52 Weeks of TS: Week 21

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 20 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Have you ever tried to do something that you know is just stupid? We all have done something in our lifetime that we ask ourselves, “Why did I just do that”? Well I did that this week.

I have spoken to many other people with TS and what has helped them in the past. Now I’m not suggesting that anyone attempts to self-medicate or try any path that is not suggested by their doctor, but I have talked to a few people that have said that marijuana has helped them.

I smoked marijuana when I was younger — much younger — and remember it did not work well with me. Having anxiety disorder, smoking just made me crazy, but I thought maybe that I would give it a try again. Our bodies change over the years, and I thought there’d be no harm in trying. Wrong thought!!

Not that it harmed me, but I took the smallest hit a person could take, not even holding it in. I took a hit as if I was smoking a cigarette, in and out. Then next five hours were a roller-coaster of fear, anxiety, paranoia, and major ticcing, or major suppression of those tics.

As I said, I never suggest that anyone tries something that is not suggested by their doctor, especially something as trying, or purchasing illegal drugs. This might help some people and maybe one day the government will legalize marijuana for medicinal purposes, and that’s the only time anyone should attempt to use this for their TS — under a doctor’s supervision. Some things work for some people, but this was not one for me.

Speaking of attempts to find something to help our TS, I spoke last week about a study that there is an enzyme in yogurt that is rumored to help calm down our tics. I did another self-study this week and had a yogurt every morning to see if I noticed any difference. I eat yogurt all the time, but I have eaten it in a while and when I did, I never really paid attention to my tics or lack of tics.

This week I did, I ate a yogurt every morning and honestly didn’t really see a difference. Maybe this is one of those things that it takes time, but once again, I have found another thing that did not work.

This week has been a little hard for me.

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Ways to Support a Friend with Tourette, Part 5: Offer help when needed

Tourette Syndrome is a two-sided coin. One side is that of the individual with the disorder, the point of view from which he sees the world. Then there’s the other side, the perspective of all those who are close to that individual.

Tourette can be an awkward thing to talk about. It’s gotten easier for me as the years go by, but when I was younger, it was the last thing I wanted to admit to myself, let alone other people. And yet, sometimes it’s just the elephant in the room, something you can’t just ignore. As a friend, it’s important to know how to address your friend’s Tourette delicately and honestly. It can strengthen your friendship, and it can build your friend like little else can.

Here is the fifth of 6 ways to love on your friends with the neurological disorder, Tourette Syndrome (TS), as told by someoneone with Tourette:

6Waystosupportyourfriendwithts

If You’re Close to Someone with Tourette… Continue reading

List of all NJCTS webinars, including October 1 on trade secrets of a Tourette doc

THIS WEEK’S WEBINAR

Trade Secrets of a Tourette Syndrome Doctor

October 1, 2014
Presented by Tolga Taneli, MD

Would you like to learn some great tips on speaking with your child’s doctors?  How about getting them all to collaborate with each other about your child?  Did you ever wonder about the drug approval process?  Learn about this and more in this webinar!

REGISTER FOR THIS WEBINAR »

OTHER UPCOMING WEBINARS

Mental Health Issues? Asians have those? Understanding the stigma surrounding mental health for Asian and Asian Americans

October 8, 2014
Presented by Dr. Andrew J. Lee
More information about this webinar »

Bullying & Vulnerable Populations

November 19, 2014
Presented by Nadia Ansary, Ph.D.
More information about this webinar »

Monsters, Robbers & Nightmares, Oh My! Simple Ways to Improve Your Child’s Sleep

December 3, 2014
Presented by Courtney Weiner, Ph.D.
More information about this webinar »

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VIDEO: Tic cycle update

Hey! So, something a little bit different — a video! One of the reasons I decided to do this is I fee like so much of the time people don’t actually get to see what Tourette’s looks like. So, this is a way for me to mix it up a for you to get a better idea of what TS is like. Feel free to comment and let me know what you think!

https://www.youtube.com/watch?v=Mt4GVHw25QE

FantasTIC Friday No. 1: Tic, tic, tic … BOOM!

For myself, as much as to benefit others who might be looking for tic reduction, I am dedicating Fridays to all things FantasTIC about TS. This is included, but not limited to:

  • Stink’s tics
  • My emotional journey
  • My book
  • My husband’s dog
  • My beautiful daughter
  • My job search
  • My crazy nut job pit bull mix, and more…

Tics are through the roof — the worst yet

I swear, we had a great run. I mean, super great – to the point where I kind of thought “Ha ha! Stink is dodging the tween bullet of escalating tics! We’ve escaped!”

But then the school year started and he began stinking like a gym bag and eating more food than the rest of us combined, including our ridiculous buffoon of a dog. Puberty is on. And so are the tics. Really excessive vocals that sound like quacking and “hey hey hey” over and over. Head shakes. Eye rolls. Rapid talking verging on hyper. All started Monday.

My emotional journey — skip this part if you’ve had enough wine for the night

While I’d love to say I’ve remained calm, that is not true. I had a full scale melt down on my spouse yesterday. I mean, epic. It went something like this:

Me: Do you hear those sounds? They are non-stop. I’m really really worried.
Him: Yes, I hear them.
Me: But are you worried? I mean, aren’t you kind of freaked out?
Him: No, I’m not freaked out. (side note: my husband must be a robotic deaf automaton) But yes, they are bad. (side note: at least he can recognize the increase so I’m not completely nuts.)
Me: OK, we need a plan. WE. NEED. A. PLAN.
Him: We can’t fix the tics.
Me: I know! But what about a plan! Something! Anything! How about looking into medication if it doesn’t bet better?
Him: For him, or you, because this kid is fine. It’s not affecting him.
Me: It’s affecting me!
Him: Then go get some pills!
Me: How about I just start downing copious amounts of liquor! And smoke a bowl of high grade doobage. Hey, I hear doobage is great for tics.
Him: How about you just calm down and get out for a while.
Me: Fine! I will! But if this continues, and we don’t medicate it, I’m going to be getting out of this house every day for the rest of our life and that sucks!

Other choice words followed. It was not exactly Fantasy Island.

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