Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Just some thoughts

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.

Re: Just some thoughts

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

Re: Re: Just some thoughts

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

Re: Re: Re: Just some thoughts

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.

Re: Just some thoughts

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

Re: Just some thoughts

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

Re: Re: Just some thoughts

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.

Re: Just some thoughts

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

Re: Just some thoughts

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

Re: Re: Just some thoughts

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

Re: Just some thoughts

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

Re: Re: Just some thoughts

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

Re: Just some thoughts

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

Re: Re: Just some thoughts

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?

Re: Just some thoughts

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

Re: German Ancestors

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

Re: Re: German Ancestors

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.

Re: German Ancestors

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

Re: Just some thoughts

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