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Tourette’s Syndrome?

Hello! My name is Megan Phox

Here is a blog to learn more about Tourette’s Syndrome (specifically my experience). Tourette’s is a neurological condition where a person has involuntary physical or vocal “tics” or symptoms such as shouting, screaming, jerking of the head, blinking, etc. It has to do with imbalanced brain chemicals. This is a safe place where you can ask questions that you would be too nervous (although you shouldn’t be) to ask me in person. All frequently asked questions will be in “menu”above where it says “FAQ”.  You can also e-mail me at Meganitup@hotmail.com or add me on facebook (search Megan Phox) to ask me questions. Thank you everyone!

The menu above also has links to “Tics & Fitness” (where I talk about my exercise and nutrition journey) and “Tics & Art” (where I discuss about my artistic endeavors along with a business I’m running where I sell hand-made stickers and sell stationary!). Soon to come is “Tics & Speaking” where I share about my career as a motivational speaker! I’m not one yet, but definitely on the road to becoming a speaker. Just wait 😉

Posted in Uncategorized

Book Launch

Are you all ready for a one of a kind book about Tourette’s? In my book Fuck You, I Love You I talk about my love/hate relationship with Tourette’s. In this fun and lighthearted book about me living with Tourette’s, goes over the my entire lifespan of having Tourette’s discussing different topics such as relationships, friendships, schooling, career, traveling, and much more. Raising awareness about Tourette’s to the general audience while giving advice to those who experience Tourette’s. Will keep you posted on when it’s going to be published. I plan on finishing the book in May 7 and publishing it soon there after.

Keep your eyes peeled!

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I’m Done

As I lie here chained to my bed with restraints to prevent me from having self-harm tics, I thought about all the people who have ostracized me, underestimated me, discriminated against me, treated me as if I were some sub-human. I will never let it happen again. To the lady that said I should stay at home for the sake of all people, to the boy who said I’m just a weak link in society, to the disability resource center director of my college campus who made me take the class via webcam because the teacher was pregnant (what a pathetic excuse), to the teacher that locked me up when I was in elementary school, to numerous strangers who has called the cops on me, to my friends and relatives who say I should or shouldn’t have kids, you are the problem in society.

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Friends

I’ve had friends who have told their friends about me and my Tourette’s and they’ve said some nasty things. For example, “She’s the weakest link in society”, “wtf she shouldn’t have a dog” or “I would find her tics and make them worse” or saying how all their friends have to be ‘normal’ and they cant deal with people’s issues. That’s why it’s SO important to stand up for your friends and educate them. Don’t just sit there, smile and nod your head to fit in.

“We must take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Sometimes we must interfere. ” -Elile Wiesel

“Our lives begin to end the day we become silent about things that matter.” Dr.Martin Luther King Jr

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Meditation, Nutrition, & Exercise

Since December 4, 2016, to January 3rd, 2017, I had the honor of being trained, being taught how to meditate properly, and being taught how to eat healthily by a personal trainer named, Peter A. Lucas through Full Spectrum Performance. I am grateful that he taught me the things he did. It literally helped my Tourette’s Syndrome on so many levels. With consistent practice and implementation, meditation nutrition, and exercise literally reduced my tics so much to the point where when I walked in public I didn’t feel like ticcing. It just didn’t cross my mind that often. I meditated while I walking through the busy Christmas crowds at the mall and felt so at peace spending time with my mother as she clearly noticed a change too. That was one of the most magical feelings I always want to recreate and is re-creatable. This was the first couple weeks of training, meditating and eating healthy so it helped when I was doing it consistently. Unfortunately, I’ve fallen off the wagon of meditation, nutrition, and exercise, after abruptly stopping sessions with Peter due to financial problems, but with my experience, all these three combinations, when done consistently, does help with all aspects of life. Although isn’t a cure for Tourette’s, it is a great way to cope and manage Tourette’s symptoms on a mental, emotional, spiritual and physical level

A client typically spends 12 weeks with Peter towards their transformative journey. Peter really looks out for the client’s best interest with his background in biology. knowledge from his personal training certification and furthermore his in-depth research and experiences to serve his clients, to help them challenge themselves, reach self-efficacy, learn self-reliance, accomplish self-sustainability, and to be overall healthy. Not only that, his personality is frikkin’ bomb. He is understanding, down-to-earth, chillax, and kind. Peter is a wonderful coach who approaches everything in a holistic way – the full spectrum. I have severe Tourette’s which includes spitting, saying derogatory slurs, cursing, throwing stuff (whether that be towards the wall or towards people) and jumping towards people which can all be startling to most. But none of that bugged Peter. Imagine that! That is how cool he is.

The greatest part about training with Full Spectrum Performance and Peter is that he doesn’t just throw some workouts and reps at you leaving you bewildered and overwhelmed, but he helps you become self-sufficient and self-reliant. I’ve learned to work out and meditate on my own when he’s not around to train me. He follows the Chinese proverb: “Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime” type approach.’ Are you ready for transformation? Are you ready to learn how to fish? Well, let’s get started.fpp

fsp

 

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A Cure for Wellness

My birthday was on June 29. But apparently, I was born again June 30th when visiting a hardcore Christian neighbor that day. This isn’t the first time and never will be the last. I let him pray for me because I know praying for someone is really kind and from the heart, but I also knew he was trying to convert me. Time and time again. Not just then. But he always has. He constantly speaks about Jesus. I’m there to listen. But the intent behind it just bugs me. Ever since he knew I had Tourette’s (which is the first time he met me) he does nothing but try to convert me. It’s sad really. To the eyes of the couple across the street from me, I have an illnesss, an ailment, a flaw that needs to be healed, that needs to be cured. . But you don’t see them trying to go heal the blind, or the deaf, or the amputated. Or maybe they do? I just think that’s silly. 

Why would they think Tourette’s is the same? Believe me I believe that my Tourette’s might get better over time, but through SCIENCE, hence the brain surgery. But a person with Tourette’s will always have Tourette’s no matter how improved their tics become.

Think about this for a moment, if I follow Jesus Christ JUST because I want to be healed is it really genuinely following him? Would I be following him wholeheartedly? Or is just for the possible results? If I follow a religion I’d rather do it because I WANT to and believe in him just because.

After praying for me he asked how I felt. I was the same. My normal twitchy self. 

The thing that boggles my mind is that I may move a lot and shout a lot, but I’m perfectly healthy. Are they curing my well being? Because I am perfectly fine. 

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Making Things Megan-Proof!

My husband and I came up with a brilliant idea! As you all may know (or not know) I break the LCD of my MacBook screen a lot because I throw my wireless mouse at the screen. Instead of constantly breaking the MacBook screen and paying 500 plus bucks to replace it I just use a cord that displays my MacBook screen on a regular computer monitor which is cheaper to break. But it’s still annoying when I break the regular computer monitor too! So I tried looking for privacy filter screen that could protect my screen although it’s meant for privacy. You know, those filter screens that don’t show what you’re working on if someone were to look at the side of your computer monitor? But those costs 50-100 bucks for just plastic covering a computer monitor! So my husband and I decided to head to a hardware store and make a custom made the acrylic sheet for my computer monitors! Brilliant! We measured the monitors and asked them to cut a sheet based on that measurement. And I just use tape or Velcro to place the acrylic sheet onto the computer monitor! It only costs us 17 bucks! Yay for solutions!

Also, many of you may know that as a tic I toss my phone against the wall. And for a while, to prevent that, I would place a blanket or comforter over my head while playing on my phone or doing work. The downside? I couldn’t breathe!
So my husband bought me a privacy pop up tent for the queen-sized bed. It’s basically a tent for the bed and I could zip it up. If I threw my phone against the wall it would only hit the tent. The only thing now is that I have to dodge the flying phone when it bounces back!
Take that technology!

Posted in Marriage

Acceptance 

 I remember dating this one guy whom I really liked and can see myself being with for a long time, but before he broke up with me he asked, “why haven’t you considered brain surgery?” for my Tourettes and thats when I knew. He just wished I was normal. He liked me and my personality but the Tourettes bugged him. A lot. The question hurt me because no one should ever suggest that I get brain surgery when they know nothing about it – the risks, the complications, the emotional side of it all. Only my neurologist can do that. And only I, myself can make that decision or even have the nerve to bring it up.But thinking about on it it makes me appreciate my husband , Clifford Harmon even more. He’s never wanted me to change. He’s never wanted me to fit into society. He’s never wanted me to change for him. And when I did bring up the brain surgery it was me, myself who did it. And he supported me by watching videos of other people with tourettes who has done brain surgery and we both cried in each others arms watching the video. He’s helped me do the research, take me to my doctor appointments, used his money to fly me out to New York to see a neurosurgeon, promised he’d be with me if I turn into a vegetable which won’t happen by the way, and stayed by my side. Thank you Clifford Harmon for enjoying my madness and not forcing me to be normal. Your the panda to my grizzly

Posted in Medical

More About Deep Brain Stimulation

main-dbsbrainThe idea of the surgery I had is to reroute my circuit. I find brain plasticity fascinating and how DBS surgery can potentially rewire the brain! Think of it this way, having Tourettes is like being on a freeway that goes in circles. Lets call it the Tourette’s circuit. You keep going round and round and round, ticcing, ticcing, ticcing. But DBS allows you to find a potential detour. That detour can potentially lead you to creating a new circuit so you can off the Tourette’s circuit. So it takes a while to see results when it comes to brain surgery. It doesnt happen over night. It happens over the course of a year or so sometimes.

Posted in Academic

Discrimination in School

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Remember, don’t ever compromise your rights and be persistent when fighting for your rights. The world is not going to hand you your rights on a silver plate (unfortunately), you often need to educate yourself and stand up for yourself.

I have a friend who is surprised by how many times per year I get discriminated on campus because of my severe Tourette’s. It happens! There literally hasn’t been a year where I haven’t been discriminated against. I can understand why severe Tourette’s is hard to wrap your brain around especially when meeting someone new that has Tourette’s. A small percentage of people with Tourette’s has severe Tourette’s so that’d make even more sense for people to not understand. But really people? I’ve been on this campus for years and people need to have more compassion, especially professors and people in leadership positions. Just a reminder Tourette’s is a neurological condition where a person has involuntary physical or vocal “tics” or symptoms such as shouting, screaming, jerking of the head, blinking, etc. It has to do with imbalanced brain chemicals.

I’m not wanting to bash my favorite college. The reason why it’s my favorite is because despite the few people who aren’t as understanding, most professors and students are AMAZING. The community there is close-knitted and most are super kind and nice. It just becomes exhausting and disheartening to fight every year to reserve my right as student.

The first year I was there in 2009, I took a choir class in the winter. Everything was great and dandy until the choir concert date came close. Choir concert is an event where the choir class sings in front of an audience at a theater after a couple months of practicing singing in class. As time gets closer my Tourette’s becomes worse because I get nervous and anxious knowing id be standing in front of an audience. So, a several weeks before the choir concert, my professor came up to me after class asking me if I could not sing with the class because my Tourette’s seems to have worsened. I was heart-broken. At first I agreed because honestly, I didn’t know how to stand up for myself the first year of college. I didn’t know about Americans Disabilities Act of 1990 until high school! I didn’t know my rights as a citizen here despite my disability.

I came home to my family and friends sharing the disheartening story. They told me to talk to her about it because kicking me out of the concert choir is not right. I agreed. I then emailed and talk to the choir professor and she negotiated saying she’d willing to let me stay there for half of the time. I had to talk to my disability center on campus too, but they wanted me to compromise also. My strong-willed sister told me that compromising my rights is a no-no. So eventually I told the professor I wanted to sing for the whole thing with my classmates. She was so angry at me. Long story short, I sang with my concert in the end with very few tics! I wasn’t sure why. I wished that my choir professor was more supportive though. Afterwards, I sent her a Christmas card to see if we can fix the relationship but she wanted nothing to do with me.

Another instance was when I was taking ballet in 2010, but the dance teacher wanted me out. Eventually I just took Jazz dance because students in the ballet class seemed so tense and stuck up. I didn’t like the atmosphere. With jazz dance, I took the same teacher as ballet because she was the only one who taught all the dance classes. She would constantly ask me why my tics are so bad and tell me to keep it under control. The thing about Tourette’s that you should know is that when you tell a person with Tourette’s to stop ticcing or to keep it quiet, they feel the need to tic more no matter how much they suppress it. Suppressing the tics  makes things worse. It’s like if you have the hives and you try not to itch the scratch, you just want to do it more right? The mind of person with Tourettes is interesting. The more you tell them not to do something, the more they’d have to. So, her telling me that didn’t help at all, it backfired. I felt so uncomfortable and stressed in the class all the time. The students were understanding but they had no clue how cruel the dance professor was. She’d pull me aside after class sometimes and always try to talk me out of having tics. That’s impossible! Its equivalent to telling a blind person to stop being blind. I still feel angry thinking about this today because I felt like I allowed her to step all over me and I didn’t stand up for myself enough.

There was another time where I took this Model United Nations class and the professor chose me and four other students to attend a conference in Galapagos Islands. I wrote an essay about why I should be chosen and got picked! But administers at the college campus was afraid of liability and didn’t want me to travel with my professor and classmates. I fought hard for two months to take this trip with my classmates. That’s basically almost an entire quarter! I failed my economics class because of the hardship. I couldn’t focus in my classes because almost every day I spent time emailing, calling, and meeting with the administrators and leaders of the campus to fight for my right to participate.  Eventually, they let me travel to Galapagos. I just had to be persistent. I had a lot of support networks too that helped me through this process. I just wished I applied for a hardship grade during that time instead of letting myself receive a D.

There was a weird situation when I was taking a math class where I agreed to do it via webcam in the library because the professor was pregnant and didn’t want me to scare her to the point of miscarriage, which is pathetic to me when I think about it now (because I’ve been pregnant before and the doctor specifically said my hitting and rough violent tics will not harm the baby throughout the pregnancy soooo why would my sounds cause miscarriage at all?). Honestly, I was naïve during that time and was super considerate to the professor but I believe she just wanted an easy out so she doesn’t have to deal with my tics. It’s not like I’m going to stab her pregnant stomach with a pencil as a tic. They’re just SOUNDS.

Honestly, thinking about it now, some of the people who worked in leadership positions on campus never looked out for my best interest. They looked out for the political interest of everyone. It’s quite sad because you think that’s the whole point of being in a leadership position… to lead and to love.

I’ve learned a lot through these experiences. I don’t want anyone with Tourette’s or any disability to go through what I had to go through, and if they did, they’d knew how to handle the situation. I can’t prevent anyone from being discriminated against but I can offer tools, techniques and knowledge. I hope this post was helpful for anyone who Is a student with Tourette’s or other conditions. Remember, don’t ever compromise your rights and be persistent when fighting for your rights. The world is not going to hand you your rights on a silver plate (unfortunately), you often need to educate yourself and stand up for yourself.