What is ALS disease?
You may remember the ice bucket challenge, but do you remember what we raised money for? May is ALS awareness month.
What is ALS?
Amyotrophic Lateral Sclerosis (ALS) commonly known as Lou Gehrig’s disease, is a neurodegenerative disease that progressively breaks down the body’s muscles. There is currently no known cause of why someone develops ALS disease and it comes on with no warning.
Veterans are twice as likely to develop ALS. Some believe it could be due to chemical exposure, extreme stress, or over-exertion triggers, but because there is no known cause for ALS, the reason is unknown.
Is there a cure?
There is no known cure, but there are some treatments.
The dad of a member of our team developed ALS. She shared that her dad is on an oral and infused treatment, getting infusions every day for two weeks with a rest period of two weeks.
She explained, “Early diagnosis and intervention are important for these treatments to help. It took 6 months before we started seeing some results from the treatments and by then, my dad had lost the use of his legs and one arm entirely, and his breathing began to be heavily affected. He still has use of one arm, can still feed himself, and thankfully has not had issues with his throat where his speech and swallowing are affected. His breathing is very labored and he is on a ventilator about 90% of the day.
Through all of this, we continue on day-to-day keeping him as comfortable as possible and making the most of the time we have. Some days, that means a walk through the neighborhood or watching a baseball game, or dinner ordered in from one of his favorite restaurants. And lots of Wordle!”
ALS is also one of the most expensive diseases a person can have. The ALS Association works to not only help fund research but to also provide information to families and individuals to guide them toward resources.
Our team member explained that the ALS Association was, “incredibly helpful for us in the beginning and pointed my dad towards the Paralyzed Veterans of America and the VA. Simply said, I don’t know how our family would be able to navigate this without the assistance of the VA.” Even with the resources available, support is continually needed for those diagnosed with ALS.
3 things to know for those who want to support someone with ALS
1. ALS does not go into remission.
ALS progressively declines a person’s abilities. When asking how a person is doing, their answer is, honestly, not well and worse than the last time you may have asked. Instead, try asking, “What are you up to these days?” or “Hey- I’ve been thinking about you and your family- are you up for visitors?” There are always good days and bad days, so making sure visits are at a good time for the person is best, especially when the disease is in its late stages.
2. Supporting their caregiver is just as important as supporting someone with ALS.
Finding a way to offer the caregivers a break or assisting them with a task that will help ease their load is a great thing that can be done.
3. Be mindful when inviting someone with ALS to go out.
If they are in a wheelchair or in need of other accommodations, some places are more accessible than others. Also, be flexible if plans change and it is not a good day for them to go out.
If supporting a family in person is not something you’re able to do, please continue to support the organizations that work to find a cure, cause, and treatments for ALS.
The ice bucket challenge may be over, but now you can #WalkToDefeatALS. Find a walk near you to join.
Also, wear one of our ALS Awareness items to show your support with the color red.
This disease is still considered rare and in continuous need of support.