About 5,000 people are diagnosed annually with ALS, or Lou Gehrig’s disease. “What I really want patients to know when they are diagnosed,” said ALS Association – Nevada Chapter Executive Director April Mastroluca, “is that they’re not alone. ALS Nevada has support groups and resources to help families and networks of doctors and specialists patients can tap into.”
ALS stands for amyotrophic lateral sclerosis and weakens muscles, including heart, lung and digestive muscle systems, as the nervous system breaks down. The cause is unknown. Medication and therapy can slow ALS, but there’s no cure.
Their mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The Nevada Chapter raises funds to support care services, caregiver programs, and education. All funds raised are used solely for people with ALS and their caregivers living in Nevada.
“In light of COVID-19 and all the restrictions and safety concerns, we have had to get creative with our fundraising efforts,” said Mastroluca.
“On the 20th anniversary of the Walk to Defeat ALS, we decided to run this as a virtual event. We’ll miss the camaraderie that so many volunteers and families and patients enjoy from these events, but we are still raising awareness and money to help fund important research to envision a world without ALS.”
ALS Nevada has opted to keep the date for their Reno/Sparks Walk, but supporters are encouraged to walk in their own neighborhoods and keep fundraising. Funds raised during the quarantine are even more important now because the Chapter is providing more support to the families and patients while they are quarantined.
Just before Governor Sisolak’s Stay-at-Home order, ALSA Nevada’s Care Services Coordinator Taryn Joyner and Mastroluca were on the road to Nevada’s rural communities to talk with caregivers about recognizing ALS’s early symptoms.
“The point of these tours is to help caregivers who might not see very many cases in their careers recognize ALS more quickly,” said Joyner. “Most of the patients we work with report that it has taken at least a year and sometimes much longer to get the proper diagnosis.”
ALS often come on between ages 55-75 and affects slightly more men than women. ALS breaks down nerves and their connections and can often look like respiratory or digestive issues because it could start affecting those nerves first. These early symptoms can be explained away and ignored for months.
When someone learns they have ALS, the news can be devastating and make families panic about how to care for it. ALS Nevada has support groups, counselors for mental health as well as financial and care coordinators to help people manage their care.
Mastroluca offers advice for those newly diagnosed. “Sign the ALS Registry. It is a central tool collecting information from patients that goes to help people who are diagnosed, and can help point toward factors that may have been influential in developing ALS in the first place.”
Once ALS starts, it progresses and takes away the ability to walk, dress, write, speak, swallow, and breathe. How fast and in what order this occurs is very different from person to person. While the average survival time is three years, about 20% live five years, 10% will survive 10 years and 5% will live 20 years or longer.
Individuals with ALS usually have difficulty swallowing and chewing food, which makes it hard to eat normally and increases the risk of choking. They also burn calories at a faster rate than most people without ALS. Due to these factors, people with ALS tend to lose weight rapidly and can become malnourished.
It’s not clear why yet, but military veterans are approximately twice as likely to develop ALS as civilians. Possible risk factors for veterans include exposure to lead, pesticides, and other environmental toxins. ALS Nevada has special programs and resources just for military veterans. Mining is another occupation that is associated with a disproportionate number of diagnoses.
For specific information about symptoms you or a family member may be experiencing, or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly. Or reach out to ALS Nevada Chapter for guidance to specialists and their network to support caregivers.
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