US Travel Adventures 4 – New York City part 1

Day 8 (Monday 20th of June): Flying to NYC
Today Lilian and I went our seperate ways for the coming just-a-little-more-than-a-month… Oh my lovely how I am going to miss you. We had to go to seperate gate points that weren’t connected, so we had to say goodbye 1,5 hours earlier than expected.

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My flight was exactly on time, and I arrived 15 minutes too early at Newark. I had booked a shared shuttle bus instead of going with public transport – because I knew I’d get lost. After 2 hours of driving I FINALLY made it to what I thought was my stop, but the driver had decided for himself to not look at the address I gave him, but to bring me to another hostel that he found would be mine. I thought I was going to be scared but actually I just said: I refuse to get out at this stop, take me to my hostel. And so he did 🙂

I was put in a 6 person dormitory, and I think my roommates are all okay. I just said hello and went straight out of the hostel to have a look around in the city. After that I went straight to bed. In the middle of the night Lilian arrived at her changing-airport and we Facetimed for a while before I headed back to bed again.

Day 9 (Tuesday 21st of June): Figuring out a city on my own
I stalled and stalled and texted with everyone I knew before finally heading out into NYC. Oh gosh what was I scared. I have a map luckily, and I have been told that you can’t get lost in NYC easily, so with a 750 ml smoothie in my one hand and my map in the other I went looking for the American Museum of Natural History (you know, the one where Night at the Museum was filmed ^_^ ). I found it and bought myself a CityPASS!

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After that I went and got myself something to eat, but I was SO tired and didn’t understand the subway system here (and nobody willing to explain it to me, not even at the hostel) that I went back to the hostel to look online and find out myself.

I was supposed to do a Highline toured walk, but it started 15 minutes ago 🙂 I got myself distracted and fell asleep for an hour, whoopsie! But I can still go to the Top of the rock Observation Deck. So I guess I’ll grab a bite to eat somewhere and then head off to Times Square and the Observation deck 🙂

Day 10 (Wednesday 22nd of June): Taking the subway and Ticcing my brains off
Yesterday I did go to the observation deck, YAY! To my surprise, at 9pm (3am in the Netherlands) my sister was still online on Whatsapp, so we decided to Facetime each other… we watched the sun go down and the city turning dark while chatting about all kinds of stuff. Phototime!:

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Ok, on to today! It’s 32 degrees outside, a lot of sun and a lot of people around! I looked in my cityPASS and I saw that I could go to the 9/11 Memorial Museum. It’s a long walk from my place (1,5 hours or so) and though I am scared of public transportation I decided to try and be brave and just go for it. And so I did. It wasn’t as bad as I expected in terms of me getting lost (because strangely enough, I haven’t been lost in this city yet!), but it was loud and crowded and all the noises made me confused. Then, because of all the new impressions I started Ticcing like a mad person and yes – then people start staring at me.

Eventually I arrived at the 9/11 Memorial. So impressive. I was only 11 when it happened, but I can still remember watching it on the news and seeing the 2nd tower being hit by a plane. My stepdad went to the US 25 years ago and he went inside one of those towers. I was able to see the memorial falls and the museum.SDC18202.JPG

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I also went into the museum, which was so impressive. Can’t really say much else about that, except for this quote that really sticks with me:

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After that I thought that it would be time for something lighter. So I went to the High Line, where I was supposed to do a tour yesterday. I couldn’t find Gansevoort street – and I asked a couple of people – and of course I can’t say Gansevoort the English way, only the Dutch way, so nobody knew about which street I was asking. I accidentally bumped into a guy who also has Tourettes, we talked for a bit and then I finally found the Highline!
The High Line is a former train tracks above the streets that they made into a park. It’s 2 miles long and ends near the Hudson river.

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When the Hig hLine ended I saw that I was near Pier 83, where the Ferry’s were that I could take with my City PASS. So I went on a 1,5 hour boat trip on my own, around Manhattan! I love skylines ❤

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After this I walked to Time Square to try and get a ticket for Waitress, but they only had partial-view tickets that were still $100,-… So I went back to my hostel with a large fruit smoothie  and Whatsapped with my lovely Lilian ❤

Right now it’s 7:30 and I’m not sure what I’m going to do. Probably read a bit, take a shower and see if there’s nice people in this hostel I can watch a show on Netflix with (YES they have netflix in the hostel 🙂 ), and otherwise I’ll just fly solo for another day and a half! No biggie 🙂

I’ll end this blog here, and do the weekend in a seperate blog, because this one is getting LONG!

Hope you liked it, and and if you have suggestions as to what I need to be doing the next couple of days, let me know 🙂

Love, Sam

 

Medication – Yes or No?

Hello everyone,

Today I’d like to talk to you about medication (for Tourettes, ADHD, OCD, depression, mania, psychosis, but also for physical disorders…you name it!) and why and why not? I have loads of  opinions in my head and have my handy dandy Farmacotherapeutical Compas app with me to tell you some side effects of medication.

Medication in general
Can be very neccesary sometimes. When I take Tourettes as an example, I know people who benifit from their anti-psychotics massively, they don’t Tic as much and feel much better about themselves. They can actually do things now because they’re on medication.

You can almost hear a ‘but’ coming. Even as a Deaf person I can hear it coming. Here it is:

But: you always have to compare the up- and downsides. What weighs heavier, the upsides or the downsides of taking medication?

Anti-psychotic medication
Are, like it says, helping people cope with their psychosis better and often ‘get them out’ of psychosis. They also help people with Tic disorders because of – neurotransmitters. I’ll explain how anti psychotics work and why they work for both psychosis and Tourettes:

Your brain has neurotransmitters (‘chemical messengers’) that sends information from one side of the brain to another side. One of those neurotransmitters is called Dopamine. A high concentration of dopamine makes your brain work differently, because information is sent through the brain in another way than it normally does. Or it fires out information too much. Basically the higher concentration of dopamine  can cause both Tics and psychotic symptoms like hallucinations and delusions.
Anti-psychotic medication lessens the signals of dopamine in the brain, so that there’s a better chance of ‘normal information sending’. (Source: Psychosenet.nl )

The reason a lot of people stop this is because of side effects (weight gain, sleepiness, dizzy spells, nightmares, suicidal thoughts etc. – look it up for yourselves if you want to know more about side effects).

Anti-depressants
Are explained most of the time as meds that help with a chemical imbalance of serotonin deficiency. While I was one of the people who thought that too, let me explain further:
There’s no fixed explanation why people get depressed (some through genetics or life events- but why some people do get it and others not, that’s the question!), let alone how anti depressants improve symptoms.

That being said, researchers believe that it’s caused by how they affect certain brain circuits and how they react to the neurotransmitters (like serotonin, dopamine and norepinephrine). Different antidepressants seem to affect how these neurotransmitters behave.

There are different kinds of antidepressants, like SSRI’s, SNRI’s, TCA’s, NDRI’s.. I’m not getting into what is what and might work for what, because that’s individually figured out. That’s the downside of having these kinds of medications: you never know beforehand what will work for you, so you’ll have to try a couple to see which one works for you (With the least side effects!!).

Mood stabilizers

Mood stabilizers are the ones like Lithium, Carbamazepine and Lamotrigine, that stabilize the mood of (usually) people with bipolar disorder. It can also be prescribed to if you have severe mood swings (like in Tourettes, or when you have a antidepressant-resistance and are depressed).

Between 20-50% of the people who start with mood stabilizers will stop because of the side effects like: weight gain, thirst, nausea, muscle weakness/aches, emotional numbness, fatigue and concentration problems. That mean that 50-80% will stay on them, because they probably work! I don’t know how they work, but I’ll figure that out and let you know.

What should you do?
That’s always difficult to tell, because I’m neither a doctor, nor can I look into your brain to see how severe the problems are. If you’re willing to accept that side effects may arise, or really have to take medication because life becomes unmanagable otherwise: take it! Side effects might be bad, but feeling worse is even more detrimental to your health and self esteem.

Love, Sam

Question: what kinds of medications have you been on? Did they work for you or not?
Would you suggest it to somebody else?

National Dutch Tourettes Day!

Hello everyone,

Last week I went to the national Tourettes contact day and it was awesome!

Dutch Tourettes Association
They have a contact day every year around between april and mid-may and it’s especially for people who have Tourettes and parents of children with Tourettes. For the 85 children and teens this year there was an activity outside of the location, at an amusementpark. They do that every year. A lot of respect for the guides that go along with those 85 hyperactive kids!

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Camp Twitch & Shout
This year I am going to camp Twitch & Shout in the US, bút am planning on bringing what I learn there to Europe to implement there as well, so that European children/teens will have the same experience as we did last week for 1 day, and the kids and teens at CT&S will have the same experience for a week.

What experience will people have at the contact day/CT&S?
It’ll be a welcoming home, a family, almost sort of a Culture. New people coming in always say that they feel welcome, at home, nobody is staring at them and everything is just like a normal day out with friends.

For the non-new people it’s even better: you already know people, you’ve made friends and feel comfortable there. Like it’s a 1-day-a-year family that you never feel awkward with because of Tics and Tourettes. It feels like home.

Being a volunteer
ROCKS! I was allowed to co-host a meeting for young adults and parents of young adults. Initially me and my fellow host prepared for young adults only to brainstorm on activities they’d like to do more often with each other, but there were only 5 young adults and more than 10 parents of young adults. We switched things up and the young adults gave advice to the parents about everything they had questions about. I felt proud of ‘my group’ because they were so empowered and positive, and I love the fact that I’m part of a young adult group that is so strong!

What are other things I do for the Tourettes Association?
I organize meetings for young adults – we go to a cafe and chat regularly, and we have 1 big event every year. This year it’ll be on the 7th of May, we’ll have improvisation theater. Should be fun! Other things I do and like to do more often is giving lectures/workshops/raise awareness to groups that have nothing to do with Tourettes.

Awareness
This year there’s a group of Nurses in training who want a lecture about Tourettes, so a friend of mine and I are going to give them that experience. We did a similar lecture before and we had an ‘experience Tourettes’ theme in there, where we’d let them experience a little bit how Tourette, and especially Tics, work – by making them write something, having to stripe out every 3rd word and rewriting it (mental Tic), every time I clap my hands they have to let go of their pens, tap the end of their table (physical Tic) and then return to writing. They also have to have written their assignment within 1,5 minutes.

For people with Tourettes, it’s sometimes difficult to write properly with all the Tics that are going on, so in that ‘experience Tourettes’ excercise nobody ever finishes their assignment and they get frustrated that they ‘have to Tic’ because I make them Tic. And that’s what Tourettes sometimes feels like.

The students we’re teaching about Tourettes always go away with more knowledge, and that awareness creating is what I want!

Love, Sam

Question: would you want to raise awareness about Tourettes/other syndromes? Why or why not?

Preparing for Camp Twitch&Shout

Hello everyone,

I’m counting down the days until Camp Twitch&Shout starts. I almost cannot wait until it’s finally there! 74 more days to go and then it’s there!!

Travel to the US
As I am an ocean away from the US, I have to take a plane or two to get to Athens, Georgia for the preparations of the camp. Or I’ll just take a rowing boat, but I think I might have to get started a bit earlier on that if I plan on doing that. Just kidding, the only thing I fear more than flying is boats!

I had a meeting at the student travel agency, and we set up the following plan for the first weeks:
– Fly from Amsterdam to Toronto on the 13th of June, where I will hopefully stay with a host until the 20th;
– The 20th I’ll fly from Toronto to NYC, where I hopefully will stay at my father’s friend’s house until the 24th;
– The 24th a fellow camp counselor will join me in NYC and we’ll go to see gay pride and festival on the 25th and 26th of June.
– Then on the 26th of June I’ll leave in the evening with my fellow camp counselor to Washington DC, where we’ll stay until the 30th.

THEN WE HAVE CAMP! *jumps up and down hyperactively*

After camp I fly from Atlanta to San Francisco, where I will do a tour to Yosemite National Park. Then I’ll have a few days left in SF before I take the bus to LA. In LA I will do a 4 day tour to Las Vegas, Route 66/Hooverdam and Grand Canyon.

On the 24th of July I will leave LA and will head for Chicago for 4 days. Only then I can leave again to Amsterdam.

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Preparing for my trip
Since I’m not an US citizen, I normally would have to have a visa of some sort. Since I live in a country where the Visa Waiver Program applies I can stay in the US traveling for a maximum of 3 months. I will stay for 6/7 weeks so that’ll be no problem.

Meeting new people
I love meeting new people, and at Camp Twitch&Shout that’s certainly going to happen! Funny fact about me: In my own (spoken) language I am quite awkward socially, am not always able to make contact with people. In signlanguage I’m not awkward, but a bit shy, and in spoken English I am very outgoing and happy. Strange how different languages kind of make you a different person (more about that in a later blog!)

Because I literally couldn’t wait until I could meet my fellow camp counselors I asked some people to skype with me to get to know each other a little bit beforehand. And they actually wanted to! Only downside to this is: time difference! When I wake up and am most hyperactive and want to socialize the US-people are asleep. And when it’s afternoon and most people are still at work there, in my place it’s the end of the evening.

Surprises
All my hosts and even my girlfriend will be surprised by things I’ve got set out for them, but I’m not going to share those things ghehe!

More on my travel plans and how they’ll be working out, you’ll see later on when I’m traveling 🙂

Love, Sam

Experiences as a kid with Tourettes

Hello everyone,

Today I wanted to write about my experiences with Tourettes as a kid. Because of the camp I’m going to be a counselor at I wanted to look back on my own childhood and reflect on some things. At the same time it might be recognizable for campers who are coming to camp to read where I’ve come from and can see how their lifes can become just as great as anyone’s. Or for parents to relate to my story, and to know that things will work out fine in the end.

I want everyone to know that it’s TOTALLY OK to have Tourettes, there’s nothing wrong with having it, and it’s definitely nobody’s fault. Sorry if some parts are a bit depressing, it wasn’t all bad!

Different from the beginning
I was always a little different.

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The first 2,5 years of my life (according to my mum) I barely slept at all, cried all the time and was very restless. After the birth of my younger sister that changed a bit, but then the Tics started to emerge. Lately I’ve been watching a lot of old video recordings of me as a toddler and saw that I already twitched with my eyes, neck and mouth. I can’t remember being bothered about it, it just happened. I was careless and happy. Until I got to the age of 5 or 6.

Getting diagnosed
At age 5 or 6 my mum started to get worried about my Tics, anxiety and ‘attacks of rage’ as she called them. I was becoming unmanageable to my parents and they sought help from a psychiatrist. They diagnosed me with Tourettes and ADHD and advised my parents to send me ‘away’. Can’t remember where they wanted to send me, but they wanted to pull me away from my family. My mum was outraged to even think of letting go of her child, and she took me home. I’ll forever be grateful for that.

Medication
As cognitive behavioural therapy wasn’t quite common in the ’90s, I was prescribed many different anti-psychotics at age 6-8. Many medications caused me to become someone different from who I was: from quirky, hyperactive and funny, I went to down, letargic and irritable. Some medications worked for my ADHD (Ritalin for example), but they worsened my Tics. Finally, there was something that worked for me!! – but had the side effect that I gained 40 pounds in just a couple of months. And while that’s not good for anyone, especially for a child that’s really dangerous for your health! My mum asked me what I wanted, and that was to stop with medication and just accept that I Tic. She agreed.

Being told to stop Ticcing
I never minded that I Ticced, was only sometimes bothered with the physical pain some Tics caused. But people around me made me hyper-conscious of the fact that I was Ticcing, telling me to stop and ‘behave’ better. Like there was something I could do about the neurotransmitters firing falsely in my brain?
I think that is the worst part of having Tourettes, not even having the Tourettes, but the people who let you know (verbally or non-verbally) that you’re not ‘normal’ or that you ‘need to be fixed’ somehow.

In my teens
I still Ticced (they got worse in my teenage years), was hyperactive and impulsive. At home I was still told I wasn’t allowed to Tic, I ‘had to stop it’ and ‘try harder’. With Tourettes sometimes comes depression, and I think that especially happens when the people around you don’t accept you for who you are. Not that I blame anyone, people around me just didn’t know how to react to me. And I couldn’t tell them. My attacks of rage to others turned to rage towards myself. I became depressed.

It took me over a year to recover from that. It’s hard to tell this, because it’s nobody’s fault that I became depressed. It’s just something that happens more often to Touretters, and with love and support and lots of hard work everyone can get through those depressive moments.

Right now
As you can read in my first introduction blog (Click here ) I’m doing a lot better right now. I’ve accepted my Tourettes as it is, and can explain to others what it is I need.
This summer I’m attending Camp Twitch&Shout, a Tourettes camp, and I really really really want the campers to know: you can be yourself, you are allowed to be different, you are perfect as you are!

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What to do as a parent?
Nothing different from raising a child without Tourettes. Just love them for who they are, with all their quirky things. It makes them who they are. Acceptance of who your child is, is one of the most important things that I’ve missed when I was little. My parents did what they thought would be best for me – and what the psychiatrists told them. Which was: tell Sam to stop Ticcing, then she might learn to control them. Which turned out to be true, I can control my Tics quite well – that’s why many people don’t know I have Tourettes (well, now they do…), but it makes me feel like with Tics I’m not ‘good enough’. And I am good enough as I am – with my quirkiness (if that’s even a word) and my Tics. And your kid is more than good enough too!

Love, Sam

Living with Tourettes – an introduction

Hello everyone,

This is the first time I’ve ever written something online, but I’ve wanted to for a long time. To raise more awareness about living with Tourettes, and all the things that come along with that (in my case that would mainly be anxiety and ADHD, but also depression and OCD).

I want for people to understand what Tourette is from a, what I call, a Touretter’s perspective, not just the medical perspective. As a nurse in training I know all about the medical perspective: Tourettes is a neurological (or, debated, called a neuropsychiatric) condition that is caused by neurotransmitters firing out too many signals – causing Tics.
You can get treated for it with cognitive behaviour therapy, or medication (mostly anti-psychotics).

My perspective? Of course, Tourette has it’s downsides, absolutely. There’s nothing fun about being in a busy airport and being compelled to yell “BOMB!”, or having twitching limbs that are going in all directions except for the direction you want to go to. The physical pain that are caused by Tics… sounds quite dreadful doesn’t it?

But, as you may have noticed, I write Tourettes and Tics with capital T’s. Why? That’s something I learned from the Deaf community and kind of took it as a metaphore for Tourettes. I’ll explain: you can be deaf / have tourettes (medical perspective: it’s something that needs to be fixed, something’s off with you), or you can be Deaf / have Tourettes – that is a cultural perspective. I don’t mean to say that Touretters are a subculture, but when you put a lot of Touretters together you do kind of get a ‘family-feel’: everyone knows the daily struggles, not being understood. Nothing is weird when you’re around fellow Touretters.

I, for one, am glad I have Tourettes. I wouldn’t be able to do the things I do if I hadn’t, wouldn’t know the amazing people that I know (special shout out to Renée, whieeeeej my friend) and I would not be as understanding of people who are considered ‘different’ – that may be people with mental issues, physical issues that are seen as ‘abnormal’. I want you all to feel proud. We’re different, and it makes us who we are.

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That concludes my first ever online post. My personal introduction and my introduction on my hearing loss will follow soon!

Love, Sam