Did you miss the 5th annual NJ Walks for TS at Mendham? Catch up on it here!

Since 2010, NJCTS and New Jersey’s Tourette Syndrome community have gathered at Borough Park each November for family fun run/walk to promote TS awareness and support the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Education Outreach Program.

On November 15, hundreds of people braved the cold to have fun, raise tens of thousands of dollars and show the state the strength of the TS community! In case you couldn’t join us, we have all the resources you need to help feel as if you were ACTUALLY there! Here are some links:

More than $32,000 has been raised so far, and donations will be accepted through December 15! YOU CAN DONATE HERE!

The 5th annual NJ Walks for TS at Mendham was a “day to remember” for all!

We have THREE photo albums, each with dozens of beautiful shots in them, on our Facebook page! If you see yourself, tag yourself!:

  1. Photo album No. 1
  2. Photo album No. 2
  3. Photo album No. 3

Do you see something that’s missing from this list? If so, let us know! We’ve got lots more information we could get you!

Thankful for Tourette’s and anxiety?

 

Thankful for Tourettes and Anxiety

I hope your Thanksgiving was as lovely as mine was. It’s always hard to be separated from family on holidays like this one, but we’ve been blessed with a church that has adopted us for every holiday. Hubby and I spent a wonderful day as honorary members of our pastor’s family, along with their own children, another friend, and two other Air Force families that were far from home.

It got me thinking about how easy it is to be thankful for the pieces of our lives that are obviously good.

Sweet husband – Good thing

Healthy baby girl (due in March) – Good thing

Warm, safe house – Good thing

Loveable, floppy puppy – Good thing

Juicy, succulent turkey – Good thing

But what about those kinks, the parts of our lives that throw us for a loop and make us breathe hard? Those things that have tried our patience and kept our plans from fruition? What about thing x, that makes us say, “If only I didn’t have x in my life, it would all be grand.”? Are we thankful in the midst of those things as well?

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You can be a part of #GivingTuesday!

Tuesday, December 2 is #GivingTuesday! As part of a global movement that inspires a celebration of giving to kick off the holiday season, the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is proud to be a part of #GivingTuesday.

You can join in this effort with a donation to NJCTS on December 2! With #GivingTuesday, the holidays can be about both giving AND giving back! Everyone wins! And joining the movement is as easy as 1-2-3:

  1. Simply decide you’re going to donate. Then, once you do, then share the photo below with EVERYONE you know on Facebook and Twitter to announce that you’re going to donate to NJCTS on December 2.
  2. Donate to NJCTS on #GivingTuesday by visiting http://www.njcts.org/donate-form.php.
  3. After donating, come back to the TSParentsOnline blog to share another photo we will provide that will announce that you donated! You also can get this “I GAVE TO NJCTS!” photo by visiting the NJCTS Facebook page.

Thank you for considering being a part of #GivingTuesday!

A little Thanksgiving poetry as times they are a changin’

Twas the day ‘fore Thanksgiving

And all through the house

Stink was ticking acutely

Like a video game mouse

His mother was worried

It seemed too much to bear

With housecleaning and shopping

(Let’s not talk of her hair!)

It hadn’t been cut

In three months … maybe more

Plus the pit bull had puked

On the living room floor

Between frets about job hunts

And descending in-laws

It dawned on this mama

That there was a flaw

Maybe she didn’t need to worry so much

Perhaps on herself she was being too tough?

A big bit of crazy talk stuck her head

“Maybe … just maybe … I mean

Maybe… instead

God isn’t interested in a few tics and twitches”

Is it possible he’s telling her the secret to riches

Isn’t focusing much longer on a wonky condition

That if left to her brain, would cause nothing but bitchin?

“Is it possible,” says God, “That you’re meant for some writing

That’s a bit more uplifting… a lot more exciting?”

I’m starting to think, folks

I’m over Tourettes

I’m not over YOU

But for me what is best

Is to focus on the wonderful things of my boy

The laughter and humor… the love and the joy

My son brings such magic

Despite a few shakes

It’s time that his mother

Stops making mistakes

It’s time she stop writing about what cannot change

But go back to words that can show off her range

I’m missing my Silverstein … my Suess … and my Dahl

I’m missing the passionate fun of it all

So while my work can be archived …

And soon there will be a book

My blogging is going to have a new look

It will focus on poetry … on humor … on laughter

Let the sunshine explode from floor to the rafters

May I write some new things

To the delight of your kids

To bring out the fun that we sometimes keep hid

I hope that you’ll join me on the new path I travel

It will take a wee bit for this all to unravel

But when it does, I’ll pass on the new link

I’d sure love your readership

What do you think?

52 Weeks of TS: Week 29

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

Oh to be back in New York City! Anxiety is here at full force, and OCD is crazy. What is it with this city? I’m here for a week, but I can’t wait to get back to Martha’s Vineyard. I think I need to move to a dessert island. The time I spent on Martha’s Vineyard was so relaxing, and now I’m trying to acclimate myself back to my New York state of mind. It’s hard. This whole week feels like a nonstop nightmare. I’m only here for a week, so I’m trying to get everything done that I need to. Work, doctor’s appointment, meeting, and the social events, it’s never ending.

I’m going to reflect a little on my last week’s entry, mainly my OCD’s. I complained about coming back to my house and it being in disarray. I know it was just me who thought it was in disarray, but it got me thinking. I have spent my whole life dealing with my OCD, but there are other people around me who have to deal with my craziness.

I give my husband a lot of credit to have the patience to deal with some of my weirdness. I look back and think, I have had quite a few different roommates in my adulthood, and I know they have all had to deal with my OCD. I feel rather bad for them, but I have to say, none of them have been too overwhelmed dealing with me.

Finally having some alone time this week gave me a lot of time to think. Even though I had a rather busy week it was nice to have some alone time to think. The only problem is, some of the thoughts that rolled through my mind were a little obscure.

One of my thoughts was that TS is a neurological disorder and animals have brains, is it possible for an animal to have TS or Parkinson’s? Animals get tumors, seizures and cancer like a human does, why not other things? What exactly would a dog look like if it had tic, or what would their OCD come out as? I guess it’s just one of those weird things that goes through my mind.

These strange mental journeys bring me to other places, too, the thought of the struggling countries all over the world. We in the United States have a pretty good medical institution where money is always being put into different medical studies in hopes to learn more. However, there are places all over the world where families struggle to feed their children or themselves and a medical system is close to nonexistent.

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Nerd alert

nerd alert

My bff is going through a divorce. Watching your spouse move out of your home apparently is not a lot of fun, so the kids and I took her out on Saturday night. My first hope was to hit a museum, because when a marriage breaks up, it seems like an appropriate time to look at pictures of naked cherubs and drink over priced lattes in a cafe. But we ended up shopping instead.

For those of you who know me, shopping isn’t really something I do. Thrifting? Yes. Malls and stores? Not so much.

But this experience was different. We took in the sites and sounds of downtown Pasadena. The brick buildings, window displays and bustling coffee and trinket shops were balms for our weary souls. She took a mental break from her worries, and frankly, I took a mental break from mine.

As we sat down to dinner at a place that served over 100 forms of burger, it dawned on me that I really don’t have as much fun as I’d like. THAT needs to change. And whose fault is that? Mine. Duh.

For that evening, I didn’t worry about the prices of food. I didn’t say no to my daughter’s request for a $6.95 bowl of frozen yogurt. I didn’t complain when she threw it in the trash five minutes later. “This isn’t like the yogurt I’m used to,” she whined.

“Yes, Stink, you CAN have that set of black nerd glasses. Along with your muppet hair and Pikachu hat, you look AMAZING!”

My kids are 11 and 10. It’s time that they got out of their little suburb bubble. It’s time for me to get out of mine.

That night, Stink was exceptionally twitchy and ticky. Pip and I will be a bit harder to convince, but not Stink. He was exceptionally jubilant that evening.”I LOVE the city!” he said. “I could live here!”

“Me, too,” I thought, “Me, too. Maybe one day I will. Why not dream? A book could lead to a play which could lead to a movie. Why not dream? I used to dream. It’s never too late.”

At the end of our meal, waiter came up to the table. Stink had just finished showing T his talent show magic act. “Kid, I have to tell you, you are amazing. I mean it. You are so funny. You are awesome!”

Stink responded in kind, “YOU are awesome! I always tell people that! Stay awesome!”

I will, Stink. I will.

I love my wacky, big haired, over -the-top performer. He’s teaching me to have fun. He’s teaching me to be awesome.

On that note, readers, stay awesome. Because you are awesome. It’s never too late to dream.

We can’t always change tics, but we can change our minds about how life can be. We can accept what we can’t change, change what we can, and have the wisdom to know the difference.

Who is with me? Who wants to sign the “I’m doing something new each month pledge?”

Sign in with a comment. I’ll hold you to it.

What if my baby has Tourette?

What If My Baby Has TourettesWill my baby have Tourettes? It’s a question I’ve asked myself many times. I’ve also wondered if my anxiety and OCD tendencies will be passed down as well, which leads to the next question. So what if Jelly Bean does have my struggles? What then?

They’re not questions easily answered. To begin with, there’s the question of the heredity of Tourettes. Will my child have the same tics that I do? Will the tics be worse or better? What if it’s really severe Tourettes, the kind that draws rude stares and comments from complete strangers?

Tourettes and Heredity

So what really causes Tourettes? In short, researchers can’t identify one specific cause yet, but it’s not for lack of effort. They have discovered, however, that there are quite a few patterns in the way Tourettes reveals itself.

As to the likelihood, research shows that we honestly don’t know what causes Tourettes, but we do know that it seems to travel in families. MedicineNet’s article, “Tourette Syndrome: Is Tourette syndrome inherited?” states, “Evidence from twin and family studies suggests that Tourette syndrome is an inherited disorder.” The CDC article, “Tourette Syndrome: Risk Factors and Causes,” says that studies in genetics indicate that Tourettes is inherited.

This inheritance isn’t as simple as being double jointed or having a widow’s peak hairline. One possible cause for some cases of Tourettes comes from the SLITRK1 gene, according to the National Institutes of Health. It isn’t likely, however, that this mutation is the cause for the majority of Tourettes cases, as the article states there are too few people with Tourettes and this mutation to draw complete conclusions.

Another possible explanation for some cases, according to Medical News Today’s article, “Rare genetic mutation confirmed as a cause of Tourette Syndrome,” is another genetic mutation, this time having to do with the disrupted production of histamine in the brain. Again, this genetic mutation can’t account for all cases, however. Just possibly some.

The majority of Tourettes cases, however, seem to come from a combination of mutations and genetics that are passed down through families, as well as possible brain damage in some cases. Here are 3 statements from the CDC that sum up what we know about Tourettes. Continue reading

Tics and speech difficulties in people with TS

Tics are an important feature of Tourette Syndrome (TS), whilst impaired fluency of speech is the dominant overt feature of stuttering. To establish any relationship, we looked at tics in people with TS and people who stutter and have found that tics are present in both groups. We also found that some people with TS had impaired fluency of speech in specific tasks (reading) that were similar to those that we saw in people who stutter.

We analysed the stutter events in both groups by looking at repetitions of parts of words, prolongations and blocks where people get stuck and stop the smooth flow of their speech. One thing that emerged was that not all TS participants had stutters and not all people who stuttered had tics (about 50 percent of the TS group had impaired fluency of speech and about 50 percent of the group of people who stuttered showed tics).

This shows that there were crossovers of these features for some participants. We hope to be able to secure funds to investigate this matter further by conducting an imaging study that will compare the way the brain works in groups of participants who show both types of symptom with those who only show the some symptoms.

This may provide ways of identifying participants in both groups of participants where long-term problems can be prevented, help identify those in need of intervention and suggest new ways of addressing their problems in treatment.

This research was completed by L. De Pellerin as part of an MRes. If you have any further questions regarding this research please contact Miss Seonaid Anderson.

52 Weeks of TS: Week 28

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

I’m spending my time in a writer’s paradise — well, anyone’s paradise. People from all over the world come to Martha’s Vineyard. It’s the “Lap of Luxury” for the New England area. You have it all — sun, relaxation, great food, and much more. I have been trying to take advantage of all that I can, trying to relax and get some sun. I have realized that I don’t tic as much as usual when I am relaxing on the beach.

Could it be the vitamin D from the sun, or am I just that relaxed that my tic decided to take a break? I’ve tried to pay attention, and I’m pretty sure I’m not suppressing them. I have been suppressing my tics for so many years, it’s second nature. Half the time I’m not even sure if I’m suppressing or not. However, I have found it interesting, and when I get back to New York, I want to try to take some vitamin D supplements. Hey, why not? It’s worth a shot. Just one more attempt to escape from the beast inside of me.

I have been quite relaxed in the sense of my anxiety, but still have been a bit stressed out. I know that sounds like an oxymoron, but after 37 years, I have realized there is a difference. When you look up stress in the thesaurus, anxiety is one of the top words, but there is a difference — especially if you have anxiety disorder.

They are very similar, but I have been so relaxed, that my anxiety level has been so low, and life is quite enjoyable. Anxiety controls and takes over your whole body, but I feel as if stress is just in your mind. You can breathe off some stress, but at least for me the anxiety just lives there. If you’re anxious, you almost have to just ride it out, and I’ve been riding it out for a long time.

You think that living in the “Lap of Luxury” would be stress free, but paradise isn’t always what it seems. The house that I’m staying at is my cousin’s and her wife’s home, and there are many people staying there. This week the number of permanent people has increased to 10 people. We all have our own separate spaces — there is the main house and a guesthouse. Still, with the amount of people, there are bound to be some head butting issues.

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“Does My Tourettes Make You Uncomfortable?” Why telling someone you have Tourettes is hard

Talking Tourettes 4

Telling others you have Tourette Syndrome is hard. Actually, hard is an understatement. It’s difficult enough to accept that you don’t have complete control over your body; it can be near torture to admit that to others. While self-advocacy is one of the keys to creating Tourettes Awareness, no one said it would be easy. Here are some steps you can take to make it just a little easier:

Choosing to share your secret

Before you tell someone you have Tourettes, you’re somewhat safe; it’s like living inside a fortress. People who interact with you enough probably know something’s different, but you still hold the knowledge. Only you hold the key to your disorder and all the struggles that come along with it. Like living in a fortress, however, you’re also painfully aware that you’re living alone.

No one sees the tears, and no one sees how much effort it takes for you to stand there calmly not blinking, not squeaking, and struggling not to do any of the other things your body wants to do. Only you know why those things slips out and make you look different from everyone else. You long for someone to bear your burden with you, for someone to tell you it’s okay. But no one can tell you it’s OK if they don’t know there’s a problem in the first place.

Talking TourettesChoosing to tell someone you have Tourettes means entrusting them with a piece of yourself. It means you’re willing to risk looking foolish in front of them. You’re giving them the power of knowledge, knowing your vulnerability. Talking Tourettes 2You’re admitting, “I’m different.” In a world where we love to share pictures of our perfect deserts, perfect families, perfect lives, it’s hard to admit you’re broken. But you know that if you’re going to find someone to help bear your burden, you must first share it.

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