Noel Valero spent life living large…many of those years were spent with his wife and kids. A lifetime of being athletic, he had no clue how to deal with what hit him at age 40 and how much his life would change. Here are a list of some of his personal symptoms and a brief version of the path he took to get a final diagnosis.

 Some of the symptoms he showed over time:

• Noel, a former aerospace engineer, was athletic and fit. However he found himself blinking a lot. He just couldn’t stop. – The Ophthalmologist thought everything looked alright. He may have dry eyes or simply having a reaction to his contacts.
• The blinking would subside but then come back.
• His wife noticed he was tilting his head back…craned up to the sky. He had no idea it was happening. He thought it was just a tick and it would go away.
• Then one day as he went to go down the stairs, his head craned back and he lost his balance and fell down the stairs. He then realized it was bad and set up an appointment with a Neurologist.- The doctor took his history and believed it was simply Repetitive Motion Syndrome from when he was an engineer. He sent him to physical therapy sessions.
• After a month, he noticed he wasn’t getting any better and actually felt he was getting worse.
• Then one day, he noticed he could not lift his right arm. He went to see his physical therapist.- The physical therapist ran a test and saw that his right triceps was paralyzed.
• He had accelerated degeneration and knew he needed to get help. He made an appointment with a well-known Neurosurgeon in his area. – the Neurosurgeon ran multiple tests including motor tests and an MRI of his right arm. Nothing looked wrong.
• Over the next few months he only got worse. Suddenly his long time back pain became unbearable. He was depressed, moody, easily agitated and he was struggling daily. He was in a horrible amount of pain. – The doctor told him he was unsure of the cause of the pain, but gave him pain killers to help.
• Over the next few months he saw doctor after doctor. He was withdrawn into his own painful world. Truly the lowest part of his life.
• In 2007, he went to his 25^th reunion and found that several of his friends were well connected Neurologists and suggested he see Dr. Roy N. Alcalay, MD.
• He made the trip and after several tests, Dr. Alcalay informed him he was suffering from Dystonia.

 Final Diagnosis:

• Dystonia – This is a rare movement disorder. The basal ganglia helps to control muscle movements throughout the body. Noel’s is malfunctioning causing him to have involuntary muscle contractions. People with repetitive movements are more prone to this disorder, but anyone can get it. For Noel, it was as if he has been exercising his back and neck 24/7.

 What is ahead for him:

• There is NO cure for Dystonia.
• It can progress to other parts of the body and can be unpredictable. However it can incapacitate him.
• Working his muscles can actually make things worse.
• Botox is helping! By shooting the drug into the muscle, it helps to numb it and relieve the pain. After the first treatment, his wife saw a resemblance of the happy man she once knew.

After 3 years, Noel will never be pain free, however, he now can be part of family’s life. He is happy once again. He has now channeled his energy into creating the American Dystonia Society. He hopes to help other families with similar problems in hopes that they can be happy, too!