Amazing! Dr. Espay is inspiring in his brilliant and ethical approach to PD. This has been the first time since my diagnosis this spring that i have felt inspired and hopeful! Please bring Dr. Alberto Espay back for further discussion!
Thanks for your comment. We have already recorded a follow-up to this conversation with Dr. Espay. In it, he answers some additional questions from the audience of this webinar. Keep your eyes peeled for that video. It's in our video production queue and we'll have it out as soon as we can!
We have already recorded a follow-up to this conversation with Dr. Espay! Keep your eyes peeled (or better yet, subscribe!) to be notified as soon as we publish it, which will likely be a few weeks from now.
Well, he’s not going to make too many friends with this video, but what do they say “someone has to speak truth to power?” very well explained and I can’t say that anything here was a big surprise. Bravo for being honest!
Thanks for your message! We are very grateful for Dr. Espay's candor and passion for the wellbeing of all people with Parkinson's. This year marks the 20th anniversary of the Davis Phinney Foundation, and we're fortunate to have had Dr. Espay as a friend of the Foundation since the very beginning. Of course, please bear in mind that, in keeping with Dr. Espay's message, you have your own experience and circumstances, and you should always consult your own personal care team before making decisions about your treatment plans--including decisions about whether to pursue any diagnostic test or participate in any clinical trial.
Brilliant presentation. Making things clear and understandable. I'm a participant in the Fox Foundation PPMI research. I've had non-motor symptoms for years (I'm 79). I'm now in the "you exhibit parkinsonisms" stage. I wanted to participate in the research to help move the process along.
Hi, I joined the study also after I did the smell test. I do not have any noticeable symptoms and am nearing age 70. I fly up to Ct. to have the DSTAT test 10\124.
Thanks for your comment and for your interest in moving things along through research. While participation in research isn't in everyone's interest, it is important for those who DO have interest to do so. Regarding the "you exhibit Parkinsonism" stage (and the comment @stevenrein3118 made), here are two resources that might be helpful toward the goal of clarifying your diagnosis: davisphinneyfoundation.org/new-diagnosis-aid/ davisphinneyfoundation.org/parkinsons-parkinsonism/
Exercise but equally I very much believe music, is how I've made it this long before anyone realizing, something serious and more identifiable is what they've noticed but not known what, partly due to age bias, but also due ubiquitous music rendering less noticeable combined with cover of choreography to appear more normal in short stints by myself, since adolescence sudden awareness of my own difference. Parents began hyper focusing on my walk and stance, when they had not before, although I remember years earlier strangers being weirdly hostile to my parents occasionally at places like parking lots, or gas stations as we were always traveling, that they should get help for me, which seemed odd to me, and my parents because frankly outside of my gait and any other wobbliness sometimes, mostly I was acrobat, with steller balance. My balance got more difficult in 2011. At the height of my best physical fitness, which had improved all the years after I stopped driving and walked everywhere because I was blind. Music was always there and how I have handled being alive all my life. Am now 60.
A-Syn is everywhere in the body, but it's not clumped in the body of a healthy individual. A DAT scan is also just a confirmatory test, but many individuals with PD have had them. Giving someone levodopa to see if it helps is also a way of confirming a PD diagnosis. But both of these require an individual to have motor symptoms, which research states 60 to 70% of your dopamine producing neurons may already be lost. 🥺 When a disease is diagnosed the SAME way in 2024 that it was in the 1800s 🤯, having a confirmatory test that does not require nuclear medicine is fantastic. 👍 Duke University is also doing a clinical trial on a blood test that could be used to confirm a diagnosis, or identify a risk of later developing PD. As the research continues, we're going to see a paradigm shift in our ability to identify people who are at risk of developing PD. Since we now know that a change in diet and exercise exercise exercise can in fact be disease modifying, why do we not want to tell people about their potential risk for PD? I really hope the medical experts figure it out amongst themselves quickly. 🤷♂️
It is scheduled for publication on October 7th. A link will be put in the description of this video and in the blog post here: davisphinneyfoundation.org/webinar-recording-live-well-today-parkinsons-subtypes/
If I had to guess, I'd think our speaker is leaning on future discoveries of Parkinsonian susceptability being genetic because he is looking to a mitochondrial placement for the strained connection (in sufferers) between the 'will' or desire to perform a task, and the failure to produce a physical response to satisfy the desired action. The broken link then, moves beyond the brain and cns, to the body in sum. Our poor, sleepy little mitochondria just aren't getting the message!
Is there any currency to the idea that a-Syn deposits locally as a means of 'insulating' areas of the brain and cns experiencing 'leakage' of the small charges, or to inhibit an area experiencing excessive output from adjoining areas?
Thanks for your comment. As you may know, it is fairly rare--especially early in the course of living with Parkinson's--for someone with Parkinson's to have no response to levodopa. In fact, one test physicians may use when there is uncertainty about a diagnosis is to see if someone's symptoms improve with levodopa. If symptoms do improve, this is generally thought to be consistent with a diagnosis of Parkinson's, and if they do not improve, a physician may consider other diagnoses or order a test like a DatScan, Syn-One, or SynTap. See the blog post and below article for some more information: davisphinneyfoundation.org/new-diagnosis-aid/ www.ncbi.nlm.nih.gov/pmc/articles/PMC8046721/ Have you been diagnosed by a movement disorder specialist? If not, it may be worthwhile to try to see one. If there isn't a movement disorder specialist available to you, it may be worthwhile to see a neurologist for a second opinion.
Thanks for your comment and observation. You're right that Dr. Espay does not precisely define the subtypes he sees as most important/significant. Instead, much of the webinar conversation focuses on need to improve our understanding of the biology of Parkinson's to improve our ability to subtype effectively. We will be releasing a follow-up conversation with Dr. Espay wherein he more directly addresses some of the common ideas about subtyping. We are working to release this video within a few weeks.
With all this uncertainty & lack of knowledge of the subject I’m wondering if you would consider the theory propounded by Sackner-Bernstein that the problem is too much rather than too little dopamine. (Just not getting where it’s needed). One reason why in time levodopa causes more problems.
Dr. Sackner-Bernstein's idea is complex and worthy of thought, but at present much more research is needed to know what the consequences of his treatment proposal might be. As for whether we would consider the theory: yes, members of our staff and board have been in contact with Dr. Sackner-Bernstein to discuss the theory.
Why hasn't this been solved already??? We have the advantage of and the researchers losing their jobs because this would be done! I'm disgusted with the inability of people like yourself to come up with a solution that is helpful and any manner regarding Parkinson's there I've said it exclamation for the millions of people who have been diagnosed with this disease there's absolutely no reason why I cannot already been solved.
![[MV] A leap of faith...ความเชื่อใจครั้งสุดท้าย (From "Petrichor the series")](http://i.ytimg.com/vi/U1piZH2CNXA/mqdefault.jpg)
Amazing! Dr. Espay is inspiring in his brilliant and ethical approach to PD. This has been the first time since my diagnosis this spring that i have felt inspired and hopeful! Please bring Dr. Alberto Espay back for further discussion!
Thanks for your comment. We have already recorded a follow-up to this conversation with Dr. Espay. In it, he answers some additional questions from the audience of this webinar. Keep your eyes peeled for that video. It's in our video production queue and we'll have it out as soon as we can!
This is the explanation I’ve been waiting for. From someone who doesn’t seem to have a stake in his own hypothesis. Please bring Dr. Espay back!!
We have already recorded a follow-up to this conversation with Dr. Espay! Keep your eyes peeled (or better yet, subscribe!) to be notified as soon as we publish it, which will likely be a few weeks from now.
Thank you for your humanity and your belief. I learned a lot and your attitude encouraged me.
this neurologist knows his stuff, best discussion I’ve ever heard on the subject of Parkinson’s 😊😊😊😊❤❤❤❤
Well, he’s not going to make too many friends with this video, but what do they say “someone has to speak truth to power?” very well explained and I can’t say that anything here was a big surprise. Bravo for being honest!
Thanks for your message! We are very grateful for Dr. Espay's candor and passion for the wellbeing of all people with Parkinson's. This year marks the 20th anniversary of the Davis Phinney Foundation, and we're fortunate to have had Dr. Espay as a friend of the Foundation since the very beginning.
Of course, please bear in mind that, in keeping with Dr. Espay's message, you have your own experience and circumstances, and you should always consult your own personal care team before making decisions about your treatment plans--including decisions about whether to pursue any diagnostic test or participate in any clinical trial.
Glad to find this. I may have missed it during three months of offline chaos. 😊
Brilliant presentation. Making things clear and understandable. I'm a participant in the Fox Foundation PPMI research. I've had non-motor symptoms for years (I'm 79). I'm now in the "you exhibit parkinsonisms" stage. I wanted to participate in the research to help move the process along.
Hi, I joined the study also after I did the smell test. I do not have any noticeable symptoms and am nearing age 70. I fly up to Ct. to have the DSTAT test 10\124.
Thanks for your comment and for your interest in moving things along through research. While participation in research isn't in everyone's interest, it is important for those who DO have interest to do so.
Regarding the "you exhibit Parkinsonism" stage (and the comment @stevenrein3118 made), here are two resources that might be helpful toward the goal of clarifying your diagnosis:
davisphinneyfoundation.org/new-diagnosis-aid/
davisphinneyfoundation.org/parkinsons-parkinsonism/
This is important information. Eye opening.
Great insights
Exercise but equally I very much believe music, is how I've made it this long before anyone realizing, something serious and more identifiable is what they've noticed but not known what, partly due to age bias, but also due ubiquitous music rendering less noticeable combined with cover of choreography to appear more normal in short stints by myself, since adolescence sudden awareness of my own difference. Parents began hyper focusing on my walk and stance, when they had not before, although I remember years earlier strangers being weirdly hostile to my parents occasionally at places like parking lots, or gas stations as we were always traveling, that they should get help for me, which seemed odd to me, and my parents because frankly outside of my gait and any other wobbliness sometimes, mostly I was acrobat, with steller balance. My balance got more difficult in 2011. At the height of my best physical fitness, which had improved all the years after I stopped driving and walked everywhere because I was blind. Music was always there and how I have handled being alive all my life. Am now 60.
A-Syn is everywhere in the body, but it's not clumped in the body of a healthy individual.
A DAT scan is also just a confirmatory test, but many individuals with PD have had them. Giving someone levodopa to see if it helps is also a way of confirming a PD diagnosis.
But both of these require an individual to have motor symptoms, which research states 60 to 70% of your dopamine producing neurons may already be lost. 🥺
When a disease is diagnosed the SAME way in 2024 that it was in the 1800s 🤯, having a confirmatory test that does not require nuclear medicine is fantastic. 👍
Duke University is also doing a clinical trial on a blood test that could be used to confirm a diagnosis, or identify a risk of later developing PD.
As the research continues, we're going to see a paradigm shift in our ability to identify people who are at risk of developing PD.
Since we now know that a change in diet and exercise exercise exercise can in fact be disease modifying, why do we not want to tell people about their potential risk for PD?
I really hope the medical experts figure it out amongst themselves quickly. 🤷♂️
❤❤Very very interesting.
This makes me wonder about the genetic subtype also possibly for Supra Nuclear Palsy?
You mentioned there was going to be a part 2 uploaded. Where is it?
It is scheduled for publication on October 7th. A link will be put in the description of this video and in the blog post here: davisphinneyfoundation.org/webinar-recording-live-well-today-parkinsons-subtypes/
If I had to guess, I'd think our speaker is leaning on future discoveries of Parkinsonian susceptability being genetic because he is looking to a mitochondrial placement for the strained connection (in sufferers) between the 'will' or desire to perform a task, and the failure to produce a physical response to satisfy the desired action. The broken link then, moves beyond the brain and cns, to the body in sum. Our poor, sleepy little mitochondria just aren't getting the message!
Thank you
Is there any currency to the idea that a-Syn deposits locally as a means of 'insulating' areas of the brain and cns experiencing 'leakage' of the small charges, or to inhibit an area experiencing excessive output from adjoining areas?
Levadopa did not do anything for me
Thanks for your comment.
As you may know, it is fairly rare--especially early in the course of living with Parkinson's--for someone with Parkinson's to have no response to levodopa. In fact, one test physicians may use when there is uncertainty about a diagnosis is to see if someone's symptoms improve with levodopa. If symptoms do improve, this is generally thought to be consistent with a diagnosis of Parkinson's, and if they do not improve, a physician may consider other diagnoses or order a test like a DatScan, Syn-One, or SynTap. See the blog post and below article for some more information:
davisphinneyfoundation.org/new-diagnosis-aid/
www.ncbi.nlm.nih.gov/pmc/articles/PMC8046721/
Have you been diagnosed by a movement disorder specialist? If not, it may be worthwhile to try to see one. If there isn't a movement disorder specialist available to you, it may be worthwhile to see a neurologist for a second opinion.
Does MSA is a parkinsonism ? A Parkinson subtype or a condition in itself ?
hey there, we will put out another video that will address additional questions we weren't able to get to in this video.
Never answered the question…so what are the subtypes? Everyone is different isn’t an answer
Thanks for your comment and observation. You're right that Dr. Espay does not precisely define the subtypes he sees as most important/significant. Instead, much of the webinar conversation focuses on need to improve our understanding of the biology of Parkinson's to improve our ability to subtype effectively.
We will be releasing a follow-up conversation with Dr. Espay wherein he more directly addresses some of the common ideas about subtyping. We are working to release this video within a few weeks.
I was very disappointed, too. The subject title and the content didn't match at all.
@@sunahamanagai9039 thanks for your reply
Why doesn't someone look into the food we eat,the answer might be there!
There is NO reason that the government researchers can’t get necessary funding. 😂
Big Pharma controls the people who control govt. funding
I believe cortisol related
Without a-Syn as a causative, is 'Parkinson's' anything more than a collection of symptoms?
With all this uncertainty & lack of knowledge of the subject I’m wondering if you would consider the theory propounded by Sackner-Bernstein that the problem is too much rather than too little dopamine. (Just not getting where it’s needed). One reason why in time levodopa causes more problems.
Dr. Sackner-Bernstein's idea is complex and worthy of thought, but at present much more research is needed to know what the consequences of his treatment proposal might be.
As for whether we would consider the theory: yes, members of our staff and board have been in contact with Dr. Sackner-Bernstein to discuss the theory.
@@davisphinneyfdn Your open-minded willingness to explore all avenues is a great encouragement to me. Thank you!
nothing new 😢
Why hasn't this been solved already??? We have the advantage of and the researchers losing their jobs because this would be done! I'm disgusted with the inability of people like yourself to come up with a solution that is helpful and any manner regarding Parkinson's there I've said it exclamation for the millions of people who have been diagnosed with this disease there's absolutely no reason why I cannot already been solved.