One sunny, Florida afternoon in 2010, Jeff was jogging with his buddy Stormy and "tripped" and fell. Jeff got up, brushed himself off and continued his workout.
In August, Jeff moved to Illinois to be close to family. As he walked into work, he slipped on ice and had another fall. The doctors in Illinois were convinced he had a pinched nerve and ordered physical therapy.
A few months later, he noticed that his left foot dragging as he tried to walk. The doctors diagnosed this as drop foot, and suggested Jeff get a cane.
The drop foot caused Jeff to have random falls and at that point, Jeff felt something in his body was not right.
Jeff made an appointment to see a neurologist at Loyola Hospital in Chicago, IL. The team there completed a series of blood work and completed EMG testing. Have you heard of EMG testing?
Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons).Motor neurons transmit electrical signals that cause muscles to contract. An EMG translates these signals into graphs, sounds or numerical values that a specialist interprets.An EMG uses tiny devices called electrodes to transmit or detect electrical signals.
During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle. A nerve conduction study, another part of an EMG, uses electrodes taped to the skin (surface electrodes) to measure the speed and strength of signals traveling between two or more points. EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission. www.mayoclinic.org
After this series of testing, the neurologist at Loyola referred Jeff to the Mayo Clinic in Minnesota. Jeff often says that he thinks the doctor at Loyola knew the tests revealed an ALS diagnosis, but that he didn't have the heart to tell him.
Jeff and our Mom made the trip to the Mayo Clinic. They stayed for four days, where Jeff went through rigorous and painful testing for 6-8 hours each day. On the final day, the neurologist met with Jeff and our Mom and with pain in his eyes, gave Jeff the diagnosis of ALS. What the team of doctors don't tell you is that every single day fighting this disease brings a new change....a new challenge.
Imagine going to sleep at night wondering if when you wake up, you will have the use of your legs, your arms, your fingers, or your voice.
At that moment, Jeff's fight officially began.
Amyotrophic lateral sclerosis (ALS) is often referred to as Lou Gehrig’s disease. It is a progressive, degenerative disease affecting motor neurons. Motor neurons are specialized nerve cells that carry impulses from the brain to the muscles by way of the
brain-stem and the spinal cord. The muscles then move in response to these impulses. In ALS, motor neurons gradually cease functioning and die. As this happens, the muscle tissues waste away because no movement is being stimulated. This results in gradually worsening muscle weakness, atrophy, and often spasticity. Only the motor neurons are affected. Other nerve cells, such as sensory neurons that bring information from sense organs to the brain, remain healthy. http://www.lesturnerals.org/als/
Symptoms of ALS can include twitching and cramping of muscles (called fasciculation), stiffness in muscles (spasticity), increasing loss of motor control in hands and arms and legs, weakness and fatigue, slurred or thick speech and difficulty breathing or swallowing.
In most cases, ALS patients do not typically experience significantly impaired sensory neural functioning, intellectual reasoning, vision or hearing. Eye and bladder muscles, along with sexual function and drive, are not normally affected. www.teamgleason.org
Worldwide, ALS occurs in 1 to 3 people per 100,000. In the vast majority of cases — 90 to 95 percent — doctors don't yet know why ALS occurs. ALS often begins with muscle twitching and weakness in an arm or leg, or with slurring of speech. Eventually, ALS affects your ability to control the muscles needed to move, speak, eat and breathe.
Currently there is only a single therapy approved for treating ALS progression – the drug Rilutek (riluzole) with the accepted, modest benefit estimated to be a three month extension in patient survival. www.teamgleason.org
The summer of 2014 brought hope to the ALS Community. The Ice bucket challenge brought awareness, compassion, hope and funding to this devastating disease. It was amazing to see all of the videos online and on TV of people all over the world taking this challenge and donating to this fight.
Together we CAN and WILL make a difference.