Thea DeStephano

”Parkinson'sThea DeStephano is no stranger to neurological disorders.

She was first diagnosed with a neurological disorder known as Sydenham’s chorea at the age of 12. Sydenham’s is a disorder with symptoms similar to those often associated with Parkinson’s. Primarily rapid and uncoordinated jerking movements mostly affecting the face, hands and feet.

Muscle weakness and diminished muscle tone are also common. It is thought to be caused by a streptococcal infection. Sedatives and complete bed rest are the usual treatment. She missed almost an entire year of school while recuperating.

At 33 she was diagnosed with lupus and participated in a clinical study and started and led a support group with other participants. In 2014, after experiencing rapid tremors in her legs when standing, she was diagnosed with Primary Orthostatic Tremor Syndrome. This is a rare, progressive movement disorder manifested by a rapid tremor in the legs when standing.

There is the sensation of unsteadiness or imbalance. The tremors stop when sitting or walking. The cause is unknown and there is no cure at this time. She is a member of NORD, The National Organization of Rare Diseases. She is hoping to bring awareness to this condition as well as other orphan diseases.

Thea had been seeing a neurologist at the University of Virginia Neurology Clinic for about 6 years for Orthostatic Tremor. The neurologist felt that she was exhibiting symptoms of Parkinsonism and she was diagnosed with Parkinson’s in 2020. Thea is active on the My Parkinson’s Team site, which is an online support group, and she participates in a local support group.

Thea is a retired kindergarten teacher and has been married for 56 years with 2 children and 6 grandchildren. When she is not researching and learning all she can about Parkinson’s, she enjoys journaling, travel and decorating for every season and holiday.

Her motto has become, “If I stumble, I will make it part of the dance.”

Click here to read all of Thea's articles on ParkinsonsDisease.net.

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