The ALS (Amyotrophic Lateral Sclerosis) association helps families navigate the journey of the neurological disease also known as the Lou Gehrig disease.
Mary Rebar, a services coordinator for the ALS association recently appeared on Talking Health on News Radio 1240 KQEN and was interviewed by host Lisa Platt. She talked about helping patients and their families through the process.
The following is an edited version of that interview.
Lisa: Tell us about ALS?
Mary: Amyotrophic Lateral Sclerosis is a motor neuron disease. It is a life limiting illness, and if someone is diagnosed with ALS they’re usually given three to five years to live, and that’s a crazy shock.
I am the person that a family can call and ask questions about everything: Who is a specialist I should see? Where do I get a power wheelchair? Who’s the best speech language pathologist in Douglas County that I could visit with, etc.? I help the families find a roadmap to be able to navigate this journey.
Lisa: What are some of the symptoms that people need to know about?
Mary: ALS is a rule-out disease because there are different onsets for ALS. If it starts in the mouth region, they’ll slur their words at the end of the day, and people are going to be looking at a possible stroke. If it starts in their hands, their grip goes, so maybe they have carpal tunnel surgery or rotator cuff surgery to see if they can recover. If it starts in the feet, it starts with foot-drop. They’ll be walking along and their foot just drops. You might start with an ankle/foot orthotic. As any of these keep going, there is concern that it’s something else.
Lisa: Have there been some breakthroughs with the disease and treatment?
Mary: Yes, a new drug is on the market called Radicava. It’s a drug that helps stabilize ALS, and plateaus ALS symptoms.
Lisa: Where is this treatment for insurance coverage?
Mary: Currently, Radicava is made in another country and is slated to be made in the U.S. soon — this will drop the price. Currently all of our veterans are receiving Radicava for free.
The wonderful part about the Veterans Administration is that they take 100 percent responsibility for ALS, and veterans are given 100 percent disability to be able to utilize this new drug.
We are not positive why American veterans have as much incidence of ALS as they do, but Department of Defense researchers are working very hard on that, and they’re the first to try out some of these new preventative or intervention drugs that are coming on the market.
Lisa: What is the percentage of males and females having ALS?
Mary: What we’re finding is it’s probably about 55 percent male and 45 percent female. Those statistics have changed over the past 10 years, so we want people to know that it does affect both.
The other thing is that it affects people all throughout the age spectrum. The youngest person I’ve met with ALS was 15, so we need to make sure people understand that we could see the disease at any age.
Lisa: They still don’t know what causes ALS?
Mary: We don’t have the definitive answer on what causes ALS. We have some ideas and we’ve moved forward incredibly because of the Ice Bucket Challenge two summers ago.
I’ve worked with the association for 11 years and when I came on, we were trained on about 4 studies a year. Now I could be trained on 12 studies a month. Due to the Ice Bucket Challenge money, we have 110 active research projects in 10 countries, so we are definitely full force in making a difference with research.
Lisa: ALS, as I understand it, does not impact people the same way; it can be different?
Mary: It can be very different looking, and has different onsets so different pathways to services are needed for people with ALS.
Lisa: Is ALS contagious?
Mary: It is not contagious; you cannot catch it from somebody, and it’s not a virus. It can be genetic; there are 10 percent of people that have ALS that have the hereditary gene. That is called familial ALS.
Lisa: Why is it taking so long to find a cure for ALS?
Mary: I think it’s one of the forgotten diseases. The ALS Association came together about 12 years ago, and has many, many research studies in progress. Dr. Joseph Beckman, with the Linus Pauling Institute at Oregon State University, is one of the major researchers of ALS, and he’s making a difference in Oregon. He is in the process of getting FDA approval, and he is in live trials in Australia right now.
Lisa: What advice can you give ALS patients and for caregivers of an ALS patient?
Mary: First, we want to let you know that you are not alone. There are families here in Douglas County that are on their ALS journey. There is support available, so reach out for help.
We have a great website, and there is a lot of information available online. We offer different areas, and one is advocacy, changing laws like with the VA or Social Security.
We also offer grants to help families for those things that fall through the cracks. We try to provide a chapter grant for $500, twice a year, so a family can get a grant for $1,000 a year towards durable medical equipment, an access van, needing to hire someone to help out in the home or respite care.
There are 30 different areas they can use it in, and specifically one of the things I wanted for a rural area was a backup generator for a breathing device. This grant will help pay for it.
We also offer education support. That means that I can come to the home and talk about ALS, what needs to be done right now and some of the things in the future. I can also help people connect with specialty clinics.
Lisa: Do you still have your closet of useful equipment?
Mary: Yes, we have a closet of durable medical equipment and speech devices available to families with ALS. A physical therapist can tell me what kind of equipment might be needed. We would put that order in and have the equipment delivered for free. We want to make sure we support the whole family.
To contact me, email MaryRebar@alsa-or.org. My phone number is 541-990-1246. We have service providers throughout the state and if yoiu want to participate, our Walk to Defeat ALS is Sunday Sept. 16, at the Peacehealth Annex in Springfield. Registration is at 11 a.m. and the walk is at noon.