Our Journey

Recently an old friend from college reached out to me after seeing my first NJCTS blog post. We hadn’t spoken in well over 10 years and we were both surprised by this new common bond we had. Her oldest daughter was just diagnosed with Tourette syndrome at age 7. My friend was looking for some support, still processing her daughter’s diagnosis and still reeling from the shock. She wanted to know about our experience having two children with TS.  How old were my kids when they were diagnosed? What were their initial symptoms? How are they doing now? Are they on medication? Which ones? Are they in therapy? How’s it going? How about school? Do they have special accommodations? We immediately knew that a 20 mins phone call wasn’t going to cut it! We need more time and we are in the process of creating that. This experience gave me the idea to write a new blog post. Perhaps other parents of the newly diagnosed had similar questions.

I vividly remember the sinking feeling in my stomach during the early days of Maddie’s diagnosis. I vacillated between worrying about her future, sadness watching her tic (ironically she wasn’t bothered by most of them) and heartbreak that my “normal healthy child” was no longer either of these things. What got me through was the support of other parents. Hearing how well other kids were doing years after diagnosis gave me comfort, relief and strength. So here I am to tell you that both of my children are doing incredibly well. They are thriving in school, very social with lots of friends and active in sports and other community activities.

As a recovering “doer,” after Maddie was diagnosed, I jumped into massive action. I searched high and low for ways to manage/reduce tics. I came across all kinds of recommendations and books. We started with dietary changes. Although a gluten and dairy free diet made no difference, cutting out food dyes and artificial colors did. Limiting chocolate intake and reducing sweets seemed to make an impact as well.
I noticed that after Maddie would recover from an illness, her tics would go into overdrive. I began to research different ways to build the immune system to protect her from getting sick so frequently. As a daycare kid from 4 months of age, Maddie was always fighting something. My friend who is a pharmacist supported me in getting Maddie on a great natural multivitamin, fish oil, a powerful probiotic (gut health is apparently linked to brain function), vitamin c and magnesium. The vitamin section at Whole Foods became a frequent stop for me. We also had Maddie’s tonsils removed. Maddie had 9 bouts of strep by age 6. She was actually diagnosed with PANDAS by one of the three neurologists we took her to. My husband and I noticed a big (and positive) difference in the frequency of her illnesses with these changes. That said, definitely consult your doctor before starting your child on a vitamin regimen. This certainly is not my area of expertise.

The next important area we focused on was school. We immediately got Maddie a tutor (to build her frustration tolerance) and a 504 plan. Some of her accommodations are:
• Provide instruction in a calm, structured setting
• Modify homework assignments as needed
• Energy breaks as needed
• Inform all staff members who have contact with Maddie including substitute teachers of her diagnosis to better understand Maddie’s needs
• Provide a private location (counseling office or nurse’s office) to let tics out and/or emotional release as needed
• Provide staff development on Tourette’s syndrome as to increase awareness and education
• Provide progress monitoring for academic and social/emotional needs reported to parents 2 times per month
• Utilized alternative space for testing taking (study carrel, small table)
• When appropriate provide study guides
• Provide student support to help dissipate tic urges (ie stress ball, chewing gum, hard candy to suck on, etc)
• Provide student support in organization of locker and binders 2x monthly
• Encourage asking for help if needed or if she does not know the answer to a question
• Consultation with guidance counselor 2x per month for September and October
• Modify assessments for spacing in order to make assessment for visually manageable (ie. Reduce the number of math problems on page, reduce the number of graphics, reduce the number of tasks per page, etc.)

Next, my husband and I spoke with Maddie’s neurologist about medication. He recommended that we think about how we would know it was time (if ever) to treat Maddie with medication. My husband and I decided that we would revisit medication if any of three areas of Maddie’s life became negatively impacted by her tics and/or co-morbid anxiety disorder and OCD like behavior. These three areas were: sleep, social and academic. I wrote a letter to the neurologist explaining our rationale. In truth this was more for me than for him. I wanted him to hold me accountable to what I said if/when the day came. Medicating my child was not easy and I was very frightened at the prospect. I needed someone to hold me to my word and not allow me to push treatment off out of fear.
Finally, came counseling for both Maddie and me. We were very blessed to find great therapists. Maddie worked with Dr. Lori Rockmore in Millburn, NJ. Dr. Rockmore taught us about Exposure Therapy. At age 6, this type of therapy worked wonders for Maddie. Her triggers were largely around clothing at that age – a jean skirt that laid funny on her waist, her socks needing to lay perfectly straight on her toes. Dr. Rockmore explained that the earlier we started with Exposure Therapy, the more effective it would be in the future. After success with Dr. Rockmore, when my husband and I start noticing new obsessive behaviors/fears, we began quickly implementing Exposure Therapy. We’ve been fortunate to catch the behaviors early and successfully intervene. Incredibly, through some networking, I was referred to a therapist for me that works with parents of children with TS, Gayle Forman, LCSW, ACSW, MSW. TS is one of Gayle’s areas of expertise and she met me with patience, compassion and strategies to get through flare-ups.

Our journey has been and continues to be unique to us. Our son’s experience of TS has been similar but certainly not the same as our daughters. My intention is to support other parents in their journey. As always, feel free to reach out to me at any time. My commitment is to support other parents through early diagnosis and challenges related to their child’s experience with TS.

Emily Golden, ACC
Coach & HR Consultant
Golden Resources, LLC
emily@golden-resources.com
www.golden-resources.com

Young Magician Wants to Make Tourette Syndrome Disappear For All

Ben Mars, aka “The Great Marsini” invites the public to stand up and step out on behalf of 20,000 NJ school-age kids with Tourette Syndrome at the 6th annual NJ Walks for TS at Mendham on Nov. 14th.

Drive through Teaneck and you might catch “The Great Marsini” at work. The entrepreneurial 10-year-old makes sure his lemonade or hot cocoa stand (depending on the season) stands above the rest.

“I do magic tricks,” said Ben Mars. “One time a man stopped by on his way to bringing his wife to the hospital just for a glass of lemonade.”

Now the fifth grader is trying to catch the public’s attention for a different cause. He’s a member of the Youth Committee for the sixth annual NJ Walks for TS at Mendham. The event is a 5K walk and family fun run to benefit the Education Outreach Program of the NJ Center for Tourette Syndrome and Associated Disorders, Inc. (NJCTS).

Tourette Syndrome (TS) is an inherited neurological disorder characterized by involuntary movements or sounds known as tics. TS affects as many as 1 in 100 people and is frequently accompanied by ADHD, obsessive-compulsive disorder, learning disabilities, and childhood mental health conditions.

Kids with TS often report feelings of isolation and having a visible disorder makes them targets for bullies.  Classroom learning is challenging for children coping with more than one disorder beyond TS. School can be extremely difficult for the 20,000 New Jersey kids living with TS. Ben was one of them.

“It was hard to find a school for me,” said Ben. “I kept thinking am I a problem?

He is happy at The Park Academy in River Vale and now wants to help others with TS feel understood. He invites the public to attend NJ Walks for TS at Mendham on November 14th to learn about TS and to extend friendship to the TS community.  Registration is available at www.njcts.org.

All proceeds go to outreach programs to teachers, students, doctors, and other healthcare professionals at schools and hospitals across the state.

Ben knows firsthand the empowerment that kids with TS feel once they are understood— especially through in-school presentations.

As for his greatest trick, Ben wants to make TS disappear by working actively for a cure. He’s on the right team as NJCTS is home to the world’s only TS Cell and DNA repository at Rutgers University. For right now, the scientists will handle the research while Ben uses his charm to bring attention to the cause.

On November 14th, Ben will walk with scores of other kids with TS for a day of awareness, acceptance, and advocacy—and he wants you to join them. Registration for NJ Walks for TS begins at 8 a.m. at Mendham Borough Park at the intersection of Mountain and Park Avenues. The day will feature a timed 5K and simultaneous walk, music by the Good Works Band and solo artist Dawson Coyle, food and family fun. For questions about the walk, or to learn more about TS, visit www.njcts.org or call 908-575-7350.

Register Today for South Jersey’s First NJ Walks for TS Event on Sept. 20

5k walk and family fun run in Medford Lakes will benefit NJ Center for Tourette Syndrome

NJ Walks for TS LOGO big

The NJ Center for Tourette Syndrome and Associated Disorders (NJCTS) is expanding its successful NJ Walks for TS program to include South Jersey. Registration is now open for individuals and teams to join NJ Walks for TS in Medford Lakes on September 20th.

NJ Walks events in North and Central Jersey draw hundreds of children and adults as a show of support to their loved ones living with TS—an inherited neurological disorder characterized by uncontrollable movements or sounds known as tics. People with TS frequently have associated mental health and learning disabilities including obsessive-compulsive disorder (OCD), depression, anxiety, and attention deficit hyperactivity disorder (ADHD).  As many as 1 in 100 people have symptoms of TS, yet the disorder is often misunderstood.

All funds raised by NJ Walks for TS will benefit the NJCTS Education Outreach Program which delivers professional trainings to educators and healthcare providers, anti-bullying and youth leadership training as well as college scholarships for high school students diagnosed with TS.

The annual 5K walk and family fun run has taken place in Mendham since 2010 and in Princeton/West Windsor since 2014. NJ Walks is designed by kids, for kids and is presented in Medford Lakes by the Heicklen family. Known as a day of  “advocacy and self empowerment” on behalf of the 20,000 school-aged children living with Tourette Syndrome in New Jersey, the September 20th walk is part of NJCTS’s commitment to serving families and professionals in the region.

“We are pleased to bring this exciting event to Burlington County,” said NJCTS Executive Director Faith W. Rice, “Over the past decade, our outreach to schools, hospitals, and community organizations in South Jersey is making a difference in the quality of life for the TS community and has the potential to help children who have yet to be diagnosed and improve services to the children and families living with TS.”

“Since its inception, NJ Walks for TS has drawn support from state and federal legislators, sponsors, and the hundreds who attend to make the day a celebration of what makes us unique,” said Rice. “The focus here is that what makes us different makes us stronger—everyone has fun when we stand up for advocacy, awareness, and empowerment.”

Registration is $22.50 per person until September 1, when the price increases to $25 per person. To register, or to make a donation, visit www.njcts.org.

Tim Howard Kicks-off Year Long Awareness and Fundraising Campaign at Team Up with Tim Howard

Hundreds of fans joined the NJ Center for Tourette Syndrome (NJCTS) and Rutgers Men’s Soccer in welcoming home world renowned goalkeeper and New Jersey native Tim Howard at the Team Up with Tim Howard event on June 4 at Rutgers University.

Tim Howard signs copies of his book, The Keeper, at Team Up with Tim Howard on June 4

Tim Howard signs copies of his book, The Keeper, at Team Up with Tim Howard on June 4

For many Team Up with Tim Howard was a chance to meet a world famous athlete. For others it was a chance to meet a hero, a Tourette Syndrome champion—proof that an individual with Tourette Syndrome can be and do anything. To others like Ethan Lederman, 14 years old from Howell, NJ, “It was the best day of my life.”

Tourette Syndrome (TS) is a neurological disorder characterized by involuntary sounds and movements known as tics. It is estimated that 1 in 100 children show symptoms of the disorder with more than 20,000 school-aged kids in New Jersey alone.

Team Up with Tim Howard  kicked-off a year-long awareness campaign benefiting the NJCTS Youth Development programs, including the NJCTS Tim Howard Leadership Academy. The Academy is a four-day intensive program in August for teenagers diagnosed with TS focusing on empowerment, self-leadership, advocacy skills and resilience.

NJCTS Youth Advocate Tess Kowalski opened the afternoon by singing the national anthem. State Senators Christopher “Kip” Bateman, James Beach, and Bob Smith represented the more than 26 towns across the state recognizing June 4th as Tourette Syndrome Awareness Day. Senator Bateman presented Esther Howard, Tim Howard’s mother, with Governor Chris Christie’s proclamation recognizing May 15 through June 15 as Tourette Syndrome Awareness Month. North Brunswick Township Councilman Ralph Andrews, on behalf of Mayor Francis “Mac” Womack, welcomed home North Brunswick native Tim Howard.

The fun-filled afternoon continued with Coach Dan Donigan and Rutgers Men’s Soccer leading a clinic for kids while DJ Yoshi and the Rutgers University Dance Team entertained the crowd. Danny Breslauer returned to Piscataway to serve as emcee for the day. Breslauer was a long-time play-by-play analyst for Rutgers sports including football, soccer, and women’s basketball. He led the audience and 320 soccer clinic participants in giving Tim Howard a welcome he’ll not soon forget.

More than 300 kids participated in a soccer clinic with Rutgers Men's Soccer at Team Up with Tim Howard on June 4

More than 300 kids participated in a soccer clinic with Rutgers Men’s Soccer at Team Up with Tim Howard on June 4

Tim Howard met and posed for photos with fans of all ages and signed hundreds of copies of his book, The Keeper: A Life of Saving Goals and Achieving Them before joining Danny Breslauer on the field. An integral partner of NJCTS since its founding, Howard spoke to Breslauer about soccer, his experience playing in the world cup, and living with Tourette Syndrome.

Howard was diagnosed with TS as a child and has since brought TS to the world stage, sharing his inspirational message of resilience in the face of Tourette Syndrome. “Being great is within our reach,” said Howard. “The time has come that we stop making excuses. It’s time to live and thrive with Tourette Syndrome. I knew I had TS and I knew it affected my everyday life, but I never thought for a second it would stop me. Anything is possible.”

NJCTS Executive Director Faith Rice recalled the moment she first met the budding soccer star. “We were just getting off the ground then,” Rice said. “He came to us about 13 years ago when he wanted to go public with the fact that he had Tourette Syndrome. He came in on the ground floor literally. He came and volunteered. He collated and organized papers. He signed posters to our original group of kids. It was just a handful then when we started out. And that handful has grown to a statewide and regional reach and some programs have a worldwide reach.”

Tim Howard has been very public about Tourette Syndrome but at Team Up with Tim Howard he upped his game, introducing an important new initiative called The GreaTS. “I am teaming with NJCTS to bring this platform to light and open the conversation about TS,” said Howard. “Together we are building awareness for TS and, most importantly, directly helping youth find their path to personal greatness. This is a movement that asks people to stand with The GreaTS to overcome some of the challenges of TS. I have had some wonderful and proud moments in my career. Launching The GreaTS is one of them.”

The GreaTS

The GreaTS

For more information about NJCTS, the NJCTS Tim Howard Leadership Academy, and The GreaTS, please visit www.njcts.org or call 908-575-7350. To invest in the endowment for the Leadership Academy, visit www.gofundme.com/TimHowardTSFund.

Team Up with Tim Howard was sponsored in part by

Verizon NJShares, RUCDR Infinite Biologics, The Warner Rice Family Fund, Asurion, The Zoffinger Family Fund, Atlantic Health, South Jersey Industries, PennEast Pipeline, The Spar Family, The Tischfield Family, The Omaggio Family, The Sherbondy Family, Fresh & Co., PixiCast, JAG Physical Therapy, Connor Strong, New Jersey Manufacturers Insurance, Somerset Development, Dr. Robert King, AMA Consulting, The Judy Taub Gold Foundation, Oxford Realty, The Mueller Family, Sterling Management Services, Philip and Tammy Murphy Family Foundation, and Flemington Car & Truck Company

“I’m gonna have more friends now” because of Youth Advocate presentation in New Jersey

Last week, my daughters Anna and Sarah gave a TS Youth Ambassador Presentation.  Like all of the ones they have given before, I sat in the audience and watched the faces of the kids as they learn about TS.  They have given well over 20 presentations, and each one has been a success.

The girls talk about TS, what it’s like to live with it and how important it is to treat people with respect. Then, they do a quick activity to let the kids have a chance to see how hard it is to do work when you have TS. (We love watching the teachers try and do this also!) At the end, there are always questions from the students. This is my favorite part because this is when I can watch the stereotypes get washed away.

The questions asked show that the kids are really interested and want to learn more about it. My children have not been bullied about their TS.  Mainly, I believe, because of the fact that they take the time to educate their peers about TS.

This presentation was given because there is a child in the school with TS who has been having a hard time.  The kids get to ask the girls questions about TS and not worry about hurting their feelings or seeming rude.  This opens up the dialogue for the kids in school.  All of the children are given a “TS Fact Sheet” to take home so that the parents can continue the discussion.

Anna and Sarah know that they are doing good things by speaking about this, but yesterday, they were able to see it with their own eyes.  After the presentation, the child for which it was given came up and met the girls.  After talking with them for a couple of minutes, he said, “I think I’m gonna have more friends now because of you”.  His mother sent me a picture of his daily journal:

4 things someone with Tourette wants you to know

EDITOR’S NOTE: This blog entry was originally posted by Brittany Hays to ThoughtCatalog.com.

I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.

To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.

One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):

1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.

2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.

3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.

4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?

You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.

Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.

Tourette Syndrome + OCD was exhausting & difficult

It was more than 23 years ago that I was diagnosed with Tourette Syndrome.

I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.

My parents had a lot on their plate, jobs, managing a household, raising 3 children (one with considerable special needs), when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.

Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably.

Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.

From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?

Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments.

As I’ve written before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.

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5 Ways NOT to Help a Friend with Anxiety Attacks, part 5: Freak out

5 Ways Not to Help a Friend with Anxiety Attacks

If ESPN broadcasted anxiety stats instead of sports scores, this would be the standing in my house:

Anxiety-1:Brittany-0

I’m hitting the point in this pregnancy (27 weeks) where sleep is greatly desired, but I’m waking up more than I’d like. Last night I only got five hours of sleep before simultaneous heartburn, hunger, and the siren call of the bathroom got to me. After breakfast, I laid back down and tried to take a nap. Instead of passing out, however, I realized my breath was coming faster and faster, and my heart rate began to climb. Ever aware of the fact that what happens to me affects my baby, I had my husband take my pulse. I clocked in at 124 heartbeats per minute.

It only took a moment for me to really figure out what was going on. An anxiety attack was calling, and I’d left the door wide open. After a cautionary trip to the hospital last week to check on Jelly Bean, I’d decided to relax a bit until everything returned to normal. And while it was a good decision (in my opinion), it also meant I didn’t get nearly as much exercise as usual. (And exercise is my Numero Uno natural anti-anxiety “medication.”) Of course, there was also the song I was going to sing in some dear friends’ wedding this afternoon, and the fact that we’re moving in about two weeks, and I’m nowhere near packed or ready.

In short, there were lots of reasons for the anxiety to creep in.

My husband had a decision to make when I told him the reason for my crazy heart rate. He had to choose his words and actions so that they helped me overcome my anxiety, rather than making them worse. And thankfully, he didn’t choose any of these.

Today is the finale of 5 straight Mondays in which we are going to discuss 5 ways NOT to help someone having an anxiety attack. If you can follow these 5 rules, you may just find yourself a new best friend. Here is rule No. 5:

Freak out

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5 Ways NOT to Help a Friend with Anxiety Attacks, part 4: Good advice

5 Ways Not to Help a Friend with Anxiety Attacks

If ESPN broadcasted anxiety stats instead of sports scores, this would be the standing in my house:

Anxiety-1:Brittany-0

I’m hitting the point in this pregnancy (27 weeks) where sleep is greatly desired, but I’m waking up more than I’d like. Last night I only got five hours of sleep before simultaneous heartburn, hunger, and the siren call of the bathroom got to me. After breakfast, I laid back down and tried to take a nap. Instead of passing out, however, I realized my breath was coming faster and faster, and my heart rate began to climb. Ever aware of the fact that what happens to me affects my baby, I had my husband take my pulse. I clocked in at 124 heartbeats per minute.

It only took a moment for me to really figure out what was going on. An anxiety attack was calling, and I’d left the door wide open. After a cautionary trip to the hospital last week to check on Jelly Bean, I’d decided to relax a bit until everything returned to normal. And while it was a good decision (in my opinion), it also meant I didn’t get nearly as much exercise as usual. (And exercise is my Numero Uno natural anti-anxiety “medication.”) Of course, there was also the song I was going to sing in some dear friends’ wedding this afternoon, and the fact that we’re moving in about two weeks, and I’m nowhere near packed or ready.

In short, there were lots of reasons for the anxiety to creep in.

My husband had a decision to make when I told him the reason for my crazy heart rate. He had to choose his words and actions so that they helped me overcome my anxiety, rather than making them worse. And thankfully, he didn’t choose any of these.

Today is the fourth of 5 straight Mondays in which we are going to discuss 5 ways NOT to help someone having an anxiety attack. If you can follow these 5 rules, you may just find yourself a new best friend. Here is rule No. 4:

Start throwing good advice at them

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