Volunteers are an invaluable part of the ALS Association team. Whether it’s providing patient support, lending a hand at events, or helping out in the office, their work and dedication is deeply appreciated. Each volunteer has their own reason for getting involved that is unique to them. In an effort to share their stories, here are insights from some of our volunteers.
Pseudobulbar affect, also known as PBA, is a condition that causes outbursts of sudden, uncontrolled laughter or crying that don’t match how a person feels or that is out of place in a given situation. Outbursts of laughter or crying can range in duration and severity and can occur up to several times a day. Other symptoms of PBA include inability to control laughing or crying, excessive laughing or crying when something is only mildly funny or sad and intrusion of thoughts that cause excessive laughing or crying.
PBA develops when damage is present in the area of the brain responsible for controlling what is considered to be normal expression of emotion. The damage can affect brain signaling system which causes involuntary crying or laughing. Damage occurs when there is a neurological condition or brain injury, making the condition common among people with ALS. For those with ALS and PBA, bouts of crying are more common than laughter. People with ALS can also have frontotemporal dementia (FTD), which is another condition common with diseases like ALS that cause neurological damage.
A community partner event is a fundraising activity that is organized and managed by a family, group or individual who is acting independent of The ALS Association St. Louis Regional Chapter. This August, five community partner events took place across eastern Missouri and central and southern Illinois, ranging from a tractor pull, an awareness walk before a baseball game, and two different golf tournaments. There was even an ALS Ice Bucket Challenge event earlier this month, four years after the original Ice Bucket Challenge swept social media and national headlines. This August, and every August until we find a cure, reminds us that great things happen when we come together. With all of the extra events throughout the region it was even more exceptional.
Each event has a huge impact on the community and helps people with ALS and their families in several ways. Here are five reasons community partner events are a great way to get involved in the fight against ALS.
Even though ALS is a disease that has its own health implications, people with ALS are not immune from other injuries or medical issues. Individuals with ALS can still get sick or hurt themselves in ways unrelated to the disease. Or, people with ALS might have complications directly related to the disease that warrants a visit to the hospital. When an individual with ALS goes to the hospital or the emergency room, they face additional obstacles with hospital staff who may not fully understand how ALS affects a person’s breathing, speech and movement. Extra measures should be taken to ensure people with ALS are cared for in the right way. Here are some tips on what to look out for and how to prevent misunderstanding in the hospital or emergency room.
LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause. It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.
What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure. The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.
The National ALS Registry is used to collect, manage and analyze data about people with ALS. The more people signed into the Registry, the more information researchers have access to in their work toward a cure, treatment, and prevention. When people with ALS include themselves in the National ALS Registry, they’re including themselves in the national effort to end ALS.
Because the Registry is its own unique research project and requires people with ALS to join the Registry directly, here are five things people with ALS should know before enrolling.