Tourette Syndrome in 1930
My dad told me a story about how he had Tourette Syndrome when he was a young boy. Actually, he never said the words “Tourette Syndrome” nor did he ever say “tics”. What he did tell me was how he jerked and shrugged his head and shoulders. He was in his early grade school years. He laughed as he described to me how he used to shrug his shoulders up and down. His mom was worried and thought something was very wrong. His mom, being my grandmother, took him to the doctor. She told the doctor that he wouldn’t stop. The doctor told my grandma to ignore him when he did it. He told her that he only wanted attention and that if she ignored him, he would eventually stop.
What Tourette Syndrome (TS) is
Before I tell you more about my family history of Tourette Syndrome, I want to briefly describe what TS is. No, it’s not spewing profanities. Some people with TS have profane outbursts (officially called coprolalia), but it is not very common. Most people with TS don’t have coprolalia. What people with TS do have is a combination of both motor tics and vocal tics. For a person to be positively diagnosed with TS, they need to have both motor and vocal tics for one year or more. A qualified physician, such as a neurologist, will be able to determine and diagnose TS properly. (You can find out more about Tourette Syndrome here.)
Motor tics can be described as involuntary muscle movements, including, but not limited to:
- shoulder shrugging
- eye blinking
- finger snapping
- head jerking
- twisting and tummy rolling, and more
Vocal tics can include things like:
- clearing the throat
- grunting noises
- shouting of words and phrases, and more
Tourette Syndrome does not by itself shorten a person’s lifespan. It does have a host of other issues that can lead to depression and low self-esteem. TS can generally be diagnosed between the ages of 5-8. There is no cure for it and once a person has it, they have it their whole life. It can get worse with stress or lack of sleep. The teenage years for a person may be some of the worst. Many people find that their TS symptoms subside in their twenties, but that isn’t the case for everybody. Not all TS cases are the same. Some have mild cases, some moderate cases and my heart hurts for those with the severe cases.
How my dad’s story affected me
As I got older, I never saw my dad have any motor or vocal tics. He did, however, have a very healthy presentation of Obsessive Compulsive Disorder (OCD). Keep in mind, my dad was never medically diagnosed with TS or OCD. Had he been diagnosed, he may have been better equipped to understand and deal with his OCD. He was an excellent hand washer. I often watched him wash his hands repeatedly and thoroughly. (I never saw anyone do it better!) His hand washing was never just hands. It always included his forearms, up to his elbows and continued for at least a minute. It was quite a production.
Checking and rechecking
Each night before he went to bed, he checked the locks on all the doors in the house, multiple times. Part of his nightly lock-down routine was to also wiggle the knobs on the stove to make sure the burners were really “off”. He opened and shut the door to the basement several times, looking down the stairs to make sure no one was down there. The curtains on all of the windows he pulled shut and arranged with no gaps. He also peered out the windows repeatedly to make sure he couldn’t see anyone “snooping around”. There were many other things that my dad did, but I think this gives a good idea of his OCD behaviors.
Like father, like daughter
It’s possible that watching my dad and his OCD affected me to the point that I also mimicked some of his rituals. As a young girl I can remember counting out my steps and having to have them be ‘even” numbers for each foot before I got to a certain walking destination. If I stepped on a crack with my right foot, I had to step on the next crack with my other foot to make them equal feeling, or it just didn’t feel right. If my foot missed the line in the first attempt, then I would have to repeat the sequence all over, just to “get it right”. In my twenties, I also did the door locking and double-checking, just like my dad did.
How it affected me
Once I had children, the OCD began to fade away for me. There were times that I can remember that I had to make purposeful efforts to counteract my previous OCD tendencies. I would open the curtains instead of shut them, or force myself to just walk and not look at lines and if it didn’t feel right, just keep walking. I gave myself permission to stop having to do some of those repetitive things. In part, I think that I was just growing out of the OCD behaviors because I was physically at a different stage of my life – having children and becoming a hormonally different person than I was as a teenager.
Tourette Syndrome in 2000
My 7 year old wouldn’t quit sniffling and snorting
In the Fall of her 1st grade year, my daughter developed what my husband and I thought was a cold or an allergy. The sniffling and snorting lasted from October to November and we just couldn’t handle it anymore. We were getting irritated because she would do it at the dinner table and when we would offer her a tissue, she said she didn’t need one. We’re not proud of how we dealt with it, as we became impatient with her and snapped at her regularly to stop doing those things.
We nearly repeated 1930
We even told her that if she didn’t stop, we’d have to take her to the doctor. One day we observed her and our two other children sitting on the couch watching a movie. Our 1st grader was blinking her eyes, jerking her shoulders and flipping her wrists up and down. I knew right then that something was seriously wrong and I started to cry uncontrollably.
We took her to a family practice doctor who knew nothing about TS. I didn’t even know about TS at this point. He did some blood work and said that our daughter was having tics due to having had strep throat in the past. So we treated her with antibiotic. It didn’t help at all. We then took our daughter to a neurologist, and he correctly diagnosed her in about fifteen minutes with Tourette Syndrome. My first question for him was “is she going to die?”. We learned a lot that day. No, TS is not a death sentence. But we did learn that it is genetically inherited.
Cousins with Tourette Syndrome
After my daughter’s diagnosis with TS, I was convinced that my dad’s story of shoulder shrugging as a boy and the trip to the doctor were strong indications that he probably had TS. It was only after my daughter’s diagnosis that I remembered my dad’s story. I knew then that he wasn’t just a boy trying to get attention. More recently, I have learned that I have a few cousins that also have Tourette Syndrome.
Why I’m glad I know who has it
It felt so good to finally discover that my own family wasn’t alone in the struggle. My paternal relatives are genetically predisposed to TS. That part doesn’t feel good. I don’t feel good that I might have to watch a future grandchild deal with TS or OCD. What does feel good about knowing who has TS and which family it came from is that it explains many behaviors. Knowing who may have this condition helps explain why some of my dad’s family members stayed in their houses and feared going places. It explains low-self esteem in some. It makes me want to love them more, because I now know the inner battle that so many in my family have to face and will face, their whole lives.
What it means for future descendants
The reason I write about this here for all to see is that Tourette Syndrome isn’t uncommon, but it’s still often treated like a joke. People stare, laugh and make jokes about “tourettes”. Kids with TS have such a difficult time growing up. They don’t want to be identified by their tics. They want to be identifies as a kid, like everybody else.
I write this because I carry the TS genes that got passed on to my daughter. I write this because I have experienced the pain of watching my beautiful girl struggle through school trying to hide her tics. She often would come home from school exhausted from trying to hide her tics from her classmates all day long. She had horrible headaches from the stress of it. I am so proud of how she excelled in grade school and on through college. God provided the strength for her and our family to get through some difficult situations. I believe we made it through those hard times feeling blessed rather than feeling sorry. It is through trials that we see how much God loves us and always provides a way to make it.
Tourette Syndrome runs in my family
My dad didn’t know about Tourette Syndrome or that he had it. He believed the misdiagnosis – that all he wanted was attention. He would have been glad to know there was a reason why he did some of the things he did. Families can now share and learn together about conditions like TS and find help and talk openly. By doing so, we will all be better able to help and support the people we love and care about, for generations to come.