Striking Out ALS

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ALS“Today I Consider Myself the Luckiest Man On The Face Of the Earth,” said Yankee Hall of Famer Lou Gehrig.

He said his speech to a packed Yankee Stadium in 1939 as he announced his retirement from baseball. He wasn’t retiring because of age. He retired because he was diagnosed with a life threatening disease that, at the time, he couldn’t fight and would succumb to it 2 years later. This disease was called Amyotrophic Lateral Sclerosis or in shorter terms ALS. The disease has recently gained public notoriety.

Last year, people poured ice water buckets on their heads in a social phenomenon designed to donate money to cure ALS. Eddie Redmayne won last year’s Academy Award for Best Actor for portraying Dr. Stephen Hawking who was not crippled with his brilliant mind but crippled from ALS. With the public notoriety it has received, it leaves the question what exactly is ALS?

According to als.org, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neutrons reach from the brain to the spinal cord which then reaches to muscles throughout the entire body. When the motor neutrons die, the ability of the brain to function and control muscle movement is gone.

“Symptoms can begin in the muscles that control speech and swallowing or in the hands, arms, legs or feet,” said Nancy Bono, Department Chair of Family Medicine. “Gradual onset, painless, progressive muscle weakness is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches, and/or uncontrollable periods of laughing or crying.”

It is great that people are knowing more about the disease but when until you’ve had a personal connection with the disease then you don’t know what it is really like day in and day out. Alexa Guercia is a junior at Molloy College. I have been friends with Alexa for a few years now and she is one of the nicest people you will ever meet. I knew about her father early on in our friendship but never got into the full details about him until now. Her father’s name is Roland Guercia.

Roland had a great job at Direct Link Worldwide. He was married and had two children. He was also an active person. He got a full ride to play Division II basketball at Kutztown University and use to run every morning from 5am-6am. Then, his life changed forever. It began during his daily running routine. His running speed started to slow down. He used to cook every night family and was struggling to grasp different utensils.

“He had to rely on a cane to walk after a certain point and he was walking very slowly, and he would fall a lot,” Alexa explains. “Soon he would need my mom and me to help him when it came to walking especially going up the stairs because he lost his balance frequently.”

Then, in 2008 at the age of 46, Roland faced the most difficult challenge of his life. Beating ALS. Before diagnosis, he went through a series of test before doctors finally diagnosed him with the terrifying disease.

“ALS is a difficult disease to diagnose,” said Ms. Bono. “There is no one test or procedure to ultimately establish the diagnosis of ALS. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established.”

According to Ms. Bono, the patient will most likely undergo these procedures: Electro diagnostic tests including electromyography (EMG) and nerve conduction velocity (NCV), blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24-hour urine collection for heavy metals, spinal tap, x-rays, including magnetic resonance imaging (MRI), myelogram of cervical spine, muscle and/or nerve biopsy and a thorough neurological examination.

Once he was diagnosed, the Guercia family was shocked and was most of all scared like any other human being would be.

“After my dad was diagnosed, he came home, sat on my bed, and cried wondering how he would be able to tell me since my brother was in 4th grade as he wasn’t able to fully comprehend what was going on,” Alexa explains. “My mom didn’t tell me what my dad had. My best friend at the time and I googled every possible neurological muscular disease until I came across ALS and it seemed to fit all of his symptoms. I went to my mom and showed her what I had found and she began to cry as she told me more about the disease. I realized that my dad was dying and that hit me very hard.”

Alexa wanted to share a story with you that is emotional and almost heartbreaking about her father:

“The summer of 2010 on June 16th, my father and I got into a huge fight over my cell phone, something so stupid, and I was so mad that I told him I hated him. That was the last day that he could talk. Before leaving the house (with his nursing aids) or me leaving, I would always say “I love you” because I never knew when I would not be able to hear him say it again. He was admitted into the hospital later that day where he had pneumonia and was unable to breathe; he had to be put on a ventilator because he was shaving issues breathing on his own. A few days later, right before my 16th birthday, they tried to take the tube out and he said “hello” then he started to crash. His stats plummeted and the doctors were trying to save him but they could not figure out what was wrong. Then one of the most amazing doctors, Dr. Seth realized that with ALS you have a mucus build up in the lungs and since you are unable to clear it out it gets stuck, my dad had a mucus plug stuck in him and it was so close to taking his life, to taking him away from us. Dr. Seth was able to suction the mucus pocket out, but he had to perform an emergency tracheotomy and my dad has had once since that day for 5 years now along with a feeding tube.”

Today, her father uses a computer that Stephen Hawking uses that reads your retina in your eye so you can stare at the letters on the screen to spell out words and it will speak for you. He now has 24 hour nursing care with over 11 nurses. The dedication of the nurses is remarkable as some of them were his nurses from Northwell Health (North Shore-LIJ Health System who joined the home care company just to take care of Roland while also working their jobs at the Medical Intensive Care Unit.

“These nurses have become family to us and I cannot picture my life without them,” Alexa explains.

He is just one example of the different ALS patients around the world in recent history. Others include Stephen Hawking (functioning through a machine); Hall of Fame pitcher Catfish Hunter, Football player Steve Gleason and NBA Hall of Famer George Yardley are just a few more examples. Even though there is no cure to the disease yet, there are other ways to be treated for the disease.

“First, there is medicine, Rilutek, which slows the disease progression by decreasing glutamate levels,” Ms. Bono explains. “In addition there are many ongoing Clinical Trials that use agents that target possible causes of the disease. Furthermore, advances in the aggressive treatment of respiratory complications of ALS with noninvasive ventilation and respiratory management as well as aggressive nutritional intervention have provided significant improvements in the morbidity and mortality. Finally, there are symptom specific treatments and a multidisciplinary approach utilizing occupational and physical therapists, speech therapists, nutritionists, and nurse specialists that have led to improved quality of life and maximization of function in the person living with ALS.”

Alexa and her family are not giving up to find a cure. The Guercia family created Roland’s Revolt against ALS, their walk team for the ALS association of Greater New York. For the past four years, the walk takes place in September at Eisenhower Park. They were ranked number 5 out of the top ten fundraising teams on Long Island out of 500 teams and have won awards for Most Spirited, Biggest Long Island Team with over 100+ participants under our team name and most number of teammates to sign up for the walk and donate in one day. They have made over $75,000 since they have done the walk.

“It’s not the disease that has a person, but the person that has the disease,” Alexa explains. “At the ALS walk you will meet numerous patients, YES the patients come to the walk, and you get to talk to everyone and hear their story, the best education is right from the horse’s mouth as everyone says.”

“I remember one patient was just diagnosed and saw my dad in the condition that he was in and went up to him and asked him questions and had a full on conversation with him. The only way to find out more is to ask, do research, read about it, the more awareness raised the better in order to find a cure and fight this horrific disease. With the help of the Ice Bucket

Challenge, the association was able to donate so much to research that they were able to isolate a protein in the body that mutates and that is when the disease is made, during that mutation.”

After reading Alexa and her family’s story, I had to step away from my computer because it was so emotional and powerful that I couldn’t think of what to write for a few minutes. I thought in that moment if the tables were reversed and my father was put in that position. I couldn’t comprehend with that notion. Alexa and her family are doing everything in their power to find a cure for Roland and I encourage everybody to join them and other families that need to find the cure. Thank you Alexa for telling your story as it has put my life in a new perspective. I will donate for your family and others that are trying to find the cure for ALS.

Roland’s Revolt against ALS slogan: WALK FOR THOSE WHO CANNOT. BE THE MUSCLES THAT THEY LACK. TOGETHER WE CAN STRIKE OUT ALS! For more information on ALS and how to donate, log onto als.org.

Matt 3_ Alexa GuerciaMatt 4_ Alexa GuerciaMatt 5_ Alexa Guercia

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