I used to be such a good blogger …

… but a full-time job with kids home at summer has put a serious damper on my style. I mean, kids need attention every day. EVERY DAY. Can you even believe it?

To answer the last blog’s question of “Would you tell a camp counselor if your kid had TS?” I did indeed tell the camp director. She didn’t flinch. She didn’t even twitch — and not because she doesn’t have TS. She simply didn’t react because, apparently, I’m not the only mom in the world who has a child with special needs.

I was immediately put at ease, especially with her closing statement. “I am glad you said something because if some kid acted poorly toward him, I’d want to know that he could advocate for himself or talk to his counselor,” she said, all the while sorting through our enrollment papers.”

“My son not only advocates for his tics, he also advocates for seconds on popsicles, extra pool time and extra room on stage to take his final bow,” I said.

She smiled, “He’ll have to join in line behind the other boys,” she said. “This is a public park n’ rec. That kind of behavior is par for the course.”

One week later, my son came home in tears.

“Oh, no,” I said, pulling him into my arms. “What’s got you so upset?”

“I don’t know,” he sniffled, resting his bear paws on my knee and snuggling close. “Well, I guess I do. But I just don’t want to say.”

He’d been lightly hiccupping all week, likely due to chlorine overload. I was ready for his tale of woes about the kid at the snack bar who asked him to keep his noises to himself.

“Did some kid tease you?” I asked?

He immediately bristled and pulled away. “No! What would they do that?”

“Stupid me!” I wanted to respond. Instead I went with, “Then what’s the problem?”

“Well, you’re working so hard, and it costs money to go, so I feel bad saying this, but…” he burst into tears. “I’m not a fan of the great outdoors! Oh, Mama, I am a fan of the great indoors!”

I stifled my laughter, gave him a huge, promised him we’d turn on the air condition and watch TV the following week while his sister sweated her ass off with the other campers. Problem solved.

Here are a few images of what Stink considers to be ideal activity. Thank God he’s estimated to be SIX FOOT NINE. No joke. If not, he’d be bigger than a Whale at McDonalds.

52 Weeks of TS: Week 7

EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 6 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Did you know there are a lot of things that revolve around the number seven? There are the seven deadly sins, seven stages of grief, Seven Wonders of the World, and last but not least all the things that I have to do in sevens. Good morning, OCD. Of course, I waited until week seven to discuss this.

There are different ways people with OCD exhibit his or her obsessive compulsions. Some people’s obsession revolves around cleaning and straitening objects, some revolve around germs and some revolve around numbers. If your OCD revolves around numbers, you might feel the need to lock your door, or touch something a certain amount of times based on your number. If you don’t do it right, there might be the fear of something bad happening to someone, perhaps a loved one.

Like TS, it varies from person to person. For me and my OCD I have the cleanliness, straightening, germ, and number compulsion. I do a lot of things in seven, but not for the fear of something happening to someone, I do it because it doesn’t feel right until I do. I brush my teeth in sevens, (seven sections, top and bottom seven brushes, seven times) I put on my deodorant in seven swipes, I pack my cigarettes seven times seven, and the list goes on.

I have two entrances to my kitchen, one of my newest things to do is walk in a circle through my kitchen seven times and touch the door each time around before I can sit down at my desk. With all my tics and OCD, I’m not sure how I find time to do anything else.

I’m really shocked at the ignorance of society in the world today.

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Ask Dr. Ticcy: Do my tics mean that I have TS?

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

My younger brother saw a doctor about his tics because they were bothering him. He was diagnosed with TS. When I found out, I started reading about TS because I wanted to learn more about the condition. Then I started noticing that that my dad, my older brother and I all do or say things that fit the definition of a tic.

Is it possible that we (my dad, older brother, younger brother and I) all have TS? I’m wondering if everyone in my family has TS, but my brother’s tics are the worst so he is the only who saw a doctor and got diagnosed?

Thanks!

TS or Not?

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The story of Canada’s only Tourette Syndrome service dog

The following story comes to us from Jodi Laycock of Luseland, Saskatchewan.

Life Before Sabbath

As a child growing up in the 1970s I always had a tendency to display odd behaviours that would often get me in trouble, like pinching or poking other children and making strange sounds or wild, disruptive gestures.

“Stop that,” I was told.

“You’re causing a scene.”

“You need to learn to behave.”

“What’s wrong with you?”

I heard this day in and day out, and I would retreat deeper into myself, knowing that I had no control over my ‘traits.’

I began to avoid going out into public. Soon I got a reputation as a fun crusher, because I’d never accept invitations to go anywhere. With time, people simply stopped inviting me. So again, I spent more time alone, wondering why I couldn’t just act ‘normal.’ I was very aware of what I was doing. I knew it as my hand slammed into my nose over and over so hard it nearly broke: I simply couldn’t stop.

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52 Weeks of TS: Week 6

EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 5 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

This week started off like a horrible nightmare, me balled up in the fetal position tears rolling down my face.  What a way to start the week.  This all happened on Monday.  Sometimes the OCD thoughts are just too over whelming.  It’s not fun being a 37-year-old basket case, crying on his bedroom floor.

I woke up Monday nice and early and in a good mood.  I think of myself as an early bird, always up around 7 a.m.  I’ve realized lately that it’s probably the fact that I have OCD and anxiety disorder that causes me to get up so early.  As soon as I open my eyes, my brain is in full speed, obsessing about the day and what needs to be done.

Does the cat pan have to be changed, are there dishes in the sink, do we have cockroaches? I have to email that person, etc, etc, etc.  This goes on for about 10 minutes until I get up and start doing everything, and it continues throughout the day.  I think the most used app on my phone is the “gotasks” app. I make notes and reminders on that all day and night.  I will even wake up at 2 in the morning, obsess about something, and grab my phone and make a reminder for myself.

Friends laugh at me and comment on how organized I am, but it’s exhausting.

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NJCTS posts letter to editor for CARE for Tourette Syndrome Act of 2014

The following letter to the editor was submitted by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to newspapers and publications across the nation earlier this week.

Dear Editor:

I’m pleased to announce that the New Jersey Center for Tourette Syndrome is actively garnering support for the passage of a critical bill, the Collaborative Academic Research Efforts (CARE) for Tourette Syndrome Act of 2014 (H.R. 4221). The CARE Act represents an exciting opportunity for the entire TS community—calling on our government to stimulate research to increase understanding of and improve treatment for Tourette Syndrome. NJCTS  is collaborating with the Tourette Syndrome Association to ensure this initiative receives sponsorship across the country.

Originally introduced by NJ Congressman Albio Sires in December 2011, with a Companion Bill introduced in the Senate by NJ Senator Robert Menendez shortly thereafter, the CARE Act amends the Public Health Service Act for the expansion, intensification and coordination of the programs and activities of the National Institutes of Health with respect to scientific and clinical research on Tourette Syndrome. The CARE Act does not authorize any new funding for TS, but rather reallocates existing funds towards new programs to more effectively research and collect data on TS.

The Act would require the NIH to award grants and contracts to academic, healthcare and other institutions to support the establishment of four to six Collaborative Tourette Syndrome Research Centers in different regions of the country. These centers will host high level, concerted, scientific and clinical research into TS and related disorders. Lastly, it would facilitate the collection of important data on various aspects of TS which can be used to provide a better understanding of the disorder, and assist with the development of programs and strategies aimed at advancing the TS research agenda.

The push to forward the Collaborative Academic Research Efforts for Tourette Syndrome is a important turning point for the TS community and I’m pleased that the national Tourette Syndrome Association has joined with the New Jersey  Center for Tourette Syndrome on this issue. Together, we are urging citizens to write to their local elected officials asking them to support H.R. 4221. For more information, please visit www.njcts.org.

Sincerely,

Faith W. Rice
Executive Director
New Jersey Center for Tourette Syndrome & Associated Disorders, Inc.

YOU can be a part of the “SynapTic Adventure” !!!

With a mission of empowering, educating and funding global independent and student filmmakers, Haydenfilms Institute continues to support local film projects happening in Eastern Pennsylvania. That commitment has most recently led to a partnership with local filmmaker Stephen Dijoseph through a unique fiscal sponsorship and film showcase event.

The showcase took place on May 21, and featured Doylestown, Pa., filmmaker and musician, Stephen Dijoseph, and his multi-award winning short film A SynapTic Adventure: Tourettes and Beyond, a first-person short documentary exploring his personal journey with Tourettes and how living with the syndrome has inspired his creative mind. With hopes of turning the short film into a feature documentary, Dijoseph announced the launch of his crowdfunding campaign and fiscal sponsorship with Haydenfilms Institute during the event.

The campaign is designed to fund Dijoseph’s sophomore project, A SynapTic Adventure: The Creative Force of Tourettes and Beyond. Taking the director’s chair again, Dijoseph seeks to further present “the art in the syndrome”, take a closer look at the creative force that emerges from this mysterious neurological “variance”, and inspire hope in others living with the syndrome.

Henry Nevison, an Emmy-nominated documentarian and panelist at the Showcase explains, “Why I’m so excited to be a part of the film [is because] Stephen’s approach is an exploration of how to tell a story through metaphor.”

Throughout the campaign, contributions can be made on the Indiegogo campaign page for A SynapTic Adventure: The Creative Force of Tourettes and Beyond. You can visit the site to learn more about the campaign and make a contribution. Rewards are also provided to each contributor and include anything from a signed copy of the DVD to a vacation at a Hilton Grand Vacation Resort in Hawaii! The campaign will be active through July 3.

“We are excited to incorporate crowdfunding as a tool to raise awareness for the Tourette Syndrome Community through Stephen Dijoseph’s documentary project,” HFI Founder and Executive Director, Hayden Craddolph says. “We believe that crowdfunded films can bring topics to the mainstream that ordinarily may not receive funding from traditional sources.”

To become involved, become a partner during the campaign or learn more about the Fiscal Sponsorship Program at Haydenfilms Institute, please e-mail Melissa LaRosa at mlarosa@haydenfilmsinstitute.org.

SynapTic Adventure: Tourettes and Beyond!

Hello friends!

I am VERY happy and excited to join your blogging community! I will be writng and sharing stories from my SynapTic Adventure Blog, as well as interviews of people around the world who have come forth to inspire and encourage all living with Tourettes and it’s variable characterisTics. I and my ‘SynapTic Adventure’ team are hard at work for National Tourettes Awareness Month 2014. Here are a list of events going on:

  • JUNE 12 @ 7pm – Stephen Dijoseph’s SynapTic Adventure LIVE educational/awareness program at Monmouth County Library (see our site for details) in New Jersey
  • Now till July 5Ticstarter: The Creative Force of Tourettes” – This is my new documentary project which will follow me around the US on our “TOURette 2014”, presenting the message of ‘SynapTic Adventure :Tourettes and Beyond’ with film , concerts, in-depth discussions and interviews with “celebrity” Touretters and the people of the communities we visit! Please join our adventure and see how you can help it happen!

I am proud to say that expert researcher of neurological conditions/author/speaker Dr. Robert Melillo and his wife Carolyn, have join our team to share their amazing expertise and support. I will be interviewing them in the coming weeks so stay tuned!

Please check this blog bi-weekly for new stories and updates.

Let’s change the way the world perceives Tourettes…and Beyond!

New TS study finds parallel between humans and mice

The writer of this guest blog, Ethan Macdonald, is a researcher of Tourette Syndome and cognitive science at McGill University in Montreal, Canada, who had challenging TS symptoms during his adolescence.

The recent study ”Histidine Decarboxylase Deficiency Causes Tourette Syndrome: Parallel Findings in Humans and Mice” (Barlan et al., 2014) examined a rare mutation in humans with TS. So rare in fact, that it has only been identified in one gene family. This particular mutation works well for creating new animal models.

Unfortunately, since the mutation is rare, the findings from this study may not apply to much of the TS population (they especially might not apply to those whose symptoms decrease with age). That said, some articles (Karagiannidis et al., 2013) suggest that other histamine-related mutations are more prevalent in the TS population. This is hopeful: perhaps there could be some therapeutic overlap.

Genome-wide association studies (studies that take a look at many common genetic variants in different individuals to see if any variant is associated with a trait) have failed to identify common mutations for TS. Perhaps this is because of small sample sizes. In this study, no causal mechanism was found between genetics and human behavior. I would consider the title of the paper to be a bit overstated given this.

The researchers hypothesized that the family with the mutation had lower histamine levels, which lead to higher dopamine levels, which lead to more tics and that this could be replicated in a mouse.

Here are some key points from the study: Continue reading

52 Weeks of TS: Week 5

EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first four weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Anxiety is an evil beast living inside me, taking up residence and using my body like an apartment building. It’s living in apartment 3-B, right next to OCD and ADD. I never said that they could move in, in fact they never even signed a lease. Sometimes I wish I could evict them, but if they never moved in what would you be reading right now.

Every Sunday I reflect on my past week, and every Sunday I’m amazed at all the activities and experiences that have occurred. This week has been quite an interesting one to say the least. Monday I had my physical for my life insurance policy. Now this was not a normal physical where you go to the doctor’s office, the doctor actually came to my house. At first I thought, wow, this is convenient. OH NO! I did not take into consideration that he was going to be taking my blood and need a urine sample.

Oh yeah, I had to urinate in a cup in my bathroom and transfer it into two test tubes. I gave him the test tubes and watched him put the test tubes on my dining room table. He then proceeded to take my blood. Yep, I sat at my dining room table as this stranger took my bodily fluids. I sat there and just stared at these vials of blood and urine on my dining room table. I just silently screamed in terror and disgust. I spent the rest of the day cleaning my table, and bathroom. (Excuse me while I go antibacterial my hands).

That night, was not the best night’s sleep. I don’t normally tic when I’m asleep, but there have been occasions when I tic in a dream and actually tic in reality and wake myself up. I did this that night, and despite the fact that I had just went to sleep two hours prior, I couldn’t get back to sleep.

My OCD just started going in over drive. My brain went into full gear, and it didn’t help that my husband was snoring next to me. It’s been thirteen years with my husband, and his nightly snoring. I’ve pushed him, rolled him over and took his pillows away, but he still does it. I’ve considered earplugs, but then my OCD goes on a tangent.

What happens if I have the earplugs in and there’s an emergency in the building like a fire? I won’t be able to hear them pounding on the door, and my husband sleeps through everything. So in other words, earplugs equal death. My tics start about fifteen minutes after I wake up, so after about a half hour sitting in bed, my brain is racing, husband snoring, and tics a ticcing, I got up and went to the living room to watch the brilliant TV programming that is on at two in the morning.

On an exciting note, I have made an appointment with a TS specialist at Columbia University.

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