52 Weeks of TS: Week 52

EDITOR’S NOTE: Over the past year on Tuesdays, noted Tourette Syndrome advocate Troye Evers has shared his “52 Weeks of TS” blog journal with the TSParentsOnline community. This is the LAST week of this series, so 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.

Is it really here? Have we reached the 52nd week of this series? From doctor appointments to social events, from new tics to new jobs, I have expressed it all and I have learned and grown from the whole experience. I’m sad that I have reached the end, but excited for what will come in the future.

But I’m still led to ask, “Why do I do this to myself?” Why are there certain occasions that I still let fear and embarrassment rule my life and cause me to be this untrue version of myself? The answer is easy, it’s those judging eyes. It’s much easier when you’re dealing with a one on one situation, but when you have a room full of people looking at you, staring at you, judging you, it can be hard.

It brings me back to my school days, sitting in the classroom and having all my peers and teacher looking at me. The only difference now is that I have an explanation. I know what to say to someone who asks that dreaded question, “Why are you doing that with your head?” but there is still that fear of people asking.

The rest of the week went well, but just more running around and very little time to rest. Besides working, I also was planning a  dinner for my co-workers. I have OCD, and for some reason I think it would be a good idea to invite 10 people over to my house for dinner. Do I really want 10 people walking around my safe zone, spreading germs, making messes, and moving and touching my stuff?

Well, I guess it’s too late. I opened my big mouth. Having a dinner party with this amount of people takes a lot of planning and organization, which is fine with my OCD and anxiety disorder. However, did I really need to set the table a week before the party? Yep, a week before hand. My husband questioned me about why I set it so early and I explained to him that I did not have time during the week to do it. Really? The truth is I’m OCD. I had to set it up early enough so I would know it was perfect. Everything had to be in the right place, and I needed to make sure it was all organized correctly.

Despite all my OCD’s the dinner went very well. Normally with an event like this, I would have asked everyone to take off their shoes as not to spread the germs of the NYC streets all over my apartment, but I was not able to do this. About 30 minutes before everyone arrived, my husband shattered a glass top to a casserole dish. The glass flew everywhere. Besides the kitchen, I found glass in the hallway and living room. We tried to clean it all up, but I knew there still might be a piece somewhere. Now the decision has come. I would much rather the germs of NYC in my apartment than the chance of someone’s blood.

How does my mind go to this extreme? Am I really OK with dirt from the streets on my floor, but not blood? I mean I could always mop the floor and sanitize them to clean up the dirt, but what if the blood touched me? OK, I know it sounds insane, but for me blood leads to death. What if someone has some deadly disease and they cut themselves and then I cut myself? OK, it doesn’t sound insane, IT IS INSANE!

Basically, what I’m saying is that a broken glass in the kitchen will lead to my death. Are you kidding me? I know I need to calm down about some things, but this is how I am. Everyone came over and we had a delicious meal (and everyone kept their shoes on, so I’m glad to say the grim reaper will not be making a stop at place anytime too soon.)

As I reached the end of the week, I reached the end of this series. It’s been a wonderful year, and I achieved my resolution. I reached out to so many people and educated many of them. I opened my mouth and through my words, I learned more about myself. I think my resolution for the year to come is to not be afraid. To be myself.

The end.

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 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 47

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 FIVE 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.

Happy birthday to me! Speaking of birthdays, I think I have concluded that I want my cake and I want to eat it, too. This has nothing to do with my actual birthday, but more about my life. I have been taking the fish oil for about two months now and have noticed different changes in my body.

Not only has it helped decrease my anxiety, but now I’m thinking it might be helping a bit with my OCD. I don’t think it is actually ridding me of my OCD tendencies, but I think that a lot of my anxiety triggered my OCD. It’s not affecting the germaphobia part of my OCD, but the cleanliness part is being affected. There are little things around my apartment that are taking me longer to do than they normally would. I’m actually leaving dishes in the sink, and I’m not freaking out about things being in the right place.

I’ve spent the past year trying different things to rid myself of different symptoms of TS. Now that I have decreased my anxiety, I’m happy, but am I ready to rid myself of certain OCD tendencies? I have always prided myself on the cleanliness and organization of my home, and now I feel as if it might be suffering.

There’s no winning. Either I can be filled with anxiety and have a clean home, or I can be relaxed in a dirty home. I know it’s really just my mind; my home is not that dirty. It’s yet another roller-coaster of emotions going on in my body. For example: Once we are done cooking, I will look at the dishes and have a little freak out in my head, telling myself I should clean the dishes, but there’s another voice that says I can do them later. It’s time to relax.

Who is this voice telling me that I can relax? I haven’t relaxed in years, and now that I am, I’m not sure if I’m ready. I know that this might make no sense, but I guess this is why I’m writing it. Sometimes things that happen in the head of someone with TS doesn’t make sense to someone else, but it might make sense to us.

I had yet another acupuncture appointment this time, but this week was different. Every week she pokes me with a bunch of needles, always in different places on the body. Sometimes on the head, sometimes in the ear, or wherever. It doesn’t hurt, but I have yet to notice any differences with my tics until this week. Nothing got better, but instead got worse.

All evening I kept on experiencing weird muscle spasms and new tics, but they were not like normal tics. I know when I’m about to tic, but these tics came out of nowhere. They just happened and that was it. This went on through the night and even after I went to sleep. That night was one of the worst night’s sleep I had in a long time. Every time I fell asleep, one of my muscles would jerk and wake me up. I was freaked out, wondering how long this would last. Thankfully by the morning I was my normal ticcy self, but I was left with a horrible back pain from ticcing all night.

The back pain is not new to me. This is the back pain that I spoke of before. I get huge knots in my back from ticcing, stress and anxiety that cause excruciating pain. It’s always on my right side, causing me not to be able to move my neck, turn my head or have much movement in my right arm. There is also another thing that lives on my right side, all my tics. Every time I tic, the pain just runs through my whole right side. I’m not blaming the back pain on acupuncture, but it is definitely something I’m going to bring up to my acupuncturist next week.

Despite all the pain, I still had to live my life. It was a full week. I also did a book interview for an online web show. Normally I would be extremely nervous about this, but I wasn’t. I’m not sure if it was the fact that I had so much going on, or maybe it was the fish oil calming me down. No matter what it was, the interview went well.

I’ve never been one for public speaking, but I do have to say, it’s much easier when you know what you’re talking about. I have yet to actually watch it. That’s the thing, I hate watching or listening to myself. I can hear my tics and see them. I have become more comfortable ticcing, and being myself, but that doesn’t mean I sit around watching myself tic. No matter what, there is still that little self-conscious boy inside of me. That shy, scared little kid that doesn’t know what’s going on.

No matter what is going on in our life, I’m sure we can find something we are thankful for — we are alive. We have been blessed with the gift of life. Even though we might be given other gifts in life, we need to acknowledge that they are gifts. I might have spent most of my life hiding from my TS, but I now see it as a gift.

I feel I have been given this gift to learn from, and to educate people about the syndrome. I’m thankful for the people that I’ve touched, I’m thankful for the syndrome I was blessed with, and I’m thankful for you. Until next week, “I’ll tic to you later.”

Celebrities with Tourette Syndrome: Stories

If you or anyone of your loved ones were diagnosed with Tourette Syndrome, it doesn’t mean that either you or your family members can’t lead a normal life. Tourette disorder is not a death sentence neither it is disability, in fact, you can live a long and happy life and even leave a footprint in the history as a successful person.

In proof of this statement, below is the list of people who managed to become highly-successful while diagnosed with Tourette.

  • David Beckham. David Robert Joseph Beckham, a world famous English footballer (soccer player) admitted to have OCD (obsessive compulsive disorder) and Tourette Syndrome early in his career. He wants and needs everything to be perfect. Before Mr. Beckham can relax, he has to put everything in a straight line or in pairs. While diagnosed with OCD and Tourette David Beckham managed to win league titles in four countries and play for outstanding clubs like Real Madrid, Milan and Manchester United. Overall, during his career he played 741 games and scored 129 goals. He is also known as a fashion icon and a wonderful husband and father of 4 children.
  • Mahmud Abdul-Rauf.  Abdul-Rauf is a former basketball player known throughout the world for his most accurate free-throw shooting records. Mahmud has been suffering from Tourette Syndrome since he was a kid. His body tics are quite noticeable even during a game. While a lot of people discussed and even bullied him at first, Mahmud talked openly about him having Tourette and even emphasized that Tourette made him seek perfection in everything and achieve the great results he has. Mahmud Abdul-Rauf had a successful 9 years career and is still recognized as one of the greatest basketball players.
  • Howie Mandell. Howie Mandell is a famous comedian, brains behind several TV shows and a recognizable host of “America’s got talent”. His condition is similar to David Beckham, Howie is seeking perfection in everything. He even has two houses, one of which is aseptic, as he is also suffering from germophobia, which turns into severe tics. One of the 100 best comedians of all time, Howie has been very open about his condition and is sure that it hasn’t hold him back in his career and success.
  • Howard Hughes. A billionaire, innovator and an outstanding aviator, Howard Hughes, was also suffering from Tourette syndrome. His “eccentricities” as well as germ-obsession didn’t stop him from being one of the richest and most successful people on Earth. He is remembered as an unusual director and producer of Hollywood movies as well.
  • Dan Ackroyd. Famous Canadian actor was diagnosed with Tourette syndrome and Aspergers at a very young age. When he was a kid, he suffered from body and vocal tics and he could often hear voices. Fortunately, most of his symptoms were subsided by the successful therapy treatment when he was 14. Dan Ackroyd built a great career on television: he was a cast member of Saturday Live Show and he also starred in several movies like “My Girl”, “Ghostbusters”, “The Blue Brothers” etc.

P. Green is an author of “Celebrities with Tourette Syndrome: Stories”. Right now she works as contributor for the Android app for parents at Pumpic.

The OCD of germs

Kane has a way of remembering every detail of every situation, good or bad. This affects him within his life, day in and day out. For instance, this morning he told me he was cold so I reminded him there was a blanket on the back of his chair. He would not use it because Kenzi sneezed while using it last week. I told him I had washed it after that and it was fine; nope, not going to use it!

Yesterday, we were outside. He asked if I would please get him a drink since he was on the trampoline. He would not use the cup I brought him because a long time ago his cousin drank from it and she was sick. I explained it had been washed several times and it was fine; nope, wouldn’t use it!

He remembers if anything at one time has been “unsanitized,” according to his mind; therefore, will not use them. I try not to get aggravated because I don’t know how he feels, or what is going on inside his mind. At times I find myself having to take a deep breath! 

52 Weeks of TS: Week 27

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 any of the first 26 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Find a penny, pick it up, all the day you’ll have good luck. Do you think this really works? I don’t know, but I have a secret: I’ve only told one person this so far, and it’s not even my husband. In the past month, I have started to develop some sort of OCD/germaphobia to pennies. It’s actually growing to all change.

It used to be if I saw a penny on the street and it was face up I would pick it up, and if it were face down I would flip it over for the next person to find. My husband would always leave change all over the house, and it was my morning ritual to walk around and collect it all and put it in the change jar, this is no longer the case.

It started about a month ago, I saw a penny on the carpet in my house and it was facing head down. I didn’t even want to touch it, to flip it over, because I knew it would still be me who picked it up later. Wouldn’t that defeat the whole purpose if I were the one who originally flipped it over?

I find myself now walking around avoiding all change I find anywhere. If I really start thinking about it, (OK, I’m not thinking about it — I’m obsessing about it, but anyway) how many people, with how many germs have touched that coin, or any type of currency for that matter. Even look at the trail of paper currency, they actually have a web site where you can track where that single dollar bill has been.

When I get to thinking about this (obsessing), I think about rumors per say, about there being residue of cocaine on most paper currency. REALLY? After a million people have touched that dollar bill, you’re comfortable to shove that up your nose. I’d like to invite the world to come pick my nose. I don’t think so!

Enough with the bitching about my germaphobia with money, I’ll figure out another way to save money. Let’s talk about change, but not that kind of change, change that we can achieve.

Continue reading