ALS Walks Oct 2017

Sunday, October 8th

Sue Hall speaks with Senior Research nurse Dallas Forshew about the ALS Walks in Silicon Valley and Alameda to help defeat ALS (Lou Gherig's Disease)


Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

Good morning I'm sue hollow and this is today's world you can listen to this act to today's world SF dot com. This and other shows. For the next fifty minutes today we are speaking with that we've got a couple of folks in the studio Dallas for issues she is a registered nurse. In senior research nurse at California Pacific Medical Center specializing in people with ALS. And also joining us in studio is Susan chorus she's a regional director of community outreach. For the payless association golden west chapter so let's welcome Dallas in first. Dallas what exactly is ALS and how did you get involved. In their research specialty finesse. So a illness is a disease of the motor nerves the motor nerves are those nerves. That tell you your muscles. How to move how fast to move how much strength to put in Tennessee raising a cup from the table. Very complex process. But what happens in a alas is that these nerves get damaged. They get hit. And we don't know the entire mechanism of why that happens but we know pieces parts in any case. The nerve is damaged it and deep generates. And so once that damage happens. And the deep generation starts. There's no way to stop it at that point. I got involved in this disease back in the mid eighties. When I was working at University of Michigan and I was the neural muscular nurse there. And a physician I work with from the social worker and I decided that people with hail last needed a lot more than thirty minutes with the position. So we with the seventh center. Certified by the mail us association as a center of excellence. And it just evolved that I've devoted my career to analysts say it's truly anyone who works in this field it's truly meaningful work. And there's no known cure but there are ways to slow it down. There are so there are things that one can do that a patient can do to help slow it down the most important. Is to go to and payless specialty clinic where you have a multi disciplinary. Team. And these centers of excellence are. Designated by the payless association. There are I think 23 year 24. In the United States. And you get superb care you get. Therapists who. Will not only know their own specialties say physical therapy or occupational therapy or speech therapy. But I'm also experts at payless and it's one stop shopping you get. All of these therapists in one visit. The visits long it takes. Two or three hours but at the same time you don't have to be attending to different. Of visits to different therapists. Over many weeks to get the same kind of care and then what are some of the symptoms. So the first symptoms our weakness. So it can be. Weakness that arises from on arm being weakened that might be difficulty holding your hair dryer up or difficulty turning a key. Could be weakness in the legs where your tripping on your toes she got a drop foot or can be difficult to rising from the toilet. With speech it would be slurred speech toward difficulty with articulation. Most of the first symptoms. But it's just the motor nerves. So that means that the sensory nerves are not involved just. The muscles of movement. That are affected by the nerves that go to those muscles so doesn't affect the brain. Well it ten and a neck cognitive. Function. And what we cull executive function executive function. Is. Is being able to put together complex. Stimuli and make good decisions so driving is an executive function. Some people with ale Lance may be up to 40%. Or 50% depending on which article you read. Can have either it's a little. Pitch. Of changes in behavior or changes in the executive function. Or it can be. A very serious dimension does that dementia is is a very small percentage of analysts patience but we have ways to help the family and the patients. Cope with that if you go to a certain facts and. We're talking with Dallas that for shoes she is a registered nurse senior research nurse to California Pacific Medical Center. I treating people with that ALS or Lou Gehrig's disease into the comment. The common name around that. Let's talk a little bit about how many people are diagnosed she said it was a relatively rare how many people are diagnosed prix here and what is their life expectancy after diagnosis. Sure well it's a tough disease at some really tough disease so in a population of a 100000 people. There will be. Two to four people diagnosed per year. And because people don't live very long there are only six to eight people. Living with the disease in net population of 100000 so that's the prevalence. Of the disease. So the incidents actually is very similar to multiple sclerosis. But because people live so much longer with multiple sclerosis. People are more familiar with that the general public is more familiar with it. And you list use. Rainier in the prevalence in the United States we might have at any given time. 25000 to 30000 people living with this disease but the timeframe is devastating. It's three to five years on average is that who is the lifespan of people. Once they get symptoms not from the time of diagnosis of him and it can take. 1012. Months or more to get diagnosed. So we really hamper work cut out for us when someone comes to our clinic and we partner with the payless association in the community. To. Really bring community resources and our clinical resources together. And then of course there's Greece research and it's going on yeah that's that's my big thing is clinical research and drug trial. And that takes it takes money in funding and folks have probably heard of the ice bucket challenge that really brought hail last to the forefront. Was a year or so ago. Let's talk a little bit about that how that change funding. For this disease. What Bayless association. Got over a 120. Million dollars through that initiative. And that's quite significant. And reducing them money theory wisely. I think from my perspective the putting a little bit of money into the clinics and helping with. Clinical care patients and helping with the salaries of some of the therapists were we don't get. Any kind of reimbursement from insurance companies forties visits from certain therapist. But for to a great extent they're there fumbling this money into big national and international projects. To really dig down and find. What is it happens in a list that initiates. The disease and then propagate the disease it is. Makes it disease continued to move forward if we can be if we can get the answers to those questions. Then we can really kick his exes disease in the body can. And then as we need to do in the but I like that and so the ice challenge did I bring a lot of awareness to this disease but it's only one it was only one sort of campaign. That lasted a while I'll be getting got celebrities and a lot of people involved in it to sort of started organically and blew up to this huge thing. Kent I understand even the hail us fundraising association trader recreated. But it didn't quite have the same organic feel so. Fund raising as always is key let's bring. And as Susan Cloris she's said the director community outreach. First of all a welcome. Thank you sit and daddy payless association golden west chapter let's talk a little bit about that what is the role of the chapter in and that what what area does it in company. Well actually our mission is to discover treatments and cure for Lance ran to serve and advocates for those patients who are affected by payless and their families. So and that that would hear what is your region and if you Olympia. American west. Mountain west I have three regions and I work from ham. And sentiment can which is in the Sierras. And you've got fundraising events coming up. Do you think yes I have two of them actually coming up in need opt to which we do com are blocked to government so good and Silicon Valley is happening on December 8 which is sending an idiot stadium in San Jose which is the home territory wreck aspect of it I think did you see December ya didn't just directly. It. I'm sorry. It is Sunday great and and and we do have a second one which is east they want which is happening Akram beating Alan meet this Saturday. And that's October 21 wafers that we can get lots of folks involved what is your website and tell us about these blocks and people have to be really good shape. He's. Just like anyone that you attend and it is as small three. Point one mile block and the Silicon Valley want which is happening on October 8 is the earthquake stating and so there is a very small block around the seat. Okay and we have a hot right Carson that is happening in the should be. And Andy Lott for east which is happening cram beach on October 21 it is that Saturday we have the final first legion. Galactic empire which is first hours actor enhances the tour is they can't force be with us that they actually in the lock on our. Scenic paths around him in the view of the Sampras this day and what is the website for people more information and it. Trying to absolutely you can go to a list a golden west it's not. And to eat ants and you confine. OK so the top teams in donations let's talk about that and what is there a minimum amount that he'd like that people rays are done in every for everyone to raise as much as possible but there is no minimum various net charge to register we always encourage everyone to come together as a family as a community to be locks. And some other top teams do raise as high as 25000 Hanson who committed for a hundred. 400 dollars you did get to use and even teacher switches very. Really nicely to congratulate yourself for me. And it is this whole day events via this race very small amount of time we do have are the Silicon Valley apple V. And the clock itself was at 1 o'clock and and we are asking people to plan and check in tenth in the morning. We have some entertainment having me. Dribble contest soccer dribble contest for families and and Andy east start. Asking people to 98 it. And once again this is Susan cars she is and director of community outreach that's the interesting job for a Ellis days when it was how did you get involved. I involved in non profits most of my hand being a part of the illness association has and not only talent but it Mary inspiring. Part of my life. I did not know it was veto such a far reaching devastating disease of course I've heard of it but once your diagnosed I had no idea lifespan list. So short and said treatments are limited at this point so it sounds like we need to do. More absolutely needed it Mori to get funds to fight this. So these are two really special ways to do it and I get folks up there I wanna hear the website one more time it's eighty M I'll ask a golden west dot or. And folks can either be an individual and how they can join a team get your coworkers than good and creative fund raising ideas absolutely. Encourage teamwork. We do have some teams that are up to fifty people only have sent. As little as an act here and any amounts we welcome and that what are some of the key issues facing the LS community and specifically the golden west chapter. Well most of the issues at the funding only to human to fund raising dollars they're so we can't continue to research in the efficacy in home care. Which is a big deal which is of and we were just talking that with fed Dallas where she VS senior research nurse about. How many therapists and how many people do get involved. Once you are diagnosed up to nine different. People and in therapy and specialists. Just to keep this going absolutely there's a lot of people involved and are doing the same thing to. Our vision is to create a world without. Let's talk about some of the the family back up and then print for provisions for this support group for the families. Yep you have that the outreach for them as well absolutely the time we have our care managers to to the family visits. And they are also part of our advocates seek to use. And bringing awareness and and bring people to box excellent so once again. And I if people don't have a personal connection to this disease can they still get involved. Absolutely we welcome everyone to skirt or a singled in west title in make intonation. To the event itself which is event you'd like or even to go to the ride and ride. And we welcome any Indian security analyst ten dollars in ounces 5000 Yeltsin has sponsorship opportunities available for businesses. So you just mentioned a couple of events do you have any signature on go lean throughout the year. Barry and these are. We have a lot of opportunities to confine this am it's calendar of events on our website also at the intimacy. Golden west. And it was electric maybe this is a question for Dallas every ninety minutes someone is dying. Notes. Right so. As I said before we have a bow out. Two to four patients per 100000. Diagnosed in every year. And he turnovers in and that is pretty quick with a life span of three to five years ago is one person passes away from this disease. Another person is being diagnosed then. We couldn't do the work that we do in our clinic. If we didn't have the community support that the analysts association offers and the home visits that they. Alford to our patients. And their our eyes in years in the community we just think they do fantastic. Where. Great partner for what we do in the clinic. Excellent well thank you both unfortunately we're out of time Dallas for you with that California Pacific medical senator. And as Susan crow's car is excuse me with the payless association golden west community outreach at thank you for all that you do we look forward to the walks in the website one more time. And last nearly SA golden west dot org are right thank you my name is to haul and this is today's world if you like to hear. This show again or you show idea maybe you run a nonprofit. We've got to fundraiser to benefit coming up please reach out to me it suit and pale white tee dot com. And again the show will Latin live on at today's world SF dot com we'll see you next weekend.