4 Episode results for "Dr Rachel Dolan"

Dr. Rachel Dolan Discusses the House Ways & Means Committee's Recent Report,"Under-Enforced and Over-Prescribed: The Antipsychotic Drug Epidemic Ravaging Americas Nursing Homes  (August 27th)

The Healthcare Policy Podcast

29:28 min | 1 year ago

Dr. Rachel Dolan Discusses the House Ways & Means Committee's Recent Report,"Under-Enforced and Over-Prescribed: The Antipsychotic Drug Epidemic Ravaging Americas Nursing Homes (August 27th)

"This program features interviews with respected healthcare industry experts on current topics of substantial national importance. Your host for the program is David Cosso a DC based healthcare policy analyst and We invite you to comment on a program by visiting the healthcare policy PODCASTS DOT com. Now. Here's David. Welcome to the healthcare policy podcast on the host David Intra. Kosovo. With me today Dr Rachel Dolan the US House of Representatives ways and Means Committee majority staffer to discuss the majority staffs recently released report titled Under enforced and over prescribed. ANTIPSYCHOTIC drug epidemic ravaging America's nursing homes. Dr Dole and welcome to the program. I David thanks so much for having me. Please call me Rachel. While this'll be the last time Dr Dolan's bio is posted on, of course, the podcast website. In testimony before the House Energy and Commerce Committee two, thousand seven, the FDA's Dr David Graham stated quote. Unquote. Fifteen thousand adults elderly people in nursing homes are dying each year from the off label use of antipsychotic medications. For an indication that the FDA knows the drug doesn't work the problem has been only FDA for years and years close quote. Legal the FDA does provide a black box warning label. Regarding off label use of these drugs, eleven years later, Human Rights Watch published a report titled They Want Docile. How. Nursing homes in the US overmedicated people with dementia. The report found in two thousand, sixteen, seventeen quote unquote massive use or abuse of Anti Psychotics, for example, Sarah. Quel. Doll and Rispler doll that have serious side effects including sudden cardiac death. The human rights report estimated in an average week over one hundred, seventy, nine, thousand, long-stay Nursing Home Facility patients who administered antipsychotic drugs. Without a diagnosis which the drugs are indicated or approved rover, polar disorder and schizophrenia in testimony the ways and means. Committee. Heard this past November Richard Mollet Executive Director of the Long Term Care Community coalition concluded quote the use of San Anti psychotics in skilled nursing facilities is so extensive that puts the US in violation of internal conventions and covenants on torture and cruel inhumane and degrading treatment or punishment. Close quote. This is my third related interview. In December twenty twelve I discussed the topic with Diana Zuckerman. And in February, eighteen high interviewed Hannah Lamb who authored the above mentioned human rights report. With me again to discuss the ways and means report just released titled Under enforced and over prescribed is Rachel Dolan the reports lead author. So that Rachel as background let's get right into this or immediate neatly into the specifics of the report. What did the report find regarding the extent to which? They're persists overuse or misuse of anti psychotics in skilled nursing. David. So the report showed what what you what we would expect from your introduction, which is the use of antipsychotic does persist in nursing homes across the country and it remains quite high and not of course, has implications for patient safety and and health We found in the fourth quarter of Twenty nineteen approximately twenty percent of all skilled nursing facility residents in the US. So that's about two, hundred, Ninety, eight, thousand, six, hundred, fifty people every week received some form of antipsychotic medication and most of that was without any psychosis diagnosis for which these drugs are indicated So specifically, we actually looked at trends and surveyor citations for unnecessary medication use in nursing home. So that's kind of the. Part of this study and what we found was a clear change in citation rates for these facilities between the change in administrations from the Obama Administration to trump administration So we found citations for antipsychotic misuse in sniffs increased by two hundred percent between twenty, fifteen, twenty seventeen but then declined by twenty two percent from two thousand, seventeen to twenty eighteen, and importantly a ten percent of citations associated with actual harm or immediate jeopardy to a residence health or safety. So those are some of the most severe citation surveyors ever capture resulted in no fine from twenty seventeen to twenty eighteen under the trump administration. So you know. I. Would say even though this study in particular couldn't determine causation we we did see a clear association between the Trump Administration's regulatory rollback campaign twenty, seventeen, twenty eighteen and a reduction in citations for these particular drugs. Okay thank you and we'll get into the trump administration's regulatory decisions in this regard in a minute let me just ask as a follow up or an aside question and I don't think I saw this new report. So you may not have these numbers top of mind but worth asking, can you give an approximation of the cost? To the Medicare program at least relative to the overuse I, mean, this is a massive amount of money in reimbursement for these medications. I don't remember offhand. Let's see I think in the in the actually in the report we got About one third of older adult Medicare part d enrolling with dementia who spent more than one hundred days in a nursing humber prescribed antipsychotic in two, thousand, twelve constituting roughly three, hundred, sixty, three, million part D plan payments that year and of course, there's also cost associated with hospitalizations for inappropriate use of these drugs So I would expect you know that that that is obviously very under an understatement understated estimate that does not capture the full realm of payments. So it's it's fairly substantial. Yes and again one of the. Side effects of this is increased rates of hospitalization. As you suggest, let's go to This is sort of the next So we have over used we've had over us for a long while. And increasing over you. So it appears we'll get back to trump but a what explains what's the motivation for over or misuse for these medications So that's a really important question because it gets to the crux of why this is happening So as explained, the background section of the study on prior research has shown that I use of Anti psychotics is likely related to sapping levels in nursing home. So lower staffing levels. Are Associated Higher rates of antipsychotic use. And really staffing in many ways a proxy for the resources available to deliver care to patients and disabilities one city in particular on for residents with and without dementia. One additional are an hour per resident day could reduce the odds of an antipsychotic use by fifty two percent and fifty six percent respectively for those patients without Dementia I. Think you know the Human Rights Watch report that you cited at the beginning of this introduction also confirmed this qualitatively through their interviews They actually were kind enough to provide us with some of the quotes that they collected during that. Study some additional quotes and we included them throughout the the report and and I just WanNa site one of those one of one family's from a Texas social worker who explained that quote the nursing homes don't want behaviors they want docile they want people with no cognitive deficits can take care of themselves and quote so I. Think this is you know discussed at the heart of the matter here is You know people without you know people can take care of themselves in a sense fills the gap in in created by not having enough staffing in these in these facilities. Okay thank you. I'll. I'll ask the first part or all answer the first part of this question, and you can ask the second part and that is. Seventy one percent of cornyn MED PEK seventy one, seventy, one percent of skilled nursing facilities are for profit. What is their profit margin? Well believe and? You may be you may have information in front of you. I don't have it but it for I believe the laugh nineteen consecutive years, we've seen Medicare nursing home profit margins in the double digits. that. You're exactly. You're exactly right. I just went back to the most. Recent. Med Pack. report. and. A double digits summit understated it's been at about twenty percent margin for the last twenty years. That's right and one thing I wanted to point out about that is is a lot of these nursing homes they. They have Medicare patients in also Medicaid and and you know the important point here is a medicaid reimbursements. At a much lower rate and not obviously varies by state. So one of the points that Med pack always you know says is that the Medicare payments tend to subsidize those Medicaid payments, which are you know in many senses under payments? Right. Defacto. Crack. Yes let let's let's go. Let's try to get into the chronology here or take this chronologically, and that is What was the majority staff conclusion regarding the success of the CMS voluntary program. that. Don Started in twenty twelve titled National Partnership to Improve Dementia Care in nursing homes. Sorry. That was not the the focal point of our research necessarily. But obviously, we did dig into it to a certain extent and you know I think, the important thing to point out here is that the national partnership has counted. You know a forty percent reduction in the use of anti psychotics since it began to twenty twelve and You know I think it's important to look at those numbers the. The first point is you know Rates are still high. If we look at the patients with the serious conditions that would require an antipsychotic. I, mean, the rate should be around you know two percent or something, and still we have a significant number of patients that are getting these drugs that shouldn't be. So you know relative success, it's just that it's relative and it really doesn't mean anything for the for the patients and families who are suffering for the inappropriate use of these drugs, and then the other thing I wanted to point out is that the data. Sort of raise some questions because the way that cms calculates the data are they removed the short stay nursing home resident and they removed people with psychosis diagnosis from that calculation. So the report you know, we point to the fact that there has actually been an uptick in reporting of of the falsifying of psychosis diagnoses to avoid the surveyors, and so if you exclude those people from the calculation, you have a significant underestimate on which is why our numbers are substantially higher than those reported by the National Partnership and CMS. Okay let's let's get more on target relative to the report and let's go into if you could step us through what exactly did the trump administration do when it took off his relative to regulatory oversight of use of these meds in. Post Acute. So I I want to paint sort of broader picture, which is one of right? You know regulatory reduction. The administration has been touting their patients over paperwork campaign, which is not specific to nursing homes at sort of you know cross cutting around. The all of the different providers in Medicare, and so you know every time they issue a rule they talk about what they've done to reduce the burden on providers So that sort of part of this, but I think specific to this particular report. The important thing to highlight is the trump administration eliminated on you all the Obama era per day finding practices that were implemented in July two thousand seventeen, right. So if you have a fraction, you're find every day until he remedy that. And what the trump administration did was they issued a single fine instead and that you know in the case of inappropriate anti psychotic citations that was accounted for two thirds of all citations in that space you know I, I think the Kaiser. Health. News. Had A report that showed that average aggregate fines on nursing homes. That endangered or injured residents dropped from forty one, thousand, two, hundred, sixty under President Obama class year in office in two thousand sixteen to Twenty eight, thousand, four, hundred, five in the period between April twenty, seventeen and March two, thousand, eighteen, and I think that's really one of the important points to raise here in the context of this report and how he saw the rates of citations decrease under the trump administration. Okay thank you, There is some discussion about the interaction between the committee and cms you do site the fact that the chairman Neil wrote a letter on this matter to cms in seven eighteen or July eighteen he do make nor the fact that cms never provided the committee with a written plan to reduce use to reduce falsified diagnoses. What would you say further relative to? The interaction you've had in pursuing this research with the senator Medicare Medicaid services. So. That's that's right. They didn't provide a written response. To the. The January twenty nineteen, follow up letter my boss sent. So so he sent a letter in July of twenty and eighteen we got. What he believed to be an unsatisfactory response in November of. That year and then so he followed up with another letter in in January of Twenty nineteen asking more pointed questions specifically about this issue of falsifying diagnoses and the response that we got from. That was actually the data that we got underlying this particular report. So they instead of sending back a written response they actually just sent us. File for data and now, and you know and talk to us about it So I think you know we had to do our own digging to find some answers, and of course, a lot of them went unanswered but that is sort of the crux that. Much of the report page twenty three far for about eight or nine pages is an overview of the more the quantitative study you made relative to citations Could you or would you highlight a few of those findings since it is a a substantial Aspect or component to the report. Sure I and I think these I can dig in a little bit more specifically than I said before. But the the the important things to point out is is this distinction. In citations. But that we saw between up the Obama Administration and the trump administration where we saw twenty two percent decline from twenty seventeen to twenty, eighteen but. Broadly if you look across the data between Twenty fifteen and twenty eighteen, there was a hundred and twenty four percent increase in the number of citations for inappropriate use of antipsychotic nursing homes and then you know between twenty, six, th the bulk of that happened between twenty, sixteen and twenty seventeen under Obama. So we saw an one hundred and ninety nine percent increase in citation rates So that's two thousand two, hundred, twenty, one more citations an every state experienced a large increase, the largest being California, Ohio Texas New, York and Pennsylvania and then we saw between twenty sixteen, Seventeen Things stabilized and then in twenty seventeen to twenty eighteen rates decreased by twenty two point. One percent of the largest in California Ohio, Indiana and New York. Okay. Thank you. So this is not surprising. to summarize the trump administration. Provides essentially, this moratorium on Reagan forcement and not surprising. This is the effect we get a relative citations I do have A. Question I believe you make brief mention of state. Regulatory. Action and I asked that specifically because. The issue here largely gets at informed consent. And you do make note of this issue some tangentially about states having passed laws. Requiring, informed consent what's your overall comet or Sussman of states policing? Their nursing homes. So we didn't look into that I specifically for the report as I mentioned is in the background section I, think oversight of nursing homes is is always going to be escape federal venture because you know the surveyors are are you know work for at state surveyors and so there's always variability there I I can't speak to this specific policies in states in the extent to which they have worked or not worked because we didn't really look at that but that is to say that there is some variation in how states have have handled this particular issue. Okay thank you. I'll just note and this is buried somewhere in in your report and typed it in my notes you stayed over all the state focus our state of to reduce have been largely stagnant focus is more on physical rather than chemical restraints, but you do note three states. California Oklahoma and Illinois Nara require. Physician obtained a form consent. Let me go to. the latter part of the report, and before we get to that I do have to ask you and I feel largely remiss if I didn't ask you, this is calling for your interpretation Again, before we get reports conclusions in what we may see in the next Congress relative to legislation in responses. report. As you well, where the federal government has for decades used taxpayer dollars to pay for sniffs are reimbursed them, and this has been under the guise of providing healthcare for over and let's be clear hair. Moreover, these are frail elderly women who reside in these facilities The result of which L. were well aware per my mention of David Graham. has resulted in likely the deaths of many thousands of these residents and to say further as an I cited. Intentionally. Richard MODs testimony. You heard in November. This behavior may actually violate international treaty. So my question is concerning how long this has persisted. what's your interpretation explanation as to why we can't seem to resolve a remedy or address successfully this problem It's a good question I think it's this is kind of a tricky issue I'm I would say to to preface it. This is not specifically what our report looked into could. So I am. Speaking more from my experience working in this space. But I think this. This question really gets to the broader issue of quality in nursing homes and wide. We continues to struggle even after the Nursing Home Reform Act. was passed in one, thousand, nine, hundred, seven. Thirty three years ago at this point, and that was really meant to to overhaul nursing homes and and provide a safe environment for patients and and I also want to mention sort of the current. The current backdrop today with covid nineteen and how long term care residents represent I think something around eight percent of cases but more than forty percent of death. Actually in some states, it's you know more than half of. A significant amount more than half of dust but you know I think gets to you know the fact that in general our policies reflect our societal values right? You know in the United States value one Javadi but we don't necessarily value what that truly means I. Think you know for a lot of people. It's very difficult to talk about aging and and this goes to some of my prior work on on hospice care during via PhD, you know I think This this goes to the fact that many Americans. do not want to face the reality that at some point they or their loved ones may need institutional care. So you know it is it is challenging to create change, devote significant number of resources to Inari of the healthcare system where people just don't really WanNa WanNa, think about it or invest in it so I think this goes to the broader questions about where we are in nursing homes right now in our country and whether what we're seeing there with the number of deaths and in all of the infection control issues that have been become so public whether this will be a turning point for us and in truly taking the time to invest in our patients. Receiving institutional care and the families so rely on the. On the Senate. While let's let's hope. That is the case I I will say per your point about infections you do not on the report. And this is researched I. believe from Oh I G. Wonder one, two, three, million, series infections occur and sniffs each year. and more than sixty percent of these facilities have been cited for deficiencies in relation or related to infection control since the beginning of twenty seventeen. so antipsychotic overuse infections covered the list goes on. Let me go to. The conclusion report, the majority staff did not make recommendations. So my question is why was that and I ask particularly because he do state in conclusion, the report states quote unquote that the paper makes a case for specific policy proposal tricky. Since report concludes it is reasonable to conclude overuse is pervasive and continues to occur an unacceptably high rates close quote and amidst the intent of eighty-seven Nursing Home Before Act just mentioned have not. been realized I might mention to encourage listeners to to read mullets November testimony that we've already referenced because he has you're well aware. Makes several recommendations including arguing for more formal informed consent. So again. why did the report pass on on recommendations? So I think you know in terms of the purpose of this report, it was really to draw public attention to this. This issue you know we did not go so far as to provide our own recommendations, but we did include a number of recommendations from credible outside organizations for consideration including Richard Mullets, organization Lt, C., C., C., and so you know I think on a committee level we continue to way different options and our thinking things through and the context really where we are right now with covid nineteen and the outbreaks in in nursing home facilities. Okay. So Subs can file is wha, what's your sense of this report? prompting legislation to eliminate misuse. And regulate the related issue or probably impetus thereof, which is a understaffing and. In my question is this is the ways and Means Committee majority report. Minor standing that clearly means there was no republican support and relative future legislation. What's your sense of Republicans? I would hope to think this could be a bipartisan issue. But what's your sense? Also Republican support? So I'm the bipartisan side of things I would say. An point you to the letter that we released the summer actually with a focus on with Grassley and widen and Brady. So was a bipartisan by camel where we sent a letter to oig asking them to do a follow up study looking at to their twenty fourteen study that really kind of brought a lot of attention to this on the use of psychotropic drugs. So I think there's Definitely, a lot of interest in in a thinking through how to handle this. I ask for this particular issue, you know we reporting out you know challenges with citation great through the trump administration. So I think you know doing it on a major on the majority front based on the letter that our boss wrote to cms and the data that we as the majority received made a lot of sense. Okay. Okay. Thank you. Am I correct that per this session of the Congress, which is rapidly concluding the only bill that I could find was hr nineteen fifty five understanding Alzheimer's care. This was an custer's bill with two cosponsors requesting cms to study antipsychotic prescribing practices in non nursing home. Settings, was there any other legislation related the session to your knowledge? I'm not. Sure. But just you know. Just, because there's no legislation out there doesn't mean that folks are thinking about or working on on issues for the longer term. Okay. Okay. Thank you. I. Do have this somewhat formula a final question. I'll just throw in here and that is again formula what would you advise having studied this subject? extent that you have. What would you advise family members? Relative to either admitting an overseeing their family members care nursing home facility. What what should family caregivers pay attention to? I think you know our experience with Kobe has highlighted how important family members are in this whole process of overseeing care for patients right. So when you know everything closed down in in March and families were not able to go in to see their loved ones that was critical oversight tool that was missing and so I think the important thing to the extent people are able to really be involved in the care of their loved ones because we we know this is happening and you know making. Sure that your your loved one is getting the right care a vital support tool to exercise as as caregivers So I. think that is important point and night you know a lot of a lot of this is also importance of being aware that this is an issue to begin with and and that's part of the reason that on my gosh has been so vocal about about this issue is making sure the public is aware as we continue to think through options and you know frankly I think this. Is. Something that really needs to be handled on an administrative. Level, but you know. If the trump administration was doing their their job on overseeing this report points out that maybe this would be less of an issue but you know we we all have a role in in making sure that there is accountability on this front on. Because at the end of the day, the important point here is to keep patients safe and families are. Aware. What's going on? Yes. Absolutely. So I would say in towards pay attention, correct yes. Absolutely. So Rachel thank you for this review Mike congratulations to you and your colleagues on producing this report I will say. Obviously. It would be nice. If next session next Congress, next administration we could see some related legislation. long since passed do but thank you again for your time. Thanks for having me. Take. Care David. You have just heard another edition of the healthcare policy podcast hosted by. David. ENSOR. Cosso to comment on this program or others to see information about upcoming interviews to suggest a program topic or to here an archive program. Please visit our website the healthcare policy podcast dot com. Thank you for listening. Please listen again soon.

Trump Administration Dr Rachel Dolan Dr David Graham US psychosis Medicare FDA Obama Administration Obama Nursing Home Facility ANTIPSYCHOTIC National Partnership Means Committee House Energy and Commerce Comm Congress Human Rights Watch Texas David Intra David Cosso
COVID-19 Limited Series: The Pandemic and Parkinsons Research

The Michael J. Fox Foundation Parkinson's Podcast

30:26 min | 1 year ago

COVID-19 Limited Series: The Pandemic and Parkinsons Research

"Today on the Michael J. Fox Foundation Parkinson's PODCAST. My wife wanted to buy a t shirt that says you were social distancing before it was cool. But. I think we all realize that no matter how introverted we are. You know those connections with people are so important. This is Michael. J. Fox. Thanks for listening to this podcast. Learn more about the Michael J. Fox Foundation Work and how you can help speed a cure and Michael J. Fox dot org. Parkinson's disease can be challenging, but we're here to help welcome to the Michael J. Fox Foundation podcast tune-in discuss what you should know today about Parkinson's research living, well with the disease and the foundation's mission to speed a cure free resources like this podcast are always available at Michael J. Fox Dot Org. Hi, I'm Larry Gifford I'm the host of the podcast when life gives you Parkinson's I was diagnosed at forty five years old like you trying to figure out everything I need to do to be healthy well and safe during the covid nineteen pandemic and that's why the Michael J. Fox Foundation for Parkinson's research and I, are teaming up to launch this limited series podcast. Each episode is designed to help people with Parkinson's disease and their care partners navigate their way through the covid nineteen pandemic and joining me each episode is the foundations owned board-certified movement disorder specialists, and Vice President of Medical Communications Dr Rachel Dolan. Hello Rachel. As they usually say I'm here in my one bedroom apartment on a busy street in New York, city. So apologies in advance if you hear the background noise horns honking the rumbling trucks. Unusual. So today we're going to talk about how Cova nineteen is affecting. Parkinson's research a topic very near and dear to our foundation into the Parkinson's community because they're counting on us to keep research moving forward so that we can get to more new treatments and. A cure for the disease and we're going to start with a very cleverly titled Segment here's what I'm hearing. What are you hearing? All right. So I'm hearing on dentists drug to increase the amount of love dope that reaches the brain has been approved by the FDA but won't be released right away because of covid nineteen. That's right. This is a new drug known as picone made by accompanying. Neural. Kerlin by assigns. Capone. So, it's a type of drug that works to lessen off time which has been leave Adobo wears off before it's time for the next dose and symptoms such as stiffness, slowness tremor, or even anxiety or mental foggy nece comeback. This is actually the fifteenth new Parkinson's therapy that's been approved by the FDA, since two thousand fourteen. So that means more options and that's really important because not every drug. Works for every person I've foundation has done a lot of work over the past couple of years to connect patients to makers and regulators for dialogue about off time including meetings, summits, and surveys on our online study Fox insight. We're really pleased that we've been able to play a role in increasing research and investment in this area which has led to new treatments to better address patients. Unmet needs. And as far as what you mentioned about the covert aspects of the story, it's important to remember that there's always a gap between the approval of a new drug and when it becomes available to patients in a mainstream way, this gap is can be several months or more under the best of circumstances, and that's because companies have to ramp up manufacturing and distribution educate physicians work with payers and do all kinds of tasks related more to the business of signs than the science itself. So yes, given the way that covert is changing and disrupting some of these activities. It's not surprising to see that the company's ability to get the drug from approval to pharmacy shelves me impact into some degree. Make sense I'm hearing about so many great people in the Parkinson's community who are offering free online classes for exercise meditation. Yoga, it's so great to see everybody coming together. It is and managing stress and staying active are absolutely critical. Right now Parkinson's or not. All of those strategies you mentioned are helping people are foundation had a Webinar mindfulness a couple of weeks ago featuring Natalie Cogan who's a mindfulness expert that you might know from her Ted talk or her book happier now, and you can access that Webinar on demand or downloaded as a podcast in our foundations Kobe resource hub on the homepage, at Michael, J. Fox Dot Org. There's also many Parkinson's exit exercise programs as you said from boxing to dance to you name it that now have online programs and it's really great to see the community coming together. In this way I'm also hearing that scientists recruit labs army of at least twelve thousand volunteers to help them find the vital clues that will lead the life saving strategies to prevent and the deadly corona virus anyone over the age of sixteen can take part of this groundbreaking Covets UK investigation you know covid evidence all you need access to the Internet around an hour a month and the determination to get behind this British initiative. It doesn't matter where you live it's www dot m. u. l. dot. Dot UK slash covenants. We'll put that on the show notes. So. So Labs Army of twelve thousand volunteers late that sounds awesome I love this focus online research you can do from anywhere in online surveys like this researchers can gather a lot of data quickly in real time and individuals can make an impact from their own home. We're seeing a number of these studies including one sponsored by Mount, Sinai researchers that I just for disappointed in for people in New York City. which as you know, is the epicenter of the pandemic in the United States and coincidentally also are foundations headquarters. I should also say that for people with Parkinson's are online study, Fox insight is conducting a survey about Parkinson's and Cova did to understand if and how the virus affects symptoms care and other aspects of the disease and people both with and without Parkinson's can take that survey at Fox inside dot org. I've taken it was really quick, but it was like it's you feel like you're you're helping come up with something new and different, and you're adding your perspective, and so you can be a part of whatever's next. So Fox inside dot org come on. Covid nineteen is sisters on ways we never imagined. Round the globe individuals, families, and nations are rising to this challenge with courage and grace I'm especially. Richard. Schmidt, is quick response to this crisis for our part. The foundation is making this commitment. We will flex the researchers needs. In any way we can keep critical neuro science moving forward. Because he's possible disruption. Will pull through this and be strongly number. Speaking of research let's bring in the Guru of research todd. Share is the PhD CEO Michael J. Fox Foundation Todd started his career as a bench researcher studying environmental causes of Parkinson's at Duke. University UVA and emory university he joins us now todd thank you for being here and clary quality here our listeners WanNa know how this pandemic is affecting the development of better treatments for Parkinson's back. March. Nature Dot Com reported that because of grow virus, there'd be a near shutdown of all clinical research I saw rest store bio delayed a phase one. B. To a trial of rt be one to one in patients with Parkinson's disease due to cove nineteen level four alerts and New Zealand I saw another article today that we may be setback for decades. What is the current state of Parkinson's research? Yeah. So we definitely have been impacted in Parkinson's research by you know much like the rest of the world by the covid nineteen. situation and We are fortunate in some ways that the end of twenty nineteen, we had incredible momentum in Parkinson's research, lots of new discoveries. Lots of new understanding of the mechanism of disease, and this led to a of clinical trials either being planned or active protesting new therapies for Parkinson's. Clinical research has been impacted by the current situation really because A lot of clinical research requires. Person visits of the participants and for many very important reasons there've been limitations on. The otherwise healthy people coming to clinical centers to undergo tests. and. Different procedures as part of clinical trials, and also we really have been focused on maintaining the capacity of the medical system for emergencies that are uncovering. So a lot of the ongoing trials had to. Postpone or or delay these clinical visits. Many have been able to convert to be assessments to remote monitoring. So things like Pella Research, which is doing clinical visits remotely have been able to replace some of the assessments. but anything that requires sort of a biological sample of blood test brain imaging those have for the most part been impacted because there's very hard to run those procedures. Many universities closed down and this led to some of the labs being shut down or delayed their work, and we're hoping those. We'll get started up as soon as possible. But right now we're being cautious and starting up carefully. New. Trials that are being planned. Those are continuing to be planned a lot of the protocol writing and regulatory work can still be done. and the foundation has really been trying to do a lot to continue to promote alternative ways to do research. We do have Fox insights study which you could participate from your own home by doing online surveys and questionnaires will definitely be hoping that this. Can you know these clinical research studies could come up and running as quickly as possible as long as it's safe to conduct. So Todd, tell us a little bit more about what we're doing to learn from the situation and how the foundation is working to respond to this and keep things moving so that we're up in ready when this is all hopefully over in behind us. So, there's a couple of things that we've been focused on and doing in this regard in terms of clinical research the foundation has invested over the years in trying to improve how we conduct clinical research and to use much more remote monitoring of participants whether that's you wearing devices like motion detector watches APP based assessments and also online surveys like Fox insight. So that work is. Continuing and we believe that this'll be even more important going forward in clinical research. It also just helps in general to get a better get better insight into patients. Every day activities you know to get information between clinical visits. I think this is an important opportunity that will gain a lot of steam because of this unfortunate situation in terms of integrating more technology into clinical research. On, the laboratory side, what we have done for grantee and we've been in contact with our guarantees and for those that don't know the Fox foundation funds, research worldwide. So percent of our grants or outside the United States. So we have grantee all over the world and we've been in contact with all them and assessing the situation in their local areas. we have allowed or provided an extension for all of our grants. People have more time to complete their research with the grants that were made given this interruption that they've had, and we are also working to commit new grants as quickly as we can with the resources that we have because we do want to make sure that our Parkinson's researchers are ready to go soon as the labs reopen and that they're able to keep their research teams in. Place and keep that momentum that we had going into Parkinson's research before this all started. So that's a lot of work that we're doing. Now with the grand ts, we'd really want to try to minimize the disruption minimize the loss of momentum that we have as much as possible from my vantage point todd covid nineteen seems to be proving that if there is a will, there's a way in terms of research and developing treatments and finding cures and mount. Of collaboration and red tape being slashed seems like a great precedent being set for what could be you know the next stage for the Parkinson's community to come up with a cure what are you learning from how the world's scientific communities are collaborating these days? Yeah. I mean I. Think this has been really important to see and the Fox. Foundation. Always put collaboration sharing of data at the forefront of all the research that we fund some of the major. Studies that we work on particularly are Parkinson's progression markers. Initiative makes all of its data available in real time to the research community, and we're seeing how critical that is in the current situation of Covid nineteen where we need this information right away as it's happening. So we have been pushing that kind of approach from you know at least the last decade, the Fox Foundation and I think what we're seeing is that this is the way research needs to be conducted. what we're also learning that time of course is of the essence and that we need to act very urgently and think this is also very important to the Parkinson's community for us to continue. Push forward as urgently as we can. and I think not only is it the sharing of the day data? That's critical. It's what we'd call and Research Multi Disciplinary or interdisciplinary research is necessary in case of Cova. There's people with expertise in epidemiology and public health virology and immunology pulmonologist all need to get bring their expertise to the table. So we can really get a handle on what's happening and how can we treat? And mitigate what's what's going on with the virus? And in Parkinson's, we need these multidisciplinary approaches as well. Cell Biology, neuroscience clinicians, neurosurgery genetics, and that's another area that the Fox Foundation has worked on over the years to get all these expert at the table bringing their unique expertise together so that we can really get the most insight and moving forward as quickly as possible. I think the other thing that we've seen is that we need to come up with new ways of pushing the research forward and looking at how can we take advantage of regulations and not see them as barriers for pushing new therapies forward, and I think there's been a lot of lessons that we've seen from this pandemic and how to be more creative about conducting trials and getting results more quickly todd in addition to the researchers and the people participating in research. We also, of course, need doctors and. Being a program to train more movement disorder specialists who are also researchers the Edmond J Safra. Fellowship. In Movement Disorders, which of course is near and dear to my heart but talk a little bit about that program and how that's continuing during this time, which is also really important to stress. Yeah. I mean, I, think what we've found in the pandemic, but we knew that in Parkinson's disease. for some time is the need to have a wide depth of expert clinicians and researchers who understand the details of the particular disease that's being treated and studied, and in Parkinson's we've known for some time that there's a shortage of people with this expert training in movement disorders. So this is additional training that you get beyond andrology residency to have great expertise in treating movement disorders. Parkinson's disease as many of you know is a very difficult disease to treat as a clinician is such variability in the disease. Variability in the presentation of symptoms and Response to treatment. And it takes a real experienced hand to navigate the disease from the physician side. So in partnering with the Edmond J Saffir Foundation. Over the last few years, we have been supporting this particular training, this fellowship training it movement disorders to to build up an army of re of clinicians who have skills learning defeat of the experts on how to treat Parkinson's disease. And also be at the cutting edge research so that we can bring the discoveries from the laboratory into the clinic and conduct more innovative trials and make sure that we're targeting the biggest needs if the patient community and it's a really important program because we WANNA, make sure people have access to this type of care. For sure I mean it's it's an amazing program and going to Md.. Over a neurologist for me was was lightened day and I feel so supported by by md if it's a great great thing that you guys are doing and supporting one of the cool events that I got to participate in the Michael J. Fox Foundation put on with Parkinson's I IQ plus you events which were held in Atlanta and Phoenix and Anaheim, and we had this whole schedule and then Cova came along and now I'm like I don't get to see everybody anymore Events that have been canceled because of this, but you're finding alternative ways to connect with the community. I mean this is also one of the real negatives of the situation with cove it is. we made the decision in March two to postpone all of our large in person events for safety of the participants and let you know we didn't want our staff traveling around the country and everything's a lot good reason to postpone. But it's a real negative to not be able to do these events because there's such a need for in terms of the P P Q events, such a need for education in the community. So people can understand and have the skills and tools. To have the best ways to deal with this disease today, and the event we have we've had usually have five, hundred, thousand, fifteen, hundred participants on that in person for full day educational event really to understand how to interact with their doctors. What other resources are available to them in terms of physical therapy mental health that they should be thinking about what local clinician sites what local support networks are available in those communities And what we've done, you know tried to pivot because we can't we don't. We don't know when we'll be able to do these events again. So we've pivoted to use technology and use the digital space to really get that information out to people through podcasts and Webinars, and just the connection very concerned in my own life and I think for everyone out there about sort of the negative mental health. Consequences of social distancing and really making sure people know that the Parkinson's community is still there for them, and this is something that talks foundation is committed to and remain committed to. In terms of supporting the community when people are living with Parkinson's today and covert or no Cova. Still fifty thousand plus get diagnosed with Parkinson's in the United States along this year. Well, I grew up with my mom saying everything happens for a reason and I didn't always believe her but I do now I hear a lot of prognostications around lessons that society may learn from covid. What do you hope the Michael J. Fox Foundation, learns and in general what the Parkinson's community may learn from this really weird time in our lives. Yeah. I. Mean I keep trying to look for the silver lining and I'm sure there is one and. Hopefully. I'll be able to look back and say, oh, that was great. We learned all this important stuff. But. But there are some things that I do think we're learning on this. So one thing just on community side, we've been talking for years that the Fox Foundation and with some of our. Research is that we work with on expanding telemedicine for Parkinson's patients. It's been validated. It can you can do an exam for the most part. By telemedicine for Parkinson's patient, and this is now happening basically overnight because of COVID and we're we're really pushing on the policy side to make sure something like that continues because we do think that patients would have much more frequent interactions with their clinicians if we had more widespread telemedicine that's just. One example I think what? We found or what I've learned more specifically pinkus lessons that I've learned from the situation. Everything starts with your health. Health drives everything for yourself and for. Society. Everything kinda derives from from good health. It's our prosperity or happiness any adventures we take Things that we do we we're seeing that now on a societal level and what it's reminded me of of why have gone into my career that I chose in the first place, we have to invest in health. Science is the basis of that investment. Funding research getting new treatments out for people improving how care is delivered I mentioned the example of telemedicine. And what can we do? That's not just in a drug what we do for ourselves for our health. Exercise Diet taking care of ourselves making the most of every moment that we have when we have our health because everything is deriving. From there. So we have to commit to our own health. How do we reduce our stress? Importantly, we maintain that social connection My wife wanted to buy me a t shirt that says you were social distancing before it was cool. Calm. But. I think we all realize that no matter how introverted we are. You, know those connections with people are so important and these are things that reminds you of. And I, and the other thing that I've been reminded of kind of specifically from the foundation perspective is that science and developing new drugs. It's a team sport. So it takes people with the disease their families to participate it takes those eight disciplinary multidisciplinary teams. It takes people to fund science at the Federal Government or philanthropists, and it takes the whole community to have a commitment to see that science through. To the end and know that they'll be failures along the way. But that we all benefit when we get to the success, every incremental success that we can have. Improves our health that much more, and then we can enjoy more of all the good stuff that we want in life and finally this has been something the foundation from the day Michael founded. Has had an DNA which is urgency. But. Saw with this particular. Unprecedented pandemic that the entire world turned upside down basically. On a day's notice I remember the day where. Fox Foundation was. Doing our Practice work from Home Day just in case we were GONNA have to remote. And it was the night before that day and that was the night where the NBA cancel the season Tom Hanks outs. He had covert and we were doing our practice day the next day midday school district in my town announced that school was closed indefinitely. And all of a sudden, the whole world changed. So that urgency that talks Sunday always had a don't put off tomorrow what you could do today. And Time is not neutral for people who have chronic disease like Parkinson's. And I think foundation and it staff just gets Tripoli committed to that and a motive when we see something like this happening because all those trials and all that researching and packed it now we want to get it restarted and get to those answers so that we don't have research that slowed the next time something actress like this happen Rachel remember that the practice day very well, todd was ready to kill me because I was trying to go on an international trip during that. Time. It was actually right before everything down. I. Tried to go on an international trip and I was very quickly on my way back from the international trip to working remotely from home. So it was a little bit of a whirlwind for me but I'm thinking you know it all starts with you. You know I mean there's so much impact that one person can make for the collective for the for the whole community for the whole world whether that staying at home to protect others. Participating in an online research study to help researchers while we're while we're all being socially distant or physically distance to help other people. I do think it's this moment where we have kind of all paused and been forced to slow down, which is not a concept were familiar with New York. City has really been a time to reflect and think about what's valuable and important and I do. Think is a good lesson in moving forward. It's really cool. I've been connecting with people on Zoom like every week I picked like five of people that I've met online that I communicate through twitter and I invite them to resume calling this the first time we've seen each other like really talk to each other and it's really cool. Now Todd I hear you're a great teacher well I am. It wasn't a voluntarily decision. I Have A. Five year old and an eight year old so I'm currently. Co Teaching with my wife's kindergarten and third grade. And one thing that's fun is I've gotten to relearn what robison. I know I knew at one point in my life but after not succeeding as well and one assignment that I'd hoped I had to go back to read read up what what all the different polygons work. You know I think there are lessons that that the children are learning about some of the things. Said, how we have to take care of each other? And that's sometimes you have to make a sacrifice for others, and hopefully those will be less than that people can take with themselves as we kind of rolled back. Hopefully sooner than later into the new normal the other thing that that I've learned and been very so excited about seeing. Is these heroic individuals who are signing up for these vaccine trials. We all want the vaccine. And we hear that could take twelve to eighteen months or longer. What we know for sure as if no one signs up for the trials, it will take forever. You know even our space in. Parkinson's this is a lesson for all of us to know that. If we the fast, we want those results we all should have to step in and the way that we can to provide the information that needed to develop new treatments that I think in general, one of the things I'm hopeful for is. This whole new appreciation for the importance of science which I think unfortunately, we've drift away from. At least in the United States over the past period of time, and that innovation and science is is really the path for the future and what made America, such a strong country and We should you know be reinvesting in that and supporting that? That's a great point and it's a great place for us to conclude this conversation that could continue for days because we love talking to you, todd. So, thank you for joining us but thank you Larry. Thank you Rachel everyone stay. Well, todd is the CEO of the Michael J. Fox Foundation for Parkinson's Research Rachel. Dole. Thank you. Again, this was a great show yet another information packed episode. Rachel is the vice president of Medical Communications for the Michael J. Fox Foundation and a board certified movement disorder specialist neurologist. I'm Larry Gifford you can connect with me on social media at Parkinson's on facebook twitter and instagram. You can email us at Info at Michael J. Fox. Dot Org thank you you for joining us. Be Sure to check out the Michael J. Fox. Dot Org website for more information on Research Fox insight and Fox trial finder click on take action and looked on the third column labeled participate in research straight safe connect with Parkinson's community keep exercising. We'll get through this together Did you enjoy this podcast shirt with a friend or leave a review on. I tunes. It helps listeners like you find and support our mission. Learn more about the Michael J. Fox Foundation at Michael J. Fox. Dot. Org. Thanks for listening. This is Michael J. Fox thanks for listening to this podcast. Learn. More about the Michael J. Fox Foundation Work and how you can help speed a cure and Michael J. Fox dot org.

Parkinson Michael J. Fox Foundation Parkinson todd covid Michael J. Fox Fox Michael J. Fox Dot Org United States Michael movement disorder Dr Rachel Dolan cure Cova Parkinson's disease Covid New York Michael J. Fox Research Fox FDA Larry Gifford
COVID-19 Limited Series: Keeping Connected during the Pandemic When You Have Parkinsons

The Michael J. Fox Foundation Parkinson's Podcast

32:31 min | 1 year ago

COVID-19 Limited Series: Keeping Connected during the Pandemic When You Have Parkinsons

"Sabih, share to the healthcare workers you've been incredible this this moment called for financial response in an action and you providing it. We are so grateful. So. Grateful. So I really appreciate it. We really appreciate it. We love you. We thank you. This is Michael J. Fox. Thanks for listening to this podcast. Learn more about the Michael J. Fox Foundation Work and how you can help speed a cure and Michael J. Fox dot org. Navigating Parkinson's disease can be challenging but we're here to help welcome to the Michael J. Fox Foundation podcast tune in. As we discuss what you should know today about Parkinson's research living well with the disease and the foundation's mission to speed cure free resources like this podcast are always available at Michael. J., Fox. Dot Org. Hi I'm Larry Gifford I'm the host of the Bob Gas when life gives you Parkinson's I was diagnosed with forty five years old and like you I'm trying to figure out everything. I need to do to be healthy well and safe during covid nineteen pandemic. That's why the Michael J. Fox Foundation for Parkinson's research and I are teaming up to launch this limited series podcast. Each episode is designed to help people with Parkinson's disease and their care partners navigate their way through the covid nineteen pandemic. Joining me each episode is the foundations owned board-certified movement disorder specialist Dr Rachel Dolan. Hi Rachel. I'm so glad to be with you. I am still working from my home in New York City. So apologies as usual in advance if you hear a little bit of the city life in the background. On today's podcast, we are going to focus on connection Napkins to other people, but also to yourself into the moment, this is such an important topic for all of us especially during this time of social distancing but it's particularly important for people with Parkinson's who may even outside of a pandemic feel anxious lonely you're isolated. It's interesting. You talk about that. You know that sort of connection to the moment in the mindful. Falls into that category like being here right now and. I I like to make fun of mindfulness stuff, but really I do it. My wife always goes why do you make fun of you're actually practicing that stuff you're doing meditation you've got the care. APP. That you're listening to every night to go to sleep. So I'm really excited to talk to Natalie Cogan the author of happier now in just a few minutes. But before we get to that, let's connect on the latest of how Corona virus may be impacting Parkinson's. It's a segment that we love it's called. Here's what I'm hearing. What are you hearing? There are reportedly Rachel third of covid nineteen patients that have neurological symptoms I was reading in the. Journal, Parkinson's disease which by Golly that's great. Reading scientists were discussing correlation evidence linking the increase of Parkinson's diagnosis worldwide in the past century in part to the Spanish flu outbreak in one, thousand, nine, hundred. If there is a PD connection scientists believe it could contribute to the expected exponential growth over the coming decades, which would compound the effects of Parkinson's disease both financially and socially in the coming years. It was a lot. There wasn't there. So. I like to try to break this down into broad categories basically what we know and what we don't yet know. So, what we know is what you said some people with Kovin Hab neurological symptoms, and we're learning this as we go from these reports that you mentioned. And and these ranged from smell loss to stroke to seizures to headache to other kind of vague neurological symptoms. The people who have these symptoms typically have a more significant or severe course of of Covid but we need to learn more about who gets these symptoms and why they get these symptoms so that research is ongoing. What we don't know is how and why these symptoms happen is it because Kobe is directly affecting the nervous system and the brain or is it a byproduct of the infection with the virus? Is it because it's causing inflammation because other organs are shutting down or not working as well or are there some other sort of widespread body problem that's affecting the brain nervous system? We also, of course, don't yet know the long term possible neurological effects of Ed. Weather this virus will contribute to an increase number of Parkinson's diagnoses or other neurological conditions. For example, the number of Parkinson's diagnoses did increase after the nineteen eighteen pandemic but that's a link or association. In other words, a cause and effect relationship was never established. So asking whether the infection could be and so so-called initiating and using my air quotes. So they could it per se set the set Parkinson's disease in motion or bring out symptoms that. Perhaps may not have arisen till later. Maybe they were like dormant in this disorder triggered them. Exactly. That's perfect. Word trigger. So so who do now with which the researchers that you mentioned are doing is research and follow people closely follow the numbers closely to see if the number of Parkinson's diagnoses will increase and one way that we can do this and one way that we can see if people with Parkinson's or are being affected by the virus if. Their symptoms are increasing right now is is through something like our Fox insight survey on on Kobe, and that's open right now on Fox inside dot org where people with without Parkinson's can tell us if they if they get covert if their symptoms are increasing in that sort of thing so that we can gather this data in real time who it's a lot. You, have the. Question. Complicated Question Culpa get an answer. Imagine that. I I'm hearing Rachel that covid nineteen is increasing anxiety among some people with Parkinson's anecdotally I. Know I feel it. My friends field a study of people with Parkinson's in Iran found that of the one hundred and thirty seven participants with PD in the ninety five care partners twenty-five percent report extreme anxiety while the control group which had four and forty two people without pd only four point eight percent reported extreme anxieties. That's like a twenty percent difference repeat what you said I mean, I'm hearing a and I'm feeling this as well so. Anxiety, is running high for many of us right now and it's perfectly understandable why it is right I mean there are so many uncertainties so many fears about our current situation and for many people with Parkinson's anxiety is a symptom of their disease on a regular day without a pandemic. So then when you add everything else that we're experiencing right now on top of that, it makes perfect sense that feelings of anxiety would increase. I think the main takeaway here is that it's really important to know that it's a possibility to take it seriously, and to know that there are many treatment options to easing Zaidi's so whether that's medications that your doctor can prescribe talk therapy that you can get virtually now online support groups that you can connect with or mindfulness strategies that you were mentioning that you make fun of earlier at the top of this. More over. Or even exercising to boost your mood and get your mind off things limiting your news intake. If that's what's setting your anxiety and motion or as I mentioned the mindful new strategies that will get into with Natalie a little bit later in the podcast there's really so many things that are really individualized. I, it's really important to think about what set your anxiety and motion and what strategies work for you. Keep listening because there's more to come. Exactly I'm hearing the dogs are now being trained to sniff out covid nineteen just like some cancers and more recently I know dogs are now being trained to sniff out Parkinson's disease. How Cooler these dogs that's exactly right I. Mean I am biased I love this story because I'm a dog lover and dog stories about dogs with jobs always get me but I, think this is super. Interesting work and it's ongoing and Parkinson's and cancer as you mentioned. But the idea here is really the dog's can use their noses which are really powerful tools to sniff out specific compounds that are produced by our bodies in certain diseases. So the hope is that this could lead to early diagnosis or early detection of disease possibly even before we show symptoms. So in something White Cova Da. Where many people have the virus but don't show symptoms that could really make a huge difference and the same thing goes for something like Parkinson's where many people have nonspecific symptoms like smell loss or constipation for years or even decades before they showed the classic movements and. Tremors lowness and stiffness, which leads us to a diagnosis. So if again if we could sniff those out and and diagnosed much earlier on, that would be huge. That would be awesome. This this trial that they're. Trained six dogs in the training of the dogs being given corona virus patients face masks to sniff to discover if covid nineteen has a unique odor, which then can be identified by the dogs who have all those what three, hundred, million olfactory receptors which are. Significantly more than we have and especially me who has no sense of smell at this point. That's right. I mean it's it's so amazing and dogs I mean mine just walked back in so. Rally. He's he's doing well, I think he's back to napping, which is his usual posture, but but I mean, they're they're amazing companions I, mean speaking of anxiety exercise. Their good on so many levels. covid nineteen is tissues on ways we never imagined. Around the globe individuals, families and nations are rising to this challenge with courage and grace. I'm especially. Richard Schmidt he's quick response to this crisis for the foundation is making this commitment. We will flesh researchers needs. In any way we can. He created on Earth Science moving forward. Release Possible Disruption. Pull through this and strong never. I, guess, today is Natalie Cogan the author of happier. Now, I- Natalie I very weird talking to people who have Parkinson's in their life people with Parkinson's and their care partners. How does someone who is living with a degenerative brain disease and all the associated symptoms find joy on a regular basis? You know it's such a it's such an important question. I think it's an important question for all of us because we're all dealing with. So so many challenges you know one of the I think really important things to remind ourselves is joy isn't extra you know it isn't something that is a luxury. Joy is really the fuel that keeps us going and for me I think one of the most powerful ways to look for joy amidst. So many challenges is with gratitude. I started learning and practicing gratitude years ago, and one of the things that surprised me and the research supports ghost is bad. At just the simple act of pausing a couple of times a day to just simply honor some of the small good moments in our lives with our attention with their appreciation It has really incredible. Affect the teams like this, very, very simple thing that can't make a difference, but it really does and particularly research shows during times of great challenge practicing gratitude not only help us fine moment of joy, but it actually helps us to feel more resilient and that because our brain unfortunately house, what's called the negativities bias where much more sensitive to anything that is wrong. and negative Ben something that's positive because our brain is trying to protect us from dangerous. So when we're going through challenges, the negativity by gets even stronger and more sensitive, and so we have to I've been using expression. We have to fight even harder for those moments of joy, which means we have to practice more and more in gratitude, and so that is something that I invite everyone in the community to Overdo it on gratitude especially in how you begin your day. One of the things that I cannot recommend strongly enough to start your day with a gratitude practice and it can be so simple. Just jot down. Read specific, things. You are appreciative of the smaller by the way that better the more specific the better and begin about begin your day that way because not only will you feel those little bursts of joy at that moment research shows that the way we begin our day has dramatic impact on how the day goes, and so he begin your day with a little bit of gratitude. And that you feel from practicing it, it allows you to find more of those moments of gratitude. Enjoy as you go through today my wife and I were talking the other night about how when this is all over. We're going to go on vacation here do this and we're going to do. Like we were trying to find joy in the future somewhere else. I can't believe that we'd be the only ones looking that way. Larry. That's such. A wonderful point because actually going to say that I love that you brought that up sometimes folks share with me that listen I just I'm really struggling I can't find anything I'm grateful for right now. So looking for moments of gratitude for the future is an absolutely wonderful things to do so For example, we as human beings, we experience a lot of joy when we have something to look forward to and I'm not trying to tell you your next vacation is not going to be amazing but it turns out we actually experienced more joy planning a vacation though we have it or we're excited to go to the movie, and then we go to the movie. We feel joy we humans our brain loves to anticipate. So it's a wonderful way. To practice gratitude amidst this crazy challenge time is to actually think of what will I be grateful for when I get to go on vacation what will I be grateful for when I get to hug my friend what will I be grateful for when I can you know go into the movie theater again and so that's another way to actually practice gratitude by ask yourself this question. ooh, I, thought I was doing it wrong I looked at right Doing it right. I. It's so funny. You know one of the lessons I think I'm learning is to not take things for granted and Larry and I were chatting about things that we're really missing and travel and vacation layers said he's even missing his work travel which I don't know find quite there yet. But but one of the things that I'm doing is making scrapbooks of. All of my vacations and and I'm really reminiscing and being in those moments of all the travel that had really thinking gosh. I'm not taking for granted all of that travel that I had so really practicing gratitude and reminiscing and being in those moments, but also planning my next travel. So I am kind of having all of those moments wrapped into one an also. Using all of the spare time that I have. Leftover now with making these scrapbooks my vacation so it's it's really neat to do those kinds of things. Oh, I think and again. So think of everything was just talked about. So I talked about practicing gratitude and the presence right every day begin with gratitude Larry You talked about practicing gratitude in the future, right so again, think of something you really looking forward to and ask yourself what am I grateful for about that experience and Rachel you're talking about practicing gratitude for things that. Have happened in the past and how much joy that is bringing you and I love like you know and I know listeners know we did not plan the south but I love how organically what we've brought up for everyone is there isn't a the there isn't a formula about practicing gratitude. It's wonderful to appreciate things from the past from the present from the future. What really matters is that you truly pause and honor those moments with your appreciation that you truly honor them with your. Because otherwise, we're missing on that joy because our brain is either taken for granted or are negative bias as an over overdrive, and all were noticing about our lives are negative things, and so this is actually I love this conversation because there's many ways to practice. What is important is that you practice you know I have this analogy that gratitude is like Broccoli right like I think we all know that is good breath right? Like Broccoli has a lot of vitamins and nutrients, but it's only good for you. If you eat it like knowing the Broccoli is good for you. Does, not give you the nutrients and it's the same of gratitude. You know I find like when I, you give big talks you know my on state now it's all virtual but I I ask people how many people here know the science that shows that gratitude is really powerful for your well being most hands go up and then I say how many people here practice gratitude daily and very few hands go up well, it's the same thing right knowing that gratitude is good for us doesn't give us the benefit we actually have to practice. So eat your Broccoli and practice your. Love that. Wouldn't be things we really wanted to talk about his connection and it I think a lot of us are spending a lotta time connecting with others but the way that we're doing that now is through technology and we're spending a lot of time on technology. So I think or we're adding it to our to do list. So I think it can become a little bit of another thing on our to do list or other chore. So. How can we turn ourselves through that and knew the importance of connection? It's a it's a beautiful question ratio because so many. I've been doing so many virtual sessions companies, a medical workers and teams and During the first couple of weeks of this crisis are couple of months, I should say Kinda the question has been coming up like how do I stay connected? I'm feeling isolated. So we talked a lot about how you know you have to make it intentional. You have to make it a regular thing right on your to do list and the question you're bringing up now i. Think reflect just the shift right now we know we're in this for a while and yet it doesn't feel good when it's routine right to stay in touch. So what do we do? So a couple of thoughts one is to get a little bit creed about it and obviously you know everything I'm saying is within like stay safe right but to get a little creative. About, it so I know some folks, for example, for a while we're doing like zoom happy hour zoom book groups, and then like oh I feel really exhausted within don't be afraid to change. Right? Don't be afraid to shift what you're doing. The other thing is to also recognize just when you're thinking of connecting one of the things that really helps me to think about. Like The Times I've connected with people and how it made me feel and that's for me shifted from a to do list. I don't like. Oh I'm really looking forward to this because I think it's really hard to lose track of that's all I'll tell you. So my best friend and I we live like twenty minutes away from each other but obviously, we haven't seen each other. And a couple of weeks ago we started doing a Saturday like our on. Do you know we're sitting in our living rooms and just hanging out and then this past weekend it was time dialing and I have the Roman Rachel that you just described. I had this like like is this just to do like I should go do something else whatever and I just took a moment and I thought to last Saturday and how much fuel and light and joy. I. Felt after our session and that like encouraged me to do it. So I think sometimes just reminding ourselves or what it feels like and the other thing is to not be afraid to have to take a break right to not be afraid to say. You know your friends like is I need to skip this week's check in or zoom session just like need a break or to change the format. A Lotta people been saying they're really sick zoom the really sick of like video and there's lots of lots of reasons. That's true. It's actually exhausting. So make it a phone call go outside the other person goes outside and their plays make it a phone call or I had a couple of people say to me that they've started writing many more handwritten notes to their friends just because there's so much technology in our lives. Right now. So that's a beautiful thing. So those are just some ideas, change it up, give yourself permission to skip some of any of the regular things that you have going on with family or friends doesn't make you horrible human being you may just need a break and remind yourself of how it actually makes. You feel because that helps to take it from a to do to something. I WanNa do it's interesting. You you. You took it from the connection with the other person to check in with yourself how important is connection with yourself? That is something that is essential that. Actually I'm social media recently sharing just a lot about how you know. One of my greatest learnings on my life journey has been recognizing that my relationship with myself is something that needs cultivation attention in a way our relationship at ourselves is I think the most important one in fact, how treat others is rooted in how we treat yourself and so one of the things that I'm so encouraging folks especially during this time where it is so hard there's so many challenges is to really recognize that you have a relationship with yourself to ask yourself what is my relationship with myself am I treating? Myself, as I would have friend and my cultivating a kind friendship with myself and one of the ways to do this one of my favorite little practices is we just nurtured Larry is to start the morning I start most mornings I'm not gonNA say every morning but most mornings with what I call five to ten minutes of stillness and silence. It's not always meditation. In fact, I'm just I'm very open about the fact that I don't meditate all the time or regular lake, but just five to ten minutes to just sit in a spot that I like with tea, and that's my time to check in with myself. How am I feeling like? How am I? You know what I'm based on that maybe there's something I need to shift or maybe it's just I need some encouragement for myself and I think it is so so important to recognize that we can and should need to be our own friends our own supporters. Always the particularly right now my son does that automatically he comes out in the morning and you'll kill get the chair with me I, we don't have the TV on or anything he'll just come out in the living room. We'll sit in a big comfy chair. It'll just sit there with his blanket and it'll just like. He's hatching, but he's drink. You can tell me sort of like getting in touch with with with the day and himself and that's kind of cool how. These ten. I think we can learn so many things from our kids. We have many of these natural instincts to do the things that are important support of ourselves when we're young and then like we unlearn them, you know what I mean we get we think we grow up we need to focus on our work and taking care of everyone else and we forget that we need to do these things to ourselves. So I, think your son can be our inspiration I think there's a lot that our kids can teach us. Leery, telling earlier about anxiety, you know the the heightened uncertainty, all of us are feeling and natalie. I'm wondering you share the meditation is not really for you and you know he was talking a little bit about some of the mindfulness things that he's been a little bit more open to recently. But what are some of the strategies that other people may be open to exploring during this time? Mindfulness is just simply about how do we do something that really helps us to be present in the present moment and to flow a little bit with it to not fight with ourselves or reality so much mindfulness in many ways, there's simply about. Learning, to witness selves and our reality instead of judging it or only. Things in it, and there's so many ways to do that. Right one of the things I do for my my practices every day I go for a walk and for me, that's my unless sometimes I listened to my things sometimes I listen to a book or music, but it's just something I do I feel inflow I get to not have to do so much I kind of witnessed my experience. So maybe it's doing some watercolor 'cause it just. Allows me to you know be and do something close. So maybe it's a little art maybe some doodling maybe you read a couple of pages from a book that kind of feels like a hug to your heart you know maybe you people garden and like to me that's crazy that feels peaceful but to me like I'm a New Yorker like I I, don't have a green thumb on my body but for some people, that's a wonderful activity so. Anything that helps you. Feel like you've caught up to yourself. It's about noticing the grades Buddhist Out Masters said that one of the greatest meditation practices is to drink tea but he said, can you drink tea only drink tea? So that means not at the same time thinking about your to do list not at the same time scrolling your email writes a single tasking just doing something. And paying attention to it savoring something as a mindfulness practice right you can either eat an apple and not notice beaten apple or you can like really eat an apple and be paying attention to how it tastes and smells and how you feel. It's whatever gives you that feel of like for me it's a deep exhale, but there is no should funny story. My. Wife had bought some pears and was chopping them up before dinner as a appetizer and I was chewing on this. Son Have had some of this parenting because, Dan, that's an apple. So I don't have smell. Apparently cases though. and. I'm not even a fan. I don't know why I thought. It was a pair but it for me it was a pair just A. But I. I grew up with my mom saying that happens for a reason and we're ending each episode by asking our guests to share a lesson that they're learning from covid nineteen So we're wondering what have you learned just sorta in general what you hope people. In the world learn from the experience. I love this question. That's a beautiful question. I love that one of the things that I have learned is that we have so much more in common as people than I thought we did you know again my work I'm really I. It's a huge gift that the work I do is all about helping people right? You know I teach emotional skill, and so this is what I've. been doing now and just really had the honour means probably you know tens of thousands during people. During this crisis I've been able to either do something whether interact with and when I keep learning is that we have so much more in common like we can have such different lives and such different circumstances, but we have so much more in common the questions people are asking me from. All walks of life are similar right? We WanNA know how to help our families get through this. We Wanna find a little bit more east further. So we're worried about our loved ones and where appreciating added time at home and we're frustrated about it. So that's been a really powerful beautiful to me that we have we all have more in common than I think we realized I do. Think the other less than we're all learning and this is a lesson. I. So hope that we don't forget when this is all over because this will be all over. We will have a life where we're not in the sphere where the virus is not affecting. So many people are taking so many lives and the lesson that I hope we don't forget is what really mattered during this time. Because I think the lesson we're learning what really matters human connection what really matters is having people in our lives that we care about and having people care about. And, I really really hope that that we remember that at the end of the day that is more precious than more valuable than anything. So, well-spoken and so true Natalie Cogan so much for being with us and for sharing your thoughts and your expertise with our community. I've learned things from you and I feel elevated from the shaft. Thank you. Natalie. KOGEN is the author of happier now available wherever you buy books all right Rachel. What are the three things that you are grateful for Man I am grateful for you. For this for the chance to do this podcast, it was really really fun. I'm really having a good time doing it and I think about what I think about like this podcast and other things that I really fun things. I get to do in my in my daily job and the you know the information I get to share I'm grateful DAWG WHO's sleeping at my feet. And I'm grateful for my nice apartment in the shelter that I have here. A. Grateful. For my son in the morning, cuddles wake up. I'm grateful for my wife and. I it just just enduring me through this time of working from home. And you know I'm grateful for lego stocked about finding something that you can focus on the main. Or whatever you can just sorta get back into your yourself and be with I spent about a half hour and now building Lego by myself. was. Cars and. Planes and boats and. Semi. Inspired by the Lego championship that I saw on TV and my my son has a playroom. So I go in there lego he plays cars. We don't even remember act with each other, but we're just tell we end the day. That's the kid in you. That's right. Rachel, thank you to I'm happier. Are you happier? I'm always happier when I'm hanging out with you Larry Stop It. Now I'm blushing Rachel Dolan MD has president of Medical Communications for the Michael J. Fox Foundation and a board certified movement disorder specialist neurologist, and I'm Larry Gifford you can connect with me on social media at Parkinson's pot on facebook twitter and instagram email us at INFO at Michael J. Fox dot. Org Thank. You so much for joining us be sure to check out the Michael J. Fox dot org website for more information click on understanding Parkinson's and looked on the third column labeled education and Inspiration under webinars. You can also find a recent Webinar we did featuring Natalie Cogan stay safe find a little joy everyday keep connecting to yourself and others, and we'll get through this together. Did you enjoy this podcast shirt with a friend or leave a review on. I. Tunes Helps Listeners like you find and support our mission. Learn more about the Michael. J. Fox Foundation at Michael J. Fox Dot Org. Thanks for listening. This is Michael J. Fox. Thanks for listening to this podcast. Learn more about the Michael J.. Fox. Foundation's work in how you can help speed a cure and Michael J. Fox dot org.

Parkinson Rachel Dolan MD Natalie Cogan Michael J. Fox Michael J. Fox Foundation Michael J. Fox Dot Org Parkinson's disease Covid movement disorder Michael Larry Gifford Larry cure New York City Larry You Anxiety Kobe Dr Rachel Dolan Sabih
COVID-19 Limited Series:  Finding Positivity with Parkinsons in a Pandemic

The Michael J. Fox Foundation Parkinson's Podcast

37:58 min | 1 year ago

COVID-19 Limited Series: Finding Positivity with Parkinsons in a Pandemic

"Today on the Michael J. Fox Foundation Parkinson's podcasts well I. Think you know the researchers are kind of like the the official score keep up in the booth there they're looking at a wide range of folks in trying to identify patterns so that they can get away to cure it eventually we hope but we're the players on the field there we're walking through it every day. And so they they can study my brain but I have to use my brain and they can study your brain, but you have to use your brain. You don't stop thinking you don't stop living or any of those things you adjust keep on keeping on as they say. This is Michael J.. Fox. Thanks for listening to this podcast. Learn more about the Michael J., Fox Foundation's work and how you can help speed a cure and Michael J. Fox. Dot. Org. Navigating Parkinson's disease can be challenging, but we're here to help welcome to the Michael J. Fox Foundation podcast tune-in as we discuss what you should know today about Parkinson's research living well with the disease and the foundation's mission to speed a cure. Free resources like this podcast are always available at Michael J. Fox Dot Org. I'm Larry, Gifford, the host of the podcast when life gives you Parkinson's I was diagnosed with forty five years old and like you I'm trying to figure out how to do what I need to do to be healthy well and safe during this covid nineteen pandemic. That's why the Michael J. Fox Foundation for Parkinson's research and I are teaming up to launch this limited series podcast. Each episode is designed to help people with Parkinson's disease and their care partners navigate their way through the covid nineteen pandemic joining me each episode of the foundations owned. Board. Certified Movement disorder specialist. Dr Rachel Dolan I Rachel and I. Am still here working from my New York City apartment. So please excuse any background noise that my me out temporarily. So today we're talking about the importance of staying active keeping positive attitude and getting involved in research soon after diagnosis of Parkinson's I, for one am super excited to hear your conversation with Bill. Rasmussen. The founder of ESPN bill is eighty seven has Parkinson's and a truly positive outlook he has partnered with our foundation as an ambassador to spread the message of positivity activity. He will also be a spokesperson for a message we're calling embrace early engagement eighty seven. That's amazing. This was the first I'm hearing about embrace early engagement. What's that? Yeah. This is all about reaching people in their very earliest days in months of living with Parkinson's this is a really tough time for a lot of people. Understandably, people are trying to process with Parkinson's means for them and their future, and this is time that a lot of people hide their diagnosis. I hit mine. Eye Symptoms for like eight years. I just ignored them and then once I got the diagnosis I hit the diagnosis for eight months i. mean this is a real thing so true and it's it's time people high because they don't want to be treated differently. They don't want to be pitied but it it makes it more stressful right at and it makes the symptoms even harder to hide Oh yeah. For sure when you're hiding them, you're in your stress July crude who knows who doesn't know can they see this twitch? Then you're the stress actually increases the symptoms that's right and what are the other things is that it makes it harder or impossible? To participate in research during a time when they may not be taking medication and can make really valuable contributions to disease understanding and also testing new treatments with the potential to either slow or stop disease progression, we've heard so many times from people who didn't know that this was an option until it was too late to be part of some really important studies that are ongoing even today sounds like a really important initiative and and bill seems like quite a force to be behind it. He really is and and we met bill. We really just loved everything about him and his message. So we asked them to join our patient council with you varying. Yup to serve as an ambassador to share his message of of staying positive of getting involved of being active and and of getting rid of those feelings of stigma or shame that so many people experience early on with this diagnosis. That's exciting and as the founder of ESPN and I know you're a huge sports fan Rachel. Larry unless we are talking about the Green Bay packers in the days of Brett farve or dirt track late model racing. No nothing about sports well, it's very exciting for me because full disclosure while bill founded the twenty four hour Cable Sports Channel Espn Bristol Connecticut back in nineteen seventy nine I worked for ESPN for six years both in Bristol and in Los Angeles in the mid two thousand dollars to the early two, thousand, ten's I was program director of ESPN Radio Network, and eventually moved to Los Angeles to program seven ten ESPN which is owned and operated by ESPN ABC in the Walt Disney Company. But until today I never had the honor of meeting the man who made it all happen. About you Larry. So I learned something new today to. Embrace engagement is a great way to kick off. Here's what I'm hearing. What are you hearing sticking with the sports thing I hear there's a woman with Parkinson's in Los Angeles. Diong a world-class quilter. Facemasks with Los Angeles dodgers fabric to raise money for Parkinson's, and she's joining in honor of dodgers legend Kirk Gibson who is also living with Parkinson's disease. So cool to see how people are contributing in knees creative ways using their skills in new and different different ways to help people to help the community to help for the greater good and as I mentioned, I'm not the biggest expert you're ever going to speak to, but I really think it's great that this is being done in in Kirk Gibson's honor. Our Foundation knows him pretty well, and he really he is most definitely worthy of this honor the school. Boy what a what a legend is he in Los Angeles ca as Major League baseball continues to be locked down because of covid nineteen. Mlb Dot com is finding some really great stories to share including the Parkinson's journey of former Colorado rockies outfielder been petric. Now he was drafted in one, thousand, nine five he was diagnosed in two thousand, but he didn't give up the game. So. This Guy Played Major League baseball with. And not only did he just play it? He a year after his diagnosis. He built a home run off hall of fame Pitcher Randy Johnson which was great. But complicated because as he trotted the basis, Patrick says. Whether, he had a ground baller home, run his thoughts immediately went to pumping his left arm faster. So he his run would get off rhythm which I, totally get. Like I can't run. or I'll fall it blows my mind that he was able to play Major League, baseball that level and still succeed at the highest levels. Mine too I. Mean This is such a neat story and I am constantly amazed by what people can do with Parkinson's because sometimes it's so much more than what I can do without Parkinson's there are out there running marathons as you said, playing Major League Baseball. Sewing I. I can't so. So I mean, you know as I said I, mean oftentimes, there are people who don't give up a shouldn't have to give up the things that they love with Parkinson's you can adapt. You can be flexible and you can get around these things. Now, as you pointed out there, you have to live with it. You have to get around it. You have to be flexible. You have to meet this challenge and that's why at at the foundation we're doing. What we can to make this thing of the past to come up with better treatments now and to do what we can define cure because it's there at it sucks and there are things that you have to do to get around it now But yeah, stories like this. Just as you said, blow my mind because people just come up with amazing ways to live well with Parkinson's and to do the things that they love to do do I hear. something. In the background, there is a truck ruined by. It's so much quieter than it usually is this is quarantine in New York City. So this is this is not a usual day in New York City but but that's my New York City apartment. All right now back to the real theme of the PODCASTS I'm hearing the American Academy of Neurology issued some really new guidance for neurologist treating people with Parkinson's during the covid nineteen pandemic. Yes, and this is something we see associations like the a N., which is a group of neurologists do when there is a significant new factor like the pandemic that affects how doctors and patients think about care as as usual, and so one of the recommendations is to get telemedicine for usual visit. So regular. Non Urgent Care, and we've seen a shift to telemedicine in the past couple months for regular care. So the hope is that this could be one way to get regular non urgent care for the future. This could decrease risk of exposure to the virus out lesson risk of the virus for the future. So that's one recommendation moving forward. What's interesting about that and I had a telehealth session with my doctor and then now he's followed up with email actually have more communication with him now that I did before. That's right and I think a lot of people are seeing that we also have a lot of resources. We know that there's a huge learning curve for doctors and patients for telemedicine. So we have a Webinar Larry that you moderated about the topic of telemedicine. We also have some resources about getting the most out of your telemedicine visit on our website for the very latest on what's happening at the Michael J. Fox Foundation for Parkinson's research be sure to check out. Michael. J. Fox Dot Org. You can also click that email sign up part in the upper left hand corner and they'll send the information straight to your inbox which is fantastic. Make it easy for you. covid nineteen. Ways, we never imagined. Around. The Globe individuals, families and nations rising to this challenge with courage and grace I'm especially spread. The research is quick response to this crisis for our part the foundations making this commitment. WILL FLEX researchers in any way we can he created on earth is moving forward. Possible disruption. We will pull through this and be stronger than ever. Okay. So one of the issues we're all dealing with during coronavirus sustain active our guest today is a huge advocate for giving your body in. Motion Bill Rasmussen lives in Seattle and was diagnosed with Parkinson's in two thousand fourteen, and by the way he's the founder of ESPN who hello bill good morning, Larry How's everything today? Well, it's beautiful sun is shining and I'm still walking. So that's good news every day. Yeah I'm glad to hear you say that I'd say that frequently and then the other one that you have to uses if you're felony better, the world couldn't stand you. If I was any better be. Well. I don't know about that I I I have a positive approach so as you've obviously Discovered and I like to try different things and experiment and some experiments turned out pretty well as ESPN is you know, yeah I wanNA thank you for creating that company because it gave me a really an opportunity to cover super bowls and World Series and NBA Finals Award, shows and meet a ton of great people who are lifelong friends and just thank you for for taking that big leap of faith. You're very, very welcome and I I really. Enjoyed, doing, it seemed to be seemed to be something that should have been done a long time before that. But the technology wasn't there and for a non technology guy, the only word the only big word I ever learned with geosynchronous that's all. That I don't know anything, there's a satellite up there somewhere and it works. That's what couch. That's what matters. Especially, during these covid nineteen days, we are all missing sports who Oh. No question. I. This is almost like being back in the fifties only had a game or two a week on football game or two on Saturday. And that was it. You know there's wall-to-wall sports idea where you can turn on any time as their night to any one of dozens of channels inclined baseball football, whatever none of that existed. So this is. Having it all taken away is really very difficult. Lots of lots of kosher having withdrawal symptoms. Well, I turned on ESPN last month they were doing a competition of Stacking Cups and remind it reminded me of the old days when they were doing lumber jacking. Yeah. We had some great stuff how `bout. Irish. Hurling round. Limerick Ireland or someplace that was kind of intriguing. That was great What what? What a journey you've been on six years ago your journey changed a bit though. To get the news from the neurologist that you have Parkinson's. Well. It was interesting. You know obviously. Noticed that things weren't going. The way they always had gone I was becoming. flexible I. Guess you would say things were. Bothering me but I didn't think it was anything significant I had visited my regular physician. A year or so before and I had just a slight twitch and he thought it might be. what they call the essential tremor and but it got a little worse. So I finally went and saw the logistics and. He we did much tests and he said I hate to tell you this I'm sorry to tell you this but you have Parkinson's my mother had Parkinson's. So I was familiar with a little bit of the background that very much. So. I set out on a journey to learn as much as I could about it. and. He quickly explained obviously, it's not A. Death sentence you'RE NOT GONNA die in three months or three years. But you're some various parts of your body aren't going to react properly because the brain isn't able to keep doing what it's been doing all your life. But there are ways to get around it, and one of the ways obviously is exercise and. Medication and and a good attitude and I have. The medication and the exercise twice a day and walk all I can and Try to keep those things going. So it's It's I. Think for me it's been a question of. What can I do to keep? Operating about at the same level that I was before I still go and speak to people of course they can. I thought for a long time that. I'd have my left hand is the one that has the biggest twitch so to speak. I thought I'd keep behind the podium or this or that in one. After one event they sent me a tape and I looked and I I wasn't very effective and so at that point I said you know what? This is a fact of life. It's not anything to be embarrassed about you know people catch cold people break a leg and people. Knock their head up against the wall or whatever. And that's okay. So why isn't Parkinson's okay and sudden as I began to look into it and began to? Ask More and more questions. For some reason Parkinson's is one of those diseases that people. Want to hide and I don't know why. you can't hide it. I mean. Changing. So I can't back into ground or at third base anymore. Well. That's okay. I I used to do that sometimes many right anyway. But. I just think a positive attitude and everything we do is is great but it is especially important for anyone who is diagnosed with Parkinson's. Now when you when you were diagnosed, did you embrace this right away or did you you take some time for me I? It took me about eight months to to just sort of process the the Saint Got Parkinson's, and then I started telling my story of it well. My my daughter is a nurse Algae radiation I choose here with me. When he said I'm afraid we have bad news. She thought instantly is something to do with cancer and so on. And the brain or whatever. And he said Parkinson's so she was relieving so. Having seen my mother I knew something of the progression not all the details obviously because you know that unless you live it. But I, my first thing was to start asking questions is actor was not only what can I do about it but what are the impacts going to be? Any said a lot of that is going to be up to you. And a lot of you can't control. So I just from that day on, I set out trying to find out as much as I could about it. But I didn't. have any. Public announcement, I didn't even care to me. And then after. Let's see I. Guess It was last summer last summer. Let me. You. Big. STORY WITH ESPN. And Then so when I decided, you know maybe I can help somebody and if I can help one person that's great. If I can help to even even better. What was the catalyst to go from just being the person living with dealing with Parkinson's to becoming that vocal advocate That's a really good question I. I guess I started seeing people in a different light that you know. I met obviously had a couple of people who have Parkinson's But interestingly, enough one of the people you do you know Mike Salted you come on him in your time yes. Yes. Of course, I Mike Salt is ahead of PR FOR ESPN. Yeah. He had some difficulties with some health problems zone. Here's an inspirational story about dealing with his kidney cancer. Yes. Thought about going public with it for a long time he said finally decided to and. He got a lot of response as I did. And he said one guy wrote and basically talked about his brother had the same problem that Mike had and that Mike. Message. Motivated his brother to go and have some surgery and get taken care of. And he said Mike, you say, my brother's life. That's pretty powerful. Yeah. and. So the ESPN has the resources to. Help write this story and got a distributed and. That's what we did last year. And got involved obviously moved forward and began talking to Michael J. Fox folks. And here we are. I think I think people should talk about it. You think about it should. What think individually, what can they do better each day to help themselves and as they help themselves, helping their family and everyone around them how has keeping active helped you deal with your Parkinson's thank you. I. Think it helps enormously I. I mean I. I have a maybe it's a routine that. Everybody does I. Don't know but I I wake up every morning. With a positive thought what am I gonNA do today I mean I'm I think ahead obviously I. Know I was GonNa Talk to you this morning I didn't wake up and say, oh I'm GonNa talk to Larry I've known this was going but each day. I'm. Make certain that I get all the exercise and I walk. Around the neighborhood because we can't go to tracks or anything any more at this point, but as far as impacting mean I. Can't dance particularly well, but then I never did so that I can't play Parkinson's. I still, I still write things I'm in the process of. Hopefully writing a book that get published Just be positive. Do Things I think if you? Are An active. Person both physically, and mentally it's going to help with Parkinson's. It's going to extend the good time of your life. I'm going to be eighty eight come. October. So Wow, I. figure I've got ten or twelve years more to go and. Work hard at it. Good for you. That's a great attitude. I love it. I think you're counting up to one hundred as if I do my math correct. Oh yeah hundred. To by hundred. You know if you lived in one, hundred, thirty, six, thousand, five, hundred days plus twenty five, Lee Beers. So that's easy. You know just say check check them off the calendar. That's right. That's great. How is your community the community of people that surround you how they reacting to what you're doing? Oh there many of them are amazed but most of them are just encouraging. WE'VE GOT THERE'S A. A small group, very active with people and scheduling events that we can do, and I think meeting other people and talking to people who you look around the room everybody has Parkinson's it's okay. We don't even talk about quote Parkinson's per se it's. One fellow plays he's seventy one years old still placing the softball team won the national championship last year. Wow. For All old old guy softball and that's a terrific attitude. Yeah. That's. And I I said, you don't need anybody come out. Be Fodder for whatever because I don't know. I could stand up to swing a bag. I shouldn't say that I'm sure I could swing a bat. and I can throw a ball and I throw a catch. That's okay. and other people are doing the same thing. One lady with Parkinson's is A. Driver for one of the companies that picks people up and drops off so we don't have any commercial mix ups their. People you know everybody knows. Everybody tries to stay active well, not everybody but so many people. and. Of course, you gravitate to those folks who are active and they you know same with me. Hey Bill I believe people with Parkinson's are probably more prepared to handle the pandemic than most because our disease is so unpredictable we're already living our our day by day not knowing what symptoms may flare up. We're used to life being uncertain. But what you just said is absolutely correct that we've been we've been in effect we have our own pasture with a fence around it that we have to play end so to speak. And other people were so stunned that they you know they can't resist. Going out the front door and meeting people and going here and going there. And I think, yes, we are probably better prepared. as you know, the virus started here in Kirkland Washington which from where I'm sitting right now talking to you. Is out the front door down the hill and turn left and I stop I'm already there. Wow. Listen less than two miles from here it was knocking on your door. Yeah, and everybody was quite concerned Oh. My you know what's going to happen what's going to happen well. You know. Keep. Keep doing what you're doing, and we we I walked the streets of the neighborhood and a lot of people now. and. The intriguing thing is, now, of course, we all have to cross the street we can't. Stop and talk to each other we have. Ten or twelve feet or whatever it is between us, which is fine but I think the Parkinson's. Forces you to. Consider. A little bit more advanced, what you might want to want to get done if you're going to go out. And about and You know I don't go into grocery stores or any of those kinds of things as far as the pantothenic concerned. But then because I don't drive I didn't do that very much before right? Actually WanNa go to baseball games, Football Games, but you know two. Or Basketball Games. But until his pandemic thing is over you know they can't even can't even think about. That kind of stuff. I'm I'm guessing you might have a unique perspective on what's happening born in the middle of America. Great Depression, are there lessons maybe about human spirit entrepreneurialism or the importance of community which can apply from that era to what we're going through today? Oh, absolutely I. Was Born nineteen, thirty two. and. What I remember, and then you probably room in the same thing says, we went through the depression and we were really young kids and by the time. Pearl Harbor happened in nineteen forty one we old enough to start appreciating. Rationing and you know the rationing coupons and no gas and no sugar, no food and meat, and all of those different kinds of things. And I think that. Put Some Some. Solid. Solid. foundation under all of us and and I think that's why so many people from the thirties. Were very successful in life later on. We were taught some pretty severe lessons because of the depression parents losing jobs people losing. It was just amazing. But We survived and And I think it. From my from my own personal point of view, I can remember my father was always very positive. Telling us we can do what we want. We can accomplish a lot in America. This is where we live. This is what we can do. always take advantage of opportunities and. They used to say we know we we might not have very much food, but he would figure out a way to make sure we had food. So everyone can have a meal and. His only tenant was if you put it on your plate, you better eat it I don't WanNa see any food waste. which that was a good one I remember that lines. Sure that came from that era I. Heard. The same thing maybe slightly different words with the message was the same. That's right I. Think I think it all stems from that, and then of course, during World War Two everybody was. So patriotic we wanted to beat the bad guys. And I had a lot of my father was one of eleven children. So I had a lot of cousins many of them served in the. Army and Navy, and Marines and They were just a little bit older than I was my father was the youngest and his family. But Yeah. I'm I'm a strong believer that that silent generation that nineteen twenty, five to forty, five born in that depression era. Is it wasn't trial by fire and I don't know what else could be, but we survived and. Countless countless people have gone onto me to enormous success. Born and raised in that era. Yeah. We all experienced things in life which prepares to deal with future events and unique ways. Are there any lessons that you learn through the founding of ESPN that you've been able to apply to dealing with Parkinson's? That's a good question I hadn't. Well I guess one. Ounce when you have Parkinson's that was. Just, then the announcement that I didn't have a job. was kind of jarring that was probably more jarring than the Parkinson's and. I look back on it. Tells Day weekend nineteen seventy eight. Working for the New England whalers, in Howard, ball and Colleen Howe decided that I was. No, longer indispensable, I was dispensable and she called me on her way colleen call is she was at the airport. And she said I really want She got all excited and then plus about you know I didn't WanNa do it this way but I had been the executive director of the how enterprises they they were business family top to bottom and. She said, we don't want you back in this hour and a half to catch plankton by. So. That was that was pretty jarring. and. That's not exactly the way that the HR folks would handle a dismissal today I think I, don't think. So it's interesting. You got fire, but he didn't. He didn't let it get you down you you've just sort of brushed it off and not start business. Yep just have to keep going. Keep, moving. Yeah. I had three kids in junior high school in College. So I had one in each at each level and when we went through that they were all concerned by said. Display competence to them that we are going to make it. This is fine. We'll get through this and we did. And they all turned out just fine. And now I'm waiting. I've got seven grandchildren and. They're starting to get married. So I'm if I keep getting heading toward one hundred that might have. had. Some great grandchildren before long that's right and I have to stay healthy for that and I can't let parking to get me down with them. That's That's a no no. Positive I love that. You know we're we're living in the sports world through a global pandemic with Parkinson's what brings you hope. You where no matter who we are, how old or how young we are. We're all granted the same amount of time to sleep in this. If we go to sleep when we wake up, you know it all comes out even at the end. And I wake up every day and I I start off very positively every single day. I don't leave my office messy I don't leave the bed UNMADE I get up and start today and I usually plan ahead I've got one or two things that I'm going to get done I was looking forward to this conversation this morning. And It's pretty it's a pretty exciting world we live in if you give yourself a chance. And? Look for things to do look for positive things to do and I think. One of the great things that we can all do is. Help each other get through these things like Parkinson's pandemic and everything else. And it may only be a word or action or something. and somebody says, you know that you made my day better well, that's great. I do I, get tired and so on some days and do I have a bad parkers of course? But I. I always know there's a better one coming that keeps me going and hopefully it'll others going as well. I. Think You You make a lot of people's days I know I I'm really my days off to a great start because we're having this conversation. Well. Thank you I I feel the same way I. I. Can find lots of things that make life make me smile and make me feel better and. And hopefully be able to do things to encourage students in college business school or whatever or corporate groups only speak. ESPN story opens a lot of doors for that to be able to talk to people. I, think me talking to other people helps me as well. Feed off their energy and enthusiasm when people ask questions about one thing or another. And we can. Have a good conversation like we're having now. And we feel better as we walk away and we can do something maybe to help another person. It's really interesting when you share your story how it really it comes back at Ya. It you you you end up. Learning more about yourself and feeling more positive and more energized and and So so I if feeds sort of your your health and your happiness. It's it's really it's really neat to see how that works. Well I think you know the researchers who are brilliant people. I don't mean to be negative in any way to them, but it's like I said earlier. They're kind of like the the official score keep up in the booth there they're looking at across a wide range of. Folks Age wise How serious their parkas maybe and trying to identify patterns so they can get to. A SOLUTION TO GET TO A. Way To cure it eventually we hope. but we're the players on the field Larry we're walking through it every day. And so they can study my brain, but I have to use my brain and they can study your brain, but you have to use your brain. And to get through we stay and those are those are the things that I think if we can convince people who when you hear the word Parkinson's you don't stop thinking you don't stop living or any of those things you adjust and keep on. Keep on keeping on as they say final question for you bill when we lived through big moments in life and I think this pandemic one probably unique to to all of us having having a worldwide event that affects every human being What do you? What do you think we're learning from this? What are you learning from this? I think a lot of people are learning that they can survive and that they can count on themselves to to be a little more. I don't know if the word is inventive to be a little more creative and that there there's some serious side to life that made especially the younger people who are charging through school and be high school or college, or graduate school, or in their first job, and so on. Things have been I don't WanNa say things have been easy for all of them across the country but. You know they've been living we've been. Experiencing over the last several years. I would say several years has in from the sixties or seventies or fifties or. Wherever. You are wanted to go back you want to go. That it is all handed to you on a silver platter. You have to really think about things. And maybe this is causing them come up short. In our society and say, wait a second I've got to reevaluate where I'm going and what I'm doing it. How can I help? And I think helping others really helps each individual as well. And as I can do that one person. Makes me feel good and it makes them a little bit better. That's that's great. So I hope that more people are learning that. I think that's As I walk around and talk to her a lot of young couples here. I'm living in a house with my. Daughter and her husband and two two of my granddaughter's. So. You know there's a a young neighborhood. And everybody is still very positive. We're going to get through this seems to be the major attitude that they have. And they're especially concerned about their young children. There are preschoolers and their first and second graders. I said, we've got to get this house so they have a good life. So maybe that's It's not the pandemic is certainly not a good thing, but maybe it is forcing people to think. A little bit differently about their futures. And making it better than they perhaps would have had. Great great insights thanks, Bill I. Thank you for joining us today. I look forward to having you on the Michael J. Fox patient Council I. Think we'll have some good times we'll make we'll make some noise and I'm looking forward to it as well Larry and. Who knows between us? We make a couple of really good talks here. Yeah. Well, I think. You already. That's great. Bill. Thanks so much. You're very welcome. I. Enjoyed it. Thank you. All right, Rachel how about that? Bill Rasmussen? What do you think he is so inspirational and you know I mean he says he wants to help just one person is certainly helping many. No doubt about that. What? What do eighty seven years old to just firecracker That's for sure he's not stopping or slowing down. All right. Well, that was quite a podcast Rachel I. Think we got a future in this podcast business you and I. But I bills inspired me to go stretch and take a walk. So I think this one's done for the day I. Think I need to go stretch and take a walk to I can't wait to catch up next time Rachel Dolan Md. is vice president of the medical communications for the Michael J. Fox Foundation and a board certified movement disorder specialist neurologist and I'm Larry Gifford you can connect with be on social Media. At Parkinson's pot on facebook twitter and instagram email us at Info. Michael J. Fox Dot Org thank you so much for joining us. Be sure to check out. Michael, J. Fox Dot Org website for more information on how to live a better life with Parkinson's. You can click on understanding Parkinson's and looked down the middle column labeled the Parkinson's journey string safe key positive keep moving and we'll get through this together. Did you enjoy this podcast share it with a friend or leave a review on itunes? It helps listeners like you find on support our mission. Learn more about the Michael. J.. Fox Foundation at Michael. J.. Fox. Dot Org. Thanks for listening. This. Is Michael J. Fox. Thanks for listening to this podcast. Learn more about the Michael J. Fox Foundation's work and how you can help speed a cure and Michael J. Fox dot org.

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