My tics have been a bit more intense today than they have been lately. I think it's because i'm so excited for my 3rd year as a counselor at camp twitch and shout! Cannot wait to see my camp family in a little over a month. My dad will be having open heart surgery about 2 weeks before I head to camp, which may be another reason my tics are acting up. Between my dads surgery and camp, I think this summer may prove to be a ticcy one, but no where close to last summer or the one before it. CBIT and medication has helped a lot and I know that without these interventios my tics would be much much worse with this extra stress and excitement. Today I am thankful for CBIT and my neurologist. I am thankful I am not screaming and hitting myself for a good majority of the days like last summer.
Every year I go to camp, I seem to gain at least a couple new vocal tics, at least temporarily. My motor tics tend to stay the same. I'm interested to see what this year at camp brings, and I am hoping it doesn't bring anything too crazy! Today an old camp tic showed up out of the blue, the tic where I say "no". I only did it a couple of times, but it's clear camp must be on my mind :)
Tuesday, May 19, 2015
Thursday, April 16, 2015
The Importance of Support for Individuals with Tourette's: An Incredible Professor
I know I haven't blogged in a while, but there has been a lot happening in my life and things have been pretty great. I want to update you all about something that has given me a lot of inspiration and hope about my future (and write this for myself to chronicle my college journey).
I signed up for a course I was very interested in at the beginning of the semester and was very nervous going into it. I was particularly nervous because the professor of the class is very prominent in the field I want to go into . I was nervous about how she would react to my tics and I was worried that my tics would influence what she thought I was capable of achieving (something my parents told me would happen when I was first diagnosed) . I KNOW that my tics don't effect my ability to be a student, to write, do research, or succeed and move forward with my goal of getting a PhD in a very research oriented area in ANY way. But that thought of "what if she doesn't understand"was in the back of my head. This class and my relationship with this professor has officially proved my parents so WRONG!
Every relationship I have had since my diagnosis, with a professor, a teacher, a mentor, a friend, or a boyfriend has shown me that my tics will not effect what other people think of me or what they think I am capable of achieving. This relationship/ mentorship however, has blown me away.
Putting things in perspective for my readers a little: my professor (who I will call Dr. Brown) is a is a full professor at a university that is ranked #14 in the country, is the principle investigator of a prominent research lab, has published coutless instrumental papers, and is as I have said a prominent and well known researcher in her field. In other words, she's awesome and anyone who is anyone in this field knows how she is.
In the beginning of the semester I went to meet with her to tell her about my Tourette's/ tics and how it would effect me in the classroom. I do this with all of my professors (especially for smaller classes) in which my tics might be more noticeable to those around me and to the professor. She reacted very well, like all of my other professors have. She was very relaxed about it and didn't seem concerned at all.
Even though I was nervous about her seeing my tics in class, I was able to be relaxed and just be myself. I loved how she taught the class and was so fascinated by the material. Every class period I had with her, I felt more and more confident that this is exactly the field I wanted to go into. Every lecture held my attention for the entire 2 1/2 to 3 hours in a way that sparked my interest beyond that of any other class I have taken. I started speaking up more in class and asking questions about the material. I wanted to know more and loved the discussions her material sparked in class. I also particularly enjoyed the writing assignments! Since this was a writing intensive class we had a paper abstract due almost every week and a midterm and final paper.
I stopped focusing on my tics in class, and more and more they weren't even a thought in my mind during class because I was so interested and focused on what I was learning and how it applied to my independent research I do at the medical school.
When it was time to write my midterm paper, I was excited. I picked one of my favorite topics, a topic related to sensory processing disorder, Proprioception! Although I actually knew very little about Proprioception going into the paper, I did a lot of research and learned so much out of the experience of writing the paper. I turned it in and then went on spring break.
When I came back from spring break, I was excited to get my paper back and to hear what Professor Brown thought of it. I value her option and insight so much and was very curious what she thought of my paper. Sure, enough when I got it back, I got an A! She had written on the paper, "excellent paper! great transitions as well as content!". Then she said to the class "I'm going to ask a few of you to stay after class because I would like to get some of the papers you referenced in your paper to use in some of my other classes". I figured she was not talking about me since my paper topic was very specific and probably would't directly relate to the content she was teaching in any of her other classes. However, at the end of class she asked another student in the class and me to stay after.
She asked the other student first if she could use one of her references, and then when the other student left the room, Professor Brown asked me if I would send her my whole paper. She told me that she would like to use my paper as an example of an excellent paper to show to students when she taught this class in the future. I of course was not expecting his! I saw that my paper got an A and had really enjoyed writing it, but I would have never imagined that it was so excellent that she would want to use it as an example. Of course I said yes, told her I was honored, and sent her the paper.
Later on I had scheduled an appointment to meet with her to get her advice about applying to PhD programs next year. During the meeting, time and time again I was blown away by how much she believed in me. She told me how impressed she was with my writing and that she thought my writing was at an even higher level than some of her graduate students (wow!!) and during the course of the meeting stressed that I should focus on research in graduate school instead of clinical work because she believes I have what it takes to succeed in the highly competitive research field and I have what it takes to publish and teach, allowing me to make a larger scale difference and one day take on a position like hers. This is essentially my dream. This is what I have dreamed of for years. There is nothing that I would want more than to make this kind of difference in the lives of children, to have my own lab, and to do research at that level. Professor Brown, someone who I admire and look up to so much, was sitting in front of me not only saying that it was possible for me to do this, but that she believed in me and believed I could not only achieve my dream but excel in it.
When I asked her if she would write me a letter of recommendation for graduate school, she said she would be glad to. I think her letter could make a huge difference. She then asked me if I planned to tell the people whose labs I will be applying to/ interviewing with about my TS. I told her I was unsure at this point. She then proceed to tell me that if any of the professors whose lab's I was applying to had questions about my TS, she would be happy to talk with them. I thought this was so incredibly sweet and amazing of her to offer. I felt taken care of, and so supported. I felt like I had someone rooting for me, someone in my court, someone witting to stand up for me if anyone questioned me or wondered how my TS might affect me in a lab / research setting. I told her because of how my tics have been on the more moderate/ mild side lately that this probably would't be necessary, but I can't even put into words how supported it made me feel.
Someone who I was so nervous to tell about my TS is now willing to stand up for me and to help others understand what TS is and how it effects me. For me, I cannot even tell you how much of a huge deal this is. Because of how my parents handled my TS, I have had very few adults in my life who have been able to stand up for me and make me feel so safe and understood. While this has made me my own best advocate, it's an incredible feeling to know I do not have to carry this weight all by myself and to know that if I need help advocating or am in a situation where I need a little extra support, I have someone willing to be there for me :)
I signed up for a course I was very interested in at the beginning of the semester and was very nervous going into it. I was particularly nervous because the professor of the class is very prominent in the field I want to go into . I was nervous about how she would react to my tics and I was worried that my tics would influence what she thought I was capable of achieving (something my parents told me would happen when I was first diagnosed) . I KNOW that my tics don't effect my ability to be a student, to write, do research, or succeed and move forward with my goal of getting a PhD in a very research oriented area in ANY way. But that thought of "what if she doesn't understand"was in the back of my head. This class and my relationship with this professor has officially proved my parents so WRONG!
Every relationship I have had since my diagnosis, with a professor, a teacher, a mentor, a friend, or a boyfriend has shown me that my tics will not effect what other people think of me or what they think I am capable of achieving. This relationship/ mentorship however, has blown me away.
Putting things in perspective for my readers a little: my professor (who I will call Dr. Brown) is a is a full professor at a university that is ranked #14 in the country, is the principle investigator of a prominent research lab, has published coutless instrumental papers, and is as I have said a prominent and well known researcher in her field. In other words, she's awesome and anyone who is anyone in this field knows how she is.
In the beginning of the semester I went to meet with her to tell her about my Tourette's/ tics and how it would effect me in the classroom. I do this with all of my professors (especially for smaller classes) in which my tics might be more noticeable to those around me and to the professor. She reacted very well, like all of my other professors have. She was very relaxed about it and didn't seem concerned at all.
Even though I was nervous about her seeing my tics in class, I was able to be relaxed and just be myself. I loved how she taught the class and was so fascinated by the material. Every class period I had with her, I felt more and more confident that this is exactly the field I wanted to go into. Every lecture held my attention for the entire 2 1/2 to 3 hours in a way that sparked my interest beyond that of any other class I have taken. I started speaking up more in class and asking questions about the material. I wanted to know more and loved the discussions her material sparked in class. I also particularly enjoyed the writing assignments! Since this was a writing intensive class we had a paper abstract due almost every week and a midterm and final paper.
I stopped focusing on my tics in class, and more and more they weren't even a thought in my mind during class because I was so interested and focused on what I was learning and how it applied to my independent research I do at the medical school.
When it was time to write my midterm paper, I was excited. I picked one of my favorite topics, a topic related to sensory processing disorder, Proprioception! Although I actually knew very little about Proprioception going into the paper, I did a lot of research and learned so much out of the experience of writing the paper. I turned it in and then went on spring break.
When I came back from spring break, I was excited to get my paper back and to hear what Professor Brown thought of it. I value her option and insight so much and was very curious what she thought of my paper. Sure, enough when I got it back, I got an A! She had written on the paper, "excellent paper! great transitions as well as content!". Then she said to the class "I'm going to ask a few of you to stay after class because I would like to get some of the papers you referenced in your paper to use in some of my other classes". I figured she was not talking about me since my paper topic was very specific and probably would't directly relate to the content she was teaching in any of her other classes. However, at the end of class she asked another student in the class and me to stay after.
She asked the other student first if she could use one of her references, and then when the other student left the room, Professor Brown asked me if I would send her my whole paper. She told me that she would like to use my paper as an example of an excellent paper to show to students when she taught this class in the future. I of course was not expecting his! I saw that my paper got an A and had really enjoyed writing it, but I would have never imagined that it was so excellent that she would want to use it as an example. Of course I said yes, told her I was honored, and sent her the paper.
Later on I had scheduled an appointment to meet with her to get her advice about applying to PhD programs next year. During the meeting, time and time again I was blown away by how much she believed in me. She told me how impressed she was with my writing and that she thought my writing was at an even higher level than some of her graduate students (wow!!) and during the course of the meeting stressed that I should focus on research in graduate school instead of clinical work because she believes I have what it takes to succeed in the highly competitive research field and I have what it takes to publish and teach, allowing me to make a larger scale difference and one day take on a position like hers. This is essentially my dream. This is what I have dreamed of for years. There is nothing that I would want more than to make this kind of difference in the lives of children, to have my own lab, and to do research at that level. Professor Brown, someone who I admire and look up to so much, was sitting in front of me not only saying that it was possible for me to do this, but that she believed in me and believed I could not only achieve my dream but excel in it.
When I asked her if she would write me a letter of recommendation for graduate school, she said she would be glad to. I think her letter could make a huge difference. She then asked me if I planned to tell the people whose labs I will be applying to/ interviewing with about my TS. I told her I was unsure at this point. She then proceed to tell me that if any of the professors whose lab's I was applying to had questions about my TS, she would be happy to talk with them. I thought this was so incredibly sweet and amazing of her to offer. I felt taken care of, and so supported. I felt like I had someone rooting for me, someone in my court, someone witting to stand up for me if anyone questioned me or wondered how my TS might affect me in a lab / research setting. I told her because of how my tics have been on the more moderate/ mild side lately that this probably would't be necessary, but I can't even put into words how supported it made me feel.
Someone who I was so nervous to tell about my TS is now willing to stand up for me and to help others understand what TS is and how it effects me. For me, I cannot even tell you how much of a huge deal this is. Because of how my parents handled my TS, I have had very few adults in my life who have been able to stand up for me and make me feel so safe and understood. While this has made me my own best advocate, it's an incredible feeling to know I do not have to carry this weight all by myself and to know that if I need help advocating or am in a situation where I need a little extra support, I have someone willing to be there for me :)
Tuesday, April 14, 2015
Eating Cycles
Does anyone on here have this experience or have a child who goes though phrases like this?
I experience a lack of interest in food/ eating during times of anxiety/stress. I go rapidly between having a normal/healthy appetite and enjoying food to having very little interest in eating/ food. Sometimes my lack of interest will last for a few days, a week, or a month. During these periods, I still get hungry, but only want to eat to relive the hunger and have no interest in having more than a few bites of food. I eat more than a few bites because I know I should, but usually can't eat more than half of whatever is on my plate.
I have no concerns or anxiety surrounding my weight, and I don't desire to loose weight. I'm at a healthy weight most of the time, but during the times i have little interest in food, I can lose between 5-10 pounds.
It's not that I don't get hungry, it's that I have little interest in eating and when I do eat I have little interest in eating more than a few bites.
I have found it seems to come in cycles. I will have a period of a week or two where I have little interest in food and then I will suddenly wake up and be very interested in food. Right now I have little interest in food. I would say this time it started a couple of days again but hit full force today.
Sunday, April 12, 2015
Thursday, April 9, 2015
Guest Blog: Anthony's Story
Hello, my name is Anthony. I am 16 and currently living with TS. I was diagnosed after 4th grade and have had some trouble dealing with people after my TS became more noticeable.I have A.D.H.D. aswell so it was a little harder for me to learn than the other kids. My 6th grade year i was given the nickname "twitch" and was teased.
Everyday about it but now as a sophmore in highschool, I am in my schools A.F.J.R.O.T.C. program and am apart of its drill team. I believe my story will inspire other people with t.s. to not only cope with living with their unique problem and to push their limits because for me i found something i love and am doing great with. So just because you are a little different doesnt mean anything. I have been yelled at by Marines and have not ticked once so I know I have took t.s. by the horns and somewhat took control. When I am at attention I dont tick I tell myself 'keep be calm, don't break' and after a little bit of practice with the mindset I succeeded. So I belive i am an example of a t.s. success story,well almost anyways. So be strong and use your unique problem to have fun with your life.
Saturday, February 21, 2015
CBIT for Tics (Part 2)
Okay, so I promised I would write more about my experience with CBIT. CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don't get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe. One thing that's helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn't. We've had to make a lot of adjustments to the original CBIT protocols because #1 paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT). So we have had to get rid of that part competently, and also re-arrange a lot of other things as well. With a lot of tweaking though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication i've been on and the best part is NO SIDE EFFECTS!
So, today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my Junior or Senior year of high school (about 3 years ago). What i'm going to do is i'm going to paste that list here and i'm going to cross out all the tics that I no longer have. Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let's see how many tic i've gotten rid of!
So, today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my Junior or Senior year of high school (about 3 years ago). What i'm going to do is i'm going to paste that list here and i'm going to cross out all the tics that I no longer have. Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let's see how many tic i've gotten rid of!
- Eye rolling to upper right corners
- Fast blinking
- Hard blinking/squinting
- Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
- Grimace with mouth combined with eye blink
- Pursing lips silently
Pursing lips to make a slight and quiet kissing soundLifting upper lipPouting lip- Slight raising of lips into fast smile
Sticking tongue out- Chomping teeth
Opening mouth really wide (looks like a silent scream)Twisting lips to the left or right side of face- Entire face squint (just-tasted-something-really-sour face)
- Slight neck bend to left or right side
- Neck turning which results in neck cracking
Violent head/neck jerking forward- Shaking head fast from side to side
Bending head backward- Shoulder shrugging, both at same time or one at a time
- Pulling shoulders inward toward sockets
- Cracking shoulders
- Jerking both arms fast outward in front of me
- Cracking elbows
- Stretching arms all the way straight in front of me slowly
Tilting head backward while taking in a sharp breath- Tightening muscles in neck
- Tightening muscles in arms
Arm contortions- Jerking both arms toward chest vertically pretty hard
Jerking right arm toward chest vertically pretty hardHitting chest pretty hard with right handHitting stomach very hard with right hand (sometimes so hard that I feel dizzy and start coughing and gagging as a result)Pushing hands against face really hardHitting inside of elbows with hands- Hitting things (chairs, laptops, desks, tables, anything in reach, etc.)
Hitting eyes/parts of face or head- Making fists with hands and clenching them
- Finger stretching and moving
- Bending hands at wrists fast
Extending middle fingerMaking guns out of my finger- Cracking knuckles
- Tightening all muscles in hands and fingers
- Tightening muscles in chest, throat and stomach so tight I am not able to breathe
Lurching neck forward- Tightening muscles in legs
Jerking legs outwardsStomping- Rolling ankles
- Standing up on tip toes
KickingDrumming on tablesKnee knocking- Separating toes
- Raising big toe
- Crossing over first two toes
Jerking entire upper body backwardFull-body jerking tics- Rolling neck
- Scratching entire body all over really fast
- Grabbing crotch area
Hitting back of neck and back with hands- Full-body muscle tightening, which causes me to slip down in my chair and hold the position
- Rubbing feet together in bed
Jerking body upward in bed and just jerking all over the place in bed (fish-out-of-water tic) …Oh gosh I haven’t even gotten to the vocal tics!!!Screeching soundForceful “Huh” or “Heh” soundBird-chirping sound- Whistling
- Loud sniffling
- Slurping sounds
Gasping- Taking in sharp breaths/breathing tics
- Clicking in back of throat
Loud high-pitched noisesHigh-pitched tea-kettle noiseHitting bottom of hands together forcefullyHitting feet together- Forceful coughing so hard that it makes the muscles in my back hurt and gagging as a result
- Clearing my throat
- Grunting noises
- Air swallowing
- Biting my lips
- Licking my lips
- Picking my lips
Sucking in the side of my lip to make a pucking sound- Hiccuping noises
- Squeaking noises
Wow! And if I add it up....drum roll please.....I have gotten rid of about about 36 tics!! Now that's not to say they'll never come back or start up again or become more active when I get stressed or am around others with TS, but in my normal everyday life I am living with 36 less tics! I'd say that's pretty darn good! The ones I am most happy i've gotten rid of are the ones that were painful such as hitting myself in the chest and stomach. I still have tics that get painful sometimes, but I have a lot less tics that cause me pain and they happen less frequently.
To be fair, I have added on some new tics since my Junior year of high school that are not on the original list such as nodding my head forwards, brilling (that's what I call at least, but it's when I make a sound like brrrr with my lips and also make a noise with my throat at the same time), a squeaking noise that I make when i'm also sniffing (my CBIT therapist and I call it the squeak-sniff), and some others, but all and all I am doing very well right now. I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.
I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It's still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that i'm more independent with doing my CBIT homework/ competing res ponces. I will continue to update on how it's going and if anything new happens with CBIT :)
To be fair, I have added on some new tics since my Junior year of high school that are not on the original list such as nodding my head forwards, brilling (that's what I call at least, but it's when I make a sound like brrrr with my lips and also make a noise with my throat at the same time), a squeaking noise that I make when i'm also sniffing (my CBIT therapist and I call it the squeak-sniff), and some others, but all and all I am doing very well right now. I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.
I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It's still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that i'm more independent with doing my CBIT homework/ competing res ponces. I will continue to update on how it's going and if anything new happens with CBIT :)
Saturday, February 14, 2015
Valentines day! :)
Happy Valentines day everyone! What are you doing to celebrate? I'll be spending valentines day with my amazing boy friend who accepts me, tics and all. Although I haven't been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn't change his opinion about me.
Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said "Of course they like you! You're so laid back and sweet. You're the kind of person who a child would naturally feel comfortable with and open up to". I so appreciated his compliment! It made me feel great and so special smile emoticon
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