Ray Ciancaglini, of Geneva, NY, was an aspiring middleweight boxer (1966-72) who showed promise of a successful career. That Ray Ciancaglini is gone.
Ray suffers from Dementia Pugilistica - also known as chronic traumatic encepahalopathy, pugilistic Parkinsons Syndrome, boxer's syndrome and punch drunk syndrome - a neurological disorder which affects career boxers and others who receive multiple blows to the head.
The condition develops over a period of years, with average onset of 16 years after the start of a career in boxing. Symptoms manifest as dementia, or a declining mental ability, and Parkinson's-like tremors and a lack of coordination.
Now, Ray struggles to form complete thoughts, and each day is a struggle. He has a hard time writing his own name, and some days, struggles to recognize life long friends.
Early in his boxing career, Ray endured a second-impact injury - absorbing a concussion on top of an unhealed concussion. His durability was his own worst enemy. He'd never been knocked out or knocked down and that gave him a false sense of infallibility. The cumulative effects of several concussions left his fast hands unreliable, his sharp reflexes dulled.
Through the early 1980s, headaches became common place. Denial ensued. After a 14-year career at Eastman Kodak, Ray's work habits eventually began slipping. He was forgetting duties at his job, and began developing hand tremors and 'daze outs.'
After much prodding from family, Ray finally met with specialists. He was diagnosed with Dementia Pugilistica - a form of second-impact injury that lingered from his boxing days.
Untreated, recurring head traumas can lead to loss of balance - which can result in falls and injuries. The post-injury traumas can affect centers of the brain, resulting in lack of comprehension, forgetfulness, repeating sentences during conversations, confusion, insomnia and inappropriate behaviors.
The toughest part of Ray's situation is that now, he knows the world he lives in was mostly avoidable, and he wishes to help prevent any one else from following his path, and finding his world.
Its the intention of this site to help spread the word of the destructive nature of second-impact injuries and continue in the fight to prevent adolescent and student athletes from suffering repeat head-trauma injuries in contact sports.
No athlete is immune. Wrestlers, lacrosse players, boxers, football, softball and baseball players... They are all susceptible to head injuries. With the invincible attitude of student athletes and peer pressure to perform, responsibility now shifts to the shoulders of coaches and caregivers to recognize injuries and help protect the students from themselves.
In most cases, Ray found family and friends to be supportive. Beyond that, he found four categories of people:
1.) The Comedians: They like to make jokes and have derogatory nicknames (slap-happy, punch drunk) for those suffering with the conditions relating to second-impact injuries.
2.) The Skeptics: These are the nay-sayers. They don't accept the far-reaching effects and place the blame on other factors, suggesting drug use or alcohol dependency. They ask if the affected individual is getting proper care, or ask if a few knocks to the head can really leave that much damage.
3.) The Judgementals: They discredit the affected individual, and point out the people they know who have done better or overcome head injuries. They point out losses, and overlook successes.
4.) The Fair Hearted: They recognize the accomplishments of the affected individual, respect that individual's life-changing scenario, and extend support as the life of the affected individual continues not just to change, but as it simply continues. They understand that even with this brain injury, the person is still a human being with feelings and goals in life.
While 97-percent of people will offer a warm handshake and smile and well wishes, it's the first three-percent that make living with second impact injuries that much more trying.
This is a progressive disorder; there are good days and bad days, and days where the meds might work better than others. There are days there might only be a little 'buzz' and life goes on as normal, but slowly, the good days get fewer and farther between. Half/Half days feature slower speech, and clumsy coordination. It is also welcomed with paranoia - you're aware of your condition, yet unable to completely control things. Bad days are exactly that - bad days. The affected individual can not perform normal duties, and may not be aware of their surroundings.
Patience and helping the affected individual maintain their level of respect can be the most important treatment of late-stage double-impact injuries and their lasting effects.