My son has Coprolalia, he says off the wall things, things that would curl your hair, things that make no sense and it's all day long non stop. My husband has a hard time excepting his disability, basically thinks he has all control over what comes out of his mouth. We do not see eye to eye at all. I am at my wits end, does anyone else have problems with a spouse excepting their disability?

Kelly

I am not married so I cannot say I have had such a specific problem but I have had to try to explain things to people in the past. Timing is important as you want to catch them in the right mood - and open mood if that's at all possible.

What I used to do when I was a teenager is compare my tics to uncontrollable functions that 'normal' people have. Controlling tics in itself is only sometimes possible. At best, holding a tic in, or trying to suppress it is so very similar to blinking.

While you are talking to your husband, ask him to stop blinking during the conversation. While blinking is a natural bodily function, it can be suppressed at will. Ask him to concentrate hard about how his body feels while he is not blinking. You get this feeling - an urge to blink. The longer you hold it the stronger the urge is - and eventually you just cant hold it any more. When you finally blink you dont just blink once either. You have to blink many times to 'make up' for the missed blinks.

You can go crazy trying to hold a tics in - or a blink. Now tell him to image not only constantly feeling the way hid did just before he gave in. Now, something like breathing or blinking is 'wanted' functions, but now imagine that you have that same need or compulsion to do something you dont even want to do. The added frustration of being out of control over your own body only makes the feeling, the urge worse.

If your husband is asking your son to stop ticking he should first gain control over his body and stop blinking, breathing, and beating his hart. Yes, some tics cannot be held back they just happen - much like people cannot choose to stop their heart beat.

Although, admittedly, the issue is mainly that he doesn't believe your son has these 'urges' to tic. Well, I am not a doctor but if he takes time to do research its hard to argue with medical facts. Here is a summary of *some* information regarding TS as a medical condition and a way to explain it to your husband.

First, does your husband accept the fact that Parkinson's Disease is an uncontrollable medical condition? Parkinson's disease involves an insufficient amount of dopamine (a chemical in your brain that activates or boosts activity in your body). If you don't have enough - you have parkinsons. You have trouble talking and moving your body. "[Parkinson's] The primary symptoms are the results of decreased stimulation of the motor cortex by the basal ganglia, normally caused by the insufficient formation and action of dopamine,[...]". Have him look up Parkinsons anyplace he wants to.

Now, it shouldn't be that hard to understand that it is believed people with Tourette Syndrome have too much dopamine. (The opposite of Parkinson's). Instead of slowdown its more like an excess of stimulation in your brain telling your body to move. Medications that promote dopamine make tics worse while studies have shown that those medications that block dopamine (haloperidol & pimozide) make tics less severe. Connect the dots?

Endorphines in the brain have to do with releasing dopamine and when I was still seeing my TS Specialist I was told that people with TS have too many endorphines while people with parkinson's have not enough.

So,
If your husband wants to call you, your son, your son's doctor, everyone with Tourette Syndrome, the DSMIV, and an innumerable amount of scientists and doctors liars then I'm not sure how much anyone can convince him. I mean does he htinks its what all the cool kids are doing? Going to school, hurting themselves and causing themselves to be made fun of by other kids. Yep that sounds like its on purpose. Perhaps he just refuses to look up information about Tourette Syndrome?

Tell us more about him. Does he go to the doctors with you?

Thanks so much for your feedback, I really appreciate it. I think Dealing with Coprolalia definately has it's challenges because it sometimes sounds like they are saying stuff on purpose just to make people mad. It's none stop all day long just saying stuff that is inapproproiate or also displaying inappropriate behaviour with his body. It's been hard on us all and like I said the hubby truly can not understand it. I've tried to talk to him but then he don't want to lsiten to me, he just thinks I'm letting him get away with doing it. My son is not seeing any doctors at this time, he is off the meds for the ADHD because it made his tics worse and caused some horrible mood behaviours. He does not twitch to bad, does have an arm flapping and some face twitching but mainly the vocal tics, weird noises, weird phrases, blurting out bazarre things.

Southergirly,

Has your husband read all of the information available in regards to what TS is and specifically Coprolalia? If he is open to being educated that is. I would definitely pursue this as your husband will need to learn to accept that your son may never grow out of this condition and he needs to learn to accept it, for not only his own sanity but the sanity of you and the rest of your family, most importantly, the person it has the most devastating effects on - your son. It took over a year for me to basically force my family into accepting my condition and that it wasn't just something "I could stop if I tried hard enough", despite the tics occurring for ten years prior to this, but eventually they did accept it was TS and for the last 3 years I have been working on attempting them to gain more insight and interest into it, even if that just means me bringing up the subject every few days, saying "hey guess what I found out about TS today". It's been a slow journey but lately I have been getting more than just grunts in response, which is better than nothing. Perhaps you could speak with ChrisMc, he has coprolalia (i do not)and may be able to shed some more light on his initial problems with getting family members to understand.

Have you looked at meds for tics rather than ADHD, as it is not uncommon for ADHD medication to worsen tics, it is, afterall a stimulant as ridilin is amphetamine (speed) based, and despite it's counter effects for treating ADHD, from my drug taking experiences in the past, speed would make my tics go absolutely nuts, so it's not surprising when you think of it like that that ADHA medication would do the same.
Also, this may seem a little left of field but perhaps looking into alternative methods would be appropriate in your situation, like Habit Reversal Training, Behavioral Therapy etc.
As we don't have enough information in regards to the situation, this is only a suggestion based on experiences, but perhaps in time your son will learn some control over his vocalisations and various techniques can be used to substitute one more obvious tic for another less obvious tic. I would also suggest looking into if your sons diet and the possible benefits of changes to this may help calm him down, I have been reading a lot lately about food and ADHD (+ tics as well)and research is showing there is a definite link in the worsening of symptoms. I myself recently started a detox program and in the last 3 days before i broke it - it is rather hard to maintain if not within the right environment with support - i did begin to see a drastic results in the decrease of my tics, not sure if coprolalia would be different as it's a much more complex tic, but food for thought (excuse the pun!)and worth looking into anyway. Don't give up! your son needs you and thing will improve, just have faith

southerngirly,
while I am not a fan of medication I do think you should try to have your son seeing some type of doctor or therapist on a regular basis. I have found with my own family that they are less accepting of my TS when I am not actively doing something to treat it, and they are less likely to believe my symptoms are real without a professional saying on a regular basis that this is in fact a medical disorder that I am not in control of. your husband may just need the same reinforcement that this is a medical condition and what your son is doing is a symptom.

may not be a doctor but well said. I have TS AND I THINK YOU NAILED IT

coachsisco - which person were you talking to?

southerngirly -

Now, before I posted this I realized that you said he wasnt currently seeking a doctor and you did not say that he didn't used to, or that he wasnt diagnosed so if he is I am sorry. I didn't think of this until I typed this all out and since it is useful I figured I would post it anyways. (<---- I wrote this last but I moved it to the top of my post so you knew before reading it)

I doubt you can read more than 3 posts of mine anyplace on the site without finding me saying this. If I have said it once I have said it a million times. You should, and in my opinion NEED, to take your son to a dactor and make sure he is properly diagnosed.

Perhaps there are those who disagree, and I am sorry if I sound to everyone here like a broken record - but i think the majority of people would agree that the benefits of being diagnosed are unparalleled.

First, without a doctor you cannot truely say your son has TS. I mean, that may only be technical but things like schools and laws are technical and will not accommodate self diagnosis. Also, there are other tic disorders, and correct me if I am wrong but you can have corprolalia without Tourettes (can anyone confirm this?) so, having a diagnosis gives both validity and peace of mind in knowing for sure. With a diagnosis you can get doctors notes, apply for disability (if needed, most dont) and most importantly get prescriptions for medications to helpd reduce tics.

When I was in my diagnosis my tics weren't bad and I did not need medication - but a few years later when they got 7000% worse I did need medcation - at the time the medication helped reduce tics by probably 80% and even while on them I would throw myself off the couch with violent back and stomach tics. My point here is that while you may not need it now - as he gets older he may need medication and you dont want to wait 1 year for a diagnosis so that he can get a prescription if you wait to get that diagnosis until he really needs the medication. Not to mention that a real diagnosis comes with validity when talking to friends and family.

Hey there,

Yes he was diagnosed a few years ago by a Neuro-Pychologist. What I did was video tape my son sitting by himself in front of the tv and he was steadily saying off the wall stuff, I did about 4 videos and showed this to his doctor. I had him seeing a behavioral theripist at one time but it was a waste of time, he did nothing to try and help him, just always ran him out of the room and talked to me about the same ole stuff so I finally quit taking him there. He has tried meds and none seem to work so right now we are on a break of in and out of the doctor offices. I do appreciate your replies.