Ray Ciancaglini is a former highly regarded boxer (middleweight 1966-1974) who suffers from Dementia Pugilistica, also known as Chronic Traumatic Encephalopathy, Pugilistic Parkinson's Syndrome, Boxer's Syndrome or Punch-Drunk Syndrome, which is a neurological disorder that 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, with a decline in mental ability, Parkinson's-like tremors and lack of coordination.
These days, Ray struggles to form complete thoughts, and each day is a battle. He has a hard time writing his own name, and often times, struggles to recognize life long friends.
Early in his boxing career, Ray endured a second impact injury. This is when an individual absorbs a concussion on top of a previous concussion that has not yet healed. His durability was his own worst enemy during his boxing career. He had never been knocked out or knocked down which gave him a false sense of infallibility. The cumulative effects of several concussions left his fast hands unreliable and his sharp reflexes dulled.
After Ray's retirement from boxing, throughout the early 1980's, headaches became common place and denial ensued. After a 14 year career at Eastman Kodak, Ray's once impeccable work ethic progressively began slipping. He was forgetting how to perform regular duties at his job, began developing hand tremors and was constantly dazing out.
After much prodding from family, Ray finally met with medical specialists regarding his mental and physical decline. He was eventually diagnosed with Dementia Pugilistica, a form of second impact injury that lingered from his boxing days.
If left untreated, recurring head trauma can lead to loss of balance, which can result in unwarranted falls and injuries. These post injury traumas can affect areas of the brain, resulting in lack of comprehension, forgetfulness, repeated sentences during during speech, confusion, insomnia and inappropriate behaviors.
The toughest part of Ray's situation is that he now knows that the world he lives in every day was mostly avoidable. His mission now is to educate athletes in order to prevent them from following in his footsteps and unknowingly finding his world.
It is the intention of this site to help spread the word regarding the destructive nature of second impact injuries and continue in the fight to prevent adolescent and student athletes from suffering repeat head trauma in contact sports.
No athlete is immune to these head injuries. Wrestling, lacrosse, boxing, football, soccer, softball and baseball are just a few in a long list of sports where athletes are very susceptible to head injuries. With the invincible attitude of athletes today and the peer pressure to perform at a high level, responsibility now shifts to the shoulders of coaches and caregivers to recognize the symptoms of these head injuries in order to help protect the athletes 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 most people will offer a warm handshake and best wishes, it's the few that don't understand the devastating affects of second impact injuries that make living with these permanent injuries much more trying.
This is a progressive disorder; there are good days and bad days, and days where the medication might work better than others. There are days where there may 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 which is also welcomed with paranoia. The paranoia is due to the fact that you're aware of your condition, yet you're unable to completely control things. Bad days are exactly that, bad days. The affected individual cannot function normally and may not be aware of their surroundings.
Patience and helping the sufferer maintain their level of respect can be the most important treatment of late stage, second impact injuries and their lasting effects.