Thank you for helping us reach our fundraising goal! Together we can make a difference in the lives of those affected by ALS. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatments and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.
MY STORY
In case you missed it, May is ALS Awareness Month. Over the month Linda posted a series of messages to bring awareness to her friends. This was her first post:
This is my story. In 2019 I began noticing my speech was always raspy and sometimes slurred. That is known as Bulbar onset. I had an appointment with an ENT which showed no abnormalities. I also was having difficulty getting up from a seated position. I fell off the curb in December. I wrecked my knee. It was the end of me using stairs. I was in a lot of pain in my right leg which finally despite Covid sent me to my primary care physician All my labs were normal. I went to a orthopedic doctor. I had three spinal injections. But I couldn’t get up stairs or walk without a walker. I went to a neurologist. He ran every test. MRIs spinal tap blood draws X-rays nerve conductivity tests. He told us it wasn’t ALS and to go to the Mayo Clinic. Our primary care physician referred us to Duke for another ENT appointment. This doctor immediately said my issue was neurological and referred me to a Duke neurologist. After one appointment and another nerve test, I was given the diagnosis. I was seen by the Duke ALS clinic within three months. I was put on Baclofen for muscle spasms. Vitamin D3 because I was deficient. Riluzole which is a glutamate inhibitor to give me a couple months more of life. Neudexta which helps inhibit my uncontrolled laughter and crying. Also I was given a bipap machine which I wear every night to assist with my breathing. I have had speech therapy, physical therapy and occupational therapy. My limbs are weak. My speech is slurred and stilted. I cry excessively and laugh excessively so I’m a mess at soppy commercials or a comedy club. The average life expectancy from diagnosis is two to five years. I’ve surpassed year one. Please ask me any questions. Knowledge is power. And continue to keep us in your prayers and thoughts. It helps. I love you
WHY WE NEED YOUR HELP
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
That’s why we’re participating in the Walk to Defeat ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help unlock the mystery of ALS and find the key to treatments a cure. Will you join us?
ABOUT ALS
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!