Applications now available for 2015 Tim Howard NJCTS Leadership Academy!

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The Tim Howard NJCTS Leadership Academy is a four-day program that takes place in state-of-the-art dormitories on Busch Campus at Rutgers, the State University of New Jersey in Piscataway. The 2nd annual Leadership Academy will take place August 6-9, 2015, and applications are available now for this incredible opportunity!

Participants will work, play, eat and sleep at Rutgers and enjoy a wide range of activities, such as:

  • Interacting with doctors, psychologists, and other experts in the field to learn more about Tourette Syndrome!
  • Being a part of large group discussions and small group discussions with other teens and young adults with TS. You’ll hear their stories and have opportunities to share your own!
  • Participating in a variety of recreational activities, ranging from swimming, sports, yoga, games, team-building activities, movies, singing, and more!
  • Forming friendships and connections with other participants, and meeting successful young adults who will serve as Coaches, guiding participants through the weekend’s events!

Guest speakers include leading experts in their field, all of whom have extensive knowledge of TS, and you’ll learn more about TS from a variety of different perspectives, including the biology of TS, the psychology of TS, and how TS affects people socially.

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Programming

Programming is broken into three tiers that explain Tourette Syndrome and associated disorders from these perspectives:

  • a biological perspective;
  • a psychological perspective; and
  • the social implications of these disorders.

Topics include

  • brain activity with TS
  • Executive Functioning Disorder
  • psychological ramifications of, and treatments for, TS
  • self-advocacy, transition, and negotiating sociological systems
  • forming healthy social relationships.

Presenters include neurologists, psychologists, psychiatrists, social workers, and other relevant medical and education professionals with extensive knowledge about TS.

All activities and sessions will be related to the treatment and management of TS and associated disorders, including yoga, meditation, and movement therapies. Social activity and recreation are included.

CBIT Explained, Part 2: How does CBIT work?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

Studies published in peer reviewed journals have demonstrated the effectiveness of CBIT (part 1).

It’s thought to work by strengthening the neural pathways between the basal ganglia and the prefrontal cortex of the brain. The basal ganglia is the region of the brain where Tourette Syndrome is thought to originate by the spontaneous release of unwanted muscle actions, while the prefrontal cortex is the region of the brain where voluntary control over our actions occurs.

CBIT breaks the premonitory urge → tic → relief feedback cycle by implementing a Competing Response (CR), an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices.

(Please note that even though behavioral therapies like those involved in CBIT can help reduce the severity of tics, this does not mean that tics are just psychological or that anyone with tics should be able to control them—tics due to TS are very much neurologically based and involuntary. CBIT is not  “Stop It” therapy, but rather “Do Something Else” therapy.)

In time, usually after a few of months of applying the CR combined with the other comprehensive components of CBIT, most children develop the ability to manage their tics to their satisfaction.

Having learned the techniques taught in CBIT, the child is then able, usually on their own, to develop their own CRs for other bothersome tics, and continue using the relaxation strategies and the knowledge gained from understanding their tic triggers to more effectively manage their symptoms throughout their lives.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

A big day for Kane, plus a vote that could help an entire school!

Kane graduated from speech yesterday!! I am so proud of him for his accomplishments! He was able to bring his friend Ayden with him to celebrate!

On another note, if everyone could take a few seconds out of your day to please click on the link I have below and go vote for Murray Preschool, that would be amazing! Voting could result in the preschool winning books!! There is absolutely nothing to sign up for, just click on Stacey Feehan’s picture and click vote!! Thank you!!

http://review.wizehive.com/voting/view/janbrett2014/19314/2516655

CBIT Explained, Part 1: What is CBIT?

In this blog series, Steve Pally, administrator of the TSFC Forum (www.tourettesyndrome.ca), explains the basics of CBIT, or Comprehensive Behavioral Intervention for Tics.

CBIT (pronounced see-bit) is a non-pharmacological treatment for Tourette Syndrome.

It combines six strategic therapeutic components in the form of a clinically proven, comprehensive therapy to help a person with Tourette Syndrome manage their tics, including:

  • Psychoeducation: Examining what situations tend to make tics worse and what situations make tics better. A person can then use this knowledge to avoid the situations that exacerbate their tics or find ways to lessen their impact. They might also seek out situations that lessen tic activity.
  • Self-awareness training: Learning to recognize signs that a tic is about to occur. Tics are usually preceded by a premonitory urge which is the key to knowing when a tic is about to be expressed.
  • Relaxation training: Acquiring strategies for minimizing stress and managing tics. Examples include deep breathing, progressive muscle relaxation and guided imagery.
  • Tic Analysis: Identifying a person’s most bothersome tic (Note: not the tic that bothers someone else,but rather the tic that causes individual the most discomfort, distress or difficulty). A CBIT therapist helps the individual to recognize any premonitory urge or urges that precede that particular tic. They then break down the tic into its components (i.e., the precise muscle movements involved in the tic from start to finish).
  • Competing Response (CR)/Tic Blocker: Responding to the urge to perform a particular tic with an action that’s less conspicuous than the tic itself and can be performed without any external aids or devices. For example, if a person with TS has a tic that involves head rubbing, a new action might be for that person to place his or her hands on his or her knees, or to cross his or her arms so that the head rubbing cannot take place. Once a person identifies a CR for their bothersome tic, they perform the CR whenever they experience the urge to perform the bothersome tic, until the urge passes, usually in a minute or two.
  • Social support: Getting encouragement and assistance from family, friends and educators. Parents may have to advocate on their child’s behalf at school to alert teachers about a child’s needs. Positive reinforcement at home is also important for children. When a child employs the correct CR, they should be praised. If they happen to miss using the CR and the tic emerges, parents need to remind the child about using the CR, not in a punitive tone, but in a supportive and encouraging one.

CBIT does not cure Tourette Syndrome or eradicate tics; rather, it provides strategies to help manage tic symptoms and lessen their impact.

IMG_0038-avatar--wAbout the blogger: Steve Pally was diagnosed with TS as an adult in his mid-forties. He has volunteered with TSFC for nearly three decades and currently co-administers the TSFC information and support Forum at www.TouretteSyndrome.ca. His interest in CBIT was sparked when he realized many of the strategies taught in a ten-week period in CBIT today were familiar to him, but took him decades on his own to discover them, as have many other adults with TS. That’s why he is eager to acquaint as many people as he can with CBIT so they can take advantage of recent developments for tic management.

52 Weeks of TS: Week 32

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

This week I have been doing a lot of thinking; well, I guess my brain is always thinking, but this week I guess, I’ve been listening to my thoughts more. I’ve been trying to listen and understand why my body does the things it does. Even at 37 years old, my body still confuses me.

I’ve been doing the back and forth trips between New York City and Martha’s Vineyard. In the beginnings of my time in Martha’s Vineyard, I said my anxiety levels were at an all time low, but my tics had stayed the same. With all the back and forth trips, I have realized that my tics might have calmed down a bit in more relaxing situations.

There is always something going on in my head, whether it’s my OCD, my anxiety, tics or ADHD. It often feels like Grand Central in my head, so sometimes it’s hard to notice if something has calmed down, like my tics. Sometimes you just don’t realize when the tics are calm outside of a stressful situation, until you’re back in a stressful situation.

For the most part, people don’t realize I have TS, unless they are with me later in the day or early evening when my body is tired of suppressing. My TS affects me in many ways, but I would probably have to say the actual tics are on the bottom of the scale. Even though I tic throughout the whole day, they are usually very mild. It’s really all of the underlying disorders that affect me almost every moment of the day.

There is usually not a moment in the day that there is not some sort of OCD thought racing through my head, which then triggers the anxiety. I know I need to pay more attention to my triggers, and focus on what helps. I take my Klonopin, but I’m beginning to wonder, how much is it really helping? I know the one mg that I take at night helps quiet my mind and helps me sleep, but I’m not sure how much the .5mg that I take in the morning is really helping.

When I first started taking the .5mg in the morning it would make me so zombie like, so I started taking it with a coffee to somewhat level me out. I think it’s time to cut out the coffee part of it. Within 10 minutes of drinking the coffee, the caffeine is racing through my blood stream, causing more anxiety feeling. HELLO, why am I taking something for anxiety, but mixing it with something that brings out my anxiety? It’s time to cut the caffeine.

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