Another Benefit

Since my diagnosis with Parkinson’s, I have struggled with my vision. It became impossible to text with my cell phone, because I simply couldn’t focus to see to hit the appropriate keys. That is when I learned about prism prescription glasses. They have been such a blessing, and they continue to be necessary for me to type my message to you here. But Something happened that tells me my eyes are improving. Where I volunteer each Thursday, there are some words posted on a wall, and I have needed to wear the prism lens in order to read it. But this past week, I couldn’t read the words with my prism glasses on, but was able to see the words when I removed the glasses. There has deffinitely been a change in my vision, for the better. I attribute the improvement in my vision to the more comprehensive nutrition of LuminAloe.

Scroll down to learn about the other ingredients included in the formulation

Opportunity to participate

I f You (or someone you know) have a speech impediment that makes it difficult to be understood, THIS is FOR YOU

Systems don’t always work as well for people with atypical speech. By personalizing its speech recognition to the individual, Project Relate seeks to improve everyday life for people with speech impairments.

Project Relate is a continuation of years of research from both Google’s Speech and Research teams, made possible by over a million speech samples recorded by over a thousand individuals. We welcome new trusted testers to experience the app and provide feedback. Express interest at

(I have cut and pasted the form, so you can seethe qualifications required to participate )

Google Project Relate Interest Form

You are signing up to be included in a beta research app release of Google’s Project Relate.

Project Relate can be trained to understand your specific speech, if you provide it with examples of you talking. Project Relate needs at least 500 phrases to be trained; most people need 1-2 hours, which can be spread over multiple sessions, to complete their 500 phrases. You will need an Android phone (e.g. Pixel, Samsung, OnePlus) running Android OS 8 or later to be able to use the app.

We value your thoughts and feedback. When you submit your feedback to Google, we will determine your eligibility (based on certain compliance and legal considerations) for either a cash or other non-cash incentive, up to $60 or local currency equivalent.

IMPORTANT: If you’re filling out this form on behalf of someone else, please ensure you have their permission to do so.

The purpose of this questionnaire is to verify your eligibility to download and use Google’s Project Relate app. The data you provide in the app and this form may be used to assist Google to design, research, develop, build, and improve the accessibility of its current and future products and services related to speech technologies. Information you provide in this questionnaire may be combined with other information and data that you chose to provide during the data collection, if you are selected to participate.

Questions? Write us anytime at

  • Strangers or people I just met find it difficult to understand my speech (and not just because of an accent).
  • I am 18 years of age or over
  • I have access to an Android mobile device, running Android OS 8 or later, to download the Relate app
  • I understand I need to record at least 500 phrases (which can take anywhere between 30 to 90 minutes) in order to train Project Relate to understand me and that new features of the app that are unlocked by these recordings may take a few days to receive.
  • I understand that even after recording 500 phrases, Project Relate may still not understand me perfectly.
  • I understand I will need to record each phrase word-for-word in order to teach Relate to understand me. If I don’t say exactly what is written, Relate may not work as well. If I make a mistake, I can re-record the prompt.
  • I understand that the phrases I record will also be used to help improve Google’s speech technologies and the products and services that use them.
  • I understand that Project Relate is for English speakers only at this time.

You must confirm agreement with all the listed criteria to participate


This is a link to an introduction of the Cue1… a non invasive tool that I signed up to receive updates on.

………………………This is a chat entry by a gentleman in the UK

“Ok… so… I went on the waiting list in September 2020 and received my CUE1 in early February just gone.”

“The first couple of days I didn’t really notice much difference, then all of a sudden it dawned on me that my balance had improved a lot and that stiffness and slowness were improved too. I don’t think it does a lot for my tremor but could be wrong. Everyone is different so don’t be put off by this.”

“If you’ve got questions, email the team at Charco, they are lovely and very approachable.”

………………………..and this posted in the chat by Deedee777

I live in the United States, and this is the response that I received today from Charco Neurotech (Team Charco ) regarding their CUE1 availability for customers in the USA:

“We are offering the CUE1 to those on our UK waiting list. As a medical device company we are unable to make the CUE1 available to those in the US until we have been approved by the FDA. ” Team Charco,

Go to their website, for detailed information on CUE1, and to sign up to their Waiting List: Their website is:

I’ll keep you posted.


Make some noise

I found this article from ‘Parkinson’s News Today’ insightful… I’m appreciative to the PD Support group . They help me project my voice.

patients speak less | Parkinson's News Today | illustration of woman speaking with megaphone
Parkinson’s Patients Speak 60% Less Than Healthy Peers

“People with Parkinson’s disease verbally communicate less than those without the neurodegenerative disorder, according to a recent study that discovered that patients speak about 60% less than their healthy peers.”

“Apart from the tremors and movement issues associated with Parkinson’s, the disease also can disrupt aspects of a person’s speech, including volume, rhythm, and intonation. Such difficulties in speaking lead those with Parkinson’s to rate themselves as being worse at conversing compared with their counterparts without the disease, according to researchers.”

“Now, a new quantitative study shows that, in fact, patients speak for fewer minutes each day than those without Parkinson’s.”

“In some cases, a person with Parkinson’s will hesitate to speak or pause when speaking, leading even attentive listeners to jump in or talk over that person,” according to a press release from the University of Nebraska-Lincoln. Angela Dietsch, PhD, an associate professor in the university’s department of special education and communication disorders, conducted the study with Jeff Searl, PhD, director of the undergraduate program in communicative sciences and disorders at Michigan State University.

+The study reporting their findings is titled “Daily Phonatory Activity of Individuals With Parkinson’s Disease,” published in the Journal of VoiceThe two researchers investigated the amount of phonatory activity — also called phonation or voicing, but basically, how people speak — among Parkinson’s patients compared with those without the disease.+

“The team looked at 30 age- and sex-matched individuals, half diagnosed with Parkinson’s and using dopaminergic medications — commonly used medicines to replace the dopamine lacking in Parkinson’s patients — and half without the disease, who served as the control group.”

“All participants were asked to wear vocal monitors — specifically, the VocaLog vocal monitor — for three days while going about their daily lives. The monitor measures the number of one-second windows in which the sound is increased over zero and then reports that relative to how long the monitor is worn. That allows for the determination of %PA, or percentage of phonatory activity, which essentially quantifies how much time people speak.”

“This method gets around the usually used questionnaires, in which participants often overestimate their speaking time.”

“The Voice Handicap Index score — a self-reported measure in which patients report how much their voice disorder impacts their quality of life — also was assessed.”

“Results showed that patients with Parkinson’s had, on average, 54 fewer minutes per day in which they spoke, resulting in about 60% less speaking than those without Parkinson’s. Those with Parkinson’s had 11.1% phonatory activity over the course of the three days, while those without the disorder had an activity of 18.6%.+

“Additionally, the Voice Handicap Index was found to directly correlate with the amount of speaking the patients did. Those who scored themselves higher on the index, meaning they had less quality of life due to a higher impact of vocal issues, tended to speak less than those who scored themselves lower.”

“Overall, “the results indicate that PwPD [people with Parkinson’s disease] engaged in less verbal communication in their daily environment compared to adults without Parkinson’s disease,” the researchers wrote. “The findings support reports in the literature indicating that PwPD often have reduced communication participation.”

“Furthermore, the team believes that the percent of phonatory activity may be a useful measure to assess communication changes in patients with Parkinson’s disease, as a way to evaluate both disease progression and treatment.”

By Yedida Y Bogachkov Phd

Red Light

I’ve heard about the red light cap called the Coronet. I ran across this lengthy transcript from the retired medical practioner, Catherine Hamilton. In her detailing the research she talks about wave lengths and waking up brain cells. Although it is lengthy, I feel like it is worth reading. I shall persue getting one when I can fit it into my budget.

———Red light therapy Sep 8, 2021 Nosilverbullet4pd

We were delighted to host Catherine Hamilton, a retired medical practitioner and author of the Red Lights on the Brain blog. Together with Ron Brown, an electronics engineer, Catherine established Well Red Pty a company that produces and distributes the Well Red Coronet.

The topic of Catherine’s talk was, “Red and near-infrared lights – can they help degenerative neurological diseases?”

The potential health value of red light was recognised over a century ago. It took another 90 years for medical researchers to rediscover the potential, and restart research into the health effects of red and near-infrared light on conditions such as Parkinson’s disease.

More information can be found on Catherine’s website

NB: Please note that we have no commercial relationship with our speakers. We simply organise topics that our members have shown an interest in and are welcome to receive other suggestions


Thank you for helping me make my own red hat very good.

Well it started back in 2015 with an arthritic knee that and and I was threatened with knee replacement by a surgeon and I’m a retired medical practitioner. I don’t do surgeons. I hate surgeons. I won’t let them near me unless I absolutely have to. I know it’s terrible isn’t it. So I started looking around for things that might help and my husband bought the book you know the Norman Doige book the brain that heals itself. There was a chapter in there about lights which I thought was absolutely fascinating. It mentioned park concerns but it also mentioned arthritis. It said that the brain you know if you put red near infrared light on the brain you can regenerate brain cells and also if you stick them on arthritic joints you can regenerate cartilage cells. Now when I went to medical school a hundred years ago that would have been total heresy and I remember sitting there you know thinking what a lot of rubbish. But because I was desperate yeah you start looking and at that stage through our community orchestra I was I was able to access the university of Tasmania’s digital library and started downloading articles about red and near infrared lights found to my embarrassment that in fact there was a lot of good research out there about it. As I kept reading I found the work of a guy called John Mitrofanis who was then a professor of anatomy at Sydney Uni and he’s a neuroanatomist and his area of it research was Parkinson’s he was doing the most extraordinary work. He started putting lights on mice the reason he started it was one of these conversations in the in the common room he was talking to his mate who’s a professor of physiology and he said I’ve worked out that the mitochondria are the problem in Parkinson’s disease but I don’t know how to simulate them this guy said I should put some 670 nanometer light on them and that’ll make the mitochondria sit up and take notice. and John Mitrofanus kind of reacted like I’d even said really this is rubbish but he said why not. So he with his Parkinson’s mice he did just that and he found in fact that after you know shining light on their heads the mice which before had been very parkinsonian really difficult moving were starting to dance the watusi you know literally and he was he was a bit surprised so that was about 2010. I think so that set him off doing a series of you know really beautiful research

He then collaborated with a lim benefit he’s the guy who devised the deep brain stimulation for Parkinson’s and they so he’s John Mitrofanis has spent you know a few months each year at Grenoble where elin bennebet is based and they did some amazing work in 2016 they developed a probe to go into Parkinson’s into the brain like a dbs except with the light at the end of it and then it kind of got all political so they haven’t been able to test it out very well except in monkeys. So I’m sorry guys if any of you are not into animal testing this is kind of part of medical research. Anyway back I had a friend whose husband had Parkinson’s and I said to him you want to do something completely daft and he was he was up for it so I bought you know went online bought some 670 nanometer red LED strip and then try to work out a way in which to make a light a light hat I do have funny photos. But you probably didn’t don’t need to see them but I ended up with this thing. Here. Can you see it’s a bucket it’s a cut-down bucket and inside it it’s got it’s got a sort of foil lining and then I put in LED strips in there and if I it’s absolutely revolting but it works. Hang on I’ll just fire it up and show you how it works. It’s best to do that at home than in the street I guess [Laughter].

Okay that’s pretty bright where’s that thing there so that’s a 670 nanometers that sits on the head and then after you know a few minutes that’s the near infrared which is a bit hard to see so this wonderful man started wearing this thing once a day initially and he went to see his neurologist about three months later he actually he’s a geriatrician who specializes in Parkinson’s and Frank the specialist was expecting to put this guy on to medication and he was very surprised to see improvements and the improvements were in motor his tremor was less his walking was better his fine hand movements were much better. In fact he had lost the ability to bowl you know playing lawn bowls he’d lost the ability to hold the ball and or more to the point to release the ball or the bowl. I should say so he was doing it left-handed but he regained the ability to use his right.

The other thing that I noticed back then was that his facial animation really improved. Instead of being very impassive Parkinson’s face he started to have a sparkle back. The other thing was his auditory processing that he it took a long had been taking him a long time to understand what was being said to him and so if people spoke quickly and the conversation kind of moved on he lost you know he lost the threat of the conversation. So he didn’t hear it that much so his wife had noticed that she was telling him the same thing over and over less often that she didn’t have to repeat herself as much.

So then from that Frank said can you make me some more buckets please and so I made with my husband they made a few more these buckets and we put them on different people with Parkinson’s and we contacted John Metrofanis and he came down and met with all the people here we had the most marvelous sort of lunch and afternoon tea and he gave us a lecture and he was pretty pleased so and it’s what it’s kind of continued from there. A little while later I decided that I’d worked out the parameters for a transcranial device for research purposes so a mate of mine who’s we play in the same community orchestra he’s a tympanist and he’s a really clever electronics engineer so he and I kind of nutted out the what’s become the coronet, which is that chappy which is a hell of a lot easier to wear than the other one. So that’s been used very effectively. So that’s a great introduction it’s fascinating story actually it is explained in such a way that we would listen to you for hours about that I don’t know about that it’s my accent [Laughter].

So can we zoom in a tiny bit more on the topic of the science behind the red light therapy in particular I think that it would be interesting to understand how it does penetrate the body and what does it what impact does it have. You mentioned mitochondria I’m sure that you’re thinking also about neurons so basically how does this what is the science and how does it really impact the body please?

Okay so I might put a few slides up these are some powerpoints I used last month when I spoke to the local Parkinson’s support group. So it’s kind of very basic but I see oh no hang on I’m supposed to hang on me here we go oh where’s it gone come to mama where is it there it is so can you see that? yes perfect oh got it good you can see all these batteries yes next. So this is John Mitrofanis I just want to show you him he’s become a real family friend now and he’s just gorgeous and he’s now based he’s taken over professor William Benedict’s role at Grenoble so he’s now in your part of the world doing and doing really amazing things. He’ll be using that coronet device that like had I showed you in some research in the next few years. So that’s very exciting okay so here’s a summary I’ll go into some more detail in a minute so red and near-infrared light in it has the ability to penetrate through the tissues so if you stick it on the head it’ll penetrate through the scalp and skull and into the outer brain cell probably two to three centimeters worth of brain tissue. Now why it has that ability no one really knows the other wavelengths don’t and the blue and the green and so on they don’t have that it’s it just seems to be something to do with the red.

It stimulates the mitochondria that the mitochondrial wall has got a bunch of different proteins in it and it seems that the red light comes through and it stimulates the proteins in fact it doesn’t even need to do that if there’s a little sack of water inside the wall of the mitochondria the light will change the density of the water and that in itself will then create a charge and that kick starts the mitochondria into starting to into being more active and building up. Now remember that from your days in biology classes the mitochondria are the cell batteries or the powerhouse of the cells so when I said to you that you know John Matriphanus had worked out a few decades ago that the problem in Parkinson’s was that the cell batteries weren’t working. He wanted to do something to stimulate them and it seems that light really does that.. So when the mitochondria gets a light pulse it you get a chemical reaction within the mitochondria you get the mitochondria sort of sizing itself up and getting all that activated and sort of saying right oh let’s do stuff.

The stuff that it does it sends out a whole bunch of chemical messages it sends a message to the cell nucleus and tells it to start the process of reproduction actually making new cells it the transcription factors it’s called it sort of gets them going. So it stimulates the making of new brain cells which is neurogenesis and it really does happen. It stimulates some you know whatever that cell’s meant to do if it’s a dopamine producing cell okay the cell starts producing dopamine so it actually gets busy doing what it should do. It changes the chemical soup outside the cell increases a thing called nitric oxide and that irritates the wall of the blood vessels and so the walls start to sprout new blood vessels. You get increased capillaries going around that area which means you get more blood flow more oxygen to the areas. That’s kind of nice too.

So recent work has shown that it’s the neuron it’s not just individual neurons getting kind of a lift and a feeling happy it’s a whole bunch of neurons then start working together. So the pathways in the brain the neural pathways say involved in memory or aspects of cognition or whatever those neural pathways somehow get strengthened. No one’s quite sure how that happens but it definitely does happen. You’re getting a reduced inflammatory response and that’s quite handy when you’ve got inflammation which is part and parcel a lot with a lot of the neurodegenerative diseases like Parkinson’s and Alzheimer’s. So what I’ve been talking about is a direct effect but it also has a very good indirect effect I’ll describe that in a sec. So if that doesn’t make any sense bear with me I might be able to explain it better. Okay so Parkinson’s is a disease of miserable mitochondria.

The mitochondria the green blobs with the yellow around them and they’re the walls you can see that there are two layers in the wall lots of proteins lots of curious things. So here’s a cell batteries and what we want is a full mitochondria full cell battery and what we tend to have is a lot of low batteries. If you have a dead battery well that’s it the cell has completely died and in Parkinson’s the dopamine producing cells die.

So a dying mitochondria can be revived. If you chuck red and near-infrared light on it okay .so here you have a cross-section of the of a you know sort of the drawing of the brain and you can see you’ve got the basal ganglia you know the area that produces a dopamine and is a problem area and Parkinson’s deep in the middle there. But you know that’s that all those red lights certainly not going to go anywhere near that base. Again bear with me firstly you get a very strong direct effect remember I said you get the outer two to three centimeters of the brain cells that’s a lot of neurons getting a lot of light and remember it’s not just a basal ganglia that that get upset in Parkinson’s it’s all the other cells that that work with it when the basal ganglia cells and the dopamine-producing cells don’t work so well then all the other cells that connect to it and rely on it start to fade away as well.

So you’re giving your cells in the outer part of the brain quite a direct boost and surprisingly we’re all pretty surprised it does seem to make a difference. So the indirect effect is where the where the light pulse can be taken from one part of the body to another. This sounds bizarre but there’s a technical medical term for it which is abscotal or abscopal effect. Depends how you like to pronounce it. You see that with other things as well so if I put some light on my left red light on my left big toe in theory and in practice that red light pulse can actually do something inside my brain it can travel know we didn’t actually know how it traveled. John Metrofanis has thought it was something to do with the immune cells circulating in the bloodstream.

But in 2019 we discovered only then that mitochondria pop themselves into the bloodstream and whizz around so they have the ability to pop outside of a cell pop on in the bloodstream go for a kind of a jolly go up to Scotland go down to the big toes you know just wander around. And when they fancy it they think ah I just pop in and have a have a chat to the liver cells and pop into a liver cell now you think how long we’ve been studying the bloodstream and we didn’t know that until a couple of years ago. It’s pretty amazing but that’s probably almost certainly how the light pulse gets carried around and the body has got the ability to you know to send ambulance workers as it were to where the areas are of need are. It seems that it’s it sends light pulses to the basal ganglia so a lot of the effects that you get that we saw in that original bloke were clearly improvements in the basal in the dopamine producing cells and like that function. The only way that that could have happened is if light got to that area the only way that could have happened is this through this indirect effect.

Oh here’s me trying to be creative ignore that. This is frank Nicholas I was telling you about he’s a lovely geriatrician he’s a really gorgeous man and he’s equally mad as me. I think I’m to suggest that I make bucket light hats for his patients and then ask patients to have a good have a try it’s just wonderful. So back in 2016 when we were putting buckets on people’s head what this is what we were looking for we were looking for safety obviously we wanted to be safe and it’s a 12-volt device as all of them are which is good we wanted to make sure that people would actually use the damn things every day because if you’re trying to recharge a battery cell battery you need daily doses. We’re obviously concerned about adverse side effects and what we will totally and utterly focused on was the motor signs particularly the tremor particularly walking the shuffle and the shape and next one so what did we find well we certainly found improvement in motor signs. The shuffle and the shake improved speech improved. That was really quite a big one and some people the first time they used their light their speech started to get clearer voice started to get stronger articulation became better and as well they their sentence constructions were longer and more complex rather than just kind of brief and limited. Fine finger movements really definitely improved. The freezing of the gate improved swallowing one you know one of the early blokes had troubles with a blood pressure tablet which is quite big and he was he found that he was able to swallow that very much more easily using the lights here’s the same guy who had a lot of coffee and the coughing stoppec too the drooling stopped and writing improved. So we were a bit surprised and pretty pleased but what was really I guess gobsmacking in many ways was that non-motor symptoms improved these are a lot of these are ones that don’t get that much mention in Parkinson’s because they’re almost impossible to treat.

Fatigue is the big one. Fatigue is the elephant in the room in the Parkinson’s consultation room because just about everyone with Parkinson’s gets fatigue. That’s you know it just develops and then once it’s there it doesn’t tend to go away whereas people found that they had more energy that the fatigue had gone. They were starting to do things they’d like to do before and then just not getting as tired as they used to.

The sleep quality improved and particularly the disrupted the dream enactment you know where there’s a disconnect you know yeah you know about so in Parkinson’s instead of dreaming about running away from a herd of elephants but and being completely still as we normally are that they start physically running with the herd of elephants behind them in their dream and so that knocks their partner out of the bed and they knock themselves out of the bed it’s quite pretty uncomfortable. That rem sleep and dream enactment behaviour stopped in a lot of people. And their sleep quality improved. Their partners were deeply grateful because it’s pretty hard having someone thrashing around in the bed next to you.

Cognitive function improved attention and memory judgment and decision making some of them hadn’t been able to make decisions found it easier to make decisions. Anxiety is another big one and that improved so mood meaning particularly meaning repression symptoms improved. Apathy was another one that it took me a while to really appreciate because that’s another elephant in the room over a third of people with Parkinson’s get apathy that’s different to fatigue apathy is where you just completely lack motivation. One bloke called it the couldn’t be bothered and he for him that was the main symptom a month into rearing his bucket he lost he got his kind of there couldn’t be bothers left. Interestingly he didn’t realize that it goes it’s just I saw him a month after because his bucket lights went bum. I mean he came over the our place and we did a running repair and I said how’s it could be bothered he said oh it’s gone I’ve forgotten all about it. So it’s really kind of subtle symptoms but apathy is a really important one. It has an effect on if people develop apathy then it means that the progression on the of the motor symptoms is going to be faster. So it’s actually a signal of more rapid potential for more rapid decline. So in theory we don’t know this yet but in theory if you can stop apathy happening and keep it at bay then this rapid progression may not happen. So it’s pretty it’s pretty exciting stuff. So that’s you know part of the research that needs to be done. We haven’t written that yet this is all kind of new all these things.

Some people got their sense of smell back which was kind of really bizarre you know. Frank reckons that’s one of the kind of the gold standard things if you can get sense of smell back in Parkinson’s because a lot of people lose it well before they get the diagnosis that’s pretty amazing. So things like constipation improved and anhedonia.

I’ve got to tell you a story about one lady she started work she’d had Parkinson’s for being diagnosed with a few years but obviously had it for about I don’t know around about 10 years looking back. And she been wearing the light hat for about eight months and she went for a walk along a cliff tops overlooking one of the lovely beaches here in Tasmania and it was one of those lovely exhilarating days you know when the sun’s shining the birds are whizzing around it’s just you know there’s wind it’s just one of these gorgeous days where you just completely lift it out of yourself and she’s realized that she felt exhilarated really felt wonderful that and then it occurred to her that she hadn’t felt like this for at least 10 years and she and she rang me up and said you know I realized I’ve lost my sense of joy and I hadn’t known that my sense of joy had gone. It was pretty amazing so you know people I tell the story to people now when we’re playing with lights for them and I ask the question and tell me about your sense of joy they look at me like I’m a complete fruit loop, but it’s a real and important thing.

Okay what we got next so going back to this we’ve got the direct effect we’ve got the indirect effect most of the non-motor symptom improvements almost certainly comes from that direct effect there because there’s a lot of those cells involved in memory energy levels apathy motivational sort of stuff and cognitive function or in the outer areas there.

So what we found in summary was that the lights were safe. The motor signs improved. There was a high compliance. People like using the lights it feels nice and there were no adverse side effects. The only side effect we noted with a some bloke started to get a bit of hair growing back on the head. Which they were pretty keen about and the as I said the effect that we had no idea about was the improvement in non-motor symptoms and I tend to go on and on and on about non-motor symptoms. Because there’s no pill there’s no pharmaceutical for apathy or for fatigue as there’s limited pharmaceuticals available to improve sleep quality. It doesn’t stop the dream enactment stuff it might make you sleep a bit longer the standard sleeping pills but it actually doesn’t fix the problem.

Antidepressants for mood and anti-anxiety tablets are problematic and people with Parkinson’s so they don’t work very well. I can’t remember the other ones but it’s when you have something as simple as sticking a bunch of lights on your head a couple of times a day to make these symptoms feel you know better it’s worth doing. The other thing about these symptoms is that if you talk to people with Parkinson’s and ask what are the things that really cause misery to your day make your day bleak and it’s not the shake and the shuffle it’s not the tremor and the problems with walking. It’s sleep fatigue and depression and apathy. For and for the as a carers and it’s a pretty similar list. Sleep is a big one because if the carer can’t sleep they don’t cope then things go downhill pretty quickly. It’s the apathy is a big one for them too because if you’re living with someone who can’t be bothered all the time you know it’s pretty it’s not very good life anyway. So that’s why I go bananas about non-motor symptoms they are the key to living well with Parkinson’s and lights really make a difference.

So when you put all that sort of science into reality this is the kind of stuff you get I don’t need to read them all out. But there’s a lot of good symptoms that improve been watching people using lights now for four and a half years and they’ve moved from the buckets to the coronet every so often we run on a electronics engineer as we improve the design we can change the parameters increase the power change the pulse rate change the length of time and we can even change location on the head. So that say for people who’ve had stroke involving speech they do better if they just have lights over the left side of the head rather than whole heads. So we can kind of do that so as we’ve been changing them we’ve been observing our bunnies, you know lovely people who’ve been doing this for us here in tessie we’ve we’re just keeping it does improve so all of them have really they feel in themselves and their and their specialist agrees that the progression has slowed down for some. For some of them they’ve not needed to have an increase in medication. One guy tried it and then went back off it because he decided he was doing that okay. Non-motor symptoms like apathy and anxiety and depression and sleep and fatigue where if they improved that improvement has stayed. So it seems that then when you get improvements in the non-motor symptoms they tend to stay. Thus far I mean we’ve only been observing this for four and a half years but that’s four and a half years more than anyone else has. So unless you’ve got this information so if I answered that question

Thank you very much Catherine I will ask the last question on behalf of the group and then I will basically let everyone just come in I think that I just wanted to talk a bit more about the practicalities. If you want if following this session any one of us wanted to experiment and go further in the use of red light therapy what are the solutions available I think that some of them are diy some of them can be boought of the shelves and then the practicalities like I think you mentioned there is a high compliance of two times a day but how long do you do it for how long does it take to see some changes coming through so just basically some practical questions if you don’t mind and then I will open up.

If you want to make your own don’t make the bucket light hat that I showed you before on the blog red lights on the brain there’s a description of this type of light device now and it’s made by an engine a retired engineer called Michael Richards and there’s the information is on the blog about how to make it. And the only use this stuff here is some plastic coated wire like you get from a hardware store and then you and there’s a video that that Michael did that’s on the blog as well and that’s quite neat you know stick it on your head looks good didn’t they he calls it the cossack for obvious reasons.

Do you mind sharing your screen dude do you mind stop sharing your screen so we can see

Oh yeah thank you thank you sorry and so oh that’s my friend Neil wearing the he’s a real rat bag as now okay so what’s happening I need to get out of there don’t I so the way that Michael has done it he’s got the two wavelengths there you can see the two connectors and this is the 670 nanometer so if I stick it on he’s actually made this quite tall he doesn’t quite he’s been getting yeah it doesn’t need to be still anyway that’s okay you still get a jolly good cove. But you can make yourself something like this at home and it does a jolly good jo. So you wear it preferably twice a day I’ve found that people do better twice a day. We started off with once a day and then we then we moved to twice

So with something you make yourself about 15 minutes each wavelength or if you just have a one wavelength one the red one just wear it for 20 to 25 minutes and what I say to people is to sit and use it when you’re already sitting down so I use my I don’t have Parkinson’s but I use mine twice a day anyway because I think better and I feel better. And my family tell me I’m a nicer person. So that’s a good reason to use it. So I have it you know when I sit down for breakfast with the newspaper my cup of tea and so I’m sitting anyway and in the evening it’s while I’m watching the news.

So as long as people can use it in not have it imposed on their day you know having in addition to is just use it when you when it’s suitable so that doesn’t take so much time. It’s comfortable to wear some people find it it’s quite soothing. I find that if I’m kind of really feeling pretty cranky and if anyone walks in the room I’m going to throttle them I find I’ll go and stick the helmet on and you know within about 15 minutes I start to feel a bit more human. So it seems to it is calming some people go to sleep some people do meditation you know or you just watch television or read a book or whatever you do and it does itself. You don’t need to do anything other than that it’s just wearing it twice a day or at least at least once a day. That seems to make the difference to the way the brain functions.

The coronet off the shelf that is available from your company:

Yeah this is this is the coronet let’s put my hair down. This is pretty beautiful okay can you see that yes it’s got two it’s an aluminium frame it comes in a flat pack and you bend it in to fit your head shape and because I can’t tell you how weird people’s heads are. I’ve just been amazed at the different shades each arm has got two wavelengths in it red and near-infrared and it’s set so that you just plug it in and stick it on and well just turn it on for a sec it just does it all by itself. There we go. Yes it’s working now this is one of the it’s look it’s just gorgeous it’s so elegant but it’s about 130 grams it’s really easy to wear. So it does this for 12 minutes and then they power down and the other wavelengths power up. I didn’t talk about wavelengths I’m going to turn this off now it’s driving me mad. Okay John Mitrofanis found that the two wavelengths that work the best at 670 which is that deep red of that color I had on them at the cell that has the best effect on the mitochondria so that seems to be really much and I’ve found that’s almost kind of like chocolate for all cells all cells love it all cells whether it’s a skin or cartilage cells or whatever. They seem to respond well to that the other wavelength is 810 nanometers which is near infrared you can just only just see it and the benefit of that one is it has the best ability to penetrate into the tissue. So it’ll penetrate. If you put the coronet on your hand so it’ll you can see it there’s light underneath it really does penetrate quite a long way. So and John Mitrofanis’s team found that if you use one wavelength immediately followed by the other that was more effective than either on their own or the two of them together. Which kind of makes biological sense.

Yeah thank you very much thank you so much one more question you asked ho. Long does it take before you see a change and again everyone’s different. And everyone’s Parkinson’s.

Hello my name is Sagit and thank you for your talk I’m a doctor myself but I didn’t have the opportunity like you to bring to people such a nice solution and I have Parkinson’s I really look forward to try to your treatment because I’ve read a lot of testimonials of patients online. I interrupted because I wanted to ask you how did you so you said that the wavelength you refer you are using were believed to be good for this kind of cells and for the mitochondria. Could you just say experimentally what kind of methods how do how do one know? Because I know that today biophotomodulation is really researched in many by many researchers so I understand it’s not just your opinion. Yes so what how do we know that these are the wavelengths just a cultural education you know a question?

Good question so I’ve used John work because his has been the most advanced work done on Parkinson’s and it’s not only mice his work done he’s also worked on the monkeys. So that’s you know the non-human primates so that’s the kind of closest you can get. I saw no reason to change the wavelengths he used because he’s done the cellular work on that so it’s not just animal stuff but he’s looked at kind of what happens in inside the cell and inside the mitochondria. And that is slightly out of my league to put it mildly because I’m a clinician not a not a molecular researcher. So I I’ve accepted that. But it seems to be pretty universal. The next lot the stuff that’s happened is that sometimes I haven’t been able to get 670 nanometer LED strip this is when I was making buckets for people and I could get 630 nanometers which was helpful but it was not as good. So just watching people and observing people using different buckets and different light devices you know I’m pretty happy that these two are the best. I mean if there is a way a wavelength that are better I’m sure someone will find them in time. But at the moment this is kind of this seems to be the best.

Thank you very much before we go further I think that there were some other questions and we still I think we have like 15 minutes can I just ask you maybe to give the room to someone else and then we’ll come back to you. You mind of course yeah. Catherine you were you was going to say also how long does it take before we start feeling the effect?

Some people have an immediate effect like I think I describe the and this can be people who have quite well down the Parkinson’s disease progression some people it takes them a few weeks. The usual kind of things that people notice first is the sleep improving. That often that’s happens within a few days. The anxiety just feeling less tense about life. Things are not as scary, they tend not to get as anxious and upset about thing. And they are one doctor described it as making the patients more resilient. You just kind of feel like you can cope like you used to cope. Some people notice in the first few days that that they improve with their sense of smell.

The tremor improvements and the other motor improvements and facial animation and perimeters tend to take a bit longer. And often the person is unaware of improvements. It’s someone else coming in haven’t seen them for a month and saying hi kat I haven’t seen you. My goodness look at the way you’re walking you’re walking so much better I can’t believe it. Yeah last week last time I saw you were shuffling and I looked down and said “oh really”. So it’s often the person doesn’t know what the changes are but often they do. I found gentlemen I’m very sorry about this but I’ve found that women are seem to be able to pick up changes whether they’re getting worse or getting better more than men. And men will often argue with the rest of the family and saying this is not doing anything for me, not changing anything and everyone else can see it improves. However men often say that about medication as well it’s not doing anything for me what’s the point of taking it.

Thank you. You had a question about dbs surgery I think Paul are you still with us.

Yes I am. Thanks man welcome. I had dbs surgery last year in august. I’m just wondering whether this system would have any effect on the dps and the any and the implants in the head?

No it doesn’t they completely ignore each other. I’ve got a number of people including a friend I went to school with who’s got DBS and so he and he’s a grumpy bastard too! I mean he really is quite character, and his grumpiness improved his wife is very pleased. Yes so no it’s not a problem at all.

Lucille you had a question about the metal the helmet itself are you with us? Lucille

it’s aluminium

I think that the question from Lucille was is it inert?

Yes it’s basically a printed circuit board so yeah and the idea of the aluminium is so that you can you can bend it into shape to fit your head and make it comfortable.

Thank you any other questions. Yes fantastic presentation really enjoyed it. Any downside anyone’s noticed at all?

I don’t think so I find that if people don’t use it then they start feeling unwell. One bloke Alan has a three day he describes it as a three-day rule if he gets slack his wife’s away and he gets slack and forgets to use it if he stops using it for three days he starts to get getting lethargic and tired and just you know can’t be bothered doing things and realizes that and that that’s probably what’s going on.

So I don’t I think the only downside probably is the time and most people build that into their day and that seems to work pretty well. There aren’t really any downsides that’s one of the things I found amazing about this is the compliance as people once they start using it continue to use it despite everyone laughing at them. That’s a very moderate cost.

You raise your hand with a question. Yes it I read it somewhere that it’s it is there’s some similar effects to the exercise I don’t know if that’s correct or not. But and I have a question regarding the safety because you know these lights sometimes are more heating they’re there I was not in beginning I don’t know if you said or something regarding the heat of the of the lights if that’s something that’s something that’s going to affect? And the lighter itself do you say the nanometers but you have do you have do you also have the frequency all right because the frequency is also important with the frequency because it can it’s as a its own so did you also do experiences on that or regarding the different frequency lights?

We use 40 hertz for both wavelengths and there’s evidence showing that that is able to kind of rattle the molecular bonds in the in the protein that gets laid down in the brain and sort of disrupt them and then that gets rid of them. We are not after a thermal effect. In fact if you look at my original bucket you know which has got a few holes that down the bottom versus this design here of the coronet controlling that the temperature was a critical thing because when Parkinson’s people get us changes in their skin which makes them more sensitive to even a small amount of extra exactly heat yeah that’s right and I had one bloke who he could tolerate 30 seconds of my bucket on the 810 nanometers but had to tear it off. So when he lived in another part of tassie I drove down and get you know stuck this on his head and had the fingers crossed when we got to the 810 cycle to see what happened and he was fine. So Ron has designed it with a temperature sensor in here so that if the top which is you know well above the head, if that gets to 50 degrees Celsius which is which is hot but it’s not going to burn and it’s not actually on your head. You know it’s above it if that gets it automatically powers down the lights. So I haven’t had anyone not able to tolerate it because of a thermal things. We as I said we work very hard to fix that.

Yeah okay thank you.

Let’s just see some a good point about using it on other parts of your body. My husband pranked his shoulder a few years ago so he spent a lot of time with the coronet on his shoulder and the tea towel over it and it fixed that eyes will sit in bed with my knee up and I’ll stick the coronet on my knee and sometimes I’ve got our 3d fingers I’ll stick it on my hands it’s really great

okay thank you very much.

A couple of more questions have come true I think that the first one is Florentia and the second one would be Simon. Florensia had you want to go ahead maybe it’s my question. Oh okay Lydia go ahead sorry I’m here go ahead and turn then Simon go ahead.

No okay that part of this is being that you sit down and are mindful for two times that also helps people with Parkinson’s so have you any idea how much better the infrared light is because in this stressed world just to sit down can help people and get out of stress.

Yeah it really does help I’ve got a friend with profound depression it’s been a lifelong devastating thing that has made him he’s almost paralyzed him and made life difficult. So he lives off grid and 35 years ago he started building his house and he still when I first met him he’d only a few years ago he’d only done the foundations. So you know that and it was depression causing that. So we took a bucket over and then later a coronet and it’s helped enormously. You know he’s not perfect but he’s functioning at a much better level now. He doesn’t tend to get the big dips so you know it really does help with depression symptoms and anxiety symptoms and just feeling better about life. And you know I’d say to some people often that if that’s a placebo effect I don’t care. I’m going to have it I love it.

Exercise I didn’t answer that in detail – exercise particularly really big wide amplitude exercise where you’re really pushing your joints because Parkinson’s is a disease of crumpling in. You have to actively work hard to work against that and that makes a huge difference. But John Mitrofarnis has written a book called Run In The Light which has got the research about exercise and lights and there’s I’m quite sure I’m working with a physio in Melbourne who’s a neuro physiotherapist and she’s quite sure from the work she’s been doing is that using the lights reduces the barriers to people exercising. Reduces the apathy it increases their energy which means that you know people are more likely to do exercise which is in itself helpful.

You don’t have to shave your hair off yes you will for that question there yes I think Steve’s you will lose a little bit of the penetration from having extra hair but there’s no way I’m shaving my hair off and you still get quite a good effect.

I think that there are a couple of questions yeah I appreciate that thanks so much one question actually sorry yes Steven. I see a question about should we shave your head I mean you especially but for we would be fine now I’m joking I will have to say a little bit like the couple of questions about the use of the light on other parts of the body and you already touched on that I think.

Florencia I wanted to ask about the abdominal level thanks Catherine there’s some research going on demonstrating the effects and the relation between the gut and the brain and Parkinson’s and I’ve heard some in research showing that just focusing the light on the abdominal level there can be changes on the brain. What do you think about it? And so there are some belts of red light being purchased and I want to know your suggestions about it?

Yep there’s definitely some evidence that that are putting light near infrared light on the gut changes the nature of the bugs the microbiome and it improves the ones that you want there increases the number and increases them it reduces the numbers of the ones you don’t want there. And it does make a difference. But if you if you want to use something on the gut if you want to use lights you must use it on the head. The head is a primary thing because you’re getting you’re getting the direct effect on the brain there which is significant. So what I should suggest to people if they’re interested in using that a gut thing is that if they’ve got a coronet you know this chappie to stick it on their tummy as well. Other people like you said using this kind of mat, but these sorts of things are great too and these are pretty cheap and I saw that yeah those sorts of things are great. And you can wrap it up. I use this for a sore back after a day in the garden but that’s awesome how do you use that. It feels warm but it’s a nice warmth and it’s the wavelength and remember it’s penetrating. So it will get in there then what the there are some arguments about the best wavelengths for the gut and I’ve seen some evidence of 670 being really good and I’ve seen some evidence for 810 and 904 nanometers but I think probably whatever you’ve got that’s red in a red light stick that on your tummy but with Parkinson’s you must have the head one that’s a critical thing.

Maybe another question here from Simon who is in your part of the world actually I think Simon was talking about far red far infrared I think Simon you want to explain? No okay so he was asking about far infrared. It doesn’t seem to have the biological effect that it feels nice you know the fire infrared booths you can hire or buy. You feel nice and warm it’s actually it increases it has a direct thermal effect in the far infrared so that’s why you feel relaxed and warm and kind of all gorgeous and soggy but it doesn’t seem to have the kind of effects as in red and near infrared. So if you want the biological effects red near.

And free thank you by the way Sam and he’s basically messaging that he can’t talk where he is but he heard your response so thank you very much. And we still had another question that I think we have touched on already which was about basically the long-term safety use I think you touched on that quite extensively. And where does one buy your hats and I think this is basically your website.

Yeah wellred.pto.pty yeah well read w-e-w-l-r-e-d okay.

Catherine I have I have a question for you hi Catherine I have your coronet duo and my husband has been using it for quite a few months I just wanted to know based on your experience of your patients who have been using coronet duo how soon did they actually see a change?

Again, I think I said before it depends on the person it depends how far how far the disease has progressed and it depends on the predominant symptoms. So for some people you can get changes pretty quickly other people it takes longer. So what are the predominant symptoms in your husband?

Actually what happened was two weeks after using the coronet duo I also started him on a probiotic ps128, because I had read about a clinical trial that had improved the motor symptoms. So what happened is one month after using the coronet duo and two weeks after I started the ps128 psychobiotics, he had a really tremendous change in his balance and also in his driving. Because whereas previously he was a bit unstable on his feet and I had this fear of him falling and I didn’t dare leave him alone, after using the coronet plus the ps128 psychobiotics it was like a different person. His balance became normal and he wasn’t as slow as before. Previously his driving he would not be able to judge very well so the lane discipline wasn’t so good. But after four weeks on the coronet duo and two weeks on the psychobiotics there was a great difference.

So I can’t tell you which one it was but you know yeah it worked out and I would not stop either. I would continue with it

There was a question that popped up so I was asking about a dependency and it’s not a dependency like valium or opioid drugs or anything like that. I would regard myself as being addicted to my coronet because I know that I feel better and I think it’s simply because it improves brain function. So if you if you want your brain to work better if you want the mitochondrial activity to be continually improved yes you continue to use it so if that’s defined as dependency then maybe it is but it’s the safest one you could possibly get. It’s not going to cause any other problems.

Does it mean that as long as you give the red lights you know the progression the improvement can be sustained and that the progression can be stopped?

It can be slowed. But that’s what I’m seeing now after watching people for four and a half years is the progression slows. For some I’ve got a couple of people who look like it’s kind of stopped. They’re people who’ve got Parkinson’s and they can’t two of them can’t tolerate medication and so it’s really easy to see what’s going on with them and for both of them it’s they’ve made improvements and they’ve maintained them. And one of them for two years one of them three. So now whether that continues I don’t know. We’re watching and waiting to see. But any delay in the progression of the disease is worth having.

Catherine thank you very much I think we would all agree with that and thank you Christina for your questions this is also very interesting to bring back the ps128 which is a topic for another day with an interesting one so thank you very much. We’ve been going for an hour I would just suggest that unless there is any final burning question I mean I know in francia you wanted to know do you ship your product catcher into your required I don’t know if you know that yes I think so I’d have to check them we’ve sent them to South America other South American countries so thank you very much thank you very much for your time and actually we’ve been running those sessions for six or nine months already so far and this is probably the one that has triggered the most active reactions so you can judge that the topic of red light therapy has kept everyone extremely interested. And I see a lot of thank you for you coming through the channel it is exciting yeah thank you very much Catherine and I wish you a really good evening thank you very much.

There is a reason


Johnny Jung wrote: in Medium… How to (literally) Clean your Brain:

What the past decade of glymphatic research tells us about sleep and its important implications for brain health

The brain: whether you give it credit or not, the soft gelatinous mass floating in your skull is responsible for life as you know it. At this moment, your brain is simultaneously maintaining your breathing and heart rate, while turning these black squiggles on a screen into coherent words and thoughts.

The brain is a workhorse and a hungry one at that. While accounting for approximately 2% of the average adult’s weight, it accounts for 20% of its energy consumption, more than any other organ.

Go ahead and give your brain a mental compliment and then think about how meta that was.

Fascinated yet? You’re not alone. Neuroscience research is booming. Growing interest and funding for neuroscience research has given rise to a burgeoning field of interdisciplinary neuroscience that ranges from clinical studies in neurodegenerative and behavioral disorders to basic science studies characterizing brain structure and function at the molecular level– and all this is for good reason.

In 2014, just nine common neurological diseases (Alzheimer’s and other dementias, chronic lower back pain, stroke, TBI, migraines, epilepsy, MS, TSCI, and Parkinson’s) were estimated to cost the American people almost 800 billion dollars, a number that has only increased over time. And despite the abundance of sensationalist reporting that might suggest otherwise, there is currently no panacea for a sick brain.

Yet the research does suggest that quality sleep, among other factors, generally improves brain health and we’re only just starting to understand why.

Breaking into the black box of sleep

Sleep is quite mysterious. Even today, we aren’t completely sure about the true evolutionary function of sleep. Yet surely, it must be important as most mammals die after more than a week of complete sleep-deprivation. So what is really going on behind the scenes?

With the exception of a few brief exciting and oftentimes bizarre dreams in REM sleep, our experience of sleep seems rather boring. While Drake and friends may think they are ‘out like a light’ when they fall asleep, the light is, in fact, still very much on. The “sleeping”brain is still firing, sending electrochemical signals and using lots of energy, particularly during REM sleep.

Previously, sleep research relied heavily on measuring electrical activity on the surface of the brain using EEG or measuring blood flow using fMRI. These tools are popular because they are non-invasive, but they lack the detail that would come from looking at a brain sample after death.

The advances in newer methods such as two-photon microscopy allow highly-penetrant, in-vivo imaging in a precise focal plane. In other words, you can look through the skull to observe microscopic brain structures in alive, sleeping subjects in real-time. How neat is that?

These methods have allowed sleep researchers to make some truly breathtaking discoveries, but before you get woke to some to these rousing findings, let’s take time to review some relevant Neurophysiology 101.

  • Neurons: the classic nervous system cells that propagate electrochemical signals through action potentials and release of neurotransmitters
  • Glia: the non-neuronal nervous system cells that keep neurons healthy
  • CSF or cerebrospinal fluid: the fluid that your brain is suspended in
  • Arteries: blood vessels carrying blood toward an organ
  • Veins: blood vessels carrying blood away from an organ

Creating divided traffic and discovering a new path

In an elegantly-designed experiment published in 2012, scientists injected a fluorescent tracer into the CSF of mice to follow its flow. Interestingly, the tracer appeared to be following the network of arteries carrying fresh blood to the brain.

However, the tracer wasn’t in the arteries, just around them. What they eventually found was that the CSF was flowing in the space between the outer walls of the arteries and the surrounding glial cells. If you can imagine putting a smaller pipe into a larger pipe, allowing two distinct fluids to flow in parallel along the same network, you’ve begun to understand periarterial flow.

Arteries are shown in white; tracer paths are in color/green arrows. (Mestre et al., 2018, Nature Communications)
In reality, periarterial spaces look less like donuts and more like eyes. (Tithof et al., 2019, Fluids and Barriers of the CNS)

In addition to the pressure gradient that keeps the fluid moving, the pulses of blood in your arteries also help push the CSF along.

This CSF moves into the water surrounding cells, or interstitial fluid, and washes over them, delivering nutrients and clearing away harmful cellular waste products. It then travels through perivenous spaces, which surround veins, to be dumped into lymphatic vessels where the waste is filtered out.

This, in short, is the glymphatic (glial lymphatic) system and it acts as the brain’s sewer system. Surprisingly, it was discovered just seven years ago by Dr. Maiken Nedergaard’s group at the University of Rochester Medical Center.

A journey through periarterial, interstitial, and perivenous spaces. (Plog and Nedergaard, 2018, Annual Review of Pathology)

Why sleep matters

Perhaps the most interesting quirk about the glymphatic system is that it is only active during sleep. The perivascular tunnels are tightened during wakefulness, limiting CSF flow; this change is likely mediated by norepinephrine, a neuromodulator that is abundant only in wakefulness.

Several studies have shown that as you sleep, the glymphatic system is clearing your brain of neurotoxic substances that have accumulated throughout the day, including amyloid-beta, the protein that forms the characteristic plaques in Alzheimer’s. In a vicious cycle, impaired glymphatic function increases the accumulation of amyloid-beta, which in turn limits CSF influx through the glymphatic system.

And indeed glymphatic efficiency is impaired in the brains of current models of Alzheimer’s disease and generalized aging, although the possibility of a causal relationship presents a less-clear, chicken-or-egg-first type of question.

Fortunately, more people are coming around to the idea that sleep is not a luxury. There is strong evidence for how sleep affects learning, obesity, hypertension, insulin sensitivity, and you don’t need a peer-reviewed article to tell you that sleep affects your mood.

For many young people, not getting enough sleep is no longer a humblebrag for an industrious work ethic, but rather a mark of neglect for one’s well-being. Yet, while surveys suggest that Americans are getting slightly more weekday sleep than in previous years, only 10% of respondents said they prioritize sleep over fitness, work, or their hobbies.

Good hygiene comes in many different forms. Regularity in keeping your hair, teeth, sheets, and home clean are (hopefully) already part of your routine.

It just might be time to add your brain to that list.

Eyes as diagnostic tools for PD?

Yesterday, John & I enjoyed a lunch with two other Parkies and their spouse/ caregivers. Ed & Jane have put together a slide show presentation giving hints and tips for living with Parkinsons. I looking forward to attending the discussion. They are currently writing a book telling about their Journey. Jane had early onset PD… so the illness progresses more slowly, but after 30 years She now has two Deep Brain Stimulators in her brain and is in a wheelchair. They recommended the place in Gainsville I had gone to once. And Rose, who puts together a weekly newsletter for the parkinson’s group, gave me the name of the Movement Disorder Specialist her husband, John, sees and they recommended. I called to see if I could get an apppointment with her. But was told that they couldn’t allow me to switch doctors after I’ve already seen one. But after further discussion, she said she would pursue my request, so I am hopeful.

And now I know what I want for my birthday. After the ladies shared their experience with UTI’s… Something I recently completed receiving a round of antibiotics for… Jane said, The doctor said the best way to quit having the problem was to get a good Bidet. One that doesnt have plastic valves.. make sure the hardware is metal and it has a heater for the water. The one they got also has a nightlight built into it. They said expect to pay at least $300. for a good one, They run as high as $900. + or as cheep as $39.

Jane, like I, experiences eye challenges. She has to use a VERY Large font to enable her to type. They recommended I go see a neuro-ophthalmologist. I pointed out, there are none in the Lady Lake or The Villages. They knew of a good one… in Gainsville, of course.


As I was brousing the Parkinson’s News Today, I saw this article:

 Eyes’ Pupils May Be Window Into Assessing Disease Stag

The response of the eyes’ pupils — the black circle in the center of the eye  that allows light to enter — seems to change according to the progression of Parkinson’s disease, a recent study has found.

The results suggest that measuring the pupils’ response to stimuli could become a noninvasive way to measure disease progression.

The study, “Analysis of pupillometer results according to disease stage in patients with Parkinson’s disease,” was published in Nature: Scientific Reports.

The pupil is the hole situated in the center of the iris (the colored part of the eye) that allows light to enter the retina, a lining of tissue at the back of the eye that is sensitive to light.

The iris is a contractile structure, and expands or dilates depending on the amount of light available. In this way it regulates the amount of light by controlling the size of the pupil, functioning like a photography camera’s aperture. This movement is known as the pupil light reflex (PLR) and plays a key role in determining the eye’s image quality and response to light.

A team of researchers in South Korea looked at the PLR using a pupillometer, an instrument used to measure pupil response to light. This reflex allows one to assess the functionality of the autonomic nervous system — the part of the body that controls involuntary actions such as digestion and heartbeat.

The sympathetic system activates several bodily functions when an imminent threat or major stressor is perceived, while the parasympathetic system works to calm the body afterward. Measuring the balance between these two systems can be a useful test for patients with neurological disorders.

In this study, patients with Parkinson’s were divided into early or late stages based on the Hoehn and Yahr scale (HY scale). Among the 132 patients, 100 were early stage (HY stages 1–2) and 32 were late stage (HY stages 3–5). After matching both groups for age and sex (to compensate for the effect of age on pupil light reflex), only 64 patients remained in the early stage group.

Those with late stage disease had longer disease duration and higher levodopa equivalent daily doses, meaning they were on higher doses of medications to treat their disease.

The study found there was a significant difference between the two groups in terms of pupil constriction velocity (the speed at which the pupil contracts when exposed to light) and maximum constriction velocity, which were significantly slower in the late-stage group.

“Constriction velocity and maximum constriction velocity are parameters involving the parasympathetic system, and changes in these parameters suggest that in patients with PD [Parkinson’s disease], the abnormalities of the PLR are mainly caused by parasympathetic autonomic dysfunction,” the researchers wrote.

There was not a significant difference in the two groups when it came to pupil dilation velocity (how quickly the pupil dilates when light is removed), baseline pupil size, minimum pupil diameter, and constriction latency, the delay in pupil constriction following light stimulation — all parameters that involve the sympathetic system.

The researchers noted that pupillary dilation response may have not been affected because the medications that the patients were taking may have affected the sympathetic nervous system, and thus offset the progression of the disease on dilation response.

“[T]he parameters measured by pupillometry changed according to the motor progression of PD,” the researchers wrote, adding that “pupillary parasympathetic dysfunction progresses with the progression of PD. In contrast, the factors related to sympathetic dysfunction did not change much, implying that pupillary sympathetic dysfunction advances relatively slowly even [in] PD advanced.”

The authors thus suggest the progression of Parkinson’s disease could be identified measuring pupil constriction velocity

by Yedida Y Bogachkov PhD | September 24, 2021

Diagnostic tool

I thought this was so cool, I wanted to share it when I saw it this morning. I just cut and pasted the entire article from Parkinson’s News Today, an online forum. And it reminded me of the first time I met a movement disorder specailist, she took one look at me and said: “YES, you have Parkinson’s” I asked her how she could be so sure, we just barely met. She said:” Your facial mask, your arms don’t swing when you walk, and now that I’ve heard you speak, your soft voice.” I asked her what she meant by mask. She explained that PwP loose the ability to show much emotion.

I’d like to see them do a second study with people with ‘early onset Parkinson’s I’d like to see the medical profession be aware of a diagnostic tool to assist, when they are stumped to determine a cause for unexplainable symptoms. There may soon be a tool to assist in diagnosing or ruling out.


From Parkinson’s News Today Marta Figueiredo PhD | September 13, 2021

An artificial intelligence (AI) tool was able to distinguish, with great accuracy, Parkinson’s patients from healthy peers by analyzing short videos of facial expressions, particularly smiles, a small study shows.

The predictive accuracy of the new tool was comparable to that of video analysis that uses motor tasks to detect Parkinson’s, pinpointing facial expressions as a potential digital, diagnostic biomarker of the disease.

This type of biomarker could allow remote diagnosis without the need for personal interaction and extensive testing. This would be particularly relevant in situations such as a pandemic, in cases of reduced mobility, or in underdeveloped countries where few neurologists exist but most people have access to a phone with a camera, researchers noted.

The study, “Facial expressions can detect Parkinson’s disease: preliminary evidence from videos collected online,” was published as a brief communication in the journal npj Digital Medicine.

Parkinson’s-associated motor symptoms, such as tremors and muscular rigidity, affect facial muscle movements, leading to overall reduced facial expression, also known as facial masking or hypomimia

An increasing number of studies suggest that reduced facial expressions may be an “extremely sensitive biomarker for [Parkinson’s disease], making it a promising tool for early diagnosis,” the researchers wrote.

In addition, facial expression analysis is a non-invasive tool that only requires a webcam or a phone with a camera, in contrast to the expensive, non-scalable, wearable sensors currently used to analyze movements during motor tasks as digital biomarkers of Parkinson’s.

Now, a team of researchers at the University of Rochester, New York, showed that analyses of facial micro-expressions using an AI tool can accurately detect Parkinson’s.

The study involved the analysis of 1,812 videos, collected online through a web-based tool (Park test), of 604 people (61 with Parkinson’s and 543 without the disease). In these videos, participants were asked to make three facial expressions — a smiling, disgusted, and surprised face — each followed by a neutral face.

Participants’ mean age was 63.9 years, and most of them were white and living in the U.S. Patients with Parkinson’s had been living with a diagnosis of the disease for a mean of 8.4 years.

Changes in muscle movements in each of the three facial expressions were objectively measured and computed in terms of nine action units, or micro-expressions.

In agreement with previous research, the analysis showed that Parkinson’s patients had fewer facial muscle movements than people without the disease. This was particularly significant for three micro-expressions: raising cheeks and pulling the lip corner — typically observed when people smile — and lowering the brows, usually seen when people express a disgusted face.

According to the team, “the smiling facial expression has the greatest potential in differentiating individuals with and without” Parkinson’s, the researchers wrote.

The team then used these differences in micro-expressions to train a machine learning tool to distinguish between individuals with and without Parkinson’s. Machine learning is a form of AI that uses algorithms to analyze data, learn from its analyses, and then make a prediction about something.

In agreement with previous research, the analysis showed that Parkinson’s patients had fewer facial muscle movements than people without the disease. This was particularly significant for three micro-expressions: raising cheeks and pulling the lip corner — typically observed when people smile — and lowering the brows, usually seen when people express a disgusted face.

According to the team, “the smiling facial expression has the greatest potential in differentiating individuals with and without” Parkinson’s, the researchers wrote.

The team then used these differences in micro-expressions to train a machine learning tool to distinguish between individuals with and without Parkinson’s. Machine learning is a form of AI that uses algorithms to analyze data, learn from its analyses, and then make a prediction about something.

They found that their AI tool could correctly identify Parkinson’s patients based on their facial expressions with an accuracy of 95.6%, which is comparable to the 92% prediction accuracy reported for existing state-of-the-art video analysis that relies on limb movements.

“We show that an algorithm’s ability to analyze the subtle characteristics of facial expressions, often invisible to a naked eye, adds significant new information to a neurologist,” the team wrote.

As such, facial expressions, especially smiling, “may become a reliable biomarker for [Parkinson’s disease] detection,” they added.