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A family history: Mother not discouraged by Movement Disorder

Surprise!  I feel as if I have been hit by a ton of bricks.  With my family history, I should not have been so stupefied by the following events.  Let me start by saying that I have always wondered how I came away from the TS genetic pool with just some eye twitching when I was tired.

My dad has had mild tics, which our family thought were annoying habits until my son was diagnosed with Tourette Syndrome (severe tics) at the age of 6.  My daughter seemed to only have mild facial grimaces when fatigued or nervous. My problems were different.

After many years of being on medications for depression and anxiety, I was noticing that I felt uncomfortable in my own skin.  This past fall, I realized that I could not sit still on the couch and was jittery yet exhausted, and my body was having a strong startle reflex so that my shoulders would seriously jerk suddenly (almost like an electric shock).

Having spent the past 20 years blaming every symptom on my tendency for anxiety, I came to the inaccurate conclusion that my medication must not be working well anymore. With this belief, I went to my doctor to discuss changing medications with the intention of getting better results.

The doctor and I decided that I should try adding Wellbutrin gradually and reduce one of my other medications.  On the fourth afternoon of taking the new drug, I had an acute onset of violent, involuntary movements in various muscle groups throughout my body.  My movements included lip-smacking, kissing, painful facial grimaces, shoulder jerking, back arching, leg and feet flexing and spasms, and sustained neck twisting.

The movements are ongoing, but now less acute. Since the onset, I have also had strong premonitory feelings. Sound familiar? Shockingly, at the age of 52, my neurologist and I have decided that I have a movement disorder. Luckily, my “tics” have calmed down in comparison to how they were initially.

Nevertheless, I now have to limit the amount of driving I do and pace my work schedule in order to get through the day.  My sleep has been of poor quality and disrupted by constant movements, which causes daytime drowsiness.  With physical therapy, swimming and maybe medication, I hope to improve my sleep and lesson the tics.  What an ironic and rocky journey!

Having raised a son with Tourette Syndrome, I feel like I know a little more about what he experiences on a daily basis.  I also think that I should be approaching the situation with more artfulness and automatic acceptance. Yet, in both a literal and figurative way, I feel as if the earth has tilted and cracked under my feet.

I experience each day with physical instability and an inner spirit a little perplexed, tested and acquiver.  I still feel like having a movement disorder is implausible because I thought that at my age I had already bypassed the risk.

Despite grappling with the uneven ground under my feet, I am determined to use this experience for building and banking my inner core in this new chapter of my life, hopefully making an adjustment and helping others in similar situations along the way.

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    • Thank you very much Andrea. I appreciate your nice words. Am always trying to do my best. Hope all is going well for you. Ellen

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