Transcript #104: Leaders Engaged on Alzheimer’s Disease

Flyer for Episode #104: Leaders Engaged on Alzheimer's Disease

Flyer for Episode #104: Leaders Engaged on Alzheimer’s Disease


Guest: Ian Kremer          Date: April 18, 2018

       

[Intro music]

 

Debra Ruh:                  Hello everybody. This is Debra Ruh, and you’re watching or listening to Human Potential at work. Today’s guest is somebody I stalked on Twitter because I love his content. And so I started noticing, I started retweeting and reposting his content and then I started begging, “Ian, please, will you be on the program? Will you be on the program?” So, very proud to have Ian Kremer, and hopefully I said that correctly, joining us today and he is an expert and he will probably argue with me on that term expert. But, he is in the autism and dementia field and so he’s doing very interesting work with the organization he’s working with. And I know that as we’re walking that in my family, the dementia and hopefully we’re not going to Alzheimer’s but it’s a very important topic not only to me and my family but to millions of Americans and this is not just an American issue, this is something that is happening globally. So, Ian, welcome to the program.

Ian Kremer:                 Thank you Debra. Glad to be with you. Thanks for the invitation.

Debra:                         Yes. So, Ian, do you mind telling us a little bit about first of all, who you are and then your work?

Ian:                              Sure. Well, so, a short story about me and maybe a longer story about the work that we do together. My name is Ian Kremer, and I’ve been doing Alzheimer’s and dementia policy work at the local state or federal level for a little over 21 years now. Trained as a lawyer and thankful to have never practiced a day in my life. So, not a real lawyer other than by a law degree are mention but incompetent otherwise.

 

                                    My hobby is my work and my family so that’s my whole life. What isn’t work is personal time and over the last 21 years, tremendous number of people who are either living with a form of dementia or are family members or professionals have become like family to me. the nature of this work is you get to know people’s personal stories and you get vested in their well-being and it’s crushing when you see them go down this path and feel like you can’t do enough for them and have a couple of everything you want to do professionally to make sure that the next generation doesn’t face what the current generation is facing.

 

                                    So, the end of my personal story I guess is at the beginning of my professional story in this and that is when I was first hired to do Alzheimer’s and dementia advocacy. The person who hired me said, “Our job is to put ourselves out of a job.” And I never imagined that 21 years later, we wouldn’t be there. That I wouldn’t have moved on to something else that I care passionately about but I’m blessed and fortunate to be able to do this work and do it with the quality of people both at the grassroots and at the professional level with whom I’m surrounded with.

 

                                    And so for the last six years, I’ve been executive director of an organization called Leaders Engaged on Alzheimer’s disease which is a coalition now of over a hundred organizations from the local level through the international level that are all focused in one way or another on trying to address dementia either domestically or internationally. That includes pharmaceutical companies and trade associations and professional societies, patient advocacy groups, research foundations, clinical and research universities. You name it, if they’re interested in making the world a better place for people facing dementia and trying to make sure that in the future, in the near future, fewer people have to face dementia then they are welcome to either be in the lead coalition or work with us as closely as their bandwidth and mission will permit.

Debra:                         And, one thing I’m finding once again as we walk this personally, there’s just a lot of things about it that I didn’t consider. And the numbers, the numbers are chilling. I have read that someone gets diagnosed with Alzheimer’s in the United States every 66 seconds and that is expected to increase in the next few years to every 33 seconds. Of course, those someones are family members, are husbands you know, they are spouses, are parents, are you know, it’s our families. And I know as we walk it in my family a little bit, I’m really surprised to some of the emotions that I’m experiencing and there’s a lot of levels to this. And I… with my husband being diagnosed with early onset dementia whatever that means which by the way the doctors we’re dealing with don’t really know what it means or what to expect and can’t really give us any options. They put him on some of the dementia medication that’s out there and it’s been out there for a while and I know our consumer reports will not even give them a positive rating just because so many people are not having success with these drugs. Maybe some are but it made my husband worse and so we took him off and so my husband is actually doing better without it.

 

                                    And also I would say Ian that as I… as a strategist, as I try to fix my husband which I’ve been poking at, the poor man, you know our entire time together as a typical woman. But, the only thing I know to do is to be supportive, to try to understand what’s going on. I’m feeding him very well, I’m giving him lots of vitamins, I’m taking Alzheimer’s workshops, I’m reading into nutrition but I’m not alone in this. There’s so many people, so many families impacted and so, of course it’s very real to me and that’s why I think the work that you’re doing and the lead coalition is doing is really important. I think that also maybe sometimes we assume that one size fits all when we’re talking about this topic and that is just for my experience is not true.

Ian:                              Right. So you’ve hit on a lot of central issues that…

Debra:                         Sorry.

Ian:                              So many families go with… no, it’s terrific that you’re raising all these things and it really speaks to not only your personal experience but more broader understanding of what our society is facing. And so I’ll just try to quickly address a handful of those items and if I missed any that are important; feel free to look back and we’ll cover those too.

 

                                    First thing I should say is that you’re exactly right that there is no proven definitive way to either prevent or slow the progression of the disease never mind out right cure it. But it’s also important to understand we’re not dealing with one disease; we’re literally dealing with the hundred different diseases and medical conditions that could cause this very diverse and often unpredictable set of symptoms that we call dementia. So, think of dementia as an umbrella; and under it, a hundred different potential causes. Part of what you get then is a different trajectory of the progression of those symptoms with each individuals. So even if out of the roughly five and a half million people in this country who have dementia right now as best we can estimate, even if most of those people have and the vast majority of people have Alzheimer’s disease; how that Alzheimer’s disease progresses and manifests for each of those millions of individuals with different lived experiences never mind different immediate environments is going to be very different. And so, the efficacy of the drugs will be affected and the efficacy of the care and support and quality of life interventions will also play out very differently.

 

                                    I will say it’s incredibly valuable and important for people to try to get a more specific diagnoses than just dementia. Sometimes, you’re right, that’s the best that the physician and his or her team can offer. These are very complicated disorders and hard sometimes to pin down. What you will find, I’ll make two points on this issue of what what we call a differential diagnoses. I’ll make two points. One is, sometimes what you’re facing is a mixed dementia; it’s not just Alzheimer’s or just frontotemporal degenerations or just Lewy body dementia. It may be a combination of types of dementia or causes of dementia and that makes it harder to figure out and pin point not only what it is, but what to do about it medically and in terms of quality of life care and support.

 

                                    The other is that if you don’t know which form it is; there is some risk to getting improper care and improper medical treatment. So, what I’m about to say is not universally true but it’s true in enough individuals cases that’s really important. If somebody has in fact frontotemporal degeneration but they are misdiagnosed just having Alzheimer’s disease and they are given the drugs that are approved for, approved by the FDA for Alzheimer’s disease, it can be very dangerous to their health. So, it’s important in that instance to know whether you have Alzheimer’s disease or frontotemporal degeneration for short, FTD. Doctors can’t always figure it out but it’s important to try.

 

                                    There are other situations in which that matters too in terms of care and support. The symptoms we expect to see in FTD or Lewy body disease (LBD) are quite different in their nature and their order and their progression than they would be in Alzheimer’s. Alzheimer’s is characterized initially by memory loss. There’s a little or no memory loss at the beginning of frontotemporal degeneration. It’s much more around radical changes in the psychological profile and behavior of the individual. So, outburst that are uncharacteristic, risk taking behavior that may be uncharacteristic; that’s not so usual with Alzheimer’s.

 

                                    FTD and Lewy body disorders tend to strike at a much younger age than Alzheimer’s. it doesn’t mean if you have dementia at 49 or 53 that it’s not Alzheimer’s, it may well be but it’s an indication that it might not be Alzheimer’s and that the doctor and his or her team ought to look deeper to make sure that what they think as Alzheimer’s is in fact or maybe isn’t and is something else that may be treated and cared for in a different way.

Debra:                         You know, this is such a complicated topic.

Ian:                              Yes.

Debra:                         I noticed… my husband retired and I noticed… my husband’s always been a quiet man and he’s married to a chatty wife so, what a good combination. And we’ve been married it will be 36 years and he’s always been quiet, very thoughtful man and so, I notice that he got a little bit quieter when he retired and then his father died and stress makes everything worse, right?

Ian:                              Yes.

Debra:                         And so, I started thinking, “you know I think I’m going to get him to the doctor.” So, I took him to the doctor and he was… we had a female doctor at the time and there was a female nurse in there and I was in there and my husband was very nervous because you know, three women were going to judge him. So how can that go wrong?

 

                                    So, my husband was doing the little testing; they gave him a drawing and things and the nurse looked at his drawing. All the triangle and she showed it to me and I’m not going to get emotional but she said… she wrote me a little note and she said, “I’m so sorry.” And so I thought, this is… you know, not to mention I have an adult daughter with down syndrome that my husband and I are going to take care of in our old age so.

 

                                    But, what also is interesting that nobody really considered which surprised me was that when my husband was 11 years old, he got hit by a car. He lived in Buffalo New York and he had just gotten his kite flying really high, he was doing really well and he accidentally ran into a car. And the car… and it was a very very serious brain injury, he’s eye fogged, his hips were crashed, blab la bla. He survived it but, his brain was different after that. So, one thing we’re learning more about this than I do Ian is we’re learning a lot from the NFL players that have constantly been getting these traumatic brain injuries and we know that people which ran in brain injuries, their brains are going to aged differently.

 

                                    So, there’s so many different pieces to these puzzles. And Ian, if you are diagnosed with this broad term early onset dementia, which I don’t even know what that means; it doesn’t necessarily mean my husband has Alzheimer’s or going to get Alzheimer’s. But, we’ve gone to all the specialist, we’ve sent our paperwork to Mayo and it just appears that nobody knows what to do and it’s really scary.

Ian:                              Right. And, so you’re right, there’s very strong emerging evidence. Not conclusive yet that traumatic brain injury or repeated concussions, different things but both of them may contribute to the development of dementia. There’s a lot more research that needs to be done and I will say that among others, the department of defense is getting heavily involved in that research in part because of all the young members of the military that have suffered traumatic brain injuries in the last two wars and in other situations. So, they are deeply interested in investing, literally investing dollars in that research.

 

                                    There’s also an organization that some of your listeners may be interested in. it has just launched within the last few months and it’s called veterans against Alzheimer’s. and part of what they want to do is provide better support to the members of military veterans and their families who are experiencing any form of dementia born of any cause whether it has to do with their service years or not. But it’s also to advance that science and better understand if there is a causal relationship, what it is? And if there’s only a quarter of relationship, why does that exist in such vast numbers?

 

                                    I also want to circle back to something you have mentioned earlier just briefly that I fail to address in my long winded earlier answers and that is, when do the drugs work and for whom do they work and for how long? The FDA has approved a small number of drugs to treat the symptoms of Alzheimer’s disease. They do not work for everyone who has the disease and they tend to… for the people where they do work; they tend to work earlier in the progression of the disease and only for a finite period of time. And that period of time where they’re going to work and the degree to which they work again is quite variable based on life history and the medical history of the individual who’s taking the medications. It also of course matters a great deal that they adhere to the medical regime; that they take the pills when they’re supposed to and aren’t missing doses. But that’s it; there comes a point for every individual who’s on these existing symptomatic relief drugs where the relief will not be as strong or as sustained and eventually it will disappear.

 

                                    So, often, families are quite reluctant to have their loved ones stop taking the drugs if they have worked for a period of time and there can be a conflict between the family members that are understandably hoping for any benefit for any period of time beyond where it’s already been evident and the physician who may be urging them to take their loved one off the medication because the physician can see that it’s really not benefiting quality of life anymore. And that’s not something that people in my position… as policy, people can judge but it’s an important often difficult conversation between families if possible the person who’s taking the medications as the person living with dementia and their physician.

Debra:                         Yes. And also, two questions I’m going to throw at you. We know these glorious brains that we have you know, they’re organs and so of course nutrition has got to play a part in that. My husband, he is a swimmer; he’s swim his whole life, he’s in the excellent shape. Now he was on Statins, and the third highest side effect of Statins is cognitive loss. You can have cognitive problems and there have been quite a few cases supported it. So, the first thing I did, you know, like a typical person I started pointed at the Statins which my husband was only on to keep his cholesterol down even though he’s very healthy. So, I took him off the Statins and…

 

                                    But, there are just so many different pieces to this and then of course you want to feel like you’re helping. And so, I started the nutrition and you know, there’s a vegan diet or… me and my husband don’t want to be on a vegan diet even though my son’s a vegan but… so, as clutching at things to do to try to fix it. And I also want to just for a moment bring up Bill Gates because I know that Gates foundation said they were… Bill Gates was donating I believe 45 million dollars towards Alzheimer’s research and so I was just curious how that’s tying into the research and is there anything that we know? Is nutrition helping? I figure it can’t hurt. Right?

Ian:                              Right. So, you raise some really important issues and let’s take first one first and make sure I come back to the Bill Gates topic if I lose track on that one.

Debra:                         You can tell I’ve been thinking about this.

Ian:                              Yes.

Debra:                         Can you tell this is not… this is very real to my family.

Ian:                              So, there are a variety of life style choices that are being recommended to people who are at the risk of or higher risk of any form of dementia. The evidence is not conclusive about whether that will prevent or delay the onset of Alzheimer’s or other forms of dementia but I think you’re exactly right that if you do things that will either do you no harm or provide benefit in other aspects of your overall health and quality of life; they’re well worth doing. And we’ll see through the advance of science, regress careful methodical science whether those things have a preventative or a delay onset benefits.

 

                                    So, let me run through those quickly, there is very strong, but again, not conclusive evidence that a Mediterranean diet can be beneficial and help reduce risk. Not prevent, but reduce risk. That certain types of exercise and I will say that is really inconclusive so far about which types of exercise. There’s very good emerging evidence for cardiovascular exercise but again, not conclusive and not to dismiss other forms of exercise.

 

                                    Social engagement and intellectual engagement also adhere to be very important but again, not conclusive. And let me draw a distinction just on the example of intellectual engagement. What the evidence does point to is the importance of challenging your brain to work in ways that it is not used to and comfortable working. So, think about a physical workout; you need to work muscles in ways that they aren’t accustomed to to build up new strength.

 

                                    Same thing with the muscle between our ears; if you already speak Spanish fluently, it’s your first or your second language. Same with, “well, I’m going to teach myself something new. I’m going to learn French.” Okay, that might have some value, but it’s still a romance language, you already know the structure and the sounds are fairly similar and the rules of grammar are, my wife who speaks French would argue with me but, reasonably similar enough because they’re romance languages. If you want to learn a new language and you already speak Spanish, try German, try Chinese, try Russian, try something that is really a breed apart. In the same way that you are a swimmer, you might try something very different than swimming for different type of cardiovascular workout.

 

                                    Social engagement is incredibly important in both directions. There is positive value in being more socially engaged and challenging your mind but also producing happiness and engagement. There is also danger in being socially isolated directly but also because we believe that there may be some correlation and possibly for some people, a degree of causation between depression and developing dementia. Again, not rock solid proven. Certainly not applicable to all people but if for a sum set of five and a half million Americans that had something to do with it and we can effect their odds, wouldn’t that be a wonderful thing if we could prove it?

 

                                    Let me make one last point about this entire way of lifestyle choices. Two points; one is, we should never ever blame or allow anyone else to blame a person for developing any disease in the family of dementias. It’s no one’s fault, but if we can take affirmative steps to reduce risk or if one day we know how to prevent it over that. So, this is not about blame and it is not about fault and it is not about same people made bad choices or made mistakes; it’s saying, “What can we do to make the future better for more people?”

 

                                    The second point I would make is, supposed that none of these lifestyle interventions do anything to reduce the risk or delay onset of any form of dementia; they still make your life better. If you learn another language; that’s a beautiful powerful thing. If you are more physically fit, if you’re with a healthier diet, if you’re more socially engaged; those are all things that will improve your quality of life.

 

                                    And I’ll give you one example. We believe there is a very high correlation and positively a causal relationship between diabetes and Alzheimer’s. supposed that we could rid the world of diabetes today, and that had no consequence for the number of people with Alzheimer’s or the onset of their disease or their progression of their disease, it will be a wonderful thing for Alzheimer’s, for people with Alzheimer’s if they didn’t also have diabetes. If they have their vision, if they have their limbs; their quality of life will be much higher even if it had no bearing on their Alzheimer’s disease itself. So, I’m all for and a huge proponent of all of these types of quality of life improvers that may also affect the onset or progression of Alzheimer’s or another form of dementias.

 

                                    And then quickly to the Gates issue, it’s actually a hundred million dollars that Bill Gates has committed as initial investment.

Debra:                         Oh. Excellent.

Ian:                              And about half of that is straight donation to research projects that are already on their way through foundations. The other half he’s planning on targeting essentially as venture capital into new initiatives that are being identified. But I think what Mr. Gates and his team and his foundation are interested in is bigger than what a hundred million dollars will do.

Debra:                         Right.

Ian:                              I think what they’re interested in is changing the outlook on the scientific enterprise and they’re beginning in this very small initial test the waters way and they have much greater ambitions for changing the field and I think that’s where the real promise lies.

Debra:                         Yes. That is very very exciting. And as you said, hold such promise. So, let’s look at it from a different perspective. So, I have read studies, I’m dangerous with my studies, but I’ve read studies that we can’t really… we can’t know for sure that a person has Alzheimer’s until they die. And there were some studies on that patients that we knew had Alzheimer’s after they died and autopsies were done that about 50 percent of them did not actually have Alzheimer’s. They had treatable diseases like you know, interference with drugs. Prescription drug side effects and things like that or urinary tract infections and other things.

 

                                    Now, keep in mind and I know you’re thinking this… I’m just somebody that’s out there trying to protect my husband and if it’s on the internet, it’s true. Right Ian? If we got a tweet; we know it’s true. So, I’m…

Ian:                              You and I are on the internet right now so…

Debra:                         That’s right. It’s got to be true. And so I’m aware of that. But also, I’m trying to be much more conscious of how is this coming about for my husband’s perspective. And one day I was talking to my husband and we were in a deep conversation. I was like, “well, you’re leaving me.” I was just, you know, it’s all about me. I was walking the path and my husband said, “But I’m here right now.”

 

                                    And so that mindfulness, staying in the moment, all of those lifestyle changes, he’s right. He’s here with me but I actually have to… I have to be more present with both him and my daughter. And I’m usually off working. So, it’s causing me to be more mindful and slow down and really look at things a lot more from his perspective and always wanting to support him and not make him feel stupid or like you said it’s his fault or you know. So, there are some very complicated emotional issues tied to this from all fronts too so.

Ian:                              Absolutely. Well, so, just the issue about the statistics and the headlines. I will say headlines are a dangerous thing.

Debra:                         Yes.

Ian:                              You will read… in the same day, you will  read a story saying caffeine causes Alzheimer’s and caffeine might be a cure to Alzheimer’s and you can say the same for dark chocolate and wine and lots of other things. So, I tend to be pretty skeptical of headlines because often the headline doesn’t even match the body of the story and then depending on the sources and the quality of the writing, the story itself have problems.

 

                                    Journalists are doing their level best to get this right but I think you’re right. Fundamentally, this is an incredibly complex and unclear story they’re trying to tell. So, it’s no wonder that they struggle to tell it in a way that fits all audiences that might be reading it and couldn’t possibly be crystal clear and send the same message that were potential audience.

 

                                    In terms of rates of inaccuracy of diagnoses, only about half the people in this country who need a diagnoses have them. So that’s the first problem. To some extent, that’s resistance of a person to his or her own doctor or of their family members to pursue a diagnoses to some extent it’s the resistance or the feeling of inability of some family physicians to provide a diagnoses. But when a diagnoses is done by a competent properly trained professional and done in a thorough and rigorous way which is not hard to do but it just needs to be done, when that is done, depending on which studies you look at, the accuracy rate for the diagnoses is anywhere from 91 to 96 percent…

Debra:                         Okay.

Ian:                              As verified by autopsy. So, a quality diagnoses just as it would be for any other disease is the key.

Debra:                         Right.

Ian:                              An unprofessional or a diagnoses process left undone is going to lead to unsatisfactory results. But if you work with your physician to have a proper diagnostic process, it should give you a high degree of confidence about whether there is or is not Alzheimer’s disease or another form of dementia at play. To your family story which is not unusual; it can take a while to sass out which cause of dementia but it shouldn’t be that hard to determine. Again, with the right testing whether there is dementia or not and you’re right, there are conditions where there is vitamin deficiencies or even something like hydrocephalus. They can be reversed and that’s another reason why it’s really important, as difficult emotionally and sometimes logistically as it can be for families, it is so important to pursue that diagnoses. Know what you’re facing; and then you can make choices about how to face it but also an equally know what you’re not facing.

 

                                    I’ll just say very very briefly. A dear friend of mine who had young onset Alzheimer’s had symptoms for several years with docs telling her that it had to be something else. They refused to explore that path because they didn’t believe someone that young and in good physical shape and that brave could have Alzheimer’s. So, they told her it was menopause. They told her it was psychiatric disorders. They try to convince her that her husband must be cheating on her and that this was depression about that.

Debra:                         Wow.

Ian:                              He wasn’t cheating on her. She didn’t have depression other than because she was dealing with an undiagnosed condition. She wasn’t abused in prescription drugs or it wasn’t drugs. It was none of those other things.

 

                                    It took her finding a doctor that was willing to explore the possibility that it might be a neuro degenerative disorder and that’s what it turned out to be. And my friend lost two plus years to finding that diagnoses where she could have been on Alzheimer’s symptomatic drug sooner where she and her husband could have been building the quality of life for their remaining years that they would have wanted two years sooner. They could have been doing the legal and financial and medical planning two years sooner. And she wouldn’t have had to put up with two years of well-intentioned physicians telling her that her husband might be cheating on her or that she might need drugs for some condition she didn’t actually have. So, the truth is empowering even if it’s painful.

Debra:                         Well, and this is also probably happening to others. Our doctor, my husband’s doctor after doing everything just said, “I don’t know. I don’t understand.”

Ian:                              Right.

Debra:                         We don’t know what this is. And I sent his papers on Mayo clinic and they didn’t respond. And it’s so… it’s very… and I don’t want to make this all about me. I’m making this all about my family but there are just so many people that are impacted and…

Ian:                              Right.

Debra:                         There’s so much information and there’s so much we don’t know about the brain still. And so… and I… I was listening to a spiritual tape and they were… because I’m really into mindfulness trying to make sure I’m keeping my attitude in the right place so that I can be supportive of my family.

Ian:                              Good.

Debra:                         And they made a comment about you know, people were dying of cancer well now they’re moving into dementia. And so, life has become so complicated. People want to have dementia because they can’t handle the complicatedness of life which was interesting perspective but I think there’s a little bit more to it probably. But there’s just so much.

 

                                    This is a huge topic. I think that’s why the work that you’re doing Ian is just so important. And one thing I want to make sure is that our audience knows how to find out about your work and about the Lead Coalition. So, I know I probably have gone over but, it’s just such an important topic for all of us and certainly it’s a very important topic for my family since we’re walking this.

 

                                    Before you do that Ian, one thing I would like you just to talk about for a moment is; from the perspective of the person that has been diagnosed with dementia or Alzheimer’s as opposed to just the perspective of the family, I mean, any words of wisdom for people that are walking this path?

Ian:                              Well, I think you put your finger on it several times in your comments which is that there is a whole person there throughout the disease. This disease changes the person but we should be focused as family and friends and professionals who are trying to support the person living with dementia to remember that it’s their life. And we should be focused on what they can do for as long as possible rather than being focused on what they can’t do.

 

                                    Our role might be to support in areas where they can no longer do for themselves and are seeking our help. But we should wait as long as responsible and possible to take over. That’s not fair to any other human being. We respect their dignity, their autonomy, their independence, their self-determination as much as we can, as long as we can with their leadership and their guidance and their wishes at the forefront. Our job is to facilitate; not to control, not to take over, not to replace.

Debra:                         Wise words Ian. Wise words. So, Ian, tell us… tell the audience how to find out more about Lead Coalition. And if you are an investor and you want to support their causes, please do it. If you’re a corporation, we do need more money going towards these causes. If you want to get involved, if your family member… So, tell us how to find out more about your work and how to find you on social media as well.

Ian:                              And thank you for that. So, we’re on Facebook and we’re on Twitter and I think you can find our Twitter page most easily just by looking at Debra’s page. You’re very kind in retweeting a lot of what we do. So, rather than rattle off a long Twitter handle, I’ll just suggest people visit your Twitter account and find us that way.

 

                                    In terms of the web, our web address is pretty easy. It’s “leadcoalition” all one words. That’s l-e-a-d coalition dot org. And on that website, on our homepage you’ll find a list of all of our member organizations. I would say that while we are nonprofit; we do not take any contributions from the general public. Not a dollar, not a million dollar. That’s not why we exist; we’re funded through the generosity of our member organizations.

 

                                    I would encourage people who want to support this cause and be a part of the fight and who want to learn more about these diseases and what to do both medically and in terms of quality of life; visit those member organization websites and every one of them is linked from our homepage so you can get to those organizations. Learn what they do, volunteer with them, support their work and use their resources. That said, I think the other thing to do is just encourage everyone if you have a personal story to tell, tell it to everyone at any opportunity and make your opportunity.

 

                                    If you’re on a checkout line or in a line at a movie theater; turn to the person in back of you and spend a time saying, “you don’t know me, I don’t know you but we might share something in common.” And tell them what your family is going through and odds are, they’re going to know something about this and they’re going to appreciate you having opened up because it will allow them to open up. And when we tell our stories; it empowers us, it connects us with other people so we don’t feel so alone. It also empowers others and it begins to break down stigma, fear and starts to motivate people to take actions. So that’s the greatest gift that anyone can give. Tell your story.

Debra:                         Oh, those are wise words. And you know Ian, I hesitated for a long time to talk about this because I do not in any way want to dishonor my husband. And my husband knows I’m talking about this openly and my husband’s not broken. He’s great. He’s still as smart and he’s fun and he’s… but the good point you made was, we focus on what he’s good at and then… but we’ve always done that and then we support each other you know. And thank you for your work. It’s a very very helpful to me and I’ve learned so much from you and I’m just so grateful that you’re out there you know fighting for our families. So, thank you so much for the work you’re doing today.

Ian:                              Thank you Debra.

Debra:                         Subscribing to the podcast really helps us continue this message. Please do check leadcoalition.org and let’s keep telling our stories as Ian so well, so fabulously said at the end. So, thank you very much Ian. Bye everyone.

 

[outro music]

 

You’ve been listening to Human Potential at Work with Debra Ruh. To learn more about Debra and how she can help your organization visit RuhGlobal.com. If you’ve enjoyed today’s episode and you want to make sure that you don’t miss any future epsiodes, go to itunes and subscribe to Human Potential at Work. Thanks so much for listening and we’ll be back next week with a new episode. 

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Written by Debra Ruh, CEO and Founder 
Ruh Global Communications.
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