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Landmark Study Reveals Impacts of Neurological Conditions on Canadians

nhcc_logoNeurological Health Charities Canada or NHCC, of which the Tourette Syndrome Foundation of Canada is a founding member, has just released a very important study—the first of its kind—detailing the impact of neurological conditions, including TS, on the estimated 3.6 million Canadians directly affected by them.

Among the dramatic highlights of the study are revelations that Canadians affected by neurological conditions:

  • Are five times more likely to experience unemployment than the general population;
  • Use healthcare services more than those affected by other chronic conditions;
  • Make up over half of those in home care or long term care facilities; and
  • Are twice as likely to report symptoms of depression than those without such conditions.

As well, over a third of the 177,000 Canadians who participated in the study reported that their family had experienced a financial crisis in the last year. If they had caregivers, those caregivers were twice as likely to experience distress than those caring for individuals without a neurological condition. The study also projected a two-decade spike in cases of Alzheimer’s disease and related dementias and Parkinson’s disease, as well as traumatic brain injury.

Says the NHCC:

The study provides rich new information about neurological conditions in Canada. It also highlights remaining knowledge gaps and identifies areas, which, if addressed, could significantly reduce the negative impacts of neurological conditions on individuals, families, health care systems and society.

Says Dr. Tamara Pringsheim, who sits on our Professional Advisory Board and is responsible for the Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome,

The National Population Health Study of Neurological Conditions is unique in that it represents a collaboration between so many groups and individuals (e.g. patients, advocacy groups, health care leaders, researchers and other key stakeholders). The information generated from this important study has paved the way to help us improve neurological care and to guide future research needs in Canada and beyond.

We look forward to that future as we face the challenges of today in our Tourette community.

For more information and to read the study report, click here.

Deep Brain Stimulation, Part Three: Who’s a Good Fit for DBS?

The use of brain surgery to treat TS receives a lot of media attention; however, this coverage most often doesn’t go into detail about who is the right fit for it. There are a lot of factors to consider beyond simply whether or not a person’s tics are really severe.

You may read part one of this three-part blog series here and part two here.

DBS model

According to a recent article published in the Journal of Movement Disorders, there are nine or more important considerations made regarding the suitability of a candidate for Deep Brain Stimulation or DBS:

  1. Tics result in severe distress, self-injury, incapacitation, and/or disruption of quality of life.
  2. The patient is over age 25 (except in exceptional cases).
  3. Medication (usually at least three different types) has been tried and has failed.
  4. Patient hasn’t undergone treatment for any associated conditions or other medical condition(s) during the previous 6 months.
  5.  Botox injections have been considered, if possible.
  6. Any psychiatric disorders, including anxiety, depression and bipolar disorder, have been treated and stabilized.
  7. Patient has undergone screening for possible cognitive dysfunction and dementia.
  8. An expert, such as a psychiatrist or neurologist, diagnosed the TS.
  9. Patients were informed about the behavioral therapy treatment approach.

According to a several DBS experts, having a team of professionals from different fields who have experience with movement disorders is also critical. This team might include: a psychiatrist, neurologist, neurosurgeon, neuropsychologist, and in some cases, a social worker, occupational or physical therapist, and speech therapist. Experts recommend that this team meet to discuss the results of imaging (e.g. Magnetic Resonance Imaging). This model is similar to an approach used in cancer treatment (medical oncology boards).

Lastly, it’s important to remember that DBS is time-intensive. A commitment to give a lot of time—not just due to the procedure itself, but also because of the pre- and post- operative workups—is important to strengthen the chances for success. Consider that on average, a patient may need to return for device re-programming 4-8 times in the first six months! In short, DSB treatment is still far from being over once the person undergoes the actually surgery.

Overall, while DBS for TS is promising in certain cases, it is still a work in progress. Some patients who undergo the procedure may not benefit significantly. On the bright side, as research on DBS continues (countless DBS studies were published this year alone), medical professionals will come to better understand who with TS might benefit from DBS.

Source:

“Deep Brain Stimulation for TS” by Okun & Ward et al. Published in A Family’s Guide to Tourette Syndrome. Walkup, Mink & McNaught(eds.), Bloomington IN: iUniverse, 2012.

Deep Brain Stimulation, Part Two: New Data on Long-term Impact

The use of brain surgery to treat TS receives a lot of media attention. This three-part blog series will give you up-to-date information about this treatment approach. Stay tuned for part three, which will be published tomorrow. You may read part one here.

DBS model

Deep Brain Stimulation (DBS) is a surgical procedure that involves implanting an electrode in the brain, implanting a pulse generator in the upper chest, and running a cable under the skin to connect the two. Electric pulses from the generator pass through the cable to the electrode deep within the brain with the goal of neuro-modulating or moderating abnormal signals common to patients with treatment-resistant TS.

To date, there are almost 100 reported cases of people with treatment-resistant TS receiving DBS. Among the 100 cases, DBS targeted several different places in brain, with nine different locations stimulated in total.

A new study published this month documented 17 DBS cases over periods of one to four years, each targeting the same location in the brain (thalamic stimulation). Most of the patients experienced tic reduction post-DBS, which was on average about a 48.3% decrease in motor and 41.3% decrease in vocal tics.

An important finding from this particular study was that the reduction in tics tended to last over time. This was the longest study ever conducted on patients who had DBS for medically-intractable TS. The authors checked in with the patients one month, three months and then between 8-46 months later, depending on the patient. The average final check-in was at the two year or 24 month mark. The study concluded that the benefits of the procedure tend to last and be stable over several years up to four years’ time.

On balance, it is also important to note that eight of the 17 patients or 47% needed to keep taking medication even after their DBS surgery. Four patients had negative side effects including anxiety, infection, dizziness, poor balance and worsening of stuttering. Two patients asked to have the device removed.

If you are interested in reading this article, it’s available online here.

Source:

Sachdev PS, Mohan A, Cannon E, Crawford JD, Silberstein P, et al. (2014) Deep Brain Stimulation of the Antero-Medial Globus Pallidus Interna for Tourette Syndrome. PLoS ONE 9(8): e104926. doi:10.1371/journal.pone.0104926

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

The use of brain surgery to treat TS receives a lot of media attention. This three-part blog series will give you up-to-date information about this treatment approach. Part one will explain how the surgery works and how it might negatively affect someone with TS. Stay tuned for parts two and three, which will be published on Tuesday and Wednesday.

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 behaviour 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). 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?

Again, the answer is complicated. DBS received a lot of positive media hype with some headlines hailing it as a life-changing treatment or even a cure for TS. There have been some positive outcomes in some cases. Within the medical community however, the reaction is mixed.

DBS is controversial partly because it’s so new (not a lot of studies or cases exist) and partly due to questions about side effects and effectiveness. The Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome rates DBS as “Insufficient evidence to make a formal recommendation” for adults and “Not recommended” for children (see page 76 of the Guidelines for more information). These ratings reflect the lack of documented cases and studies on DBS as well as concerns that DBS benefits might actually come from natural waning of tics or the placebo effect rather than the device. Adverse effects like restricted daily activity due to energy loss, skin infection, nausea, vertigo and anxiety are also concerns.

As well, the surgery comes with risks. Current research estimates that infection due to DSB occurs in more than 5% of cases. The device has no blood supply. It or the electrodes can potentially damage a blood vessel, which can lead to bleeding or a stroke. DSB often affects one’s ability to get words out and it can worsen mood or cognition. In rare cases, suicidal thoughts result. Finally, depending on the way the procedure is performed, there may be an increased risk of problems with walking, talking and thinking.

For more information on DBS, stay tuned for parts two and three of this blog series.

Sources:

The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome (2012)

A Family Guide to Tourette Syndrome (2012)

Parkinson’s Disease: Guide to Deep Brain Stimulation Therapy (2014)

 

Why Tourette and Not Tourette’s?

You’ve probably noticed that there are almost as many names for Tourette Syndrome as there are tics (well, maybe not quite that many). These include:

  • Tourette Syndrome
  • Tourette’s Syndrome
  • Tourette’s disorder
  • Gilles de la Tourette Syndrome
  • Tourette
  • Tourette’s
  • TS
  • GTS

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If you’re grammatically inclined, you may have wondered why some use the possessive form (Tourette’s), while others do not (Tourette), and whether it matters at all.

The truth is, what really matters is that our message reaches as many Canadians as possible: what TS is and what it isn’t. So long as these conversations are happening, that’s great. It’s what’s most important.

That said, we at the Tourette Syndrome Foundation of Canada always use Tourette, never Tourette’s. It’s our policy (we also never use terms like afflicted, victim, suffering, disease or Tourette child, but those are subjects for another blog post).

Many members of the medical community want to end the use of possessive markers (the ’s in Tourette’s) for the names of disorders, diseases and conditions entirely. Their view is that it’s cumbersome and inconsistent, especially when different terms appear in medical publications, and we agree.

The main issue with using Tourette’s is that Gilles de la Tourette, after whom the disorder named, didn’t even have Tourette Syndrome (unlike, for example, in the case of Lou Gehrig’s disease). Dr. Tourette was the first physician to report it. In this way, the possessive marker is inaccurate and misleading.

So we’re left with Tourette.

We recognize that many members of our community, as well as the public, are used to saying Tourette’s and will probably go on doing so for quite awhile. Again, that’s okay. We’ll all continue to make progress no matter what we call it.

The TSFC has chosen to reflect the current medical direction in our work as we strive to educate Canada about TS to the best of our ability. We hope you’ll join us in the years to come!

Our Favourite ‘Tourettic’ TED Talks

Jessica_ThomTED is a nonprofit devoted to sharing “ideas worth spreading” on a variety of topics through short, inspiring, live talks.

The TEDx Program shares TED’s mission and format, but TEDx Talks are organized independently by local communities.

In the spirit of sharing ideas worth spreading and raising awareness about TS, here is a list of recent TEDx Talks on TS and some of the conditions that make up the “plus” in TS+.

 

  • Overcoming Tourette’s Syndrome: Marc Elliot at TEDx Nightingale Bamford School

 

 

  • Tourette Does the Talking: Thomas White at TEDxUND

 

 

  • Tourette’s syndrome—the alchemy of chaos: Jess Thom at TEDx Albertopolis

 

 

  • Living with ADHD in the Age of Information & Social Media: Theo Siggelakis at TEDx QuinnipiacU

 

 

  • Nurturing OCD: Alex Meyers at TEDxCape

 

 

  • Anxiety Disorders & Panic Attacks: Alison Sommer at TEDx Carleton College

Help Us Make Workplaces TS-Friendly

peopleMany people tell the Tourette Syndrome Foundation of Canada (TSFC) that they are concerned about workplace discrimination. We are too!

The TSFC is committed to advocating for appropriate, improved and respectful treatment of people with TS in the workplace.

The first step in improving workplace conditions and reducing workplace discrimination is gathering information. We need to learn about what is happening in workplaces right now and what has happened in workplaces in the past.

To do this, the TSFC has joined forces with York University to create an anonymous, short, easy-to-use e-survey about what is like to have TS and work. This is where you come in.

We need your help in getting this survey filled out by as many people as possible.

Every time someone fills out the online survey, the TSFC’s ability to advocate for positive change grows stronger.

Help make sure that the rights of people with TS in the workplace are protected! It only takes a few minutes of your time!

If you are 18 years or old, have TS and are either working or have worked in the past, please click here: https://www.surveymonkey.com/s/tourettesurvey

If you know someone with TS who is 18+ and has work experience, please share the link with them.

Together we can create an empowered community in an inclusive Canada.

Tourette Legacy Files, Part 1: Terry Ferguson

In this new blog series, we honour the men and women who helped the Tourette Syndrome Foundation of Canada rise from its humble roots and explore the events that shaped its history.

Terry was there from the beginning.

According to an early issue of The Green Leaflet (lovingly published in a Toronto basement using a hand roller press and carbon paper in March 1979), Terry was “one of the earliest to be diagnosed as having Tourette’s Syndrome in Canada.”

Mr. Ferguson was very open about his TS, and had up-to-date knowledge about neurological disorders other than his own. A passionate volunteer for the TS cause, Terry sat on the TSFC Board of Directors as well as “serving on the executive of the Gravenhurst Kinsmen Club,” an Ontario community in which he owned and operated The Muskokan Motel.

Terry was a very kind man, his presence being “a terrific morale booster for many of our members.” He loved photography and electronics. “An avid correspondent,” Mr. Ferguson was always “willing to exchange letters with any member.”

daddy & us

But Terry’s story and his legacy do not end there. The Green Leaflet reads: “Terry is a family man and is very proud of [his wife] Judy who stood by and dotes on his children, son Kenny and daughter, Heather, one year.” When Terry passed away, his family, including Heather and Kenny, now grown up, decided to honour his memory along with Terry’s friends by participating in the Trek for Tourette held in Bracebridge, Ontario.

Each March, this large group treks five kilometres through the crisp Muskoka air to raise funds for the TS cause that Terry so strongly believed in. Some bear the curious writing “VE3 TKF.” If you ask them, they’ll tell you it’s a reference to Terry’s call sign as a ham radio operator, his beloved pastime.

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Trek For Tourettes Mar21 2010

Says his daughter Heather, now a proud parent herself:

Growing up with a father who had TS was ‘normal’ to me. I didn’t fully understand it at young age, however growing up I became aware of his physical tics and verbal slurs. When he became excited or anxious about a social gathering or event, his tics would increase. As I matured and understood TS more, I became proud of my dad. He plunged forward in life from a difficult childhood growing up with TS to falling in love, getting married, running his own business (with my Mom for 25 years) and raising my brother Ken and I. My dad was a father in a home full of unconditional love, support, humour and happiness.

We salute Terry Ferguson for his contributions to the TS movement and for being such an incredible role model for so many. May his spirit of volunteerism be an inspiration for other volunteers, current and future.

radio pic

Guest Blogger Brittany Fichter: My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

Brittany FichterI don’t watch Dancing with the Stars often, but when I heard that tonight was Disney night, I couldn’t resist. And I was not disappointed.

I grew up dancing. It was always one of the biggest parts of my life, but I didn’t realize how much it did to improve my Tourette Syndrome, OCD tendencies and anxiety until I graduated from high school and my tics began to get worse. I’ve given it quite a lot of thought, trying to put into words what my body and soul feel when I’m dancing, attempting to make sense of why dance so helps calm my mind and loosen my tics that cling so tightly to me.

This is what I’ve come up with.

How Dancing Improves My Tourette
If you’re not familiar with Tourette, having it makes you feel like you’ve got a million little bursts of energy all over your body. These bursts of energy make you feel like you need to constantly move, your tics (involuntary vocal sounds or physical movements), itching to escape. Suppression is possible, briefly, but what you’re left with is a body with a ton of energy that has nowhere else to go.

Unless you dance.

For years, my dance studio attended competitions. Dance competitions, if you’ve never attended one, are chock full of detail. Scores are about much more than simply remembering the dance. Here are a few of the places that judges look to add or take points:

  • Strongly pointed or flexed toes
  • Good posture
  • Every part of the body full of energy
  • Smiles (throughout the entire dance)
  • Perfectly matched costumes
  • Perfectly timed leaps and steps.

I won’t go into gory detail, but in short, every look, every angle, every muscle must be in place to get full points. The dancer’s countenance must be full of energy and enjoyment, or whatever expression is appropriate for the mood of the dance.

Now, this might seem like torture for someone like me, who has obsessive-compulsive tendencies, someone whose stress shoots through the roof when I can’t hit every mark on my checklist. But in reality, it’s heaven. All those little bursts of energy that randomly pulse through my body, constantly distracting me and distracting others, suddenly have a purpose. All the energy that’s demanded for a perfect score in dance is already inside of me, only when I dance, it’s being used for good instead of evil.

Not only is my body relieved, but my mind as well. The problems that distract my mind in general can’t be attended to. The anxiety that almost constantly floats through my mind must be pushed to the side if I’m going to focus all my attention on dancing. Normally, the anxiety refuses to leave, but thanks to the perfectionism brought about by my OCD tendencies, my disorders work against each other. In order perform well, I can harness my OCD and use it for something I love.

Actually, I experienced something I’ve heard of in at least one other individual with tics, and I’m sure I’m not the only one. When I was little, dance steps became my tics. While this might sound aggravating at first, it’s really quite enjoyable. Most tics are intruders, movements that take control of your body, shaking you, making you squeak (or yell, bark, or say odd things), using you as a puppet.

But when I dance, I have control of my tics. My tics are constant, but their presence means constant practice. And practice makes perfect. A little girl dancing around a store is much more socially acceptable than a girl running around the store shrugging her shoulders and squeaking. And while I’m the last one to say tics are something to be embarassed of, dancing is a lot easier to explain than most other tics.

In a way, I can say my tics are partially responsible for making me a confident dancer. My OCD tendencies made me a student of the art. I thought about it constantly, ran the routines through my head before going to sleep, chewed over my mistakes after practices, and hyperfocused on it throughout the actual practices. Dancing helped me feel whole, complete. Instead of being split by the parts of my being trying to run in all different directions like they usually are, I could be simply in one place at one time.

Life-with-Tourettes-Dance-300x226

[Image from BrittanyFichterWrites.com]

Dance is a Fantastic Form of Exercise
I’ve previously discussed the benefits of exercise in reducing anxiety. Beyond even basic exercise, however, dance has a leg up on the competition (Pun intended. Ba-dum-paaah.) In the article, “Stress and Stress Reduction,” by Indiana University, Bloomington, it states:

A person who is completely involved in an activity, whether it be chess, rock climbing, the arts, dance, or anything else, often experiences certain subjective feelings called the “flow state.” The flow state is a feeling of unified flowing from one moment to the next in which the person is in control of his/her actions and in which there is little distinction between self and environment, past, present, and future, stimulus or response. While in the flow state, the person usually does not think of him/herself as being separate from what he/she is doing.

An article on Livestrong.com titled “Exercises for Anxiety Relief” notes that “exercises that are continuous and rhythmic tend to be especially beneficial for anxiety relief.”

Different Kinds of Dance
Fast-paced dances like clogging, tap dancing, Irish step dancing, hip hop or jazz might not be your thing, and that’s okay. There are lots of different kinds of dance that can help you focus and kick some of that anxiety to the curb.

Group classes given at gyms or community centres are often lots of fun. My mother loves a class at her gym called Barre Booty, a mix between ballet moves and other moves to strengthen and tone; I have a lot of fun, personally, with Zumba. Group classes are great because everyone’s focusing too much on her own workout to notice you. (If you still don’t feel comfortable, there are some great dance DVDs you can do at home, such as Dancing with the Stars. I have four of these DVDs, and they’re great workouts!)

There are all types of partner dances, such as in ballroom dancing (If you want more types of dance, here’s a great link to a list of ballroom dances.), which, if done with a special someone, can help lower stress even more through physical contact!

Whether you love to dance in a group or by yourself, dance can be a great way to work off anxiety, focus OCD tendencies, and give those ticcy bursts of energy somewhere to go.

Brittany Fichter is and Air Force wife, educator and writer. You can follow her on Twitter and subscribe to her blog on BrittanyFichterWrites.com. She is currently working on her memoir, “chronicling a year of life with Tourettes, OCD tendencies, anxiety, the Air Force, the grace of God, and all the shenanigans that come along the way.”

Guest Bloggers Austin and Tricia Dilworth: Science Fair Winner Covers TS

photo 3My name is Austin Dilworth and I am 9 years old. I was diagnosed with Tourette Syndrome in March 2012.

This year, I had an opportunity to participate in my school Science Fair. I chose to do my project on Tourette Syndrome. I received a gold honour at my elementary school and an invitation to attend the Divisional Science Fair on April 09, 2014. There, I received a silver honour for my study project!

I am very proud to say I have educated my friends, family, teachers and my community.

Austin and Tricia Dilworth

Says the TSFC Winnipeg Chapter: “Way to go Austin! Your table top display is so well done, I think our Chapter should borrow it for our next display opportunity.”

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