by Kristin Baker Przybyla
Today I'm going to have to copy over something I posted in the notes section in my Facebook a few months ago, because we're heading out of town this afternoon and last-minute packing chaos reigns. So I apologize if some people have seen this already. I'd always meant to post a blog entry on the condition I've had most of my life anyway, not to get anyone to feel sorry for me or to make excuses for anything I do--but to try to encourage understanding, compassion, and acceptance of a mental illness that is quite often ridiculed and misunderstood.
I've copied and pasted information from the web, and added my own thoughts and experiences in italics. (And I'll talk to you all in a week, after I get back!)
***
I've had Tourette Syndrome and Obsessive-Compulsive Disorder ever since I was 6 or 7, but I never knew much about TS until a few years ago when I was prescribed some antidepressants that made my tics worse than I could have ever believed--I thought it would be better to die than deal with anything like that the rest of my life--and I researched and learned so much. I fight with the muscle tics (eye and facial, mostly) literally every second, although I've learned to hide it most of the time. It gets worse when I'm stressed, tired, or watching tv.
Tourettes Syndrome is characterised by a number of frequently changing tics. It is apparently caused by a difficulty regulating dopamine which is a neuro-transmitter which causes impaired action of various receptor sites. It is a genetic disorder and it is thought that 3% of the population have it and four times more boys have it than girls.
The vast majority of people with TS have dysgraphia. Dysgraphia can be defined as the inability to get thoughts from the brain to the paper for a wide variety of reasons. The reasons are complex but can include hand, finger, wrist, arm, neck, shoulder, head and eye tics or hand cramping. Sometimes it is an unexplained disconnection between ideas and the ability to express these ideas in writing. Some students, due to obsessive compulsive behaviors, become stuck on writing perfectly and it takes them an inordinate amount of time to accomplish the task leaving them frustrated, exhausted and unsatisfied with the results. In addition some people with TS and OCD have an obsession that compels them to count every word in a sentence and every sentence in the paragraph. This makes reading not only very tiresome, but next to impossible.
I went several years without reading anything because just getting through a single page could take an hour. Fortunately, my love for books proved to be stronger than a difficulty in mentally processing what I'd just read. It took several more years of training myself to move on from one sentence to the next without obsessively re-reading four or five times. It still takes me about two to three times as long to finish a book as for someone who can read "normally," and although I've read hundreds of books, every time I finish the last page, I view it as a triumph. I'm sure getting back into writing the last 5 or so years has helped tremendously, as it's been a whole new way to train myself and think.
I'm so grateful I was able to train my mind to work around the comprehension problems. It's hard to describe what that's like--I can read as fast and well as anyone, but sometimes it's like a phrase gets stuck in repeat in my mind and refuses to let me continue, even though on a literal level I completely understand what I've just read.
Many people with Tourette Syndrome are chronically disorganized. They have difficulty developing strategies to overcome problems they encounter or implementing strategies that are suggested to them. In other words, they experience “output failure” which creates significant obstacles to academic success.
If I don't have a planned, detailed list, I panic and shut down. Nothing gets done. Most days are extremely difficult because of this lack of organization (even when I have lists) and the resulting depression. It's very easy for something I've accomplished to become completely derailed (i.e., a clean house), and starting back up from rock bottom can be very daunting.
I don't want to come across as using it as an excuse for anything, like, "Oh, I have Tourettes which makes me disorganized, so that's why my house is always a disaster." I don't believe in passing off personal responsibility for things. But it was very helpful to learn that there's a real reason for my chronic disorganization/attention problems, instead of just calling myself lazy, or a dismal failure like I did in the past. This particular aspect I actually didn't know about until recently. Now that I know why I have this obstacle, I can try to learn how to climb over it.
Inconsistent or chronic difficulties in focusing are common for people with TS. In addition to the symptoms of ADHD, complex tics or obsessions can interfere with a student’s ability to pay attention. This becomes particularly true when the student has an overwhelming desire to “suppress” symptoms in public. He may concentrate so hard on suppressing tics that he is not able to attend to the classroom activity. However, there are times when the student is able to pay attention even though it appears otherwise. As an example, many students and adults with TS will doodle to help them concentrate on a lecture.
I remember some teachers asking me not to turn in my notes and homework with doodles on them!
Many children with TS talk continuously and/or have a tendency to interpret things in a very literal fashion. This can create significant social difficulties as they grow up.
I have a very hard time interpreting sarcasm. Many times I'll take a sarcastic comment personally even if no harm was meant. And yes, I talk way too much despite being painfully shy. I know I tend to get annoying, especially on the Internet where I feel I have some degree of security, and sometimes I tend to "spaz out," get obsessive, and post things I normally wouldn't blurt in real life. Thankfully, I don't have the severe type that includes vocalizations and foul language.
Social settings always cause panic; I'm definitely out of my comfort zone in unfamiliar settings and among strangers. I've dealt with people who think I'm odd and nuts, so I always feel like telling about my experiences is a bit of a risk. But in the end, the ones who are kind and accepting are the friends who are worth it. This disorder has taught me to be much more understanding of people with any kind of affliction, mental or physical. I'm thankful that this aspect of my earthly test doesn't involve anything much worse, such as disruptive vocal tics--the motor tics are quite enough, thank you! ;)
Sources:
http://www.tsa-usa.org/
http://www.webmd.com/mental-health/tc/tourettes-disorder-topic-overview
http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm
Today I'm going to have to copy over something I posted in the notes section in my Facebook a few months ago, because we're heading out of town this afternoon and last-minute packing chaos reigns. So I apologize if some people have seen this already. I'd always meant to post a blog entry on the condition I've had most of my life anyway, not to get anyone to feel sorry for me or to make excuses for anything I do--but to try to encourage understanding, compassion, and acceptance of a mental illness that is quite often ridiculed and misunderstood.
I've copied and pasted information from the web, and added my own thoughts and experiences in italics. (And I'll talk to you all in a week, after I get back!)
***
I've had Tourette Syndrome and Obsessive-Compulsive Disorder ever since I was 6 or 7, but I never knew much about TS until a few years ago when I was prescribed some antidepressants that made my tics worse than I could have ever believed--I thought it would be better to die than deal with anything like that the rest of my life--and I researched and learned so much. I fight with the muscle tics (eye and facial, mostly) literally every second, although I've learned to hide it most of the time. It gets worse when I'm stressed, tired, or watching tv.
Tourettes Syndrome is characterised by a number of frequently changing tics. It is apparently caused by a difficulty regulating dopamine which is a neuro-transmitter which causes impaired action of various receptor sites. It is a genetic disorder and it is thought that 3% of the population have it and four times more boys have it than girls.
The vast majority of people with TS have dysgraphia. Dysgraphia can be defined as the inability to get thoughts from the brain to the paper for a wide variety of reasons. The reasons are complex but can include hand, finger, wrist, arm, neck, shoulder, head and eye tics or hand cramping. Sometimes it is an unexplained disconnection between ideas and the ability to express these ideas in writing. Some students, due to obsessive compulsive behaviors, become stuck on writing perfectly and it takes them an inordinate amount of time to accomplish the task leaving them frustrated, exhausted and unsatisfied with the results. In addition some people with TS and OCD have an obsession that compels them to count every word in a sentence and every sentence in the paragraph. This makes reading not only very tiresome, but next to impossible.
I went several years without reading anything because just getting through a single page could take an hour. Fortunately, my love for books proved to be stronger than a difficulty in mentally processing what I'd just read. It took several more years of training myself to move on from one sentence to the next without obsessively re-reading four or five times. It still takes me about two to three times as long to finish a book as for someone who can read "normally," and although I've read hundreds of books, every time I finish the last page, I view it as a triumph. I'm sure getting back into writing the last 5 or so years has helped tremendously, as it's been a whole new way to train myself and think.
I'm so grateful I was able to train my mind to work around the comprehension problems. It's hard to describe what that's like--I can read as fast and well as anyone, but sometimes it's like a phrase gets stuck in repeat in my mind and refuses to let me continue, even though on a literal level I completely understand what I've just read.
Many people with Tourette Syndrome are chronically disorganized. They have difficulty developing strategies to overcome problems they encounter or implementing strategies that are suggested to them. In other words, they experience “output failure” which creates significant obstacles to academic success.
If I don't have a planned, detailed list, I panic and shut down. Nothing gets done. Most days are extremely difficult because of this lack of organization (even when I have lists) and the resulting depression. It's very easy for something I've accomplished to become completely derailed (i.e., a clean house), and starting back up from rock bottom can be very daunting.
I don't want to come across as using it as an excuse for anything, like, "Oh, I have Tourettes which makes me disorganized, so that's why my house is always a disaster." I don't believe in passing off personal responsibility for things. But it was very helpful to learn that there's a real reason for my chronic disorganization/attention problems, instead of just calling myself lazy, or a dismal failure like I did in the past. This particular aspect I actually didn't know about until recently. Now that I know why I have this obstacle, I can try to learn how to climb over it.
Inconsistent or chronic difficulties in focusing are common for people with TS. In addition to the symptoms of ADHD, complex tics or obsessions can interfere with a student’s ability to pay attention. This becomes particularly true when the student has an overwhelming desire to “suppress” symptoms in public. He may concentrate so hard on suppressing tics that he is not able to attend to the classroom activity. However, there are times when the student is able to pay attention even though it appears otherwise. As an example, many students and adults with TS will doodle to help them concentrate on a lecture.
I remember some teachers asking me not to turn in my notes and homework with doodles on them!
Many children with TS talk continuously and/or have a tendency to interpret things in a very literal fashion. This can create significant social difficulties as they grow up.
I have a very hard time interpreting sarcasm. Many times I'll take a sarcastic comment personally even if no harm was meant. And yes, I talk way too much despite being painfully shy. I know I tend to get annoying, especially on the Internet where I feel I have some degree of security, and sometimes I tend to "spaz out," get obsessive, and post things I normally wouldn't blurt in real life. Thankfully, I don't have the severe type that includes vocalizations and foul language.
Social settings always cause panic; I'm definitely out of my comfort zone in unfamiliar settings and among strangers. I've dealt with people who think I'm odd and nuts, so I always feel like telling about my experiences is a bit of a risk. But in the end, the ones who are kind and accepting are the friends who are worth it. This disorder has taught me to be much more understanding of people with any kind of affliction, mental or physical. I'm thankful that this aspect of my earthly test doesn't involve anything much worse, such as disruptive vocal tics--the motor tics are quite enough, thank you! ;)
Sources:
http://www.tsa-usa.org/
http://www.webmd.com/mental-health/tc/tourettes-disorder-topic-overview
http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm
About 16 years ago I developed a facial tic. It's been very disfuguring and difficult for me to deal with. I've been blessed that I will overcome it...I sometimes think that means in the next life ha. My compassion for this has meanwhile grown. Just keep on being yourself and let the others catch up with you. You're doing all the stuff everyone has to do with TS and OCD. Enjoy your accomplishments. Like when I get through a whole day without a twinge of a tic.
ReplyDeleteThank you for sharing this Kristin. your post has given me greater insight concerning a friend in our ward who has TS. I appreciate the links to the additional info, as well. I hope your trip goes well! hugs~
ReplyDeleteKristin, I so appreciate your sharing of insights, knowledge, and information. It's valuable to us who seek to grow in relationships and being Christ-like in them.
ReplyDeleteHow interesting it is that many mental anomalies share characteristics! (Sorry. I refuse to equate some conditions with illness or disease. I have ADHD.) For example, in the last couple of years, I've found that tweeting LDS Conference with a bunch of friends actually helps me focus on the talks, instead of getting sleepy and nodding off. I compare that to the doodling, and may explain why I've been such a compulsive note-taker in the past. I never refer to the notes again, so maybe tweeting instead will save paper, since it's the activity, rather than the output, that seems to be important for focus. This year, I didn't have the opportunity to tweet, and sadly found myself wanting toothpicks to prop my eyelids open. Interesting.
Thank you Kristin. My family is facing TS for the first time in one of my children. You gave me more information than any doctor has so far.
ReplyDeleteKristin I appreciate the information and insights. It also got me thinking about other diseases like Parkinson's related to dopamine.
ReplyDeleteI am sure the tics are a tremendous challenge as the one little left eye tic I have drives me nuts. You have a lot going for you so I just want to send encouraging thoughts.
It made my day coming back to read these comments! Sharing is always hard, because ignorant people have made very cruel comments in the past. I've also lost "friends" who couldn't handle that I seemed a little weird. But you don't foster understanding by hiding what makes you who you are.
ReplyDeleteI read something about niacinamide supplements and other B vitamins being helpful in controlling tics, but I haven't actually started testing it myself. However, recently I've been a good girl and have been taking multi-vitamins that include B, and have noticed a drop in how annoying my tics are. I think it's worth looking into.
Cindy--my heart goes out to your child, this can be a bumpy road at times. But know that this is very manageable, the tics usually decrease after adolescence, and in time the sufferer learns ways to cope and deal with the condition. Understanding and love always, always help, especially if your peers outside your family are also supportive.
Marsha--It's good to know that doodling is actually good for concentration and not a way to goof off and let your attention wander! I still have a couple of notebooks that have lots of my silly doodles and comics, and I can remember exactly what was being discussed, whether in a writers' group meeting or Sacrament meeting (naughty me, lol) at the time that I was doodling.