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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Ways to Support a Friend with Tourette, Part 4: Don’t point out tics

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 fourth 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…

Dontpointoutnewtics

Believe me, your friend is probably very aware of his or her new tic, and probably isn’t very happy with its arrival. Pointing out a new tic is like saying, “Look, Buddy! You’re doing a new weird thing!” Instead of being grateful, your friend will probably just get irritated. Believe me, this is not the way to start a conversation.

We all need to “Let It Go” sometimes

I’m not sure if you have a higher tolerance for song remakes than I do, but if I hear one more remake of “Let It Go,” I’m going to lose my marbles.

And yet, there is much irony in my irritation, for the real truth of the song did not really register in me until Sunday. You know… the part about how I need to “Let it Go.”

See, I don’t like to let things go. I’m an A-Personality, over achieving, success driven city dweller. I will get a job when my husband loses his job. I will give everyone a very Merry Christmas despite sleeping less than six hours a night. I will be involved in my kids’ school, homework and church life. And I will make sure those kids clean their rooms and do their chores because, joy be darned, there’s something called a work ethic also. “I don’t care if your friends’ parents don’t make their kids take out the garbage or clean the dog poo. You be responsible and be part of this family!” is my mama battle cry.

On the surface, my expectations aren’t unrealistic. I know in my gut my kids aren’t being asked to do more than they can handle.

In my gut, though, I am aware that my reaction to them is sometimes too intense. How do I know this? Because it feels crappy when I can feel my pulse racing over an unmade bed — no matter how many times I’ve asked them to take five minutes in the morning and do it.

It feels awful to shove them out the door every morning like a drill sargeant to ensure we make it to school on time. “Do you have your lunch box!? … Stink, you need that permission slip! … Pip, did you brush your teeth oh my gosh what is the problem DON’T COMPLAIN TO ME WHEN THEY FALL OUT!

To be fair to myself, I’m not this uptight all the time. It happens about once every three months, and lasts about three weeks until I get my head out of my arse. Unluckily for my family, that cycle happened in September — right after my job was downsized. Lucky for them, however, my daughter smacked me to my senses this past Sunday.

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52 Weeks of TS: Week 20

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

So this week I’m going to start off talking about today. I’m a person who tries to think of my glass as half full — today it was filled to the rim. I just returned home from the TSA national walk for a cure, and I just don’t know how to describe my feelings. I’m so overwhelmed with joy at the great turnout and the support we have out there. It was so great to be among more than 200 people walking for this cause.

I felt free to let my tics out and not feel as if I had to suppress them and or be judged by them. It was also great to meet so many new friends, and families and fellow supporters. I do have to say I’m in a little pain because I did let all my tics out, and as we know we feed off fellow ticcers, so my tics were having a field day. I took a Klonopin to try to calm myself and hopefully calm the tics a little bit and some Tylenol for the headache and neck pain from the tics.

Overall, this has been a good week. I did hurt my wrist and am wearing a brace because of one of my tics. I have a tic were I squeeze my wrist and stretch it, and I think I might of strained a muscle. This is just another thing I have to deal with, having this strange disorder.

I think this tic is like a cover-up tic. I do it on the train, or when I’m somewhere that I’m trying to suppress my other tics. I think many of us do this, we have cover up tics. Even though we try to suppress our tics, we are still doing something to feel the release. I do this a lot at work too, because I’m trying to suppress my tics there and also I constantly have the handshakes.

There have been a few times that clients have notice my hands shaking, as if I drank too much caffeine, and I tell them it’s part of my TS. I actually discussed this with one of my clients this week. It might bother a person at first, but then they see I still do a stellar job on their hair. Who knows, maybe the shaking makes me better. 🙂

I did have a funny thing happen to me this week.

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Dr. Phil to misrepresent Tourette Syndrome on Thursday?

Just heard and saw some disturbing information. This Thursday, Dr. Phil is having on a girl with Tourette Syndrome. The description of the show is so disturbing. What’s even more disturbing is his description of TS symptoms on his website. It has made me so angry and sick to my stomach. He lists crotch touching and inappropriate sexual behavior as symptoms of TS. How are people like him allowed to misinform the public?

It’s all right here: http://drphil.com/articles/article/509/

Did some research on this. The definition he is using on his website is from a book published back in 1988. So he is using research done in the 80’s to educate people about TS. Have called CBS to complain about the use of old, outdated research on TS.

Ways to Support a Friend with Tourette, Part 3: Reassurance is calming

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 third 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