Wednesday Block 1

Wednesday Block 1

News now.

There are, as many as 30,000 people suffering from als in the united states.

May is national als awareness month, and here to share more about the disease and wonderful cause is kelly vanderbilt, director for the als association.

And ron, a retired chief master sergeant from the universe air force.

Thank you so much for joining us.

>> thank you for having us.

>> and sir, thank you so much for your service.

>> thank you.

>> i would like to direct my first question to you, cali.

If can give us the overall picture, the sticky that i'm familiar with.

30,000 individuals in the country right now have been diagnosed with als and what is it?

>> it's a progressive motor number ondisease, and it affects the motor neurons in the brain and spin chord, ultimately leaving the patient paralyzed.

And unable to feed themselves, walk, and they're reliant on caregivers, and it's a tough disease to get through.

The diagnoses, the lifespan is about two to five years, so it's a really devastating disease, and we have our work cut out for us.

>> what is the average age that someone is diagnosed?

>> honestly, it could be any age.

We have patients in their 20s and into their 80s and 90s.

So it affects all people, all colors, men and women.

And it really sees no boundaries.

>> chief, when were you diagnosed with als?

>> i was diagnosed back in june of 2017.

The diagnoses part is very difficult, because what they told me, it's called a ruleout disease.

They try to determine what you don't have and once they get through the end of the list, they go, oh, you probably have als.

>> what were some of the signs that led you to doctors in the first place?

>>> my inability to walk correctly.

I actually fell in a doctor's office and ended up the next day with an appointment with a neurologist that started the problems, but my feet were drooping, so when i would pick up my feet, they would just kind of hang down, and now they hang down much worse.

But that's really where it started for me, in the legs, and it's slowly working its way up from my feet to my hips.

>> are you able to walk now?

>> i am able to walk now.

I can walk short distances with a cane.

Any longer distance, i use a walker or a shopping cart if i'm going to the grocery store.

They make great walkers, and i have a mobility scooter that i use if we're going to to go visit magnolia gardens or something like that.

>> i see, so for long distances, it's pretty challenging for you.

I know for quite some time, bringing awareness to als, calli, everybody was doing the ice bucket challenge and things like that, and would you say that's what kind of brought this disease to the forefront, where people were becoming much more educated on what this was?

Have we seen an dykes because of this?

>> -- diagnoses because of this.

>> i don't know if there was an increase in diagnoses.

But the ice bucket, it went to funding research.

So right now, there's no known cure or treatments to stop the progression of the disease, but however, that money raised from the ice bucket challenge identified five new gene markers that we're studying to see if we can see what starts the disease, so definitely an awareness was brought on my that campaign.

>> are we still engaging in these ice bucket challenges?

Is this something that people can individually do on their own and pay it forward and have the next person do it and raise money that way?

>> absolutely.

Anything that we can do to raise funds and research for patient care, we're all about.

It kind of saw its breath.

>> when we come back, i want to talk about the more local efforts that have been made to raise awareness for als.

And i have a few questions for you, chief as well, so stick with us and we'll be right back.

>> welcome back.

We have been chatting with cali vanderbilt, the director of the als chapter.

And ron, patient and master sergeantin' saturday for the u.s. air force.

And chief, when you were diagnosed in 2017, did it come as a complete shock to be diagnosed with als?

>> the process to get diagnosed, it didn't come to a complete shock, because the process takes when a year to get diagnosed if it's in a patient that's moving slow like mine is moving slow.

So it takes a very long time.

And that's probably the most frustrating part.

Trying to find out what do i really have?

>> so we know that there's no cure, so what are you doing to treat the als today?

>> i stay very active.

I have a friend whose mother died of als.

And she recommended after i retired to start water aerobics, and so i really got into it, up until the pandemic, i was doing two hours a day, monday through friday.

After the pandemic, i started riding a bike and working on a recumbent trainer.

The pool opened monday again.

I was in the pool when it opened, and i've gone back every day.

It's a little different.

Because we have no aerobics classes now, at least not for the foreseeable future.

So you have to do your own training in the water, but i believe water is magic, and it keeps the muscle, and the muscle tone more alive and active.

After i've been in the water, than i do any other time.

And the group that i swim with, we're a very close-knit group.

We text constantly.

We do -- i run a daily trivia question with them.

So we try to keep our mind active.

And we try to stay social, and i think that's great.

>> it sounds like it's a century strong community, cali, and you're going to be having a walk to raise money, and maybe can you tell us about this and what your goal is.

>> absolutely, so the in-the perfect world, pre covid would be november 14th.

And because our patient's health and safety is our top priority.

There's a huge possibility that we're going to be going virtual and that will be a series of many walks that folks are going to do in their neighborhoods, and we'll do that statewide on the 31st, and we want to keep all of our patients safe and healthy.

So our goal for the statewide walk is $200,000 and that's to keep programs. we have a durable medical equipment loan program, where we give patients power wheelchairs, and lifts and everything that we need to do our daily functions and daily lives, and we have support groups for patients across the state.

And so all of that money raised for that walk will go to continuing the programs. >> that's wonderful, and for anyone who wants more information on this, where shall we direct them?

>> asla.org.

>> you're on social media?

>> als chapter on facebook and instagram, linked in, and twitter.

>> you're everywhere, and that's fantastic, cali.

I want to thank you so much, and chief, thank you again for your service.

>>