I wanted to tell you about what I am using and the impact it has made in my life. I had purchased a helmet to protect my head as I had continued to fall. But I forgot to put it on before going to the hospital to visit a sister who had fallen and injured her back. As I was stepping from the curb onto the sidewalk, I didn’t get my foot raised quite high enough, causing me to stumble. The thought flashed through my mind..(You didn’t put the helmet on and now you are going to face plant on the cement.) But miraculously, I was able to move my feet quickly enough that I was enabled to recover my footing. I’m sure it wasn’t a pretty dance, as several people came to make sure I was ok. I attributed my rescue to be by the grace of God and the improved comprehensive nutrition of the New Eden product I had begun to consume. The next week, I was feeling so good, I was working outside and decided to pull a hose around to water an Angel Trumpet Bush… and as I was pulling hard,when the hose snagged on something, it stopped me so suddenly that it caused me to fall backwards. Thankfully, I had the helmet on, because I hit the cement statue of a child holding a fishing pole, so hard that I dislodged the pedestal from the soil and knocked the child off of the pedestal. Although my shoulder was sore and where the cement had struck my spine was bruised and swollen,by the third day, the pain was all gone, the swelling had receded and it was as if it had never happened. Again I thanked the Lord for leading me to this more comprehensive nutrition. As you probably know, people with Parkinson’s frequently cease to swing their arms as they walk. Mine would just hang at my side. But in about the last month I have noticed the swing has returned to my arms when I am going into a store or even around the house or going from house to car. Again, the only thing I have added to my regime in the last little while is the more comprehensive nutrition. Also, my voice has been terribly weak, and I have a friend who is hard of hearing, When she called me on the phone this week, she said; “You are speaking louder ! And I noticed that the last time we were together, I could hear you better !” What can I say, but Thank you for the tool of more comprehensive nutrition.
I received this letter today from Dr. McDaniel:
“The clinical benefits in Parkinson’s Disease was not a fluke or an isolated brain function restoration event. I attach the highest level of evidence based science we have had the research funds to conduct. It was at the Miller School of Medinine in cooperation with the Miami Jewish Health Service. The Jewish facility if the largest retirement in-house operation on the East Coast and has 150 dementia patient beds and an out patient group in early Alzheimer’s disease patients, not ready for being institutionalized. They had done drug company Alzheimer’s research for over 20 years and were experts. All FAILED prior research efforts conducted in the past were designed to determine if a potential drug would SLOW the progression of dementia. They had never had a patient improve memory and cognition.”
“The idea and intent of our plan to test more comprehensive nutrition met skepticism and cynicism to the point of being insulting and hostile by the investigative team. It was worth more than any earthly value to see and hear their responses to our outcome in 30 pilot patients that the medical school IRB demanded a pilot study be done with all our funds, to show if their was toxicity. We had no toxicity what so ever with nutrition. But we got a bonus. There was 69% benefit to memory and cognition restoration, to their astonishment. 46% improved memory and cognition and 23% did not progress. Thus both groups beat any study ever conducted.”
“The CD-14 monocytes with adult stem cell potential increased nearly 400%/ We drew blood on entry and exit a year later and froze the serum. When the Brain Derived Neuro-Growth Factor assay became available; the BDNGF was elevated in the serum even though it was diluted with the entire blood volume. We had an objective mechanism of action (MOA) for the clinical benefits. The adult stem cells migrated into the brain to replace the degenerated neurons and the BDNGF supports the differentiation of the stem cells to become neuros to increase memory and cognition function.”
“This is why we have had multiple anecdotal reports of benefit in cerebral palsy children and adults, Parkinson’s, strokes, Down’s Syndrome, Fetal Alcohol syndrome, seizures, multiple sclerosis, amyotrophic lateral sclerosis, olivary nucleus dementia, fragile X dementia in boys, brain trauma and retinal blindness. Just to name a few top incidence conditions.”\
Dr McDaniel sent me his desk top file on studies in which brain function was documented to have improved. I saved them on my computer, but have not included them in this post. Please reach out to me if you would like to see the documented data.
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.
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.
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
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.
I have been aware of some of the benefits of 35% food grade hydrogen Peroxide.
My father had COPD for years, but after diffusing Hydrogen peroxide into hia bedroom every night, when he turned 90, he reported he no longer suffered from COPD . But a word of warning: I slept with a diffuser blowing hydrogen peroxide on my face, to help my cough and experienced an unexpected side effect. .. My Auburn hair was lightened and turned red!
Stabilized Oxygen This link is to where I previously shared much information about H2O2
I provided stabilized oxygen for our children every time they went camping with the scouts where the other camp participants brought nasty tasting tablets to purify their drinking water. It worked wonderfully and their camp mates were happy that I sent enough, so the children could share.
I know it isn’t a common suggestion for PwP, But I use 8 drops of 35% hydrogen peroxide in a glass of water every morning because I know the body is starved for clean oxygen. This doctor Marquis inspired me to go online and find a Nebulizer. Ours arrived today.
Dr. David Marquis said:: “Inhaling a nebulized hydrogen peroxide/water mixture is one of my personal optimal whole health strategies, one I have utilized long before COVID took center stage. In this video, I demonstrate how easy it is to utilize a micro-nebulizer. Hydrogen peroxide has been effective as an antibacterial, antiviral and antiseptic therapy for literally hundreds of years. Its many benefits, including its support of upper respiratory health and healing have also been extensively studied.””
“We are all unique, so if you are interested in utilizing this therapy, as always I encourage you to do your own research and consult your own healthcare practitioner if needed.”
” Disclaimer: The entire contents of this Video and YouTube Channel are based upon the opinions of Dr. David Marquis, unless otherwise noted. Videos are based upon the opinions of the respective author. The information on this website is not intended to replace a one-on-one relationship with your own health care professional and is not intended as medical advice. It is intended as a sharing of knowledge and information from the research and experience of Dr. Marquis. Dr. Marquis encourages you to make your own health care decisions based upon your research and in partnership with your own health care professional. If you are pregnant, nursing, taking medication, or have a medical condition, consult your health care professional before using products”
I personally discovered the benefits of using a micro-nebulizer to inhale hydrogen peroxide and water after my lungs were scarred in my youth due to contracting walking pneumonia while doing missionary work in Japan. So, as you can imagine, I am very conscious of any subtle changes in my airways, to being potentially exposed to bacteria, a virus…and/or if I am starting to feel under-the-weather. When indicated I add inhaling nebulized hydrogen peroxide to my standard immune system support regimen.”
I have documented progress I have seen in my personal life on my ‘Transparency’ Page.
I first learned about the B1 High dose Thiamine therapy through a post on HealthUnlockled . In a post by a gentleman with the User ID RoyProp. I learned about Dr. Costantini who was still functioning heading up the research in Italy. To learn about the research go to Facebook Parkinson’s thiamine hcl
If you click on ‘More’ and then ‘Files’ there were links to documents showing his research findings, but since Covid took Dr. Costantini away from us. I think the links may have been taken down. So I’m including one of the documents I cut and pasted:
“benefits are described by many members who are using or testing B-1”
By HU member ‘easily’. Carried over from healthunlocked.com/parkinsonsmovement
“I decided to go through the thread and list each benefit that has been mentioned by this group of B-1 testers and users from the HU forum.”
“Here is the list of symptoms that members have reported as being “reduced” by varying degrees to as low as zero or improved very significantly on the HU forum. About 95% of the list was compiled directly from the “who is taking thiamine” thread and the other 5% from other posts on the forum. A List of Improved Symptoms Reported From The Dr. Costantini B-1 Protocol Users And Testers On This Forum:
1. Hope for the future improved
2. Brain fog / focus / clarity
3. Gait improved to as great as normal
4. Arm swing when walking returned to normal
5. Shuffling reduced or eliminated
6. Balance / stability much improved
7. Tremor of hands, arms, legs, fingers, toes and feet reduced to as low as zero
8. Energy level increased
9. Handwriting / micrographia / typing / mouse usage / improvement and increased speed also for all three
10. Stamina / endurance much improved
11. Constipation significantly reduced or eliminated
12. Frustration much reduced
13. Muscle cramps /spasms / charley horse reduced or eliminated
14. Pain / all areas including neck, back, arms, legs, feet, etc. reduced or eliminated
15. Head tremor reduced or eliminated
16. Bradykinesia / slow motion reduced or eliminated
17. Drooling reduced or eliminated
18. Mouth and jaw tremor reduced or eliminated
19. Hallucinations reduced or eliminated
20. Improved voice volume, projection and clarity
21. Decreased use of multiple forms of levodopa and other PD meds
22. Reduced stiffness / rigidity
23. Improved sleep through the night and better quality sleep
24. Improved ability to taste and smell or normalized
25. A general feeling of well being
26. Going from not being able to walk to being able to walk
27. Stooped posture improved
28. Coordination improved
29. Body and joint aches (all areas) improved or eliminated
30. Depression reduced or eliminated
31. Use of hands to do things that were not previously possible before starting B-1
32. More fluid movements
33. Dystonia down to as low as zero
34. Apathy reduced or eliminated
35.Turning in bed and getting in and out of bed.
36. Anxiety reduced or eliminated
37. Facial expression / masked face improved to normalized
38. Fatigue reduced
39. Concentration improved
40. Mood improved
41. On time increased / off time decreased to as low as zero
42. No longer a need to always be grabbing onto things to maintain balance
43. Improved memory
44. Ability to snap fingers again
45. Vision acuity increase
46. Twitching reduced or eliminated
47. Mood swings reduced
48. Willingness to socialize / more outgoing
49. Walking speed increased with stability and ability to go greater distances
50. Strength in legs improved
51. Freezing reduced or eliminated
52. Dragging of feet or legs reduced or eliminated
53. Dyskinesia reduced as low as zero
54. UPDRS score reductions of 40% or better
55. Push Test improvements to quicker balance response
56. Hopelessness reversed
57. Physical flexibility improved
58. Improvement of gut problems
59. Improvement to a state better than when originally diagnosed with PD
60. Being able to continue working instead of forced retirement or not being able to work anymore.
61. Being able to get up from a seated position unassisted and easily
62. Being able to traverse stairs normally again or improved
63. Urinary incontinence and urgency down to as low as zero
64. Significant slowing or halting of disease progression
65. Increased hand strength
66. Improved swallowing ability and confidence in swallowing
67. Improved driving comfort and ease of entry and exit from the vehicle
68. Feeling much more comfortable in your own body
69. Feeling as though you now have a future to look forward to instead of no future except declining health and abilities
70. Toe curling relief
71. Ability to exercise more with greater ease
72. Increased productivity throughout the day
73. Ability to do things after work into the night instead of going home and taking a nap or going to bed for the night
74. Ability to interact with others more effectively in a work environment
75. Quicker recovery from hard workouts, walking, jogging and exercise
76. A return of lost creativity
77. Ability to do without a walker or cane
78. Reduction in inflammation
79. Ability to sometimes forget that you have PD
80. Smiling again and a more positive attitude noticed by people around you
“Dr. Costantini’s favorite from this list is #79. He said this is what he and his team is working toward with all of his patients and that is a very nice goal!
What follows is some testimonials from the HealthUnlocked
My regimen: by Roy Prop & then others…
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson’s progression stopped. Suppressed all motor and non-motor symptoms…
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful “thiamine hcl stops the progression forever…”.
Parky people say the first five years is your honeymoon stage with Parkinson’s. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini – “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
3. On Files page, download First Appointment document, answer and submit.
4. read Announcements
I understand you are a little reluctant to start a higher dose (I was ,too!) but 100 – 200 mg may not make a difference. Based on your size (height x weight) i would start with 500 mg in the morning (before 10pm) and 500 mg in the afternoon (before 4 pm). I started with 2x 1g and now I’m at 2×0.5 g. I saw partial results after a week and full results after a month. You can gradually increase from 2×0.1 to 2×0.5 or even 2x1g but probably will take longer to see results. I think for you the best dose would be 2×0.5 which you can gradually reach in time. You need also to drink a lot of water to eliminate it. I take it from March 2018; the single symptom left is some tremor in RH. All the others are gone. Usually I take it on empty stomach with a piece of dark chocolate. Avoid citrus juices soon before and after taking it.
You can stop it for 2-3 weeks and find out. If you get worse, you can always go back on it.Reply (4)Report
parkie136 months ago
For me it has made a tremendous difference, my balance , my driving, being able to sit up in bed and turn over in bed. Just recently, I stopped taking it for about three weeks and I noticed my balance was getting bed again. I restarted it at one pill of 500 mg a day and I’m just about back to the way I was before. With me thiamine HCL raises my blood pressure so that is why I stopped for a while.
Jennyjenny26 months ago
I have been going to post for some time about my husband’s symptoms improving since B1, but wanted to find the correct dose first. He had also been taking 150mg CL daily (originally 300mg but reduced by using mucuna) since April ‘18, but he was still severely constipated (having once been hospitalized), had a foggy head, his balance wasn’t great, had difficulty swallowing, anxiety… the list goes on.
Dr C started him on 500mg x 2 in Jan ‘19. This was based on him being 6 ft tall, 68 kgs and 60 years old. After much experimentation, we have settled on 400mg x 2, and taking a break for one day every 10-14 days, or when my husband has an unrestful night sleeping.
Things that have vastly improved are:
No more constipation – this resolved after 3 days on B1
No more foggy head – that cleared after 6 weeks
Balance – slowly improved
Swallowing – at last review in May ‘19, the speech pathologist noted his mouth was no longer drooping on one side, swallowing and tongue functions were normal and he didn’t present like someone who has PD.
Anxiety – this has taken a good 6 months to get where he is, and there’s still room for improvement, but so much better.
chartistin reply to CapSage4 months ago
Dr. Costantini has said it is fine to work your way up from lower dosing to higher dosing as a viable option to starting higher and seeing how you respond and then adjusting the dose accordingly based on your initial responses. Your method is much less likely to cause significant symptom deterioration as can sometimes happen if your first doses are too high. Working up from low to high maybe a bit slower, but if you are a B-1 responder, as the majority are, you’re going to be taking B-1 for life so there is plenty of time to adjust the dose as needed.
I KNOW this was a long blog entry… Congratulations if you stuck it out to the end.
I acquired the New Eden which I mentioned in a previous post and for the first month I used 1 scoop twice a day. Then I learned that I was taking a maintenance serving, and I should increase the amount I consumed if I had a health challenge, IF I wanted to see noticeable improvement towards normal. So I doubled up 2 scoops twice or thrice a day since then.
Then several weeks ago, I had a fall. I was pulling a hose across the front of the home when the hose snagged. I was feeling so well, I guess I was going faster than I should, because when the hose snagged, suddenly stopping me, I fell backwards and struck my back and my spine high between my shoulder blades on a cement boy sitting on a pedestal, dislodging it from the soil. I expected to have some massive bruising. I credit the new product with the fact that I had very mild bruising and the soreness and puffiness was totally gone from my spine a short 4 or 5 days after I fell.
A fellow PD friend on a Parkinson’s chat page posted a photo of herself wearing her head gear ; stating that she has fallen so many times, breaking an arm once. She knew it is just a matter of time before she hits her head on something as she is falling, so she decided to be proactive. The cap she was modeling made me think of an early day leather flight helmet.
After my encounter with the stone figurine I decided to go on line and search for protective head wear, hoping to find something a bit more attractive. RibCap is the company I found that I felt had the most attractive helmets. I saw two styles that I liked. One looks like a knitted stocking cap…. Much to warm for our Florida heat. The other one Looks like a base ball cap.. so I thought it would be a wiser selection But when I went back to the site, thinking I might order one, I stumbled onto a third style set to be coming available on April 30th and I thought it looked more like something I would wear in the garden, so I ordered one. But I had to wait because, due to Covid, they had not been able to acquire some of the material they need to be able to produce the helmets
I’ve had a couple more falls since I placed the order… nothing more than my dignity broken… but I received notice that my hat has left Belgium and my hat/helmet should be here by 4th of June. Maybe I’ll share a photo with me modeling it.
Previously we discussed how melatonin can be beneficial for people with Parkinson’s disease (PwP) at a dose as low as 10 mg / day. Recent studies are confirming that Parkinson’s disease (PD) is a risk factor for cardiovascular disease (CVD). The relationship is not yet fully understood, but it is now clear that CVD is something that PwP need to be aware of and should be taking steps to try and prevent CVD from starting or advancing. Obviously CVD is problematic in other health issues as well as in the general public, but I will discuss how melatonin may be able to reduce the risk of CVD in PwP as well as in people in general.
The following meta analyses discusses how PwP are at higher risk for CVD even though it was previously speculated that PwP were at lower risk because they present with fewer vascular risk factors for CVD and smoke less. Smoking is a risk factor for CVD. If your doctor, neurologist, movement disorder specialist or other healthcare professional has not informed you of this risk factor for CVD, now you know and can take steps to try and prevent or lessen your chances for getting CVD
‘The book on Amazon you can buy right now is called Resonance Therapy by Carolyn McMakin. wherein a person can learn about the history of and how Frequency Specific Microcurrent is changing lives. ‘
“Frequency Specific Microcurrent (FSM) works on the body on the same principle as a key fob which uses resonance to unlock a car door (or) as a radio transmitter and receiver resonate with each other to bring a signal into your radio.. or TV. “Resonance follows the laws of physics and the observations and principles of science”
At that time I had learned of a device that had 20,000 medical doctor users in Europe and tens of thousands in 43 countries who are not doctors and became available May 1st in the USA. The claim was ‘If you can push on an app on a smart device then you can learn how to use this amazing FDA class II medical device.’
I acquired the device… it was so flimsy and cheaply made and difficult to use and the company offered zero customer support. But despite the glitches, the product did work.
Mid January of 2021 I learned about micronutrients. At the link just below you may view an interview where a Dr. McGee speaks with Dr. Reg McDaniels about restoring our bodies to normal I found his presentation of details about the value of micronutrients pretty compelling. He is very careful to say it is not something that cures… But that it gets nutrition to the cellular level.
The person who introduced me to the Frequency Specific Microcurrent was having great success in assisting people find better quality of life with the device, but he was spending hours each day doing what the company should have been doing; providing customer service.
He, Reg McDaniel Jr., and his working partner, Beau Johnson have withdrawn from the FSM company which is based in Germany. And have put together an amazing group of successful marketers, engineers, scientists, lawyer and a Doctor. They even have acquired a website that works well. Ascend Sciences International The ‘Curie” is still in development stage but they have a ‘Mini Curie’ set to come into production in the next two or three months which they will allow those who have pre-purchased Curies to purchase a ‘Mini Curie’ before the company actually Launches, so the people can begin sharing the ‘Mini Curie’ with ailing friends and family.
Additionally, Reg’s father Reg McDaniel Sr. has given them the list of ingredient’s and recipe / formula adding additional nutrients to market the HerbaCeuticals ™ Q800+. The Aloe has been contracted for. It comes from Costa Rica and is an exceptionally large Aloe Vera plant grown in volcanic ash enriched soil along with the other necessary ingredients. The ratio of the Mannose from the Aloe remains the same as it was in the previous version of Dr McDaniel’s formula, but other proportions were reduced slightly to allow for the additional nutrition sources. The pandemic has made it more difficult to acquire the last ingredient for the new formula. Everything is in place for the production of the ™ Q800+ just as soon as the last ingredient has been acquired.
If anyone is interested in attending a zoom meeting to learn more, please reach out to me.. If you check out the website , PLEASE, do ‘NOT’ click on the ‘JOIN NOW’ on the home page of Ascend Sciences Intl. They are still in PRE-LAUNCH mode..
BTW… I feel like the tools I have spoken about in this post are having a very good impact on my progress toward normal.
Alternative Medicine Review has the article “The Potential of Butyric Acid as an Alternative Treatment for Parkinson’s” atlasbiomed.com “Could Parkinson’s Disease Begin in the Gut” states “butyrate producing bacteria less in PD.”
The man from the Parkinson’s News Today forum, Russ, said he uses T. E. Neesby brand Butyrex. The ingredients are: calcium 480mg, magnesium 240 mg, Butyric Acid 3.6 g. Having never heard of this brand I was apprehensive. But I have been so pleasantly surprised. Butyric Acid is a short chain fatty acid that helps the colon. I was concerned that it would not make it to my colon but perhaps it is because the improvement is very definite.
Oh and I want to add that On the same Parkinson’s News Daily forum, a wife shared that her husband has had significant improvements with mannitol. I started using it a few weeks ago figuring, what the heck, might as well try. I am suddenly smelling things I previously did not even know had a fragrance like my mascara!
Butyric acid naturally occurs in butter, hard cheeses (e.g., parmesan), milk (especially goat’s and sheep’s), yoghurts, cream, and in some other fermented foods (e.g. sauerkraut, pickled cucumbers, and fermented soy products) but in very small and insignificant amounts for gut health.
I’ve read the theories that Parkinson’s begins in the gut. And among the foods that numerous sources say that the best diet for gut health includes a lot of fermented food I’ve also read that butyric acid is necessary in the colon to enable the probiotics we take be effective. But it is hard for me to eat enough fermentation to be effective. Therefore I was excited to learn about a supplement to enable me to increase my butyric acid consumption.
Neither PwP nor a doctor can predict which symptoms will arise or the severity of those symptoms. It is a lifelong and progressive disease, with symptoms steadily worsening over time, therefore fall prevention for many is the first call to action for preparing their loved one for the journey ahead
Teri wrote : An approach to avoid injury while falling:. Knees, ankle, and all the rest, most important to protect is the HEAD.
So many falls went straight to my head. They didn’t hurt A lot, but I sure got worried as they piled up. So I decided that before my almost inevitable HUMPTY DUMPTY moment, when all the king’s horses and all the king’s men couldn’t fix a thing, I would find a helmet. And this is what I found (sorry, the photo disappeared) I paid $176.00 for it out of pocket; Medicare wouldn’t cover it I have fallen and hit my head many times since, AND IT WORKS
A pastor recently typed: Don’t let pride or stubbornness get you injured or dead use a walking aid to prevent falls. My motto, “I’ll crawl before I’ll fall.” and I have done so. Bible says ‘pride goeth before a fall.’ May God bless us on this journey!!!
——————— But to consider the feelings of the PwP, to allow them to not feel conspicuous, and normal, I found two Ribcap products. (see the links)
An owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautifully crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.
Falls and Common Household Hazards
If you or a loved one has Parkinson’s disease, here are tips for preventing falls around the home:
Floors. Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its accustomed place.
Bathroom. Install grab bars and nonskid tape in the tub or shower. Use nonskid bath mats on the floor or install wall-to-wall carpeting.
Lighting. Make sure halls, stairways, and entrances are well lit. Install a night light in your bathroom or hallway. Make sure there is a light switch at the top and bottom of the staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
Kitchen. Install nonskid rubber mats near the sink and stove. Clean up spills immediately.
Stairs. Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it may be helpful to arrange most of your activities on the lower level to reduce the number of times stairs must be climbed.
Entrances and doorways. Install metal handles on the walls adjacent to doorknobs of all doors to make it more secure as you travel through the doorway.
Tips for Maintaining Balance With Parkinson’s Disease
Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson’s disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
When trying to navigate turns, use a “U” technique of facing forward and making a wide turn, rather than pivoting sharply.
Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
Do one thing at a time! Don’t try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
If you become “frozen,” visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion “pull” you, this may throw you off balance and even prolong the episode.
If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you’ve mastered walking with help, you may be ready to try it on your own again!
I wanted to tell a person struggling with anxiety about my blog, but when I looked I found this was still in my drafts. It contains three pieces of conversation that was had on a chat format for PWP.
“Weird but wonderful,
I’ve been having unfounded anxiety lately where I constantly feel like fight or flight jitters. Long story short, I read on some random website that B complex can help with this. Lo and behold, it did! (Or) I’m enjoying the placebo effect again. I also took a D vitamin today.
I actually have been avoiding B complex because I would think this would interfere with carbidopa, but I seem to be having a really good day of low anxiety and very mild PD symptoms.”
“Elevation of plasma homocysteine (hyperhomocysteinemi) has been linked to cardiovascular disorders, an increased risk of fractures in the elderly, stroke, and to neurological conditions such as PD and Alzheimer’s. Even mild elevations in homocysteine can significantly increase the risk of cardiovascular events such as stroke and heart attack and increase the risk of cognitive decline in the future.”
“Many studies have shown that PWP are often deficient in b12, and lacking the vitamin can cause all kinds of neurological, psychiatric, and motor symptoms. B12 is also a methyl donor, so it can certainly cause anxiety and panic attacks in some that are over methylated at high doses, but more commonly it’ll have an opposite effect in those who are undermethylated. Get tested and supplement adequately.”
“Have you tried the Hardy’s den yet? Worth a shot. It has lots of trace minerals too. Maybe you have a few things missing in your diet so this tops them up as well as all the b vitamins.”
Since anxiety isn’t a problem for me, I haven’t pursued checking out Hardy’s Daily Essential Nutrients. But I left it in, for what it is worth. Sue