of like 'the sea is suffering, I can't find it"... hee hee!! Lois

I'm learning from dvd's so not actually seeing things written down,maybe a bad move...Michel Thomas have you heard of him,he says no books ,no writing, just listen...perhaps a little further along we will use books..where in Germany are your family from Lois?

Westphalia ... small towns like Rosebeck, Warburg, Madfeld, Wunnenberg and Brilon. My grandparents moved to Hamburg when they were married, and that's where my mother was born. lois

My family is also from Westphalia - the southern end from a town called Eisern which is near Siegen. They immigrated in the 1700s and settled Germanna in Virginia.

I learned German in high school but have forgotten most of it. I'm trying to get somewhat proficient in Spanish which is much more useful in Colorado!

I really like the Pimsleur courses (audio CDs) but I'm a visual learner and need the books, too, for it to really sink in. Are you using Rosetta Stone?

Jan

No Jan i've heard of it,is it good? How strange that yours and Lois's family come from the same area. I can remember being told a German doctor discovered mc,motivated by the fact his son displayed symtoms,do you know if this is true.

Dr. Julius Thomsen, a Danish physician, was the first to describe myotonia congenita in the medical world back in 1876. He had it and he identified 20 other family members with the symptoms.

This was the dominant form of MC which has a 50% chance of being passed on to children, but for decades any form of MC was referred to as Thomsen's Disease. I think Dr. Becker wrote about the recessive form in the 60s, but it wasn't until DNA testing became more readily available that doctors really started distinguishing between the two types. Unfortunately there is also a form of muscular dystrophy named after Dr. Becker and that causes quite a bit of confusion!

About Rosetta Stone, I haven't used it personally but have heard from others that it's quite effective at teaching conversational language skills. I believe you have to use it with a computer which ties you down a bit. I really like the Pimsleur language system and that's what I'm using for Spanish.

You can often find the audio tapes or CDs at your public library or if your library is a member of NetLibrary you can check them out by downloading to your computer. I'm doing a combination of books/workbooks and the audio tapes. I'd like to brush up on my German, too. I'm a disaster with French :-(

By the way, can you roll your Rs? I don't know if it's because we tend to have myotonia in our tongues with the dominant form or if it's just me, but I can't do it.

Jan

Boy, Jan, every time you write something, there's a gem embedded in it... I could never roll my "r's", and figured it was just another of my personal deficiencies - and now, it wouldn't have even occurred to me that the fact that I can't relax my muscles effectively could include my tongue..... you are such a clever woman, and a treasure trove of ideas!!! (And, apparently, a very long-lost neighbor!) lois