Omaha Face Off!
Help a fellow Hockey dad and coach as he was recently diagnosed with ALS. Tim has coached with my husband in the Omaha Hockey League and his kids have played hockey with my kids. The Omaha Hockey Club is like family. Let's help him out.
Tim was diagnosed with ALS, often referred to as Lou Gehrig's disease. He's always given to our community and now we give back to the Cacioppo family.
Imagine for a moment that your body was paralyzed but your mind was fully functional and able to sense everything going on around you. While this is a nightmare scenario, it is a looming certainty for my good friend Tim Cacioppo. Tim was recently diagnosed with amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease.
Tim will bravely endure symptoms including weakening and wasting of limb and trunk muscles as well as progressive paralysis of vital functions such as speech, swallowing and ultimately breathing. As these symptoms advance they will not just take a physical toll on Tim, they will place overwhelming medical bills and unimaginable fear on his wife Natalie and their four beautiful children Salvatore, Vincent, Sebastian and Anna.
The life expectancy for someone diagnosed with ALS is two to five years. While diagnosed in 2013, it has been deemed Tim has already been living with detectable symptoms for over two years. Currently the most noticeable of his symptoms is his declining speech ability and though willing himself through, he is experiencing loss of dexterity in his fingers.
Tim is currently using every moment to prepare his young sons for a life without a father as they mature into young men, prepare his young daughter who won’t have her father to walk her down the aisle at her wedding and prepare his wife for a life without her true love. Tim’s dedication to his family and the community is widely known from the hockey and soccer teams he coached, to the boy scouts that he led. Let’s show the same level of support and compassion to Tim and his family.
We have banded together to give Tim and Natalie the ability to focus on family during this difficult time and ensure the Cacioppo Family has our continued support as this disease takes hold of Tim’s life. The Tim Cacioppo ALS Benefit fund has been established at Wells Fargo bank for monetary donations. We are also preparing for a major fundraising dinner and auction April 6th 2014.
For more Informaiton Click Here: Tim Cacioppo Benefit Flyer--Faceoff with ALS
For more Informaiton Click Here: Tim Cacioppo Benefit Flyer--Faceoff with ALS
Go to his facebook page Omaha Face Off with ALS for Tim Cacioppo, and like the page and spread the word.
You can also watch a news story that was done from Chicago on Tim and his family HERE.
If you are curious about ALS, read on:
What is ALS?
| En español |
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
What Types of Nerves Make Your Body Work Properly?
(from Living with ALS, Manual 1: What's It All About?)
The body has many kinds of nerves. There are those involved in the process of thinking, memory, and of detecting sensations (such as hot/cold, sharp/dull), and others for vision, hearing, and other bodily functions. The nerves that are affected when you have ALS are the motor neurons that provide voluntary movements andmuscle power. Examples of voluntary movements are your making the effort to reach for the phone or step off a curb; these actions are controlled by the muscles in the arms and legs.
The heart and the digestive system are also made of muscle but a different kind, and their movements are not under voluntary control. When your heart beats or a meal is digested, it all happens automatically. Therefore, the heart and digestive system are not involved in ALS. Breathing also may seem to be involuntary. Remember, though, while you cannot stop your heart, you can hold your breath - so be aware that ALS may eventually have an impact on breathing.
Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease.
While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
Importantly, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate. No matter what your individual course or situation may be, The ALS Association and your medical team are here to help.
To learn more about the personal stories of people who are living fully, click here. As one man put it, “I’ve made ALS part of my life, not my whole life.”
Comments
Post a Comment