Just kidding. I never thought about the tongue being affected, and improving salivating by exercising my tongue.
And I liked these online speech exercises offered to the VA
Sharing my journey, and the insights I've learned, with a Christian positivity.
Just kidding. I never thought about the tongue being affected, and improving salivating by exercising my tongue.
And I liked these online speech exercises offered to the VA
The Feldenkrais Method® of somatic education uses gentle movement and directed attention to help people learn new and more effective ways of living the life they want. You can increase your ease and range of motion, improve your flexibility and coordination, and rediscover your innate capacity for graceful, efficient movement. Since how you move is how you move through life, these improvements will often enhance your thinking, emotional regulation, and problem-solving capabilities…
I per chance ran across this unique form of Yoga. I have posted 4 videos showing three different presenters demonstrating exercises for posture alignment, freeing neck and shoulder pain, healing your knees & foot and ankle stability. Do your own search and see if any of their approaches work for you.
This an exercise a person can do, laying in bed.
I have been going to physical therapy this month. I am in a program designed to help people with Parkinson’s retrain the brain to help us with balance and prevent falls. I think I am a slow learner. There are so many different aspects to it. how to turn, how to keep the feet from crossing over… or from bringing feet too close together. My therapist is constantly reminding me: ‘shoulders back’, ‘don’t drag your foot’, ‘look straight ahead’, ‘stand up straight’, ‘think big’. ‘take bigger steps’, ‘pick up your foot higher’, etc…
Yesterday was my tenth session, so they had me retake the test that I received at intake. They said I had improved some on my times, but I have a long way to go. They showed me a before treatment and after therapy for another patient, and my honest input was “He looks like he is walking wearing a wet diaper.” I am hoping, when I see my after therapy video, my gait isn’t quite as exaggerated as his was. In my ‘before treatment’ video I was putting one foot directly in front of the other and very awkward when turning around to walk back I have five more sessions scheduled in July… which should be the end of the BIG therapy program. I do not know if they will extend it into August. They send me home with exercises to do at home as well.
I liked the explanation for our loss of balance that I copied from a blog:
Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s Disease affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.
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 wellred.com.au
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.
A support group is just that… Support! You can’t get the support you desire if all you do is attend and observe in silence! You get out of it, what you give in to it.” I kept hearing, ‘ Find a support Group.’ and I actually tried a group once but the exercises they had us do were not realistic. That is when I realized I had lost the ability to skip.
Recently, the MJFF started a Parkinson’s Buddy Network which I joined, and the very first person I reached out to, told me about a support group which meets every Wednesday in the villages, at a rec center just 15 minutes away from where we live., I have attended four times now, and I love it. The leaders always have something to share with the participants. This week it was providing information on specific studies that are currently enrolling PD patients to participate in in Gainsville. When the group have convened, they begin by participation in a drumming activity. They stand and pledge allegiance to the Flag. Then we are led in a ten minute sitting stretching routine and then we dance for around 40 minutes. Two or three ladies demonstrate the planned choreography to go with each song.. We have done the rhumba, and learned a line dance, Marches, and songs like YMCA incorporating the moves to spell. And they work on voices: shouting, singing loudly and counting, while dancing. This week, they had 16 chairs set up 1/2 on each side of a volly net. So After dancing we transitioned to playing chair volley ball with beach balls. The competitive spirit was lifting many of us off our chairs. No score was kept and they had two balls so while the observers, mostly care givers, were retrieving errant balls the second ball would be put in play.
I continue to learn new things. I feel gratitude for my many blessings.
The support group has a weekly newsletter, and I have learned they have 3 meetings each week plus a golf game one morning a week. One of the meetings is stretching, exercising, Big & Loud… held on Sunday . so we won’t be participating in it, or playing golf. The Monday one is for caregivers.
From the Newsletter: The importance of the 3 key benefits of Support Groups!
I don’t remember where I found this sales pitch for Support groups:
“It is important that those of us with Parkinson’s learn as much about this disease as possible. We use this knowledge not in helping to find a cure but in helping us cope as we move about in our daily lives. Once we have found some new knowledge. We should not keep it to ourselves. If we have found a way to cope with the disease we owe it to others to pass this information on. Attending support groups is a way that we can do this. A way that we can find out, that we are not alone!”
“I have been lucky to attend various support groups and have had the privilege to meet up with other Parkies across the country. One thing jumps out at me, those who interact in these meetings seem to be coping better with the disease, both mentally and physically, than those that don’t! They interact better with Parkies and Non Parkies a like! As hard as it may be, you must interact! If you have trouble expressing yourself to those of us with Parkinson’s, how hard must it be to express yourself to those that don’t? People like friends and family and especially your caregiver and medical support team! The more you partake in the support group, the more you can learn about different techniques in how to live with Parkinson’s and easier relate your disease to others. By sharing with others, you will be surprised to find out just how much in common you have. You will find out that what you are going through is not new. Somebody has or is going through it as well. Your participation will most likely encourage others to interact. By doing this, conversations start to flow. New ideas and solutions will seem to come out of nowhere! This is what you were probably looking for when you opted to attend a support group in the first place! This knowledge is a stress reliever!”
Can you imagine sitting for a half hour each day breathing in and out thru a straw? That is an exercise used by pulmonary rehabilitation to strengthen diaphragm muscles for COPD COPD is a catch-all term that includes people diagnosed with illnesses like emphysema, asthma and chronic bronchitis. (I think with our slowed muscle response time and weakened muscles PwP could benefit equally well.)
VA Health Promotion-Disease Prevention Coordinator in Tampa… Dave Folds, says “The type of breathing used to play the harmonica is like the breathing exercise used in therapy for COPD. Basically, the breathing exercises are pursed lips style breathing, like breathing in and out of a straw (which would be) the same way you would blow in and out of a harmonica”
“By making music, it’s much more enjoyable than sitting at home for half an hour each day breathing in and out of a straw,” Folds said, “Most people in the class won’t do that, and they say so. But they will sit at home and practice their harmonica, some of them for hours.”
A veteran who has been learning to play the Harmonica said. “I do feel different. It made a noticeable difference. I have more endurance.” Additionally, “With the harmonica, you’re actually achieving something and hopefully getting pleasant sounds out of it. You’re getting the reward for the effort you put in.”
And thinking about breathing issues… I’ve begun trying to do the tongue in teeth, swallowing exercise as shared by a fellow PwP, since reading at the included link…
Early occurrence of inspiratory muscle weakness in …
“In Parkinson‘s disease (PD), respiratory insufficiency (including functional and muscle disorders) can impact dysarthria [difficult or unclear articulation of speech] and swallowing.”
He typed, “I used to have it. Now I do 5 minutes of “exercise” every night and it’s gone. The exercises include “Swallow 20 times while holding your tongue in place with your teeth. I recommend that you go through “the system” and spend some time with one of these swallow therapists.”
Why is moving so important for PD? The circulatory system has the heart to pump blood, but your lymphatic system has no pump; it is dependent on your movement and contraction of the muscles to allow the lymph fluid to flow. Among other functions, your body depends on the “sewerage system” to detox waste, bacteria/ viruses, toxins, metabolites, and abnormal cells that can lead to various illnesses. If this crucial detoxification drainage system is stagnant or insufficient, it can directly result in elevated oxidative stress among other comorbidities.
“Findings suggest that lymphatic clearance dysfunction is crucial in the onset and development of PD, and might be therapeutically targeted to alleviate age-associated neurodegenerative disorders.”
I set my WBV on 70+ for moving lymph. Dr. Ian says it is great for giving yourself a facial and decreasing wrinkles
“— Hello Dr. Ian here talking about the benefits of whole body vibration with lymph lymph is that clear fluid that oozes out of our skin it’s an extracellular fluid. when we get an abrasion like a rug burn you get that white ooze that’s the lymph. Lymph. is very important to the body. there’s. there’s more lymph fluid in …
I saw reviews on the Urban Poling Activator Poles on two different Blogs by PWP. So I Googled it, and watched YouTube ‘how to use walking poles’ by three different companies. I can see how using the poles correctly could benefit me, as I continue to do fast walking. Plus I can see my sweetheart benefiting from using the poles as well.
Unique Components of the ACTIVATOR Poles:
Button-Locking System: An easier and safer method vs turning locking systems.
New – Ergonomic CoreGrip (patented): Designed for improving core strengthening while providing greater comfort and supporting the wrist in a neutral position to reduce strain.
Wide Ledge instead of a Strap: To reduce the risk of injuries. A study by Knobloch et al. (2006) found the highest rate of injury for Nordic walking is when the person is still attached to the poles during a fall.
Bell Shaped Tips: Provide greater stability than boot shaped tip
3 Anti-Vibration Features: Reduce vibration and impact on joints
Carbide Steel Tip: Provides stability on slippery conditions and on trails & beaches.
Telescoping: 4′ to 6′ (121 to 182 cm). Poles are collapsible for storage & travel
New – ACTIVATOR2 Poles designed for taller individuals up to 6′ 4 and collapses shorter for travel 25″
The site suggested that rehab professionals are using the poles in place of canes and to reduce/delay the use of walkers.
The poles are very similar to Nordic Walking Poles, but the techniques taught for using them are a bit different. The hand shake goes to a more bent elbow and the poles don’t go behind you. https://urbanpoling.com
I purchased The companion combo, which was a bargain. Now my sweetheart can go poling with me. They arrived already (Merry Christmas to us) We watched the videos provided and adjusted our new poles to the correct height for a 90 degree angle at the elbow, and tried to practice the pole placement coordinated with arm swing and foot placement. First day we went out to walk on the pavement in front of our house. by the end of our little session, my husband was able to do it. Due to Mr. PD, my coordination isn’t so cooperative, so I will take longer… but I’m not a quitter.
We have been on three walks now. I’m slowly getting better, but I still have to watch my feet (a no-no) and concentrate. or I am stepping out on the same side as the pole. About ready to go out again. The weather is beautiful in central Florida… 78 degrees right now.. I’d better go before it gets too much warmer.
There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.
IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)
Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.
I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…
It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you. Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.
There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.
Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER
The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!
Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.
You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.
Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you.
“There is something you must always remember:— Winnie the Pooh
You are braver than you believe, stronger than you seem, and smarter than you think.
When I joined The Invigorated Community on line discussion group for those diagnosed with Parkinson’s and their caregivers, I received this message. IT has been worthwhile for me to re-read.
|I met the woman who changed my life forever one month into my professional physical therapy career. |
She walked, slowly and timidly, back to my treatment room for her initial evaluation with very little trace of emotion on her face.
Once she was settled comfortably in her chair, she looked up and said:
“When I was diagnosed with Parkinson’s disease, my doctor told me I’d get worse over time and likely be in a wheelchair in 5 years. That was 3 years ago.
Since then I’ve stopped walking with my husband in the evenings because I feel so unsteady and I’m terrified of falling again. I’m tired all the time. My back and shoulders ache and my right arm is so weak that I had to give up doing my own laundry and cleaning the house like I used to.
I want to be able to take care of myself and get back to doing the things I used to do, but Parkinson’s won’t let me. I honestly don’t know what you can do for me, but my doctor told me I should come, so here I am.”
This was the first person I had ever treated with a Parkinson’s diagnosis and her story immediately sparked a fire in my heart.
How could her doctor be so sure of her fate?
So, I asked her to give me 30 days to prove to her that she didn’t have to succumb to the disempowering belief that there was nothing to do but take her medications, get her affairs in order, and pray for a cure.
Fortunately, she agreed.
We spent 3 days a week together, and she worked hard . Bike intervals… balance pads… walking drills… squats (so many squats!)… twisting and bending in all directions… and, of course, exercise homework for the days she didn’t see me…
Until we reached our 30-day mark.
Not only was she back to walking a mile each evening with her husband, but her back and shoulder pain was also gone. She had enough energy to do her laundry and was regularly hosting their family and friends at their home she was able to clean herself.
She looked at me, smiling, and said:
“I never thought I’d be able to do these things again. You gave me my life back.”
Heart . Explosion .
Immediately I knew that this was where I needed to be.
I don’t tell you this story to brag about myself or to proclaim myself some mystical healer.
I tell you because I want you to know this:
If you’ve been told that there’s nothing you can do but take your medication, get your affairs in order, and wait for a cure, you don’t have to believe it.
What follows is a letter I wrote that I wish I could have given you on the day you were diagnosed with Parkinson’s disease.
|Big hugs,Dr. Sarah King, PT, DPT|
Founder of Invigorate PT & Wellness
“Dearest Friend, [Her words are so uplifting and beneficial… check back tomorrow, for the ‘rest of the story’.]