Pioneering the first Tim Howard NJCTS Leadership Academy

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Words cannot express how grateful I am to Tim Howard, Melissa Fowler and everyone at the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for my daughter Hallie being given the opportunity to participate in the Tim Howard NJCTS Leadership Academy on August 1-3 at Rutgers University.

To be included in the first incarnation of this academy was so gratifying, meaningful and life-changing. I view Hallie as a pioneer at times — as she navigates her journey with TS — so it is truly fitting that she was able to join with other pioneers to excavate a path for others who share similar challenges in their lives.

Despite the fact that Hallie has spent very little time away from our family, I had no worries about dropping her off at Rutgers to begin that special weekend. In fact, as I got in the car, I felt an overwhelming sense of comfort, and I welled up with tears of pride that I felt for Hallie — a sense of pride that I don’t think I had ever felt before. I can feel it now again, as I am writing this. I suppose it comes from witnessing my child grow and evolve in ways that many adults have not yet achieved, and may never achieve in this lifetime.

I can still remember the first time I noticed Hallie’s TS symptoms (although friends noticed it even sooner, and in hindsight, I had already seen many associated symptoms). We were at the NJ Renaissance Fair, and she was 6 years old — just about to enter first grade. As Hallie was enjoying observing the Renaissance Fair actors delight in a game of human-sized chess, I was busy observing her intense blinking, and her tongue protruding out of her mouth as she opened her mouth every 20 seconds or so.

I was not the only one to notice. There were others watching her — and to me, it felt like everyone there was watching her. Although this was certainly not the case. In that very moment, I felt like pitying her, and admittedly, myself. How horrible is that? I actually felt bad for myself. I just wanted to take it all away from her, because I sensed in that moment that this was not a phase and may be something she was going to have for a very long time, if not her whole life. I thought that people would be staring at her for the rest of her life and may never see her for who she truly is.

It is now 8 years later, and many, many motor and vocal tics have come and gone, and many other associated symptoms that have been even more debilitating have waxed and waned. I also have another daughter who has experienced much the same as Hallie — yet even much worse in terms of intensity. It has been quite the roller-coaster ride.

Throughout all of these challenges, I have experienced my own growth and evolution. I have moved through the pity and self-pity. I have moved through the guilt and shame — and blame — that came later. I can save that for a future post! :) For now, I will simply express that by seeing Hallie transform her adversity into a blessing, she has blessed me, and shown me how to do the same in my life.

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Deep Brain Stimulation, Part 1: How Does It Work?

The use of brain surgery to treat Tourette Syndrome receives a lot of media attention. This three-part blog series from the Tourette Syndrome Foundation of Canada (TSFC) will give you up-to-date information about this treatment approach. Part 1 explains how the surgery works and how it might negatively affect someone with TS. Stay tuned for parts 2 and 3, which will be published on Wednesday and Friday.

DBS modelA common question about Tourette Syndrome is about how it’s treated medically. At present, there is no one-size-fits-all answer. How much medical attention or treatment a person receives for tics depends on how the tics impact them—whether they are physically painful and/or make it difficult to function. For fairly minor tics, education and support are often enough. More severe tics can be treated with one or more prescription medications and/or behavior therapy.

For a small number of people with TS, prescription medications have little effect. Their tics are extremely severe and both significantly and negatively impact their quality of life. On top of that, their tics are resistant to medications.

For these individuals, a relatively new surgical approach, called Deep Brain Stimulation or DBS, could be a potential treatment. DBS refers to the direct delivery of an electric pulse to the brain to help moderate abnormal signals associated with TS. The electric pulse comes from an electrode that is implanted directly into the brain and connected to a pulse generator via a cable or lead (pictured above).

The lead and generator are also surgically implanted within the body, with the lead running down the neck and skull, and over the collarbone and pulse generator sitting in the upper chest. Similar to a pacemaker, the generator has a battery and computer that send electric pluses directly to brain via the lead. The device settings—the size, voltage and frequency of the electric pulse—are all adjustable.

The key question is, does DBS have the desired effect of decreasing or eliminating tics?

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10 Common Tourette’s Questions & Answers, Part 10

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 10th and final in a series of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to all of the other parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8
Part 9

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Are There Ways to Lessen Tics?

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Should I have a child?

Hello. First time on this site. How is everybody? I hope we can create a better environment for Tourette Syndrome patients so they have a better life.

I have an issue that I could use some help with: My nephew has Tourette, and I wanted to know the ideas on how much is the chance my child would have this syndrome?

Any help or insight you could provide would be much appreciated. Thank you!

10 Common Tourette’s Questions & Answers, Part 9

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the 9th of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed them, here are links to the first 8 parts:

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6
Part 7
Part 8

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Can People with Tourettes have More than One Disorder?

Along with my Tourettes, I have OCD tendencies and generalized anxiety. Sometimes, it’s hard to tell where one disorder stops and the next one starts because they share so many symptoms. Tourettes is often comorbid with other disorders. That means that this disorder is often present with at least one other disorder, or parts of it at least. The Psychiatric Times article, “Tourette Syndrome,” reports that individuals with Tourettes often have ADHD or OCD. (And many people have parts of all of both!)

For more information, see: Comorbidity in Neurological Disorders

TourettesComorbidity