52 Weeks of TS: Week 24

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed any of the first 23 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I’m tired. I think that can explain my week right there. This has been an extremely busy, anxiety, and tic-filled week. I went out of town for a few days for work, which wasn’t too bad. The trip actually started off somewhat cool. I was on the plane with Michael J. Fox, and I did actually approach him.

We ended up having a short discussion comparing Tourette Syndrome and Parkinson’s Disease. I do have to say, I was excited to talk to him. He has done so much awareness for Parkinson, as I am trying to do for TS. Even though I knew I’d never hear from him, I did invite him and his family out for dinner. (I didn’t hear from him). Either way, it was an interesting experience.

I was only out of town for three days, it was quick in and out work, not too stressful. The flight back was not as exciting, just me and my Sky Mall. Don’t judge me, we all know we do it, look through the Sky Mall shopping for things that we don’t need. However, have you ever really looked through it, I mean really looked through it!? I think the magazine might be created by a germaphobe.

There are so many different kinds of antibacterial things in there. There are lights you can shine on your hands to kill the germs, lights you can shine on your bed to kill bugs. They even have different types of travel ones. By the time the plane landed, I wanted to purchase half the magazine.

It seems like my TS loves to try new things, it’s like a kid in a candy store. I have all my normal everyday tics, but every now and then, a new one will pop up. It might last for a day or two, or stick around for a while. This week I’ve had some interesting echolalia tics. Echolalia is the repeating of words that either you have said or something someone else has said. I know I have had a touch of this anyway, but it usually only happens with commercial jingles. I constantly sing along with commercials.

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My kid? A bully? Handling the unexpected

Bully

Stink has never been shy on friends. I mean, never. This kid can be ticking like a clock on crack, walk into a party of dwarfs speaking Chinese, and come out with three new buddies (along with a fistful of twitch-inducing fortune cookies).

Unlike me, however, he doesn’t hand-wring over situations that aren’t working for him anymore. Sometimes he’ll play with the neighbor kid every day for two weeks. Then a month goes by. “Tyson was cheating at Pokemon,” he’ll say. “I told him to not come back until he stops trying to steal my Pikachu cards.” Before long, they are playing basketball on the corner.

Stink doesn’t obsess over what another kid thinks, says or act. It doesn’t mean that he has an unkind heart – far from it – but he’s not going to walk on eggshells around someone. Nor is he going to let someone walk on him. For those who operate in life out of a wounded life-script, his character could be perceived as selfish. For others with a healthy dose of self-esteem, Stink is seen as a leader with boundaries.

I am slowly getting on the Stink train, but it hasn’t been easy. Because I am a very “out there” person, my pattern in the past was to attract people who weren’t as out there. I represented a bit of sunshine for their shadow, and – due to my generous nature  - I was more than happy to spread some light.

Lest I sound like an ego-maniac, that was pretty stupid and self-righteous on my part. After some good old-fashioned silence, prayer and self-reflection, it was clear that I subconsciously felt the need for cheerleaders. I knew in my soul who I was (what everyone saw in my writer voice) but in real life I needed more support. There’s nothing wrong with friends who bolster us as we find our true identity in this wonky world, but ideally, it’s from people who are on the same level as we are, if not higher.

If not, we’ll get less than professional cheerleaders who are insecure about their own pom-poms. In my case, these insecure cheerleaders would turn to me for emotional support  (after all, they had been there for me ). Having the tables suddenly flipped, I didn’t want to cheer for them, because it felt wrong. I didn’t want to cheer for insecurity and woundedness. I’d back off to keep from being bitten.

Instead of then putting on my cheerleader uniform them, I’d become a professional flag girl. “Red flag! Red flag! Run!” I’d clumsily extract myself from the friendship.

On one hand, you could say I was practicing healthy boundaries. But in reality it was years too late for that. One person even called me a bully. Ouch. Adding more sting to the wound, I felt bad for them feeling bad. Sure, I did not want to be in an unhealthy friendship, but hurting another person (even though it was their insecurities, not mine) made me feel awful. Can we say “Co Dependent for 500?”

Back to Stink and his friendships. As life would have it, he picked up a new buddy last year. I loved Darren.  He seemed very sweet and kind. They had many video game and pizza fests. His folks told me how great Stink was – that Stink was the “first friend” this kid had. I felt honored that my kid was not like the other boys at school who made fun of Darren. He was confident enough in himself to befriend a kid who wasn’t part of the jock crowd.

Cut to this year with no word from Stink about Darren. I asked him about it, and Stink said “We just don’t have a lot in common.” I sensed something was amiss, but let it go. After all, Stink doesn’t have to be friends with everyone he’s ever met. At least Stink has boundaries, unlike his mother.

But when I saw this kid’s parents at the bowling alley today – who I could tell would rather avoid me – I approached the mom. (I don’t do passive well.) I cornered her in the arcade and told her I was sorry the boys weren’t hanging out. She said it was “fine… kids drift…” but she looked sad. “Really? That’s all?” I asked. She then alluded to some play yard incident where her son was being ganged up on.

She said, according to Darren, that “Stink didn’t defend him and that really hurt his feelings. It wasn’t the Stink Darren thought he know.” Her son was hurt, and so was she. At that point, so was I. “Why didn’t you call me?” I asked her, very calmly. ”I didn’t want to be the crying mom,” she said back before heading out to find her husband in the parking lot.

Ugggg.

After extracting tokens from his hands and making him dump the remainder of his tic potion Pepsi in the trash can, I asked him about it in the car. The upshot of our conversation was that he would talk to the kid at school in the morning. It also meant a note to the parent. Curious what you think:

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Studies confirm exercise effective as tic treatment

Is exercise the anti-tic medicine we don’t take enough of? Studies confirm certain exercises help tics go away.

Boy-weightsIn 2005, Drs. Leckman & Swain published a comprehensive work on TS called Tourette Syndrome & Tic Disorders: A Practical Guide to Diagnosis & Treatment. On the question of treatment, they noted that no ideal anti-tic treatment exists. Instead, challenging tics are best tackled with a multi-pronged approach that may include education, behavioral therapy, and prescription medication. Drs. Leckman & Swain mentioned diet and lifestyle, briefly acknowledging that while exercise is generally beneficial, its effects on tics are not well-studied and therefore not well understood.

Fast-forward six years to 2011: A case report detailing the use of physical exercise to treat TS, poor motor function, and pain in a 12-year-old boy is published in the Chang Gung Medical Journal. The article describes a young boy struggling with poor health for a number of reasons. He is overweight. He is having a hard time doing activities he enjoys due to pain and tightness. His mother is concerned about the negative impact of his tics on his daily life. Health-care professionals prescribe exercise and fitness training.

Once a week for three months, the boy completes a two-hour fitness session of running, stretching, muscle strengthening, balance training, and upper-body coordination exercises. The results are very positive: reduced pain, increased flexibility, improved balance, and better writing skills. On top of that, the boys’ doctors note that their patient unexpectedly “had a reduction in the severity of his tics without taking anti-tic medication” (7).

Before concluding that exercise acts as anti-tic medication, there are a few important points to consider.

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1st Childhood Mental Health Symposium to take place November 20 in New Jersey

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to present the 1st annual Childhood Mental Health Symposium on November 20 at Rutgers University. The event will focus on neuropsychiatric disorders including tics, obsessive-compulsive disorder (OCD) and trichotillomania.

“These disorders effect tens of thousands of children across New Jersey,” NJCTS Executive Director Faith W. Rice said. “We are proud to partner with the NJ Chapter of the American Academy of Pediatrics, the NJ Psychiatric Association, the NJ Council of Child & Adolescent Psychiatry and Rutgers University to share the latest and best information with New Jersey’s medical, mental health and education community.”

Program highlights include:

  • A guided tour of the world’s largest university-based biorepository and home to The National Institute of Mental Health (NIMH) Center for Collaborative Studies of Mental Disorders- which includes samples from families with schizophrenia, bipolar disorder, Alzheimer’s disease, autism, OCD, depression and ADHD.
  • A panel discussion offering insight into the personal challenges of managing mental health disorders and the best practice approach for achieving optimal wellness. Parents and children participating in this discussion will focus on social, educational, sibling and parenting issues.

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