52 Weeks of TS: Week 15

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 14 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

So I guess this week is really like a results show. How was my week with my new medication regimen? Did my tics change with the void of smoking? Did my new work out schedule change anything with my tics and anxiety? These are all difficult questions to answer, especially after only one week. I’m sure with all the changes going on in my body it will take time to see any results, and I’m well aware of that.

I guess I can start by saying that as for the quitting smoking, I’m a failure. I did not quit. I will be 38 years old this year and I have been smoking for almost 20 years. About five years ago, I did quit cold turkey for three years. I can’t really say if I noticed any differences in the tics at that point, but I wasn’t really paying attention at that point.

When I quit five years ago, I read a book “The Easy Way to Quit Smoking” by Allen Carr. The book points out many facts of smoking, and is almost like a hypnotism book to make you stop smoking. You read the book, and by the time you finish the book, you don’t want to smoke again. For me, the book did what it said it would. I quit for three years.

As I said last week, there are many studies out there that says, nicotine helps reduce tics, but nothing is actually proven. This concept confuses me seeing that nicotine is a stimulant and studies say that stimulants actually trigger tics. Is there anything out there that will actually help us? I guess we all just have to try different things for ourselves, but I am going to make another attempt to quitting smoking this week.

Maybe next week I will actually have some more info for you. I have been smoking for so long, and honestly, I HATE it. It’s gross and expensive, so I hope to not let you down and actually defeat the nicotine addiction and say farewell to the evil beast.

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List of all NJCTS webinars, including August 13 on 10 ways to make a great school year

THIS WEEK’S WEBINAR

10 Ways to Make a Great School Year

August 13, 2014
Presented by Dr. Michael Osit

Along with an extremely early Labor Day comes a rapidly approaching return to school for your children. Some of you might be dreading it because there are homework, scheduling and chauffeuring challenges that accompany the school year. Others are excited both for your child’s new adventure in learning and for the ensuing break you may need from them. Either way, there are 10 things you can be doing over the final few weeks to help ensure a great school year.

REGISTER FOR THIS WEBINAR »

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52 Weeks of TS: Week 13

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 12 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Me: I can’t breathe, not sure if I want to scream, or cry. Oh, hello panic attack, nice of you to stop by.
Panic Attack: No problem, I thought I’d stop by and stand on your chest.

Can that sum up my week? Yeah, somewhat. I have a problem saying no, I say yes too much. Sometimes I think I am a super hero, and I’m able to do everything, but I can’t, and I have to face the fact that I need to learn how to say no for my own sanity. I keep on saying yes to different people for different things that I end up giving myself a panic attack.

Why do we find it so hard to say no? It has one less letter than yes, so you think it would be easier. At least I’m not blaming any, or everyone else. I know it’s my own fault, but every time I say yes to something I feel like it’s a whole other planning process. More for my screwed up mind to organize and I get to a point where I feel like my head is going to explode.

I think that’s another one of my problems, organization, it’s one of my OCD’s. No matter how organized something is, it’s not organized enough. I organize everything, time, bills, events, clients, work, books, and food. Oh the list can go on. The problem is that there is no time to rest. That annoying OCD works 24/7, I’m tired and all I want to do is rest, but my mind won’t let me.

This is where the good old chain reaction comes in. The OCD triggers the anxiety, and the anxiety triggers the tics. Round and round the wheel spins. STOP!!! I want to get off this ride. But wait a second, why do I say yes? I say yes because I want to, I want to bring happiness to others however I can.

So yes, I will come out to Brooklyn and do your hair, yes I will design the hair for a show in two weeks, and why not? Sure I can do the TSA national walk, and yes I’m going to continue writing about my life every week, letting you into my life with TS!

If I really look at it, there are definitely things I can stop saying, but why stop saying yes? Yes is a positive word and no is negative. I don’t want to be a negative person. What I really need to stop saying is sorry. I paid close attention to how much I say sorry about my tics, mostly in public, or social setting, but I apologize for my tics all the time. Why do I do this? I’m not sorry!

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52 Weeks of TS: Week 11

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 10 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I have Tourette syndrome. Have I mentioned this before? Well of course I have, maybe too much. That thought has been going through my head all week. Do I talk about my TS too much? Does the constant conversation feed my disorder? I mean it’s not as if I’m walking around and telling strangers, “Hey, I have TS”, but I continually bring up the conversation in certain social settings. I guess what I’m saying is, is it too much? Is my activism annoying people? Well if it is, guess what? I don’t care!!

Like I said before, I’m a super hero armed with a mouth, and the first step to education is opening that mouth. I HAVE TOURETTE SYNDROME. This is why I do what I do, if you want to ask me about it, I would love to tell you whatever you want to know.

I actually had a pleasant conversation this week with someone about TS. I had to get a heart sonogram because I’m on Adderall and because my mother passed away at a young age from a heart attack (love you, miss you mom). The technician performing the procedure had me in a position that I was afraid I was going to hit her with my elbow when I ticced.

She let me position myself to where I was comfortable. Not knowing much about TS, she openly asked me question after question, and I openly answered all of her questions. It was a great feeling to be approached on the situation as she did, and to then educate her. Yes, educate someone in the medical field.

I wish it was this easy in all situations, but it’s not. I had a friend ask me, “If someone was to approach me about my TS, how would I like them to do that?” That’s an easy answer for me, just ask me, but that’s just me. There are many people out there who are not as comfortable as I am. It can be a very delicate situation, but I guess to answer the question, you really have to feel out the situation.

If you notice someone ticcing and you feel the need to approach the situation, start off discreetly and with compassion. The person is more likely aware of what they are doing, but more importantly probably very self-conscious of their TS. I am very open about my TS, but that doesn’t mean I’m not self-conscious myself.

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Believe it or not, teachers don’t have it easy, either

I cannot believe I waited an entire 8 months to post…

My first year of teaching is coming down to the last 3 weeks. To say I’ve learned a thing or two is an understatement. Being on the other side of the table has been a little overwhelming and I found myself feeling bad for the times I was not in the least bit sympathetic towards Jacob’s teachers.

It’s not easy being on either side. This is my only excuse for not posting….stress. By the time I get home, It’s time to think about me and my family. I learned after the first few months that your priorities change when your number one priority needs you the most. I can’t wait for these next few weeks to pass so I see more of him.

He has been doing good considering another child started mocking his movements a few months back. Jacob took it upon himself to start twirling a pencil in his right hand because he figured it out that his tics could be somewhat controlled when he does this. I talked to our school occupational therapist and told her a little about Jacob. She recommended that maybe I should get him reevaluated for OCD.

Jacob could care less (for the most part) about having tics on daily basis but he freaks out about the smallest things and he is absolutely terrified about aging. He’s 12! He does not want to get older and he cried as his birthday approached last year and he is already started to panic about this year.

I’d really appreciate some input from other parents on this issue. It’ll be a few more weeks before I’m able to get him an appointment.

I will go with the promise that it will not be another 8 months before another post. Comment me on here or visit my Embracing Difference page on Facebook. I’d love to hear how you or your kiddos are doing.