Mary Rebar — ALS

Mary Rebar is a services coordinator for the ALS Association.

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.

To listen to the entire interview with Mary Rebar on Talking Health on News Radio 1240 KQEN, log onto www.541radio.com.

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Reporter

Dan Bain is the health reporter for The News-Review. He previously worked at KPIC and 541 Radio.

(8) comments

alisacameron844

The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. Last year, a family friend told us about Rich Herbs Foundation (RHF) and their successful ALS TREATMENT, we visited their website www. richherbsfoundation. com and ordered their ALS/MND Formula, i am happy to report the treatment effectively treated and reversed his Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, he is able to walk and able to ride his treadmill again, he is pretty active now.

leslye22

Leslye Lelslie
My dad was diagnosed with ALS. He does not have ALS anymore.ALS herbal remedies i purchased online from Dr kudos (Good Health Herbs Home) cured my day ALS .pleases anyone out there with ALS,natural herbal remedy is the real things to use, No more toxic medication that clearly state 'lead to death'. Let real and natural herbal remedy be your medicine. Stay away from vaccines and frankenfood. contact Dr Kudos for your ALS cure (kudosherbalcure@gmail.com) or whatsapp him via +2348067408445

leslye22

Leslye Lelslie
My dad was diagnosed with ALS. He does not have ALS anymore.ALS herbal remedies i purchased online from Dr kudos (Good Health Herbs Home) cured my day ALS .pleases anyone out there with ALS,natural herbal remedy is the real things to use, No more toxic medication that clearly state 'lead to death'. Let real and natural herbal remedy be your medicine. Stay away from vaccines and frankenfood. contact Dr Kudos for your ALS cure (kudosherbalcure@gmail.com) or whatsapp him via +2348067408445

philipaasx

BEST HEALTH

I was diagnosed with ALS in April 2017 and I decided to fight this naturally by better diet, natural herbs, organic food, and eliminating all toxins in my life. I can gladly say my fight is over, after using ALS herbal remedy I purchased from Best Health Herbal Centre, the herbal remedy drastically slowed my progression the first week of usage and reversed my ALS the last week of usage. I used the ALS herbal remedy for only six weeks.

I am a man of faith and I believe that when HOPE is lost ALS wins. Believe you can beat this disease naturally and have faith that nothing is bigger than God.

patriciatselepis

My father had ALS (amyotrophic lateral sclerosis) for 3 years His first symptoms were weakness in his hands and losing his balance which led to stumbling and falling. He never lost the ability to swallow or breathe. His one hand, then his legs, were affected first; then his arms. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of his primary physician, he would have died . There has been little if any progress in finding a cure or reliable treatment. So this year his primary physician suggested we started him on Natural Herbal Gardens ALS Herbal mixture which eased his anxiety a bit,We ordered their ALS herbal treatment after reading alot of positive reviews, i am happy to report this ALS herbal treatment reversed my dad condition. His quality of life has greatly improved and every one of his symptoms including difficulty in walking and slurred speech are gone. Their official web site is ww w. naturalherbalgardens. c om He will be 74 soon and can now go about his daily activities

patriciatselepis

My father had ALS (amyotrophic lateral sclerosis) for 3 years His first symptoms were weakness in his hands and losing his balance which led to stumbling and falling. He never lost the ability to swallow or breathe. His one hand, then his legs, were affected first; then his arms. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of his primary physician, he would have died . There has been little if any progress in finding a cure or reliable treatment. So this year his primary physician suggested we started him on Natural Herbal Gardens ALS Herbal mixture which eased his anxiety a bit,We ordered their ALS herbal treatment after reading alot of positive reviews, i am happy to report this ALS herbal treatment reversed my dad condition. His quality of life has greatly improved and every one of his symptoms including difficulty in walking and slurred speech are gone. Their official web site is ww w. naturalherbalgardens. c om He will be 74 soon and can now go about his daily activities

patriciatselepis

My father had ALS (amyotrophic lateral sclerosis) for 3 years His first symptoms were weakness in his hands and losing his balance which led to stumbling and falling. He never lost the ability to swallow or breathe. His one hand, then his legs, were affected first; then his arms. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of his primary physician, he would have died . There has been little if any progress in finding a cure or reliable treatment. So this year his primary physician suggested we started him on Natural Herbal Gardens ALS Herbal mixture which eased his anxiety a bit,We ordered their ALS herbal treatment after reading alot of positive reviews, i am happy to report this ALS herbal treatment reversed my dad condition. His quality of life has greatly improved and every one of his symptoms including difficulty in walking and slurred speech are gone. Their official web site is ww w. naturalherbalgardens. c om He will be 74 soon and can now go about his daily activities

patriciatselepis

My father had ALS (amyotrophic lateral sclerosis) for 3 years His first symptoms were weakness in his hands and losing his balance which led to stumbling and falling. He never lost the ability to swallow or breathe. His one hand, then his legs, were affected first; then his arms. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of his primary physician, he would have died . There has been little if any progress in finding a cure or reliable treatment. So this year his primary physician suggested we started him on Natural Herbal Gardens ALS Herbal mixture which eased his anxiety a bit,We ordered their ALS herbal treatment after reading alot of positive reviews, i am happy to report this ALS herbal treatment reversed my dad condition. His quality of life has greatly improved and every one of his symptoms including difficulty in walking and slurred speech are gone. Their official web site is ww w. naturalherbalgardens. c om He will be 74 soon and can now go about his daily activities

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