19 Burst results for "Michael J. Fox"

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

05:58 min | 8 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"What you've been your experience in talking to your diaz about this. I'm doing the symptoms right now. A can't stop my head from shaping and all that soak picture of what can be at times on now. I'm ready to go. But i'm moving around quite a bit here so i was kind of laughing when you were describing symptoms but You know i do a lot of boxing. I dislike to do that for the stay in shape and help the parkinson's and you might trainers in august. They're so close watching every you know we're working hard. They tell me that they can tell them on there too. I have three different trainers and each one of them told me time. I know ease up. I can see you're not moving much four minutes later on punchers dana we move and we go right through the workout so that people who get to know you can see it pretty a pretty easily if you're if you're have these kind of symptoms but like my wife she'll go. Is it time for some medication. Do you experience that too rick. Yay linda linda. My wife knows more than i do. At this point you know the caregivers. Unbelievable and yeah. It's you know when i am off. I usually get estonia which is much worse than this. When you're when you're such women backwards against stop you know stuff like that. What about you sonia. yeah. I mean Are my daughter's too yeah. My daughter's noticed now. So they see me moving slowly depending on what kind would amend. They'll ask if they can run and grab my madge which is very old twelve year. Old son does that twelve as well. He'll go dad. You need your reds makes them feel like they're part of this. It's great to give them a job. Exactly it's empowering them to be able to feel like they can do something to help you What what are your conversations with your spouses light when you're talking about on an off and you have. You created like one of the things that i've created as i know i'm exhausted at the end of the day whether i'm off after five just because working full-time and everything else and so by five o'clock i cannot answer open ended questions so we have a role in the house that after five o'clock it's yes no questions they'll give me a. Don't ask me what for dinner..

parkinson's diaz linda linda boxing dana estonia rick sonia
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

03:41 min | 8 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"I think it's up to the provider to really delve into that. When we're doing our general overview during our follow up appointments with each other so many times that may be helpful is i asked about two different things. The on times. The disconnect the wigley movements How you feel when you when you feel your medications kicked in and then i typically ask You know what are your off. And many people have difficulty telling exactly what they're off may be very nebulous. It may be something that they don't they can't really describe so What i usually ask people to to do. All the family members as saying a make a motor diary and and kind of make a very quick bullet points of what happens through throughout the day. Both the extra on symptoms of wigley movements in the potential awesome Increased stiffness slowness trimmer. If the patient really doesn't have as much insight into these potential off symptoms a lot of times. I will ask the caregivers of the family to say. Do you notice when this win. The you're feeling member your loved one is you can tell when they're ready for their next dose. And if you say yes then. I asked okay. How do you know that your family member is ready for their next does. Do you see it in their face do you. Do you see them become more anxious. Do you notice that. They are more stiffened more slow. And then how long does that occur before dose. Because that can help with us really pulling out and recognizing what an awesome may be and then potential a management options. We can go with from there. You mentioned discontinue a couple of times. Can you help define that for people who were familiar with that. Yes so when We mentioned a disconnect as these are basically extra non purposeful movements that can occur when we see that our patients are really we call on their medication on so not just improvement of tremor stiffness and slowness but it can almost as the liba doper Replacement can overshoot what you need and so it can be a Kind of a shifting of the head the shoulder the arms and legs. That's not usually when it's very mild. It's not bothersome. To of the person experience it is experiencing but their numbers can notice that the person appears to be restless when it really becomes a more of an issue is when it it. It's a definite When it keeps someone from walking or engaging in the activities that they wished to do from day to day. I'm so that's what we define as a as a disconnect asia. Okay as sonya out your physician and you're somebody who with parkinson's so you've seen both sides of the coin here. How would you advise people to talk to their doctor about this. But i do agree with doctor. Ause that the clinician needs to ask questions. But i also think in this disease in particular knowledge is power sufficient after become educated about what the terms of. They're going to be using what information they need to give to the position. Such as when they're disconnect. What does that mean distant when telling what that means on-off what that means because your clinician is gonna base their management decisions on based on what they see but also what you tell them so all the symptoms that i'm dr mentioned a very important in relation to the time of your medications because sometimes you can get to tonia when you're up when you're on and sometimes you can get disconnected the other way around to the rarer than the normal but they still can happen so that kind of time line of your symptoms versus when you're taking your medication is really important and rick..

wigley parkinson's sonya asia tonia rick
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

05:12 min | 9 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"And to in in general Try to encourage her. Reasons for instance Her exercise that she does is no question whatsoever. Now mind that has helped to slow the progression. She's been doing really well. So i'm gonna emphasize bad for example. So that's as canal strategy. Y- have you ever had conversations about important decisions for the future. You're talking about being in the present but have you had kind of those talk conversations about the future as well We we very briefly. Russians again is not something that we were going to be discussing ally all his dad that i mentioned had parkinson's and for the last three years of life. He was essentially bedroom on hospice care. He stayed in his house. My dad had bachelor dementia and eighteen of his life. He was in a memory care unit and and pull it very quickly said okay. Let's get this settled right now. Let's not even talk about after this. I'm gonna stay in the home may damage to. You're gonna stay home. We're going to stay in her home you know. I don't want to go into one of those facilities. That's just the way it is so we did have a discussion And it's it's done now. It's it's it's decided and that's what we're gonna do we we don't we don't bring it up anymore right. Yeah you you got the conversation out of the way and so now you know what the plan is and you can focus on the president great. I think that's wonderful. Okay so now. We like to take a short station break. I want to tell you about the foundations. Landmark studied p. m. i right now. It is recruiting the parkinson's progression markers initiative also known as pupae is the study. That could change everything about how parkinson's is diagnosed managed and treated and right now. The study needs parents. Siblings and adult children of people with parkinson's you can take a short survey and get started by clicking get started and take action box under stream..

parkinson's dementia parkinson's progression
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

05:56 min | 9 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Parkinson's podcasts why. Why did the parkinson's foundation decided to partner with the pd avengers. Well first of all you guys are doing great work and we want to always support people in the parkinson's community us support people..

parkinson's foundation Parkinson parkinson us
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

08:07 min | 9 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"That gives me great great hope lacquer ties into my last question is this is a pity vendors. Tako takeover the foundations. Podcast why did foundation agree to partner with pd inventors. Well i think there's you know if you think about what it really takes to succeeding you. It's it's folly to magin that one organization is is going to be you know is is the one and only organization that needs to exist to make this happen. I mean just by step whole back and think of one subset of needs which is better treatments there. There are three big entities just in that part of the space. There's government funding in early stages in academia there's fox funding which is highly strategic that is bridging on a basic science. And teeing it up for in the translational space to get it into the clinic at We often our funding in phase. One a little bit face to even and then there's pharma and that's that's before that's just to get a drug approved. Then you have other entities that need to get it to to patients and make it give accessible and affordability so you you. It's just folly to imagine that any success is gonna come by a single entity. And when i think of the role that a lot of Patient organisations way it. It's really Critical for us to reach as far as we can and so working with smart people who are motivated who seek who want to be informed and want to figure out which of these things i can do to really make a difference. We need those kinds of partnerships. And so it it. It's a no brainer. So debbie We gotta get michael. Decide up a pdf venture. So how are you gonna help us do that. Well you know i. He's he's what everybody in spirit on these things and it's just you know it's really. It's a stunning thing for me. To have seen over the years. How many tugs come on his shirt and you know and to remind folks. He's had parkinson's now for thirty years. And so you know. I said before. Everybody can't do everything. And i think it's fair to say he's tunnel bot and let him pick what he's gonna do but please no he's with spirit and we're here and and so I think If you want a role model for an adventure is the original. We're standing on his shoulders. Appreciate all that. He's done to bring us out of the shadows. I have often said that. That without the michael j. fox foundation we would still be lost somewhere back in eighteen. Seventy and we are so very grateful to all that you have done and what michael has done to literally bring us out of the dark and let people know that we exist out. There's more that we need to thank you. And i know that he he. He takes very seriously that the appreciation of that and he took it very seriously stepping into the role. He thought a lot about He he he wanted to do something but he thought a lot about. What's what's the right thing to do. Where could he bring the most value. I think that's an important journey for anybody who wants to get a gauge. You know it's hard not to be tempted to want to do everything and the at the fox. Why should we really. We work hard on that too. I think part of our strengthened successes come from staying very you know very everything. We do has a connection to the goal of speeding drug development and better achievements and sometimes it may not be so obvious. But i assure you everything we're doing is in service of that and takes every ounce of energy we have and i think individuals there's a. There's a similar herald l. in that kind of process in. Obviously i'm looking at people on on screen as we record this and i see people who have done so many things you know so people can juggle and make their choices. But those prioritization are critical so that we don't isn't that we're rational and sober about where we can make the biggest impact. And and i. I couldn't be more grateful or being the person who happened to be the one that michael at the time and to help him realize his vision but i do think tim that he feels a great responsibility and felt a real opportunity to be part of the community by taking those steps. Thank you thank you. Debbie michael foundation for your passion commitment and dedication to get this done. We really do appreciate appreciate your time as well tonight. Names goodness it's my pleasure. Thanks debbie this. Awesome out one of the things to keep in mind about research and sonia. Tim you can talk about. This too is up. People with parkinson's need to help out. They need to raise their hands and participate Because it doesn't get done without us it is actually true without us. There cannot be any better treatments courage. Assistant work that way. The research community needs to partner with patient community to make that happen. We continue that were important in research so we need to really encourage one another end to ourselves involved in research wherever whenever we can and we're not just about research about research and advocacy and wellness and many of the organizations around the world touch on two or three of those pillars as well The pedia vendors are inspiring change around the world as it relates to research now dundee university in scotland. One of our new partners decided to dedicate a hundred percent of their research efforts to parkinson's projects in canada. The pacific parkinson's research institute helps fund. Pd research at the university of british columbia next week. We're going to explore six more organizations re under the advocacy banner and three dedicated to wellness. Will you guys ready to that. Absolutely signed me up. I know you. You'll be like don't push ups getting ready. Lord have jimmy choi screaming in your ear. My god come on three more or fifty more. I do wanna also acknowledge. Sharon kirscher twitchy woman for inspiring this these episodes of the podcast because she did this on her on her own for the her support groups where she invited to different organizations into explaining what they're all about and we thought it was such a great idea that we could. We could do it here too. And so we. We want to thank her for that. You can learn more about the twitchy woman and michael j. fox foundation and all these organizations at pd avengers dot com. And while you're there you might as well just sign up to be a pd avenger mighty. How all right. We'll talk to you next week. This is the michael j. fox foundation podcast on behalf of everyone at the foundation and the pd avengers. We we wish you well and we will talk to you again soon. 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's work and how you can help. Speed cure and michael j. fox dot org.

magin fox foundation parkinson michael j michael debbie academia Debbie michael foundation dundee university pacific parkinson's research i fox jimmy choi sonia Sharon kirscher tim Tim university of british columbia scotland pd avengers
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

07:19 min | 9 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"And i had the pleasure. Speaking with her cure. Parkinson's Is an organization that was founded back in two thousand and five by four individuals with parkinson's who wanted to really put some energy behind research into a cure and at that particular time the landscape the research landscape was pretty bleak. A number of big pharmaceutical companies had left left parkinson's just as that drugs were coming off patent. It wasn't making sense for them to be active in the space and there've been a number of studies that hadn't Hadn't been successful. And i think we felt that more needed to be done to really focus the effort towards secure sat impact on the type of research that you now fund very much so the research that we fund is is very much focused on trying to slow down the disease to stop it or reverse it But the re-met for our starch committee who evaluate all our research projects Is that the project needs to in the clinic. That means a phase two clinical trial within five years of funding. Because actually what we want to be able to do. Make a difference to people living republicans. Now what sort of research is on the horizon. for care. parkinson's we have all international link clinical trials program and we walk in collaboration with vinyl receptions. To change each year we pull together a group of ideas With very very strong biochemical evidence on these drug ideas that could move into into clinical trials. It is very active and thriving program with now sixteen trials of ict drugs that are happening around the world. A not all of those funded by us. Some of those are funded by our partners. But for me those meetings. The magic is because we have Partner funders in the room with us but particularly michael j. fox an h also join us partisans. Canada parkinson's uk And and that adds a dynamism but most importantly we will have people living with parkinson's at the table. How do you feel the patients fit into this. Whole clinical trial process. It's feick important. The people with parkinson's are embedded in in all projects. Right from the start. They can really help shape the thinking but also in terms of viability and practicality particularly now as we're moving into an era where a hybrid trials being designed which involves more home visits. We've we've got to be really mindful of making the clinical trial experience for people with parkinson's as positive as it can be and make sure that they feel as if they are very much included in the process as part of the clinical study team as participants not as subjects but as participants proactive participants. On that journey. That that's that's a great way of summarizing I i really think that that aligns with what. Pd ventures is all about as well and speaking of media vendors you've been an extremely supportive encouraging and guiding force for us. Thus far for me pd avenge is is such an important movement. This is about raising the profile of parkinson's nationally internationally and locally the high the profile of parkinson's the greater the chance we will attract government interest and with that government investment and with that government investment. It's not just in the curative research agenda. But it's also in the wellness research that is urgently-needed And i think it is also making sure that parkinson's is on the agenda globally with the. Who with the un you know. People have parkinson's in every country round the world and that health inequality is palpable. It's time that we raise the profile of parkinson's it's time we all work together to do that. Each of us of course have have are in areas especially -ality but we will all benefit if parkinson's becomes a health priority. Hell is such a great advocate and leader and supporter. But we're doing it's great if she's actually the catalyst for what we're doing. She's the one that made the initial call saying. What do people think. That book ending bargains disease. Let's get some folks together dog about he asked. I think we do have to thank for that and you can learn more about your apartments in by going to their website. Parkinson's dot or dot uk. Yeah go to that website and then go to our website. Pedia vendors dot com and sign up to be a pedia vendor. While we're often running. Well run walk by box. It doesn't matter larry. Just move your body. We'll deferring move on to wellness tim. Michael j. fox foundation has been a major influential player in all three pillars that the pdf ventures have committed to as you may know the michael j. fox vanishes largest private thunder parkinson's research having raised more than one billion dollars in finding innovative and at times high risk researched. So it's my pleasure to be here today to talk. Deputy brooks co founder and ceo than jeff. Welcome debbie and thank you for allowing us to take over the podcasts and yeah so excited to be with you guys today. The foundations are celebrated twenty years. And as a co-founder what stands out for you as it relates to how fox condition came to be sometimes Michael nice standing on the sidelines at a board meeting or at a staff holiday party and we just look at each other. How did this happen. I like i think about it. And i realized with michael especially how could not happen any. He's been first of all before he was kind of out and and connecting in the community and shared his diagnosis had kind of indirectly kind of volunteer by raising his hand. He's known to be warm and inspirational and optimistic. But as you get to know him you also catch very quickly. How why is he is and you know i. It wasn't a shocker. To me that he would be able to bring such gifts to any undertaking on the one hand. There's a part of me. That's not surprised. Because of michael. I before i will. I can't. I can't stress it enough of this. Was the debbie brooks foundation for parkinson's research. We'd be nowhere so there's just no denying it but at the same time There's a magical mix of what What we ended up building at the fox That patient centric passion and the scientific grounding and the business oriented approach that i think has Has delivered some beyond our expectations than so and yet i have to say look at it i think and we are not done yet and there is much more to be doing and i think that's what keeps us engaged and excited and motivated and even.

parkinson feick Parkinson michael j Pd ventures fox fox foundation uk thunder parkinson Deputy brooks co Canada Michael j un larry tim debbie jeff michael
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

02:01 min | 9 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"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 a cure free resources like this. Podcast are always available at michael. J. fox dot work. Welcome.

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

04:25 min | 10 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Get started tab in take action on your screen. Studies also recruiting people diagnosed with parkinson's in the last two years who are not take medications yet can learn about the ppi clinton delinked in the resource list in help. Spread the word about the ppi to the rank to share. Is michael j. facts. That reflects ppm i. That's michael defects dot org reg ppm on so mark i'm going to have you kicked this segment segment often hit because of your recent participation in the ppm i helping Not only me. But the community abroad as a yearbook mirror One of the things that is so frustrating. But we can't feel like you can't do anything parter on making z's co away But there is in a way Realized that we're in it for a while and that is participating in clinical trials. And i was fortunate that when timers rank for us and i was available but the ppm. I just opened And i was looking actress. People colty which they are again does so. I signed up. And it's been a very helpful to me too well that i'm benefiting the parkinson's community and cooper's point Only one native binding year from this. And it's the been amazing.

parkinson's michael j clinton michael parkinson cooper
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

03:04 min | 10 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"A little bit on. March counts with emotion You know when pregnancies ruin you nothing about it in. When i went absolutely i also kept it secret for several years as a physician. I was worried about my your healthy career but realizing that there were no resources really available. And i think they'd parkinson's communities are bringing that to the forefront that we need to have exercise we also need you know social contacts education and we need And i think that Live carson communities are slowly but surely as a see through my advocacy work in different communities are coming up in these together into one place where decisions can build a community so doesn't important changes that.

parkinson
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

05:57 min | 10 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Usually the diagnoses is parkinson's disease. Dementia is different. If it's the lou alday dementia or different. I notice i. I do want to mention one aspect here. The everyone have has different opinion while a but that is the genetic stratification is becoming more and more about practice and that is because we are starting to see the advent of therapeutic trials that that ought directed patients who carry specific mutations but along with this knowledge of genetics we are understanding the patients who have different genes associated with parkinson's can have different. Manifestations rights is progress and so there are a number of studies that have identified a genetic predisposition factors that will lead to faster rate of motor to non motor progression. So i want to underscore that. That's an important it's important from the Therapeutics unclaimed with trials. But also we are getting a little better everyday understanding prognosis based on genetics. So this brings to the very potent topic of what can he do. Smooth up tournaments corrosion have cure yet. I you know this. We can improve the quality of our lives. Living with parkinson's disease. It might take hard work. Commitment patients support education but weakened in pack are are disease henry. I'd like to turn per second one lies in your arsenal strategies to help with Improve your day. Strong better hearing good with living. Parkinson's disease sure. I would say the number. One item is exercise and for my Reef scanning of literature. I was diagnosed and from all people told me. Exercise was the only thing available that might have a chance owed slowing down the progression of a disease as it was just masking symptoms. So i went added seriously and i I'd always kept model. The decent physical shape through jogging swimming and so forth added more of that. I did about an hour and a half day agrees forms of exercise walking running a trimming working with resistance Regimes you name it. And and who knows what effect sat makes me feel better anyway and right after. I do it and and hopeful that it's doing something any case i'm i'm doing it on the mirror probability that seems substantial that they're not substantial. Seems real that it will do some good Other than that. I've watched ifm but that that line has changed very much for me. And i would say exercise a little more sleep than i before and You mentioned it before you You were hiding disease. You connected with the parkinson's community at this point. No i wasn't Mike community of partisans.

Parkinson's disease Dementia henry swimming Mike
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

08:19 min | 11 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"That affected at all by db s. Well so Executive functioning is unfortunately a common feature of arkan's disease. And it's not necessarily something that we looked to be improved necessarily with deep brain stimulation. Oftentimes maybe there are some features of that executive dysfunctioning that can improve with to delve into the extent that those happen. Perhaps there's also a some improvement not with a deep brain stimulation as well but generally speaking. That's not something we expect to change when you think about the long-term profile of patients who have undergone a deep brain stimulation and what they're called Can what can happen to their mission over time. you know. There's there's a small proportion of patients who can have greater difficulties in certain areas in association with the surgery generally speaking over time seeing What we may see parkinson's advance But we're not necessarily seeing advancing as a cause of of doing the deep brain stimulation as far as access to db s is Like most things that i find with parkinson's i'm guessing there's inequities of of access to db s united states and around the world. Yeah so deep brain stimulation first and foremost. I think it's important for everybody understand. It is approved by insurance. It is a well-worked ignites treatment and so It it is something that people who have access to care for their parkinson's and have insurance and things like that. Those those these can should not be barriers for patients to get it. I think what we see are reflective of certain hair patterns in incense disease so we know that places that have large hospital systems or have been disorders clinics or or neurology kerr grams where they see. Large numbers of patients with parkinson's diseases replaces where we're also seeing more deep brain stimulation happening. Now it's going and it's changing and so there are centers or new smaller programs around the country. But i think one of the challenges that i've seen is that if there isn't a place close by that a patient can go issue to get pat db s care becomes harder for them to commit to it and so That sort of the center the whether or not. They're being managed in place that has a regular consolidated care for patients. Those are probably more the factors that we're seeing in terms of patients access to deep brain stimulation now. Some of the studies do show. That patients a certain demographics are less likely to receive that. But i do think that it has a lot to do with how he's a care. Patterns for the underlying parkinson's disease are are situated around the country. Grew dr xu Win we should talk about insurance. What you don't have insurance. Are there other places you can go to help get finance for this imagined brain surgeries not achieve a yeah. That's a really good question. I don't think there are other options out. There insurance doesn't cover it. It's really i think Some some health systems. You might be able to call and kind of talk with them and negotiate. They may have a certain certain assistance program. Said that maybe may be able to help with it but yeah unfortunately. I don't think there's much if you don't really have insurance. Are there other obstacles beyond the financial. People need to consider to getting deep brain stimulation. Activates more like dr shahad said it's the distance from the center. I think is is one of the major obstacles and trying to find a team that can do it for you. That's that's more convenience. What are the do you want to be closed because you still need to get the valid ends the there after you have the surgery. You still have to see that. The technician to adjusted. Eps that has lots of just after the surgery. They are probably they're fairly frequent. Visits where you need to kind of tweak and adjust the stimulation in order to make it better for you and that can take a fair amount of time. After the surgery so frequent visits is important. But also i think As doctor chad mansion a lotta times These tertiary academic medical centers. The university centers tend to have a lot more of the people who are experts in in managing partner disease so they are going to be the places that tend to have a lot more The defense english type programs has been trained. They see parkinson's disease and don't do this whole life It's hard to maintain a program With with good garin holiday quality Surgeons and people helping to manage it If if somebody's considering db s you won't you have to recommend them for that. They're they're movement disorder specialist has to recommend them for the surgery. What how important is the relationship that you have with the patient and how honest they're being with you weigh into that decision lash. I think if if your patience Being honest with your neurologist about your symptoms. I think is very helpful. I guess the example i can think of is i may have patients who come in and i think they they come in and they want to try and present the their best self rights so they may say i may ask how how are they doing. Are they having any problems and they say no things are going really well. And and then i would spouse and they're shaking their head now and then they start talking and then then when you find out. Oh maybe when medication wears off. It can't move a whole lot or they're having problems or more problems than than maybe a patient is leading on And i think that's actually very important just for your general care and parkinson's disease because You know from physicians. If you come in saying things are great. I might just say okay. Well things are great. We're not going to change anything. And then so nothing's actually going to improve for you on. If you lay out your problems that we can at least try and come up with a plan to try and make those those veteran. I think the same thing with the deep brain stimulation after you have it if we're tweaking and you want certain symptoms to be better if we can make better. I can only make a plan if if it's brought up but if you say things are great i'm going to say okay good. We don't need to change anything. Donny jerry ever catch jim great. When you know he's not on. It was always had to go to the doctor with him. Because i knew he wouldn't be honest. About how bad symptoms. If i wasn't there and that that that affects me to we know when the symptoms were worse. So i wanted him to take better care of himself for him and also for me and part of me wonders looking back if none of his neurologists remit recommended deep brain stimulation surgery price precisely. He said you know. I'm doing fine. Everything's fine it was actually a other care partners. Who asked you about why. Didn't hadn't gotten db s already. That triggered the discussion between us and jim looking back. Do you wish you would have been more forthright. Well yeah i mean i know. There's a piece about parkinson's that's no fun to manage. Which is you know you. Can you know there is no cure right. And so part of the defense mechanisms. I bring to that. Problem is to try to put a positive spin. On how i'm feeling or how i'm doing battling the disease so my my optimism wants to carry me across food the finish line but i do think donny's right that overtired. He looked at eye doctor's appointments. I was saying all the good things in holding back or been quicker about the bad things. And so in. That may have lived led them to think i was lu- less symptomatic than i might have otherwise really actually been delayed a recommendation about.

Donny jerry jim one english united states dr shahad dr xu Win parkinson
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

06:42 min | 11 months ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Oh talking about who should consider getting db s a deep brain stimulation surgical procedure for parkinson's and we'll cover how the procedure works. What someone may expect after the surgery and the latest advancements on this research would through a lot of cool things that are happening in the world. We have a lot to discuss. So let's get started later. Due to our panel today dr kelvin. Chow is the clinical professor of urology at the university of michigan medical school that he is also the site investigator of the michael j. fox foundation landmark studies parkinson's progression markers initiative. Better known as p m i at the university of michigan. He is a researcher and has written a book on db s. Welcome to today's webinar. Tie thanks for having me. Jim nez chief people officer and general counsel at the michael j. fox foundation. He was diagnosed with parkinson's disease in two thousand and had dvd surgery in early. Two thousand eighteen his spouse donald moss and animal rights. Advocate is also here with us today. Welcome thanks and we have dr julie. Hemans shaheed the medical director of the movement disorders neuro modulation and brain circuit therapeutics at the icahn school of medicine. The mount sinai new york. She leads the registry for the events with db s parkinson's disease or our d. dash. Pd talk about more more a little bit later. Let's get started with the questions. What is deep brain stimulation. Doctor she said concert with a doctor pickle. Dr absolutely thanks for having me on this I think deep brain stimulation is a very exciting therapy. It's actually been around for a long time for treating parkinson's disease but what it is is a surgical treatment that is actually the most common surgical treatment used these days to manage parkinson's symptoms. It's like a pacemaker. For the brain. So if you think about a pacemaker. In the heart the wires are in the heart of regulate the the heart circuits But here we have a deep brain stimulator delivers a small electrical current into those deep brain structures that are controlling movements and by doing that. It can really kind of block signals that are associated with some of the symptoms of parkinson's disease tremor and stiffness and certain walking imbalanced problems and when we kind of get that stimulation just right for an individual patient we can see all kinds of improvements in holly just the primary parkinson's symptoms but also some of the treatment complications such as the just caniggia's and the fluctuations and maybe even the tremor that wasn't responding well to medications voter shoe took them specifically does does not help. Yes i think. The best way to think about deep brain stimulation is that it. Actually in most cases helps the symptoms. That are helped by leonova or the medications that you would take and so when people have parkinson's disease and go on for a long longer period of time and are treated with liba they might have what we call on and off states where you take the medication and after about a half an hour medication kicks in and then many of your symptoms improve like the tremor the stiffness lowness blocking problems etc on. Then you're considered a non-state and then maybe before your next dose medication. Wears off. In the tremor stiffness lowness all those types of symptoms. Come back yet. Well a deep brain stimulation basically makes you feel like you're on your on state Throughout the entire day so symptoms that respond to liba are the symptoms that are responding to deep brain stimulation if it doesn't respond to leave bud than in. Typically it doesn't it will not respond to stimulation either. The one exception to that rule is tremor at there are many patients who may have a tremor in which you take high doses of these get without a but it doesn't respond a bendy print stimulation will help. But that's the way about how how help you. Yes so if you have extreme differences between neurons offs and it's impacted by but then you probably are good candidates exactly great now Who should consider db s and win is a good time to get db s. Let's bring in our other guest to jimmy donny. What what may jim good candidate for db s well I would say you know i I had symptoms at responded to methadone. First and second tremor and stiffness and i gay in speed of movement. I say brady can you for short too. And then you know the one made e change or get the surgery wise. I was taking a ton of pills. Day and i was dependent on that wherever i went. I carried my parkinson's medication with me. If i was on a trip or something for work i would always. Have you know medicine with me. All the time and i just wanted to break the cycle of continued dependence on medication and my doctor ridden on my symptomology was Maybe a good candidate so we went ahead with. Also you were the right for. That's who let's talk about that a little bit more. dr should head a sheriff's some more information about the viable candidates. Is there an age limit. Yeah that's a common question that we get. I think that You know generally speaking. They're not as specific as lament forgetting deep brain stimulation with that. The main things that we're looking for our weather patients have had you know as described Were describing the the fluctuations that are up In the refractory tremor But we do know that as people get older they can have other medical conditions and potentially other sort of risk factors that might affect their sort of response to the surgery itself into there might be a different surgical as risks associated with patients who are older and so we do want to make sure that those are all investigated appropriately but there really isn't a strength at age cutoff or one of the symptoms that his bothersome for a lot of people especially with wild pd who are still the work field is is sort of the the. The decline of the executive functioning is.

Jim nez today jimmy donny kelvin two thousand university of michigan medical Two thousand parkinson michael j. fox foundation new york icahn school of medicine fox second First one exception Chow one university of michigan Hemans shaheed about a half an hour
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

01:35 min | 1 year ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Great resource. So i encourage everybody to go there. It's the parkinson's buddy network dot org parkinson's buddy network dot org. There's an s on parkinson's oftentimes it's either a parkinson. Parkinson's this is parkinson's buddy. Networks dot org. Thank you chris. And bob and steph for joining us on the podcast today and thank you for listening to the michael j. fox foundation parkinson's podcast. If you like it. Please leave a rating and review all the apple. Podcasts really helps to raise awareness of the podcast and the cause of parkinson's disease. Please share this episode with your friends and followers on social media. A personal endorsement goes along way for everyone at the michael j. fox foundation. Who is here until parkinson's isn't thank you for listening. I'm larry gifford. You can follow me on facebook twitter and instagram. It's the same handle at parkinson's pot. Podcast share it with a friend or leave a review on. Itunes it helps listeners. Like you find and support our mission. Learn more about the michael j. fox foundation at michael j. fox dot award. 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. Speak your and michael j. fox dot org..

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

02:27 min | 1 year ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Not to dominate. The talk. And at the same time you know not the lead it and don't necessarily again just jump in explore the things that one talk about man and she share because you know the kind of leadership role there. I want the group to feel comfortable and not be dominated by me again. A buddy network allows me to talk to bob the on a conversational level and connected and just i love to hear op stories about his being in trials research trials. Not not. I victim irvine stephanie. Why people sign up for the buddy network. How else would we have connected. A gentleman in florida to gentleman in nebraska indian. I think that their story resonates also apart of the pd community. Mike had parkinson's for sixteen years. I've connected with other loved ones. That have someone that has either as living with parkinson's or his past and built connections with with those people you know it's kind of a virtual young professionals network most of of ways to connect with others and just talk sometimes. It's easier to talk to a stranger than it is your best friend and bob. Melvin said he. He's opened up to to chris about certain topics. And i think the opportunity is there to make these connections to learn more to really take charge of your diagnosis or take care of yourself whether you're person living with parkinson's or you have a loved one with pd. It is a great tool to really give you that power just looking here. Rebel live live in motion. Here the discussion page. Has anybody been on cinema at so. There's that question there was somebody else asking about. I love this question. How do you see yourself in five to ten years do you visualize a healthy. You are compromised. you like. There's all sorts of great things for people people asking about where you can find free meditation online so this is a. This is a.

Mike five florida sixteen years Melvin nebraska indian chris ten years stephanie bob parkinson
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

04:33 min | 1 year ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"That safe opportunity in. Chris mentioned you. Don't give your phone number. You don't give your email it as a safe place to to start a conversation but then if you wanna take it outside of the platform by all means were. We're hopeful that people do a serious question for you. Steph is the woman who's joining every facebook group about parkinson's there who who posts about how she was cured by herbal remedies. How do you keep those people out rate question. I have not seen such a post yet. But as part of that code of conduct that i mentioned earlier we have the right to remove any content or people from the network that are not adhering to that code on that are promoting that they have the magic cure or that they want to try to sell you a product we are in the network every day monitoring we as of capturing key words or phrases that are popping up. And we're definitely taking that seriously. We do not to turn the platform into everybody trying to sell this or or that so Yeah great great question but it is very very important us off again. I think that that's what i found. Is that. It gave me a confidence that i connect to somebody. I'm not gonna just dump. Linda somebody who's gonna try and sell me herbal product. Find that that. I just kind of leave the connection and go while they haven't got my contact information so i i don't need to deal with him anymore. I can come on buddy network. And it sends a powered through the michael j. fox foundation blinked in there and they won't give out my email to my phone number but i can still make connections which is great would have just jumped in one one more thing. Oh sure go ahead. Time of the social network thank follow a couple of facebook feeds and data The buddy network of discussion pages and stuff like that but i. I'm just not a person..

Chris Steph Linda facebook michael j. fox parkinson one one more thing
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

04:36 min | 1 year ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"Now with the social media and with the parkinson's community being you know mostly on the older end of the demographics. I'm sure they're concerned about security in about the being too complicated and so what has the michael j. fox foundation done to make sure that everything is safe and secure. It is safe platform that we have vetted that we are not going to be spamming the community on have to opt into our emails. They'd like to receive them. There is also some you know basic terms and conditions also code of conduct that people sign off on when they are registering. We wanna make sure that it's a safe space that people feel comfortable feel comfortable sharing. There's also a way a first name last name. Email are required to sign up but then you can actually change that name. If you'd to or post things anonymously in the platform If people are not yet out with their diagnosis or still trying to kind of page things little bit you can post anonymously. We're also here to support. So there is info at harkinson buddy network dot org and people can email us We've been answering questions some about the on boarding some people have emailed in and say i signed up. Now what do. I do providing help and support. There's also resources in the network to help people navigate a little bit better and again we're here to support. We wanna make sure that people are having a a safe and supported time in the platform where you mentioned the resources. It's a great connection to the michael j. fox station because oftentimes we'll get emails or whatever but this is it's all in one place so you can go look at some of the videos you can look at some of the resource guides. You can everything that you guys have. And i think you know along with the resources i think everybody that's in the network is resource. There are discussion topics popping up left and right about learning more about db s or. Has anybody tried this type of diet. War i'm thinking about this medication. And i think not only can. We provide mdf resources but the community is providing resources to each other. We do not want people sharing medical advice necessarily but if it's your own experience and what has worked for you and your.

parkinson michael j. fox harkinson one place network dot org first
"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

The Michael J. Fox Foundation Parkinson's Podcast

04:20 min | 1 year ago

"michael j. fox" Discussed on The Michael J. Fox Foundation Parkinson's Podcast

"I consider myself somewhat active bicycle. I run into still employed full time. And i looked to bob to kind of give me the The hope and the The energy to keep going. And i imagine with once you establish you know sort of friendship of buddy ship over the course of six months. You're able to start diving into some deeper topics that's true. I know when i came to the relationship. I felt that i'd be the mentor and help this person down the journey as we got to talking chris very capable to talk to you and we talked about things that i don't talk to the people for whatever reason warmness depression. I just don't talk about it. Because i don't have time to be positive. Keep going him do that. But that's an comfortable almost immediately talking with chris. If be able to talk with that kind of an issue so i became the neater not eight or the needy not the nature so suddenly the butting that became more than just you being able to offer what you know. It's also now serving you absolutely now. That's amazing stephanie. When you hear this story how's that make you feel. I mean this story is is quickly becoming one of many that we're hearing from community members and i remember getting on the phone with bob on the a couple of months ago now and i met this gentleman. We set up a call. He got on the phone and we said okay. Now what do we do. You know blind date style. I guess but. I think knowing where that started this story that like. They're both being able to learn from each other and lean on each other. I think that's what the buddy network is all about. And i'll say one thing when when people are signing up there is not a lengthy but a decent on boarding process to ask specific questions that are It's a set once at a questions for people with parkinson's and other sex for care partners in loved ones. But it really digs into what you're looking to gain from the network and what some of your interests are hobbies are your stage of disease and i think through that on boarding processing within the buddy network. You're able to really filter in meet the right people. This was christie's first outreach to bob and it clicked. That might not always happen. But the buddy network. You're able to really dive into finding that right person or people to make these meaningful connections and we're hearing as more and more people are joining that more people are reaching out and saying hey i connected with someone and we had a great conversation and i found out that we live two miles from each other so these things are these things are happening and it just reiterates how important this network.

two miles chris six months both christie first outreach stephanie a couple of months ago bob one one thing parkinson
Florida Keys, Brian And Florida discussed on All Things Considered

All Things Considered

02:16 min | 3 years ago

Florida Keys, Brian And Florida discussed on All Things Considered

"Coral reefs are dying around the world and a new study suggests a way to save them the study of the Florida Keys shows that a lot of the stress on corals comes from local sources which means there are things local communities can do to help the corals NPR's pink Wong reports Brian the point has watched half of Florida's corals die off in the past twenty years watching the decline of court what we he has been heartbreaking I live in the Florida Keys and when I moved here in the early nineteen eighties I had no idea that we would be losing these corals the point a professor at Florida Atlantic University has spent his career studying corals at the leaky roof and the Florida Keys he's the lead author on any paper out in the journal marine biology it analyzes thirty years of data he's collected and its conclusion is actually hopeful you've got quite a story here would you put all this together that there actually is hope for coral reefs after all how does he figure a study which showed that warming temperatures were killing off corals but as data actually showed that the corals biggest problem was another human source too much nitrogen it comes from badly treated sewage as well as fertilizer and topsoil from people's yards and farms it feeds blooms of algae that block out the light and also throws off the nutrient balance in the water and make the calls more likely to catch disease to go through coral bleaching and to die Michael fox studies coral reefs at the woods hole oceanographic institution he wasn't involved in the study but he appreciates its long term view we're starting to have enough data to really track the impacts of local scale structures to quarrels over long enough time frames to understand how the communities are changing James Porter at the university of Georgia co authored the Florida study he says that in the past most scientists and the public figure that there was little we could do to help corals unless we fixed all of climate change what our study shows is that taking care of one off from the land which is a local phenomenon that can protect coral reefs to put this is our findings from Florida can apply to reefs around the world and that better sewage and storm water treatment might give corals a fighting chance at surviving climate change ping long NPR

Florida Keys Brian Florida Professor Florida Atlantic University Marine Biology James Porter NPR Pink Wong Michael Fox Woods Hole University Of Georgia Co Thirty Years Twenty Years
Far-right candidate stabbed at campaign event in Brazil

The World

02:18 min | 4 years ago

Far-right candidate stabbed at campaign event in Brazil

"That's both sonata holding up a journalist's camera tripod, and then pretending to use it as machine gun and the candidate is saying we are going to execute our political opponents, by the way, both in auto is sometimes described as Brazil's Donald Trump that scene played out at a campaign rally last week. Now, he's in the hospital most Sinato was stabbed in the stomach yesterday. He survived. But doctors say a full recovery is going to take months, Michael FOX is a journalist based in Brazil. I asked him first about the attack on presidential candidate, John Bosco. So he was at a campaign rally in town in media should ice about one hundred twenty five miles north of Rio de Janeiro. So southern Brazil eastern coast. He was being carried through the streets by his supporters when assailant came up and stabbed him in the gut. He kind of bent over. According to local reports, the supporters beat the assailant, and then he was rushed to the hospital originally. They thought it was just a superficial. Wound bought a fawn further tests. They noticed he was hemorrhaging. It had hit a vein in his abdomen and two or three cuts to his intestines. So he underwent surgery, which he laughed last night around seven PM in a stable condition. And that's the situation right now this morning. He was brought to a hospital in Sao Paulo where they're like you said he expects to be there for roughly seven to ten days. But this is just a terrible terrible turn of events in a campaign that is just flipped on its head is a picture of who both auto is. I mean, he is he really Brazil's Donald Trump. He is Brazil's Donald Trump and more. So he's a former captain in the military under the dictatorship. He's been a congressional Representative for the last twenty years on the far. Right. So his views are extremely have been extremely conservative for a long long time. But that's really garnering support at this moment with this kind of. Groundswell for nationalist populist leaders around the world. So he is so controversial. He's been fine for his sexist, homophobic, and racist rhetoric. He's about to stand trial on the supreme court for comments, racist, homophobic, comments. And he's come out and said that he would rather have his son dead, then be gay. So that's a picture of who this guy is. And why he is so controversial. And why he's so

Brazil Donald Trump Michael Fox Rio De Janeiro John Bosco Sao Paulo Sinato Representative Lula Wilson Suharto Lena Cristiani Yoho Lulu Simone Twenty Two Percent Seventy Two Year Twenty Years One Month