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Monthly Archives: December 2013

Sounding Off About Vocals – A Real Term for This Irritation!

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Those of you with tics who have written to me often say that your noises bug you.

Those of you without T.S. but who live with it say the sounds can drive you batty.

I have nothing but sympathy for people with T.S. when their symptoms drive them nuts. Honestly, if my friend’s kid is ticking, doesn’t bug me in the slightest! But when it’s my kid, I really struggle.

Perhaps this is like people who have sympathy for the anxiety/neurotic/blabbermouth type. You might find me those other emotionally-inclined people funny, but if you lived with them, you might want to kick them to the closest pharmacy and insist they down a bottle of Xanax with a Zoloft chaser.

For those of you who have issues with vocals – despite feeling guilty for having such issues – I am pleased to announce you might actually have a mental disorder!

This just in from someone in my Twitch and Bitch private group: I had to share with my loyal mamas here!

You’re welcome.

Misophonia:

Misophonia, literally “hatred of sound”, is a neurological disorder in which negative experiences (anger, flight, hatred, and disgust) are triggered by specific sounds.  The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is often used interchangeably with the term selective sound sensitivity.  Misophonia has not been classified as a discrete disorder in DSM-5 or ICD-10, but in 2013 three psychiatrists at the Academic Medical Center in Amsterdam formulated diagnostic criteria for it based on the largest cohort of misophonia patients so far, and suggested that it be classified as a separate psychiatric disorder.

The disorder comprises a unique set of symptoms, most likely attributable to neurological causes unrelated to hearing-system dysfunction. It can be described as an immediate and extremely negative emotional response accompanied by an automatic physiological flight response to identifiable auditory, visual, and olfactory stimuli. The disorder disrupts daily living and can have a significant impact on social interactions. A 2013 review of the most current neurological studies and fMRI studies of the brain as it relates to the disorder postulates that abnormal or dysfunctional assessment of neural signals occurs in the anterior cingulate cortex and insular cortex. These cortices are also implicated in Tourette Syndrome, and are the hub for processing anger, pain, and sensory information. Other researchers concur that the dysfunction is in central nervous system structures.  It has been speculated that the anatomical location may be more central than that involved in hyperacusis.

Symptoms:

People who have misophonia are most commonly angered, and even enraged, by common ambient sounds, such as other people clipping their nails, brushing teeth, eating crushed ice, eating, slurping, drinking, breathing, sniffing, talking, sneezing, yawning, walking, chewing gum, laughing, snoring, typing on a keyboard, whistling or coughing; saying certain consonants; or repetitive sounds.  Some are also affected by visual stimuli, such as repetitive foot or body movements, fidgeting, or movement they observe out of the corners of their eyes; this has been termed misokinesia, meaning hatred of movement. Intense anxiety and avoidant behavior may develop, which can lead to decreased socialization. Some people feel the compulsion to mimic what they hear or see. Mimicry is an automatic, non-conscious, and social phenomenon. It has a palliative aspect, making the sufferer feel better. The act of mimicry can elicit compassion and empathy, which ameliorates and lessens hostility, competition, and opposition. There is also a biological basis for how mimicry reduces the suffering from a trigger.

Prevalence and co-morbidity:

The prevalence of misophonia is unknown, but groups of people identifying with the condition suggest it is more common than previously recognized. Among patients with tinnitus, which is prevalent in 4–5% of the general population, some surveys report prevalence as high as 60%,[11] while prevalence in a 2010 study was measured at 10%.

The Dutch study published in 2013 of a sample of 42 patients with misophonia found a low incidence of psychiatric disorders, with the exception of Obsessive-Compulsive Personality Disorder (52.4%).  It has been suggested that there is a connection between misophonia and synesthesia, a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.  The basic problem may be a pathological distortion of connections between various limbic structures and the auditory cortex, causing sound-emotion synesthesia. There are people with both misophonia and synesthesia, and many people with synesthesia have more than one form of synesthesia (there are over 60 reported types).  Misophonia may very well be another type of synesthesia.

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They are now doing studies to see if there is a relationship between ADD and Selective Sound Sensitivity Syndrome (4S).  Individuals with ADD are typically not bothered by loudness of noise – rather, the softer, repetitive, common sounds are the ones that irritate, distract, anger and sometimes send them into fight or flight mode.

Photo taken from here!
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.
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Acupuncture to the Rescue: Tics Reduced!

Good news! This post is not as long as Sunday’s “War And Peace” expo Stink is seeing relief already from one treatment of acupuncture yesterday. I am so relieved. He came home calmer, with a 75% reduction in vocals. He still sported major eye rolling and head shakes/head butts, but his acupuncturist says it’ll take a week or so to really get suckers subdued.

I’m lucky as my son’s healer (and the source of my new found hope) is the incredibly talented Martina Eberhard who just happens to live across the street from me. She practices out of a darling 3 bedroom, wood floored, 1950’s cottage home. Her treatment room smells like heaven. It’s about about as clean and professional as any first-rate office park salon. In fact, it’s easier to relax in as the whole house is flooded with a personal warmth. Parking structure and cement? No thanks. I’ll take curbside service and a brick patio.

A few years back, she had come up with a treatment plan and supplements that she was convinced would really give Stink 90% relief. (Video and post here.)We ended up not seeing her plan to fruition because, despite only 20% of her treatment being executed, we saw such drastic improvement. Stink was tired of doing it, also, so we took a break.

Um, the above statement? It’s kind of akin to a bipolar person going off their meds because they “feel so much better!” Suddenly there are freak outs, manic screaming, and all around “What just happened?” despair. Pretty stupid, but let’s not berate ourselves with the past, shall we? Moving on.

As fate would have it, just when I started to lose my brain with tics, Martina mentioned that she saw this article on a teen Miss America who had severe T.S. and was “cured” through acupuncture. The formulas and treatment used on her were the same as Martina recommended for Stink two years ago, inspiring her even more to work on Stink again!

So, with my heart in my hands, tears in my eyes, I said “Yes.”

Full Disclosure: Martina’s rates are more than reasonable for her high level of skills. Check out the above video – she is sticking needles into my kids head and shins! She knows what she’s doing. That said, because of my professional writing background, we are trading service for service. I only mention this because if trades were not an option, I’d pay anyway. She’s that much of a healer. Eberhard did not pay for this review.

Big Take Away: Where there’s a will there’s a way, and sometimes we must get creative to make things happen. We all have gifts – why not use them to benefit one another?

Stink will begin acupuncture three days a week, then taper to two, then one.

Last night we had an impromptu bbq in the back yard. My sweet hubby cooked for us all, including Miss L and Martina. Connection and friendship out trump tics every time.

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I’ll keep you posted! Meanwhile, is something working for you?

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

I Spy New Science on Tic Relief (And, Um, Tics are UPPPPPP)

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Everyone in my Twitch and Bitch group is kind of freaking out about tics, including me. Not sure if it’s Christmas or the weather or just stress from school, but they are in high gear.

As a background, most of us have kids between the ages of 8 and 12 – the majority being boys.

Most of us moms are trying super hard to “accept” this condition and all that goes with it – the ADD or the OCD, the “spectrum” like symptoms ranging from obsessions over video games to underlying defiance.

Lest any of you are new to the T.S. scene, let me reassure you that NONE of the kids in my private group are seeing shrinks for outrageous behavior that is often associated with Tourettes in the media. In fact, the more parents of neuro-typical kids I chat with the more I see that talking back, wilfulness, and general lazy butt behavior is developmental for all kids. The best thing I’ve discovered is to not freak out about any “issues” being T.S. related, but simply treat them the way I would treat my own daughter’s turd like the-world-revolves around me attitude at times. This entails a “It’s my home/my rules” full frontal attack.

I don’t feel bad about it.

I don’t give Tourettes a free “Get out of Jail card” for bad manners, selfishness and poor attitude.

For the most part, I’m realizing that tics are here to stay and the best thing I can do as a parent of my beautiful son is to encourage his gifts, not obsess about his “flaws” that – let’s get real – are not really flaws. It’s his body. Just as someone of a kid in a wheel chair likely feels pangs of sadness each Christmas when the child’s friends go ice-skating and Mama must find alternative sources of entertainment, I mostly embrace the truth that Stink is not someone else. He is Stink.

The mom of the wheelchair girl is not going to scream at her “Why can’t you walk?” any more than I’m allowed to scream “Why can’t you STOP rolling your eyes back and forth?” (Oh, man, the eye rolls this week – OUT OF CONTROL.)

That said, and here’s the real rub… there’s a difference between a mom accepting that her child has certain disabilities and special needs (Ugggg… the words “special needs” also drives me crazy as don’t we all have special needs?) and allowing the kid to falter due to poor choices that both the parent, and the child, make.

Example re: the wheelchair kid: So they can’t go ice-skating, but it doesn’t mean they get to sit all day long in front of a computer, gain twenty pounds, and not do physical therapy for upper body strength. It doesn’t mean Mom might not keep an ear out for alternative ways to get that kid walking if the “cure” is being developed.

Example for my kid: Accepting mild tics as the norm for this condition is different from accepting mid to high-range tics based on poor choices that include:

* Loads of extra gluten because there’s always a holiday party, a birthday party, a play date where “everyone else gets to eat pizza and cupcakes it’s sooooo not fair”

* A school event where someone brings in corn bread and Kool Aid as if to intentionally make get my kid to leg kick like a Rockette just to really. pxxsss. me. off. (Do putting “xx’s” in a bad word make me classy or perhaps even more redneck crude because I am covering up my poor language with stupid letters? But I digress…)

* Extra computer time where he sits in front of a fast-moving screen and overloads his frontal lobes with Dopamine, causing a huge spike in vocals and head nods.

* Not enough exercise and sleep.

* Not enough veggies.

* Not enough good supplements or acupuncture or maybe, yes, maybe trying something else that can calm down these movements and high energy. I’m open!

One of my Twitch and Bitch members posted this encouraging article about break through technology in treating tics and Tourettes.

I of course got excited when I read of a possible break through treatment because, I have to be honest, my kid’s energy and tics this December have hit new highs.

After a good six months of being on the same page with my husband on everything (he’s really been AMAZING since I’ve been back at work) we skipped church today. Instead of worshipping together and enjoying our family at the park afterwards where we laughed and ran and counted our blessings, we hung out in the bathroom for fifteen minutes counting the tics. It was a lovely photo opp: Him sitting on the counter, me on the tub which, oh my, needs to be scrubbed in the worst way.

We went round and round… and round and round… about my worries about Stink’s tics and computer addiction love and my husband’s complete out of touch with my son’s real needs confidence that Stink will be fine despite some movements and sounds he can’t control.

On one hand, I’m thrilled someone is not as obsessed and vulnerable about T.S. in my home. I am extremely lucky that I get a break from all my obessions over tics domestic responsibility while my handsome hubby handles it like a pro – calm, relaxed and with an amazing attitude. My mate has impressively taken over all drop-off and pick up, play date coordination, food shopping, laundry and teacher meetings so all I need to do is go to work and write. It’s brilliant.

But this morning, after the kids lost their computer privileges for arguing and me, at my limits with one too many discussions revolving video games, I’d had it. Rex and I had a very heated discussion which ended with us deciding to drop the issue for the time being.

So we did.

But it didn’t keep me from dropping him the email below. Because, well, I just care. Too much. I care about my son to the point where I won’t stop fighting for some relief until I have no fight left. And yes, while tics and lack of focus bug me a hell of  lot more than they bug Stink, as a mama, I just know when something isn’t right. And we have to do something to calm things down so my kid’s brain can be more balanced. I just know we do.

Hi babe –

While I hate to argue about old stuff, I’m at least glad we talked and left our discussion with a plan. It’s more than we have had in the past. 

 That said, I just want you to understand that I’d be lying if I said I could ever just be “okay” with T..S. I  will NEVER get over fighting to calm down this beast. I’m sorry – I know it’s me who can be a beast to live with, but I’m just not done looking for relief – for him and, sadly, for me. I wish that weren’t the case, but it’s true.
 
I can accept what I can’t change, but as long as there is something out there that might change this, I have to keep looking and trying. 
 
I will work on not letting it consume me – perhaps a prescription for doobage? kidding… kind of… but this can only happen if you are part of listening to what I think may or may not work.
I get that you don’t want to go broke going after pie-in-the-sky alternatives – which makes sense since our income just dropped by 75% – but I also need to know that you are open to treatment if something if seems reasonable.
Unlike before – with Stink’s tics on the rise and all the pressures of middle school looming – I can’t… I won’t… carry the burden alone. To you, it’s not a burden. I am in shock and awe over that, not to mention gratitude. But to me, it’s like carrying an elephant on my back. I’m not up for it. 
 
Sure, I can put the elephant down, but then what? I can’t just let that elephant run wild. It must be led and tamed and be made useful.
The good news about my pit bill approach to our family? I will always fight for health, like I did for you and your job. I am not getting up at 5am to commute an hour for work for no reason. I believe YOU can be healthy and happier at home starting your own biz. 
 
I will take Pip on a walk today and spend time with her as she had kind of a rough weekend. I’d rather, honestly, be meeting Chrissy for coffee and chatting about Christmas plans.
 
And, leading me back to this email,  I  will never stop trying to find balance for Stink’s brain so he can be the best he can be.
 
For now, today, I’m letting go. I am going to walk and pray and give as much as I can to the Lord because, tics or not, He has an answer for me and will make something out of this struggle. Just look what He did for us? I’m closer to you – I love you – more than I have ever loved you in my life. That is God – that is transformation at work.
 
THANK YOU  for taking over the video game and homework stuff and being such a strong presence in this family. I trust you, even if I want to fight you tooth and nail sometimes. That whole ‘take over, babe, as long as I’m completely in control?” That’s part of my charm! Lucky you!

I do love you.
Andrea
For those of you out there in similar boat to me, let’s continue to accept the tics we cannot change, change the tics we can, and have the wisdom to know the difference. Let’s love on our kids and our spouses when we can. And let’s support each other. Love trumps tics every. single. time.
Love, Andrea
* Photo of my kids performing in their espionage themed church musical, “We Three Spies.” They were amazing! Pip sang a small solo and Stink hammed it up like a pro. I know, it’s a shock my boy is an extrovert. 🙂
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Twas the Night Before Tic Mas…

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…And all through the house

My Stinker was squeaking

A bit like a mouse

It wasn’t too, bad but it did make me pause

That I’d sure like a gift from dear old Santa Clause

One for myself cause’ I’m selfish that way

But one also for you to arrive Christmas Day

Just a wee little something for us all to calm down

When Tourettes takes our smiles and turns them to frowns

See, you folk are emailing me all over the place

That your kids’ tics are growing at quite a fast pace

You’re all freaking out – “Could it be sugar or Grinches

That’s causing the coughs and the crazy nose pinches?”

And while some of it’s diet and perhaps lack of sleep

The truth is that none of this might cause the squeaks

It could just be that tics go up and go down

And who knows the darn reason those darn things hang around!

So Dear Santa, it’s Andrea… help me to feel fine

For my son feels content – help me, too, fall in line!

Bring me a present that might not mean healing

But instead comes with grace and with thanks and good feeling

For my boy – he’s so big now – oh, my, how he’s grown

Give it ten years and I’ll be here alone

I don’t want to be thinking, “I missed this great season…

…I was freaked out and stressed. I blame tics for the reason!”

No, let me remember that all kids have stuff

It’s our love and our compassion that must be enough

So to moms out there struggling, with all of my might

Take my virtual hugs – it’ll all be alright!

I LOVE YOU ALL!

Love, Andrea

In closing, here is a video from my sweet little Stinker and his biggest fan, Pip.

 

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Skating in Circles, Not Getting Dizzy

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Sunday after church we took the kids ice skating. For those of you who live in beautiful wintry wonderlands, picture a frozen pond surrounded by snow capped trees and cardinals.

For those living in the city, like us, picture a mall with busy traffic on one side and a parking lot on the other. Picture kids in shorts and parents in tank tops. It wasn’t Norman Rockwell holidays In Dreamland, but we had a blast.

With Stink’s tics in high gear these days (lots of head shakes forward and back, side to side and strained speaking that sounds a bit screechy) I was only too happy to get on the ice and go round and round – getting that pent up “Ooooh, I wish it would stop” energy out.

Lord knows my head had been going in circles as well. “Oh, no, does he need to be put on medication finally? Should we not have taken him off the focus pills? Is it too much gluten? Do we need to go back to the supplements again? Acupuncture? Me going back to work?”

While all of these concerns are valid, I can’t let them define my life or his. The reason? His tics don’t bug him. They only bug me. Which, again, and I fully admit this, makes me a narcissist.

It’s why I’m bringing this up now – and I really want your opinion, as it relates to my book. (Yup, more about me. Narcissist!)

My book is not really about fixing tics. It’s about a journey that I went through, and still go through, dealing with a disorder I can’t cure. It chronicles a not so amazing experience at Stink’s school, as well as my marriage, over the course of one year.

Less Narcissistic: I didn’t write the book to have it be the Andrea show. I swear! I wrote it because, despite what I went through, our family transformed. I found my faith. I found peace despite less than peaceful circumstances. I want other moms who feel alone to know there is light at the end of the tunnel.

But the book itself – it goes there. To that place of raw and uncomfortable and wow does it ever get better?

I intersperse the book with my inner voice – one who sings show tunes. And does two-steps. And has been known to wear a sparkled fedora.

One person read it and told me that, at parts, he could barely read further. My “creative” tangents were unnecessary. No one cares about this inner voice. It’s too “out there.” It was “sarcastic” and “potty mouthed” and just not what “people who want answers” want to read.

It stung. But then I realized that with all due respect, he is not my target audience. YOU ladies are. And, well, I didn’t write a book to give anyone answers to tics – because I don’t have them. I only have the experience of the journey.

My book – like this blog – was written as a love letter to you moms – to let you know that yes, it SUCKS sometimes. (Woops, potty mouth.) But I made it. And I’m stronger because of it. It is NOT MEANT to be a manual to save everyone from the pain of Tourette Syndrome. (Though I wish it could be.) It is meant to be a manual for a hopeful life regardless of unexpected circumstances.

Tell me – do I ever come off too crude or too “in your face” when it comes to finding humor in a not funny situation?

Why do you read here?

Would you read a book about a mom’s journey from dark into light?

Do my ramblings here make you laugh or am I just exhausting?

Do I come off terribly un-elegant?

I am realizing that the process of writing a book is not unlike birthing a 12 pound child. I might need some serious drugs to get through this.

Until then, please know, as unelegant as I may be, I am here for you. You are going to be okay. I support you. You are NOT alone.

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.