Millie One week after second rod lengthening. Looking very straight  RJ

When Someone Asks "ARE YOU DRUNK?"

As ataxia progresses, children begin to wobble and stagger when they walk. Walking a straight line can be impossible. For older teens, some develop dysarthia which causes the speech to slur. Many are confronted in public by adults as well as peers, who ask the question: "Are you drunk?"

Younger teens may be asked this question in a public place such as a mall or a school function where no parent is present. For older teenagers who are driving, many face a dangerous situation of trying to explain their condition to a police officer.

Many parents learn of an embarrassing situation when a child comes home and relates to them what happened. Several suggestions for preparing your child and preparing yourself are listed below. Actual candid stories have been submitted by those afflicted with FA or their parents. Emotions of sadness, anger and frustration are evident. At best the question "Are you drunk?" can be viewed as an opportunity to educate strangers about ataxia.

GENERAL SUGGESTIONS WHEN ANSWERING QUESTION of "ARE YOU DRUNK?"

"I have a form of muscular dystrophy. Thank you for your concern."  Be nice, polite and informative.

The general public understands and recognizes the term muscular dystrophy, where FA requires a lengthy explanation.

Carry a business card explaining hereditary ataxia (available from NAF) which will inform and educate a stranger about FA.   If asked in a mall, grocery, etc., pass out a card.

SUGGESTIONS WHEN ADDRESSING A POLICE OFFICER

Carry a letter from your physician in your car's glove compartment explaining Friedreich's Ataxia and a phone number to contact your physician, or knowledgeable adult, if necessary.

Notify your local state's Department of Motor Vehicles (DMV). Some state DMV offices will enter a medical condition in the computer information for a driver's license. Police officers will have this information when checking validity of driver's license in their official data bank.

Have child carry letter from MDA stating they have a medical condition and would not be able to pass any tests such as walking a straight line, and that their gait would give the appearance of being drunk.

Have your child wear a MedicAlert tag with an 800 number on it. When the number is dialed, information about that person will be given.

Be informative. Belligerent behavior could be dangerous.

ACTUAL STORIES FROM THOSE WITH FA OR THEIR PARENTS

-1-
My daughter has had one bad experience so far. It was last year when she was in 7th grade. She attended one of the monthly dances her school has, and towards the end of the dance several boys showed up drunk from another school.  Well the local police was called in and one of the chaperones, who didn't know her, pointed out my daughter as being drunk. Well, my poor baby's first run in with the cops! She handled it as best as she could. She gave the questioning officer an explanation of FA and even told him the names of her neuro and pediatrician doctors. Needless to say we have since discussed medical ID bracelets, carrying a letter around, etc. We also contacted the school and suggested that someone who knows about her condition be at the dances. The letter sounds like the best solution so far for her, as she feels a medical ID is to obvious, and she doesn't want everyone asking her why she would be wearing one.

-2-
This used to happen to my son quite often when he was still walking. He was approached in public, also, and asked if he was drunk. At school, in 9th grade, the school nurse (who had known him since Kindergarten) called me and said that she had to search his locker and backpack because a teacher had filed a report that he was probably on drugs. After I put the top of my head back on, I went to the school and told them exactly how I felt. These kids go through enough without having these accusations thrown at them. I mean, the nurse knew about his FA, I met with his teachers when school started so that they would know and many of the kids knew. He also used to (and sometimes still does) tell people that he had Muscular Dystrophy, because it is so much more recognizable than FA. He now carries a card explaining hereditary ataxia. I'm not sure what to tell insensitive people. It certainly is none of their business. My son used to say, when asked if he was drunk "Yes, I am."   What is really sad, is that it took being confined to a wheelchair for these people to leave him alone.

-3--
It happened to me a few times when I still walked unassisted, my reply was:  "No, If I was drunk I'd be ok tomorrow morning but I have a neuro-muscular disease and it's here to stay..."

-4-
My daughter (15- diagnosed over 3 years ago) has never had bad experiences as far
as anyone saying bad things at school or officials thinking she's drunk.. (public staring by adults in malls is quite another thing) ...The school and her friends make certain she is Never alone and they all watch for her as she passes thru the halls.  (She still walks with the aid of arms, walls...teachers escort her to her chairs from the hallway door.) she has no special arrangements at school so far.. mainstream all the way. I am amazed at the kindness she brings out in people you normally do NOT see it in.  (to the point that the three biggest hoodlum, bully, troublemakers in school that cause the most trouble check with her everyday to make certain no one has done anything mean to her) I did however order her a MEDIC ALERT tag necklace two years ago for her with MD and Friedreich's ataxia stamped on it and her hypothyroidism as added this year. If she wears that she is pretty well documented.

-5- 
When I was 17 I went out with some friends it was only 10:00 o'clock at night. We were in a fairly large town about 45 minutes from home. We were leaving for home and where stopped by the police at first we thought it was no big deal (although we were not speeding). They, then asked all 4 of us to get out of the car. They said they had received a call that there we some drunk teenagers running around. Well as most people with ataxia know it is harder to walk in the dark or looking into a flashlight so they were certain (after seeing me get out) that we were drunk or on drugs. They searched the car emptied my purse ripped out the lining and still found nothing. They said we fit the description but they guessed they had the wrong car. I had never been that disgraced before or since. That was
possibly the worse night of my life. Well it had the biggest impact on me anyway!

-6-
We went through the same heart-breaking situation many times with our daughter. People are so senseless.  It hurts me when I hear this. When my daughter graduated from HS (before her diagnosis) one of our "friends" told another..."Looks like she is celebrating early....she can't even walk up the stairs to receive
her diploma".....that one nearly killed me.  I am sure there is someone in this group that has a better way of Telling the person why they 'stagger' when they walk, I just explode and say the first thing that comes to mind and it usually isn't very nice! We are probably the oldest parents of the group as my daughter is 37 and I still can't deal with it sometimes!

-7-
My daughter has also been accused of being drunk, walking into a restaurant she passed an older man (she is 21) and his comment was - "look at her she's really drunk", then going into a club when she was 20 the club was for 18 and up - she was pulled over by undercover cops and told she would not be allowed in because she was drunk. They had 10 undercover cops on her - she started to cry and told them she had MD (they did not believe her - she asked me who would lie about having MD) she figured they would not know what FA was - they did not believe her - then her friends came over and explained they then let her in and her friends (they waived the cover charge) but the damage was done.

Both my kids now carry letters from MDA stating they have a medical condition which they would not be able to pass any tests such as walking a straight line, and that their gait would give the appearance of being drunk. That they have a medical condition etc.

People are so cruel - I would never comment to anyone on the way they walk let alone accuse of being drunk or anything else, even before I knew what FA was. Why people do this is beyond me.

I have often thought of what a good reply would be ---------
"I have MUSCULAR DYSTROPHY and I do not walk like you, thank you for noticing."

-8-
It happened last year to my daughter, she was a freshman in H.S. she was pretty embarrassed.....teacher overheard and took other students aside (privately) and explained that she has a disease etc......She has since decided that the best thing to do if confronted like that is to say no I have ataxia and my walking is affected.... unfortunately she still has the people who just stare and say nothing.... that makes her very uncomfortable

-9-
I am 24 with FA. This used to happen to me around age 12.  This is sort of important. You have absolutely no obligation to those insensitive, ignorant people to provide any personal information. I just ignore them. I figure it is not my job nor place to inform the vast public about my condition. Let the insensitive & ignorant people think for themselves. I live my own life, and frankly, I am not going to change it to please the general public. I know these comments can sting, but about 90% of the time, the person dealing the comment is insensitive & ignorant and did not mean it as a malicious attack. So, I suggest trying not to take offense from remarks by those people, because chances are likely that the remarks are innocent and people are just ignorant.  It happened to me to a lot. I was in my twenties. I never knew what to say. I was in shock, so I ignored them.

-10-
A frank answer would do the trick. Something like, "No, I have a type of Muscular Dystrophy that affects my balance." My daughter was the one who decided that people didn't want or need a long, involved explanation, and although FA is technically NOT MD, most people have at least heard of MD.

-11-
Resist the temptation to ask the person if they are crazy!  Give them a healthy dose of honest reality- and say, "no, I have muscular dystrophy, but thanks for your concern." The general public understands and recognizes the term muscular dystrophy, where FA requires a lengthy explanation.

-12-
I am a 36 year old with FA. I have had the same thing happen to me at that age I even had a policeman stop me and ask me if I was drunk or high on something else. I told him the truth and he said there was no way I could
dream that up so it had to be true.

-13-
The Phrase, "Go-to-xxxx" comes to mind.

-14-
I also have FA and, although I am age 31 now, I have had symptoms of FA since childhood. I had the same experience a couple of times in my early teens and, at the time it made me want to shout at them calling them names.  I feel I have matured enough to view those people who said these things as the ones having a problem. My advice would be to:   First explain that he has a neuro-muscular condition, not that he needs to explain himself to anyone. Then finish by saying to the person "I feel this is an immature assumption, coming from an older person."

-15-
After awhile you can pick out those people before they approach. When I see them looking, and about to approach, I smile and wave at them or wave and say hello and move on. It usually brings a smile and greeting from them. If they persist I explain to them what I have. Lots of times they have a friend or relative who has some similar illness or they are people who are alone.

-16-
My 16 yr. old son made a mistake and didn't signal when a cop was behind him and he pulled him over. He accused him of being drunk. He took him to the police station and had his car towed. Never once were we contacted. No test were taken to see if he had been drinking and no tickets were issued.  Instead, they just turned him back out on the streets - without his car! He walked to the mall and luckily some of his friends had been to the movie there and they gave him a ride home. I was sooo angry, I wanted to file some kind of complaint, but he just wanted the situation to be over. My husband and I had to pay $60.00 to get his car
back. I will never understand why we weren't called. My son was a juvenile and to turn a 16 year old boy out on the street 60 miles away from home was just stupid!

My second incident was much better. My youngest son was stopped just a few miles from home for speeding (and yes, he was speeding)! When they had him get out of the car, the officer also questioned him about whether he was drunk or on drugs. They searched his car and found nothing of course. He is a little more outspoken and up front about FA and he told them his brother had just passed away with a neuromuscular disease and that he also had it. The officer called our home and talked to me about it. I assured him that he had told him the truth. He apologized for the questioning, and didn't even issue him a speeding ticket.

I do understand why officers would think people with FA have been drinking, but there are right and wrong ways to handle it. I have experienced both!

17- 
I was even arrested once for being drunk in public! Since I started using a wheelchair, no one has asked that. Best just to be straight up and try to explain FA.

-18-
This happens to my daughter all the time...since she was l2...and she didn't even get diagnosed yet.......Her answer to these rude people most of the time is that she has a form of Muscular Dystropy.. and even sometimes, they answer her back "no you don't".

It still makes her cry when some uninformed person does that. Even in the mall when she gets out of her wheelchair!!!!!!!! At first I thought we should carry around some literature on FA for these people and did for a while.......... the other thing she got was she on drugs? This is a tough situation ....and I think the literature is the best way to inform people.

-19-
We were recently on vacation. We borrowed a wheelchair from the hotel for our 8 y/o with FA because she was getting so tired. n the way up the elevator a 30ish year old man looked at her and said "What are you doing in a wheelchair?" She looked at me for the answer. I told him she had MD (since every one recognizes that and not FA) and she gets real tired and the wheel chair helps her enjoy the sites. Obviously, he became real quiet and you could tell he felt real awkward but it made my daughter feel real good. We actually laughed about it when we got in to
the hall way.

I say, when someone asks a blunt question, you hit them in the face with the facts. Say "I have FA which is a form of MD. That's why I have problems walking." 
Of course, some people are so stupid they wouldn't be embarrassed by any statement.

-20-
At a recent MDA meeting it was discussed that FA'ers should wear some kind of medic-alert tags. There are many different kinds, but the one by name 'medic- alert' (I believe) is the best because it has an 800 number on it. The number gives medical information on the person wearing it. There are several knock out brands
out there that several folks have told me not to get. I know it won't solve the problem, but at least they would be wearing something that tells right off that there is a medical problem. A guy I know with FA told us that he carries a letter from his doctor saying that he has FA and what it is.

As for what to say to an adult, I guess be honest and direct. "I have Friedreich's Ataxia, a neuromuscular disease covered under MDA. It affects my balance and coordination...."

-21-
How about - "If I were drunk, I'd be sober tomorrow. YOU are ignorant, and tomorrow you will be the same!" It amazes me that people can be so insensitive and, sometimes, cruel. No one ever asked me if I was drunk because I almost always used a cane [although I did get a lot of curious stares]; my symptoms were initially exacerbated quickly by a surgical problem. However, once when I was out with friends for drinks, a gentleman {?} in the bar told me I shouldn't go out in a public nightclub because it made people feel bad!!!! He was angry because I wasn't interested in his personal advances. I stuck him with my bar tab.

-22-
I have already experienced the comments with my son who is only 3 1/2.  They look at him and laughingly say, oh look, he walks like a drunk. I don't know what to say to these people, you would think that they could see that he has a problem, but I guess not.

-23-
It's weird that I (myself having FA) met a woman the other night stumbling all over the place. My fiancée and I were discussing the matter after she left, wondering whether she'd been drinking. Turns out she'd been involved in a car accident 10 years ago and broke her back, she was in a wheelchair for 2 years, she's also deaf (80%) but she'd still been drinking that afternoon.  You never know what the situation is, with anyone.

-24-
The ignorance of people never fails to amaze me. I find myself waiting for it to happen to my son and we've discussed what to do if.  If confronted directly he says he would just tell the person. However, we all are in a quandry as to how to react to passing comments - nobody wants to start a confrontation. I'm not sure anything will make it easier for the kids to deal with it.

-25-
It can be very upsetting to be asked something so ignorant by curious people. It was interesting to read the comments made from the other members, because I have noticed that many of the respondents have been given the chance to further their education. I feel that this is a great accomplishment, and the only way you can achieve this is to have the influence of supportive and understanding people in your life.

I do not have any thoughts on what your son should say to these wondering people - you were given so many helpful comments from the others. But, because one apple in the basket is bad, doesn't mean all the apples are bad... I think that's how the saying goes :) My advice is to not focus on the negative people in life and only
look to the positive - these people are the only one's who will make a pleasing difference in his life.

-26-
My suggestion is to do one of two things, depending on how the child feels about the comment and whether or not his personal safety is in question: a) ignore it; b) tell the person that they have no place making asking personal questions of a stranger, that the comment is hurtful and disrespectful, and doesn't deserve an answer.

-27-
That's a toughie to answer I was arrested once for "being drunk in a public place": I went out walking with a neighbor friend of mine when I was 19. A cop car passed by and then turned around. He pulled up to us and asked if we had anything to drink. It was 4:00pm in the afternoon, so my friend sarcastically said "Not yet" The cop looked at me and said "I think you boys got an early start." He then jumped out of the car and said I was under-arrest for being drunk in a public place. He grabbed my hands turned me around and handcuffed me. I tried to explain to him. But he just put the handcuffs tighter. To be fair to the police, I really did look like I was drinking and could you imagine trying to explain FA to a cop? For sure he would think you are drunk or stoned. And the Police are liable if they let an intoxicated suspect go and he ends up hurting himself or others! The best solution is try to educate about ataxia. Give the cops some slack! My peers were just as bad (if not
worse) calling me a "drunk"!

-- Thanks to Raychel Bartek for compiling this article.


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