ALS Napa Ride Sept 23rd

Thursday, September 7th

00:14:44

Sue Hall speaks with Senior Research Nurse Dallas Forshew from Calif. Pacific Med. Center and Cliff Whitlock, Ride Director of the upcoming ALS Association Golden West Chapter Napa Ride Sept 23rd. How you can donate and register

http://web.alsa.org/site/TR?fr_id=12420&pg=entry

 

 

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

Good morning I'm sue hall and welcome to today's rose you can listen to this show and other shows at today's world SF dot com where this one will Lilly. And for the next fifteen minutes we have but quite a few folks here in the studio Dallas for she who she is senior research nurse. At that California Pacific Medical Center and quit at cliff whitlock excuse me right director for the upcoming. ALS association golden west chapter entity our topic is. Eight LS. And so let's start with Dallas. At what is ALS and to tell us a little bit about. Your history in getting involved. Sure thinks so much for having us here to date this means an awful lot for the awareness. Of deal less with in the community and that helps every single patient that we have so. Payless. Is a minor traffic lateral sclerosis. And specifically what it is is a disease of the nerves. That go from the brain to the muscle and tell the muscle what to do. So for instance if I wanna pick up a cup. I get it up from my brain the thought is transferred to V a promoter nerves in the brain and the spinal cord. And then transferred to the lower motor nerves go out from the spinal cord to the muscle and then the muscle gets the message an action happens. In a L I asked you start losing those nerves one by one. The nerve is damaged. It degenerates. And it dies and there's nothing that we can do to stop the process. Has the muscle gets less message. I'm less potent message from the nerve. And muscle then becomes weak. And win all of those. Motor nerves aren't going on then of course the muscle will not work and ball. So this is aid neuro degenerative. Nerve Brody Jenner tooth disease. Of the motor nerves. And it's really. A rare disease but at the same time. It's a devastating disease. Our patients. Who contract this disease that takes ten to twelve months to get diagnosed. And then. On and a priest the only group for three to five years. It's it's devastating for the patient and for the family. I can imagine and it's also known as Lou Gehrig's disease it is because loopy earrings when he got this disease in the 1930s as the very famous. Baseball player for the New York Yankees who could say hey my trophy lateral sclerosis who. So people said oh that disease that loop theory got Lou Gehrig's disease. So with that pilot a younger generation now coming up that don't remember mr. gearing. So he'll lists is coming to the four. And what are some of the early symptoms like you said muscle degeneration is it in that have does that happen a specific parts of the body different parts of the body it can start with chewing swallowing speech or an arm or leg or it can even start with. The respiratory muscles. Diet Gramm being that key muscle for respiratory function or breathing. Can start in any of those places. Where it's the first symptom that people will have is not being able to use that muscle maybe. Difficult to turn key. Difficulty rising from the chair if it started in the legs. Maybe slurring of speech if it's starting in the speech area it starts full clean and one place. And then you move to the next location there's no blocking it once it's started known there's enough there are things that can be done to slow it down. We know through research and clinical research and it. There are certain things that patient to in particular going to a multi disciplinary teen clinic. Where the team members. Specialist not only in their field safe physical therapy or respiratory therapy but they also specialize in any list. So the most important someone can do most important thing that someone can do. What themselves to live longer and have a higher quality of life. He is go to a teen clinic that specializes. And we have to such clinics. In San Francisco. UCSF and CP MC that are certified. As centers of excellence through the analysts association. Once again we're speaking with Dallas for shoe she is senior research nurse add to California Pacific. Medical senators specializing in that folks with a L asked. It's you said rare but it seems we hear a lot about it. Well. We hear a lot of about it recently because of ice bucket channel that I happened a couple of years ago yeah. So that started from the grass roots. Some people who had hail lists and I'm. Maybe you know more of the details of how that started. We're talking with that cliff whitlock who is EA LS and association's golden west chapter right director for a big event that's coming up here. So going to clip you know the origin of the ice but challenged. I know a little bit yeah I started with dale association me about a year and have to guess at this happened right before I came on board that I remember seeing Oliver YouTube and a spec. I started by a Stanley on the East Coast. A challenging their friends that dump buckets of ice water over their heads. And it's challenging their friends to continue that and just kind of grew from there. I went viral from that I barrels or celebrities are doing it and go yeah and a matter of weeks celebrities that it and then. The fund started rolling in Tuesday LS association an analyst organizations and I imagine it changed the entire. The deal a fund raising. From then on yeah I absolutely anything to raise awareness series. Millions and millions of dollars a 112 million dollars went to analysts association from that challenged. But it was a one time thing so it it in advance the the pass on the field right but. There's still a lot more to do. And that's why we do events like locks and the Napa Valley ride we continue to which brings us right back to let you in what's coming up here in Napa Valley. So I'm the director for the Napa Valley ride to defeat payless and walk which is happening. In just a couple weeks on Saturday September 23. In young film which is just a little north of Napa city now epic Connie. OK and tell us about folks how they can get involved. What they need to do why do most people ride of got a lot of questions and questions Galilee go to its first thing obviously is go to our website. I go to Napa AM last ride dot org. I'm we're offering a ten dollar discount for any of your listeners it's radio ten as the discount code pink with a capital far. And there's many reasons involved if you like cycling. If you liked beer and wine and barbecue. We have all those things for you. Short distance is long distances. Tell me about some of the different routes analysts here really gung ho and and do you have like a century or do you have what's the longest route. So our long assert his century yes we are a hundred mile route we have two different 62 mile options are challenging round and then. Now what we call it option banana 62 miles is still pretty unfair light up a that they were Gabby two of them. And then it between me and a twelve might as well as well as a walk firfer folks for families really OK as people with analysts typically. Keep to stay in the ride itself that are taken been built and parts in the. We have a wonderful I'm going to post of the linked to the to the public service video we have a wonderful video called on the reasons why. And in there if so far her. You know diverse why people write for a loved one for a family member. Though yeah yeah yeah not even you don't even have to know someone you can just go and use your expertise in in bicycling. RY yeah we worked with a lot of our volunteers and dispense on that video and and ask them why they participate in Arabic and are bad why do you ride. And it came down to you many reasons fun and challenging because. You know some of the violence there here or their inspiration let's only if you come to learn and you gonna be inspired by. People fail us and their families and the determination that they have to find cures and treatments. For this disease. And at this talk about some of the fundraising I saw on India web site some of those who have really stepped up and done some great fundraising. As much as 6000 dollars. Yeah yeah you we re asking caller I nurseries Lisa 150 dollars which is relatively easy compared to many many other rides that happen in the Bay Area. But we have some folks who are very dedicated and we. I have incentives to eat dinner and enters the caring parent cycling shorts. But Darren Darren handful of folks that raised tens of thousands of dollars because. You know they lost someone or they themselves have mail us. So we're speaking with cliff whitlock who's the right director of the upcoming it Bayless right out of you not know on the 23 which is soon. And also joining us is Dallas or shoot the senior research nurse at California Pacific Medical Center with some background on ALS. I was reading and about military vets. And let's talk a little bit this goes back to Dallas let's talk a little bit about that and why are they it seemingly more susceptible. We don't. Know exactly why vets are more susceptible will be known that if you serve in the first gulf war. That you're six times more likely to get feel less than someone in the general population. And if you if you served in the military at all you have twice the likelihood. Of getting mail laughs so the reasons are unknown poem maybe it has something to do with toxins. There were a lot of toxic fires during the first gulf war we we really don't know there's some drilling. Brilliant minds in the Department of Defense. And at the veterans administer administration working on this question. But the question is still not answer. And as of today and 2017. There is no known cure for a mile there is not. However we do have to medications at this time. Really all was FDA approved in 1994. And it slows down the disease by about 10%. Or more depending on which study you look at. And the newest robbed a dollar phone or erratic cop on. Was just approved by the FDA. On May fifth. Of this year so it just a couple of months ago and that's beginning to roll out to the patients. And that according to the study that was used for FDA approval. Along with brilliance all will slow the progression of the disease by 33%. Which we think it's. Theories significant yup more significant than say the 10% chances at it so the costs around this and again this is probably where fundraising comes in and I also read where. Each person has diagnosed sees a minimum play nine specialists is that correct number. Probably yeah probably it it takes ten to twelve months to get diagnosed after you first have symptoms. And that's really. Too long. Shouldn't take that long but it's better than it was ten years ago when it was averaging twelve to eighteen months and sometimes longer. So there's more public awareness from the patients to seek out the right path but also from health care professionals. So there's more understanding of what a illness is. And more. More physicians and neurologists are better trained in a less of this is really helped. But you want to get a quick diagnosis so you can get on these very helpful medicines. Before. You lost too many nerves what is it takes so long as to the various tests in the waiting for results in things like that well. It comes on in in in an insidious fashion comes on slowly. And and then it's very every year. So it's a disease that hasn't a symmetric on Cecil one link the other one arm or the other. And it's weakness without any sensory involvement so numb no numbness tingling that kind of thing. What they truly do it's is the physicians will rule out everything else and then he'll settle on hale house. So there's a lot of time with ruling out another thinks about it so let's. It back to fundraising William a couple of minutes left that says talk with cliff whitlock is the right director coming up. And so if you don't ride but she still wanna donates there's a website to do so yes that's nap eight LS right dot org. And there's also barbecue and other things to do that day in neon Phil so tell folks what went out to have going on around the day. Yes so when you come back from the Ryder the walker he's one attend and support some friends that you know that might be participating date we have applied and we have incredibly delicious barbecue. Drinks we are so this year it's going to be great kid friendly to bring the Stanley. We included you've probably seen him around a farm and we mark our farmers markets with DS and that he likes social Messi can Kelly by can make a smoothie laughs my scream. You know. Picnic games that sort of south going to be a lot of fun. So again it's September 23 yacht bill vets home start and finish and what does it start. So that. Varies and depends on what time or what route you're going to be doing so if you do in a hundred miles we're gonna search up that. 545 or 6 in the morning because getting itchy about if you do in the walk that's an 11 o'clock so please go to our website now I LS right to find more. And thank you both for being here and firstly we're out of time Dallas for a shoot the senior research director or pardon me nurse Acton California Pacific Medical Center around. ALS and cliff whitlock ride director coming up and the yacht bill Napa right. With the golden west chapter. This is today's world and I am Soo hall of the website one more time. I napping AL us right dot org thank you good luck with that hand we're gonna be backing another week or so. As if you'd like to give us some advice or some ideas for a new show. As you run a nonprofit or have a benefit refineries are coming up are always open you can get a hold of me its new K a YT dot com. Or visit us at today's world has asked. Dot com will be back next weekend.
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