52 Weeks of TS: Week 51

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just ONE week remaining in this series, there’s a chance you missed one or more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I have described my TS through analogies, poetry, honesty and fear, but the reality is that I have TS. I am Troye Evers and I have Tourette Syndrome. I don’t like my tics, but I’m going to own them. I don’t like my OCD, but I’m going to grasp it. It is an endless struggle, but it is part of me, it’s who I am. My TS has taught me so much, and helped me teach others.

It’s been about a week since I have stopped taking the Chinese herbs and I have not seen a change. Do I have to wait another four to six weeks for my tics to go back to normal, or am I stuck with these new tics? Out of everything that I have tried this year, the only thing that I have noticed to actually help is the fish oil.

I don’t regret anything that I’ve tried. It was all a learning experience. Therefore, something didn’t work for me. That’s the thing with TS; it is really about trial and error. Just because it did not work for me does not mean that it won’t work for someone else, but like 52 Weeks of TS, I think I’m near the end of my journey of trial and error. I could continue experimenting with different medications and other rumored helpful remedies or I can just accept what I was given. By accepting what I was given, I would make myself stronger.

As we venture deeper into the season, my OCD’s get worse. This is a normal thing, it happens every year. The media does not help me with this. The news is always reporting about how dirty and germ filled different places are. The other night they did a report on café’s and how germs are spread and how many there are. It’s really just gross. Do you realize how many people don’t wash their hands after going the bathroom? Then they will go to get their coffee and fill it up with milk. Now there is feces and urine on the milk that I’m about to put in my coffee. Just one more reason to never leave my apartment.

It’s things like this that makes my OCD and Germaphobia so bad. I don’t think I feed into it too much; it’s more the stupidity of other people. I walk around and watch people cough and sneeze all over the city with no cares of who’s around them. This week, I actually watched two examples of people’s stupidity like this. One was on my morning subway ride to work.

As I’ve already said, the subway ride is usually the hardest time of my day especially for my OCDs. One morning I was on the train and across from me was a mother with her son who was about three years old. I sat there and watched as the mother let her child climb all over the seats, then lay on the seats and put his feet all over the window. These feet that are all over the seats and windows are the same feet that have walked all over the city that is cover in bird feces, dog feces and rat feces.

This was not the end of it. After the little boy put his feet all over the window, he proceeded to get up, stand on the seat again and put his face and lips on the window that his feet were just on. The mother did nothing. Are you serious? It’s just absolutely disgusting. Now everything that your child has stepped in all over the city is now in his mouth. They soon got off the train and someone else sat down in the kid’s seat and rested his head on the dirty disease covered window. That poor unaware person.

This was not the only thing like this I saw this week. I also witnessed a woman walking down the street with a dead bloody pigeon. It looked as if the pigeon might have just been hit by a car, but really. Are you really just walking around carrying a dead pigeon with your bare hands? Pigeons are the most disgusting, disease-covered birds in NYC.

I’m not really fond of any birds, I think they are all gross, but pigeons are the top of that list. They eat anything, including garbage and I have even witnessed a pigeon eating a dead pigeon on the road. One of my friends and I used to call pigeons “rigeons” because they are rats with wings, and now this woman is walking around with it in her hand. The only question I have is, when is it going to be legal for me to walk around and spray strangers with my Lysol?

Yet I am still here, so I’m going to keep on keeping on. I have a bigger battle — educating people about Tourette Syndrome. Until next week, “I’ll tic to you later.”

52 Weeks of TS: Week 50

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just TWO weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I’ve been doing a lot of thinking lately, thinking about what I’m hoping to achieve through my writing. I was asked about this topic this week when I did an interview about blogging, writing and reaching out to the TS community. The interview was for the TSA newsletter, and it got me thinking: Besides a little ADHD and having a little difficulty concentrating, I don’t have that many problems writing. I can set a time line and finish the project in that time line. If I sit down in front of my computer, the words just roll onto the screen. I might not have a hard time now, and enjoy what I do, but this wasn’t always the case.

Back in school, I was always behind with my work and it was always a struggle. Being in a classroom full of students with all sorts of distractions did not make it easy. I know there are still children today who are struggling the same way, too scared and embarrassed to say anything. I wish I knew then what I know now, maybe I could have changed something in my educational process to make it easier and more enjoyable.

I have noticed recently that my tics are changing. I guess that they are always changing, but this is different. I’m not sure if they’re getting worse or if I’m just having a harder time suppressing them. I have said before how I have been getting more comfortable with my tics and not feeling the need to suppress them, but even in situations when I’m trying to suppress them I am finding it to be a struggle.

I’m starting to think it might be the Chinese herbs I’ve been taking. I have been taking them for more than six weeks now, and I don’t feel as if it’s helping at all. Now I’m just in a panicked state, wondering if I screwed up my body more with the herbs. I have made a decision to stop taking them, I have not spoke to my herbalist about this yet, but I just feel as if it’s something I need to do.

Our bodies are constantly telling us what they need. If we lack vitamin C, we crave orange juice; if we need protein, our body will let us know it needs some. This is how I’ve been feeling this week. I have been having many smaller tic attacks that I can’t control, and there is something in my body that is pointing to the Chinese herbs. So yet again, one more failed attempt to find my nonexistent path to normalcy.

One of the new tics I have noticed is a violent flipping in the middle of the night. I always thought I did not tic in my sleep. Even my husband has said that he knows when I’m asleep because I don’t tic anymore. In the past few weeks, I have noticed that In order to roll over, I tend to do this violent full body twitch to roll over. It’s so violent that I actually wake up. It wasn’t until this week that I started wondering about this new strange movement. Is it a new tic?

The other morning my husband woke up and told me I was not allowed to keep complaining about his snoring if I was going to continue this violent flipping thing I was doing. That was it, I was convinced that this was a new tic. My husband has noticed this new tic, and it is even keeping him up. Well I guess it’s even with the amount of time he keeps me up with his snoring.

I think this new tic was the last straw in my decision to stop the Chinese herbs. Is this new tic caused by the herbs or is it just more of the waxing and waning of the syndrome? It’s just gets me thinking more about what I might be doing to my body with all of these attempts to find a cure. Is there a cure? Is little old me going to be the one to find it? Is my life that bad that I need to keep attempting to do this to my body?

The truth is my life is good. I’m happy; I just do these weird movements. I’m sure I could continue educating people about the reality of TS, but how much would I really get across if I looked normal. If I twitch and tic, it will be easier to start a conversation if someone notices.

Maybe all of these attempts to find the cure, might be one more way for me to hide from whom I am, and that’s not what I want to do. Throughout this year, I have tried so hard to educate people and every time I do, I experience the greatest, warmest feeling inside. When I was hiding from who I was, all I felt was shame and loneliness. Why would I want to go back there?

I still find myself doing little things to hide from who I really am. This week I did some shopping for some winter clothes and I realized something else. I love hoods. Most of my shirts, sweatshirts, or coats have a hood. Wintertime is the best time for me to show off this love, but there is more behind this fascination. It is a way for me to hide. If I have a hood on, I feel like people can’t see my tics.

Armed with my hood, my sunglasses, and my earphones, I am hiding from the world. I think it is time to take off my armor, take off the sunglasses, take out those earphones, and pull that hood down off my head. Life is a learning experience and we spend our whole life doing this. Perhaps the whole reason I have gone on this journey was for me to learn. Let the world see me for who I am.

Until next week, “I’ll tic to you later.”

52 Weeks of TS: Week 49

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just THREE weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

OK, this is really it. We are coming so close to the end of this series. I really can’t believe how fast this year has flown by. Is it really already the end? I spent the evening in a minor anxiety attack. I guess the fish oil does not help with all anxiety. I tried to keep distracted with TV, but it was not helping that much. I did end up having to take a Klonopin just to relax myself so I was able to go to sleep. By the time I woke up the next morning, I pretty much forgot about the events of the night before, but I was quickly reminded.

I was walking along the area rug in my bedroom when I heard and felt a crunch under the rug. This is usually no big deal. I am always finding something that the cats got a hold of and have hidden under the rug. I have found pencils, matches, pen caps and whatever they get a hold of, but I never expected to find a mouse. Yep, a mouse. I felt and heard the crunch, and without thinking, I just lifted the corner of the rug to find out what they put under there this time. There it was, lying lifeless but its germ and disease slowly spreading through my home.

After a minor freak out, I knew I had to remove the deceased body myself. I went into the kitchen, and retrieved a pair of tongs and a garbage bag. After picking up the mouse with the kitchen tongs and putting the mouse and the tongs in a large kitchen garbage bag, I threw everything down the garbage shoot and went on to Lysol almost every square inch of my apartment.

I have spent most of the past 48 discussing different ways and options that I was attempting to help with any of my symptoms of TS. One of the most effective things is fish oil for my anxiety, but it is definitely not working on OCD and Germaphobia. I have tried many different paths, a lot of them with no outcome, but that’s just my case.

People with TS are all different, so something that doesn’t work for me, might actually work for someone else. I have been trying acupuncture and Chinese herbs and I am closely approaching the six-week period where I should be seeing some type of change, but I haven’t seen much of a change so far. I have tried to pay attention to any differences in my body, but all I can notice is maybe more tics, or just a harder time trying to suppress my tics. I don’t know if this is the Chinese herbs, or just the comfort and acceptance that has grown inside me.

I have grown a lot this year, and become very comfortable with myself and who I am. That’s what life is for, to grow. Even though the year is close to the end, I still plan to continue on my journey of growing and educating and I hope you do, too. Until next week, “I’ll tic to you later.”

52 Weeks of TS: Week 48

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just FOUR weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

It’s a quiet night in New York City — not a normal night, but a night that you think you can walk down the street and let out one of those tics. One of those weird and strange tics. Can you really walk down the street in New York and let out a barking tic without anyone noticing? Nope. No matter what there are still people out there.

Just when you think you’re alone and you fling your head around, or make some weird vocal tic, someone walks around the corner. You see the stranger look at you with that questioning look, asking themselves if they really saw or heard that. They subtly look at you to see if it happens again, and wonder what is wrong with you.

This is the point where you try to cover it up, a violent throat clear as if you’re choking on something, or maybe a swatting at your face as if there was some bug on your face. Did it work? Do they really believe the cover up, or do they just think you’re a crazy person?

We travel a hard and difficult road. As anyone with a disability, or something that makes them different, you can never really understand what they are going through. I can write and write about what is going on in my mind and body, but does that really put you in my shoes? Can you really understand what is going on in a body of someone with TS? Do you feel the fear, do you understand the embarrassment?

I don’t think someone will ever truly understand unless you have actually experienced it to the level of someone with TS. I can only put so much into words and on paper, but the truth lies inside me. The emotional and mental war that goes on inside me sometimes feels like an endless battle, but I continue to fight. I fight with my words and experiences in hopes to educate one person, but that’s only part of the war.

I might be able to dispel some of the stereotypes of TS in one uneducated individual, but I still have to battle what’s going on in my body. Education does not make my tics go away, it doesn’t calm the anxiety, and it is not going to rid the embarrassment I live with. I fight these battles alone.

To fight these battles I find new weapons all the time. It’s almost like a video game; if one weapon doesn’t work, I go into my arsenal to find a new better weapon that might do the job. So far, I have found some good weapons. The fish oil has been working great with my anxiety. It has not rid me completely of all my anxiety, but so far so good. I never thought that I could be or would be as anxiety free as I am today, but I do feel blessed by this.

After living with such anxiety for so long, it is hard to get used to being as calm as I am. I still am having difficulty dealing with the lack of anxiety in my everyday life. As I said last week, I have become much more laid back with my daily rituals. However, it’s a soothing change to not be worried about so much.

The world is not going to end if I wait until morning to put the dishes in the dishwasher, or wait an extra day to water the plants. It’s a beautiful thing to sit in bed for that extra hour and not worry about finishing everything that has to be done before I have to leave for work. If I don’t get it all done, there is always time to do it later.

One of the newest weapons in my arsenal is a combination weapon of acupuncture and Chinese herbs. Does this work? Is this working? I’m still not sure. My acupuncturist said it takes about four to six weeks to see a difference. As for the acupuncture, I have reached that six-week timetable, but I still have not seen any positive changes.

Last week I said that I felt as if my tics actually got worse after my session and actually may have had inflamed muscles in my back causing horrible back pain. I discussed that with her this week and we tried a new path in our journey. Instead of lying on my back and getting needles strategically place on my front, this week I laid face down with needles in my back.

In addition to the needles, she also used an ancient Chinese method of cupping which has been said to be an effective form of deep tissue massage. Did this new path work? Once again, I can’t say. By the time I had my appointment, the back pain was gone, but who knows, it might work in the long run.

I was able to reschedule my book release party this week for A Day in the Life of Tourette Syndrome because of the lack of attendees after the last book release. It was quite a success, and I was able to meet and talk to some of the people that I reached in my battle to educate. Just to hear how much they have learned from my words made everything I do worthwhile.

I know I can’t change the world all by myself, but I can get one step closer with each person I reach. I’m going to continue to reach out to people and educate them. If we all try in some way to educate someone, we will be one step closer to educating the world.

Until next week, “I’ll tic to you later.”

52 Weeks of TS: Week 46

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 6 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I’m tired!! I have to say, I think this has been one of the longest, most exhausting weeks that I’ve had in a while. I had a freelance job doing hair and makeup for a high school musical, which I do about 5 times a year, but this one was different. I usually design the show three weeks in advance, but I missed two weeks. I ended up designing the show on Monday, and we opened on Wednesday. This just made for a very stressful week, not anxiety, but a lot of stress.

Just like anxiety, stress triggers my tics, so it’s been a very ticcy week. I feel as if my brain has been bouncing around inside my skull all week. My neck tic has been bad all week, and I’ve been taking aspirin for the constant headache that does not seem to go away.

Usually, I try not to suppress my tics in my everyday life, but while I’m working in the high school all bets are off. I just feel as if I have to suppress them.

I guess it has to do with my own high school experience. There was always constant mocking and my fellow students were always making fun of me. Once I walk back into a school, it tends to bring me back to that time and place. It’s a cruel world we live in. I try not to suppress my tics in many adult situations, but when you’re dealing with uneducated ignorance and immaturity of high school kids, it can be hard to explain. How do you teach someone something who thinks that they know everything?

A person with Tourette Syndrome has to have thick skin. It’s not something we are born with, but we have to grow it. I thought about this a lot this week, and I’ve realized that we have been supplied the greatest weapon for our fight to educate — our mouth. The more we open our mouths, the thicker our skin becomes and the stronger we become, but it can be a hard thing to do.

When we are kids, we are scared, nervous and possibly beaten down by ignorance. It can take a lot for those shy kids to battle their own fears and demons, to turn around and speak about the very thing that has brought them down. Look at me. It took me about 15 years to start my battle against ignorance, and I still deal with fear. Despite the fear, I still try to fight the fight and continue to educate people.

Continue reading

52 Weeks of TS: Week 45

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just 7 weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

After the insanity of last week, life is slowly returning to normal. I was able to go back to work on Wednesday. Yay, I could finally get out of my house and go back to work. I got ready for work and went to the subway. It was already packed. I sat there on the crowded subway contemplating taking a different train. I knew if I took this train, it was not going to be good for my anxiety. I could already feel it build, but if I took a later train, I knew I would be late for work. I sucked it up and took the train. It was a nightmare. Every stop, more people got on and more anxiety built.

This anxiety thing is a bitch. Yes, my main anxiety is pretty much gone, but I still have the chance of having an anxiety attack depending on the situation. Here it is anxiety attack on the train. I feel everything closing in on me. The tunnel vision starts, and I slowly feel the weight on my chest growing. The subtle hyperventilating starts, the sweat comes rolling down my forehead and more builds in the palm of my hands. I can feel my heart beat through every extremity of my body.

My brain starts going a million miles a minute — “Get away from me, why do you have to stand so close to me? If I get off at the next stop, will there be another train close behind? What if that one is just as crowded? What are you looking at? Do they see my tics? AAHHHHHHHH!!!!”

After about a 40-minute train ride and an anxiety attack that I am convinced cause a heart attack, I have finally reached my stop. I run up the stairs barreling through people to get to ground level and breathe the fresh air of NYC. I’m free.

What the hell? There is no winning. I want to be agoraphobic, until I get a taste of it, then I need back into civilization, but that backfires, too. I guess there is no escape, but it eventually got better throughout the week. I continued taking the train, and eventually it became just part of my day, but the thought still lingered that it could happen again and I’m not going to know when.

One day I was on the train and the woman across was putting on her make-up. I sat there and watched her apply her make-up from start to end. It got me thinking, “What are we hiding from? Is anyone actually fully comfortable with himself or herself?” We cover ourselves with makeup to be a prettier version of ourselves. We pump ourselves with medications to hide from ourselves. You know what? These shoes do not define me.

Don’t get me wrong, I’m fully guilty of this. I spend most of my life trying to suppress my tics out of fear of judgment, but why am I worried about you judging me? I will probably never see you again in my life.

OK, I guess I’m finished with that negative rant. I’m making it sound as if my week was horrible, and it was actually not half bad. One thing that I’m really excited about this week is that my doctor ordered a Chinese herbal medicine for my tics. I should be able to start taking it early next week, and I’m interested and excited to see if it works. It says it takes four to six weeks before you can see any results, but how exciting is that? I could be tic free by the end of the year. I will keep you updated.

Until next week, “I’ll tic to you later.”

Not being able to fix your child’s ADHD doesn’t make you a bad parent

I think this is why it bothers me so much when I hear people harp on parents of children with ADHD (or any neurological disorder for that matter) about not using a particular method that’s sure to “cure” a child of his disorder. And there are lots of promised “cures” out there. Here are just a few of them:

The Feingold Diet

Diet – In the 1960’s, Dr. Feingold began to tout the idea that many behavioral problems in people with ADHD can be linked to food sensitivities. The “Feingold Diet” eliminates artificial food coloring, artificial flavoring, Aspartame, and artificial preservatives BHA, BHT, TBHQ.

The results have been mixed. ADDitude Magazine, one of the biggest parental authorities on ADHD, says in its article, “Is the Feingold Diet an ADHD Cure?” that while some people have proven to be sensitive to certain food additives, such as red dye, there hasn’t been enough conclusive evidence to pronounce this as a surefire way to fix the disorder.

WebMD’s article, “Attention Deficit Hyperactivity Disorder: Alternative Treatments” says,

With elimination diets for ADHD, parents try eliminating certain foods from their child’s diet if they believe these foods affect the child’s behavior negatively. However, some experts theorize that behavioral changes can be noted in children following an elimination diet simply because of the way parents interact with the child while on the special diet.

I have met children with ADHD who are sensitive to certain foods, and eliminating these foods from their diets help a great deal. These foods aren’t always the Feingold foods, however. Often, they’re individual to the child. In general, however, eliminating these foods doesn’t “fix” the entire disorder. It’s just one step toward making it more manageable.

Essential Oils

The idea behind using essential oils to treat ADHD is explained by adlMD.com. According to the company, essential oils are used to stimulate the “parts of the body that are not functioning properly, restoring the body to its natural state.” It goes on to say that some particular chemicals present in essential oils might react with the nervous or muscular system to “encourage healing.”

Brain Balance Achievement Centers article, “Essential Oils for ADHD,” says that there are some essential oils that have shown some success in aromatherapy by helping calm children with ADHD, such as Ylang ylang, Vetiver, Frankincense, and Patchouli. (I’ve also read that simpler oils such as citrus, lavender, and mint can help with anxiety relief.)

Natural Interactions

The organization does encourage caution, however, when using any essential oils, particularly because there hasn’t been much research done on them, they aren’t regulated by the FDA, and they can cause skin irritations sometimes. Finally, Brain Balance says, “If used carefully you may very well find that essential oils enhance focus in children with ADHD and attention issues. Essential oils are not a cure, but it seems they can be used to calm your child and may help to improve concentration.”

I personally believe more research needs to be done on the use of essential oils.

Continue reading