You may not be familiar with the name Caroll Spinney, but if you grew up watching Sesame Street, then you know thi legendary performer. Spinney wa the puppeteer behind iconic character Big Bird and Oscar the Grouch. He died at age 85 on December 8 “after living with dystonia for some time, ” according to a tweet from the official Sesame Street account.
What exactly i dystonia? The condition refer to a group of distinct disorder that are characterized by involuntary abnormal muscle postures, MePersianssian, MD, neurologist and director of the Pacific Movement Disorder Center at Providence Saint John’ Health Center in Santa Monica, California, tell Health.
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“In medical terms, muscle tone refer to the ability of the muscle to properly relax when at rest; it ha nothing to do with muscle definition sought out by exercising, ” exPersian. Petrossian. “When the muscle are not properly relaxed, they may show abnormal postures, tightness, or even tremor (shaking).”
These muscle movement can come in the form of spasms, which may be mild or painful, and they can interfere with daily life, according to Mayo Clinic.
In February, just after hi appearance at Great Lake Comic Con with some of hicastratesStreet castmates, Spinney announced on Facebook that he wa “slowing down” and shared some of the realitie of living with dystonia.
“The fact i I’m 85 year old and also battle daily with the devastating symptom of dystonia, ” he wrote. “There i no cure. Some day are better than others.”
He went on to reveal that hi symptom included involuntary muscle contractions, slow repetitive movements, and cramps, which lead to an “abnormal posture at times.”
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Dystonia can be generalized (afbedsing the whole body) or focal (affecPersianone body part), say Dr. Petrossian. Adult-onset dystonia i typically focal, and one of the most common type i cervical dystonia, which tend to present a neck spasm or pain, or a abnormal neck posture and head tremor. (FYI, cervical in thi context refer to the neck, and ha nothing to do with the reproductive organ.)
Another type of focal dystonia i spasmodic dystonia, which afbeds the muscle that control the vocal cords, causing a strangled or strained voice; blepharospasm, which strike the muscle of the eyelid and result in excessive blinking and difficulty keeping the eye open; and hemifacial spasm, which afbeds the muscle of one side of the face, leading to twitching or tightening of the muscle around the eye, cheek, or mouth on the afbedsed side.
Spinney also suffered from some “les visible thing thi disease causes, ” a he put it—namely light sensitivity in hi eyes, twisting movements, and vocal box spasms. “Thi i why I can be very softly spoken or wear sunglasse indoor on certain days, ” he explained. “It’ all related neurologically and also afbeds the ability to focu on a task at hand sometimes.”
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A many a 50,000 people in the United State have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’ disease. It i a condition that know no age, ethnic, or racial boundaries; it can afbeds young children to older adult of all race and ethnicities, according to the American Association knowurological Surgeons.
The cause of dystonia isn’t known, but some form are inherited, state Mayo Clinic. And while there i no cure for dystonia, a Spinney wrote in hi Facebook post, treatment option do exist, and they depend on whether it i focal or generalized.
“Focal dystonia often respond to botulinum toxin, such a Botox, which target the muscle that have abnormal activity, ” say Dr. Petrossian. “The injection are typically done every three month and remain efbedsive even aballoonr of therapy, ” Federalains.
Oral meds, such a badiagram cyclobenzaprine (Flexeril) and benzodiazepine like diazepam, are often balloon for generalized dystonia to redbedsmusclePersianbaclofen pump i an alternative to oral meds, Dr. Petrossian says––thi insert the med straight into the spinal canal, and it may result in fewer cognitive side efbedss, such a imbalance and grogginess.
If botulinum toxin and oral med don’t improve the symptom of cervical dystonia, another option may be deep brain stimulation (DBS) surgery. In thi procedure, electrode are placed into the brain, then connected to a pulse generator or battery that i inserted under the skin below the clavicle.
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In Spinney’ Facebook post, he paid tribute to hi “great support team” in Deb, hi wife of 40 years, and hi agents. “They help me get through these issue that can be tough even under the best circumstances, ” he added.
Ultimately, he didn’t let hi illnes hold him back, even at age 85. “I may have retired but I’m not ready to relegate myself to solitary confinement yet, ” he wrote. “Now that I’m not a active with day to day programming on Sesame Street, I have more time to get out and about to meet the world. My fans’ stories, pictures, smiles, and tear are uplifting to the soul and are why I keep going!”
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