You will notice that most important discoveries in history came from outside the specialist inthe field. Smallpox Vaccines and penicillin might be two. My own professional career also convinced me of this. The traditional sciences is one important route but not the only route. I remain openminded and will remain optimistic that a cure might exist that has not yet reached the mainstream.
Here is a report on promising stem cell work.
http://iospress.metapress.com/content/e0003031197w8148/fulltext.pdf
Thanks for this. I also read with appreciation your recent post re self searching for answers. I am looking forward to consulting with the light therapist next week and will report. It does seem to be based on realistic rationale. A recent article in New Scientist disclosed work re light activation of microglia acting as housekeepers for cleaning up the brain which was activated by light.12Oct 2013 page46.Marie-Eve Tremblay now at Laval University in Quebec City. The Willis trials as reported are very positive also. I am quite sure this is no quackster.
By the way I also use Vit D for depression, a form of Kefir for gut microflora, finely ground Zeolite for chelating and alkalising and COQ10 because I also take a statin. I was originally in quite a bad way with loss of balance, arm and neck restrictions, chronic pain etc but negligible tremor. I do not medicate with any L-dopa or antagoniist and have significantly improved except tremor has recently increased. I sleep well walk 2-3 miles a day and do not seem to suffer from any mental issues at all thankfully.
I just worry that current prescribing practice seems to be to add l--dopa precursors without concern for blood levels v weight etc
Hope this is of interest
Hi dr jonny,
Just comming back your post above where you say "I would be interested to read any papers you have found on cortisol disregulation; how does it cause death of nerve cells?". As I mentioned in another post I posted yesterday, I recently found this study (http://www.ncbi.nlm.nih.gov/pubmed/2157498) that seems to show that cortisol (same as hydrocortisone) “…was found to inhibit the activation of superoxide-generating NADPH oxidase…” in vitro. As I understand it, superoxide is one of the most highly destructive elements in cells, has been clearly implicated in PD, and is produced from oxygen and NADPH oxidase. More interesting, I also recently found that apocynin prevents NADPH oxidase from occuring and this study (http://www.ncbi.nlm.nih.gov/pubmed/23721786) showed that apocynin (more precisely, Diapocynin, a derivative from apocynin) had good results in preventing PD symptoms in a rat model. I e-mailed the lead researcher on this study and he did suggest that taking apocynin sounded like a good idea to him. I'm now trying to find a way to get some of this apocynin... but it doesnt' seem easy. The best solution I found so far was to buy pills with extracts of Picrorhiza kurroa which is known to contain apocynin... but I don't really know in which quantities, etc.
Cheers,
lfs
Thanks for this. I don't have much experience with biochemistry but I would say that studies in cells (although crucial) are limited - they obviously don't replicate the complexity of the human body so as always caution, caution, caution (especially when there is no recommended dose - you don't know when you are overdosing)
I need to read up on my biochemistry - there is so much to learn
dr j
I have now consulted with Dr Greg Willis of the Bronowski Institute. I am very impressed. What is the process and does it work, what does it cost and can one use the process so as to reduce or remove drug heavy dosing and side effects.
For the first time there is an alternative theory to a base cause of parkinsons.
It is fairly much as it is explained in the website bronowski.org but here are some more specifics. The theory is that Parkinson's is a disease of the eye and can be treated via the eye.
He explained to me that it was a disconnect between processes controlling the balance between melatonin and dopamine which can be restored with light therapy. One goes back with the process to minimal or no dopamine drugs and controlling the basic mismatch by immersing the eyes in light on a regular basis for a regular time. He warns against self treatment. In my case he has leased a light providing 3000 lumens with a broad spectrum white light to me for a minimal fee per month (20$). The light provided is made by Philips for treating depression. I am to bathe my eyes with this light 1.2 meters away for one hour several hours before I go to bed. I will try it without dopamine supplementation for the first month to see whether it relieves the symptoms on this basis only. They are still conducting research and have a large grant to conduct double blind trials in the USA. They have a small clinic which is where I went which was very humble indeed but quite professional and this is run as a non profit organisation although I paid $140 for a two hour consult for which I get a health system refund of 85$. They will not get rich on this fee basis. I have an appointment in one month to explore the first months results and clearly readjust the regime. Does it work! Dr Willis answered my question be saying that effectiveness varied with distance away from Victoria. It does depend on compliance and his point was that those further away seem to drop the compliance more than those close in. Perhaps simply human nature. He followed this with an observation that his mother in New York had recently been diagnosed with parkinson's and he had to ask his mother who had previously ignored any advice from him that for once she must follow his instructions!!!! Trust this is of some help. It is of particular interest that this treatment as I understand it does not depend on whether one is currently medicated. They were very surprised that I was not medicated at all which as they said is most unusual. Hence the decision not to take drugs to start with for me but this would be an exception. I am not qualified in any medical sense and am simply a pwp looking for a solution. May I say how much I hope this is a better solution but not let emotion cloud any judgement.
Parkinson's is a disease of the eye?! Eh? So the extensive research showing the involvement of the substantia nigra is wrong? Blind people are more likely to get Parkinson's? Wearing sunglasses increases the risk? Where's the link between the lack of light and nerve cell death? I say again, our eyes are bathed in light all day! I've never heard of a treatment whose effectiveness is based on geographical location.
Currently no treatment in the world addresses the cause of Parkinson's: loss of nerve cells. However, some treatments are closer in dealing with the consequences of nerve cell loss (directly replacing dopamine). It seems to me light is further away from addressing the problem.
try what you like but i remain sceptical about all this (especially since you are paying for it - why don't they recruit you into a study or clinical trial? or give an unproven treatment for free
dr jonny
Dear Howard (and dr. jonny),
Thanks for sharing!!!
"Parkinson's is a disease of the eye" does sound like an oversimplification... but it's actually consistent with the hypothesis that I'm exploring that cortisol deregulation can cause too much NADPH oxidase which in turn causes loss of dopaminergic neurons. This is because (a) light has been shown to impact both the cycle of both melotanine and cortisol and (b) getting our "light cycle" right seems to help fix certain cortisol de-regulations too... which supposedly would have a positive impact on NADPH oxidase and thus on PD.
So, from my side, I'm good with "light therapy". I'm typing this post wearing my recently acquired yellow-lense spectacles (you'd laugh even more if you could actually see them 
) just in case there's really something in this (yellow lense spectacles are supposed to cut blue light from computer and TV screens so as to ensure we don't get too much blue light at the wrong time - the light cycle is apparently highly sensitive to blue light). I haven't gone down the mid-day lamp route to replace sun light (yet), but I can say that it's true I don't normally get that much sunlight during an average day... and that I did feel a bit of an improvement in my symptoms after a 3 week vacation in a sunny country this summer (but can't tell if this was due to light, lower stress, food, etc, etc).
Having said that, I'm not sure I would count on "light therapy" as the sole means for managing PD. There seem to be other ways to "inhibit" NADPH oxidase than just fixing cortisol (assuming my hypothesis that that's the mechanism at play here); there are also other ways to fix cortisol; and there may be other stuff at play in PD other than just cortisol-driven NADPH oxidase (there are lots of people with cortisol problems that do not have PD).
But if it works (even if a little), does no harm, and is not overly expensive - then why not? I'll be looking forward to hear how it worked for you.
Dear dr. jonny,
Apologies if I'm lot less altruist than you seem to be in these discussions - while I too would very much like us to find a scientifically demonstrable cure for PD so that everybody can benefit in the most optimal manner, I'm worried it might take too long for many of us. My preferred - and admiteadly more selfish approach - is to give priority to anything that I feel has a fair chance of working even if it's unproven (as long as I feel is not harmful and has a reasonable cost).
Warm regards to all,
lfs
PS. Loved the "wearing sunglasses increases the risk?"
I have now found a relevant patent application which describes in careful detail with details of results etc
Here is the link
I have not followed, or been able to follow, the twists and turns of this erudite discussion, but I have noticed the references to cortisol. I have recently started taking fludrocortisone (1X100 microgram tablet twice per day) on top of my Half Sinemet CR (3 per day). The purpose of the fludro is to reduce my postural hypotension (dizzy spells). It certainly works, although I have to take care that my first-thing -in the-morning blood pressure is not too high. I have not noticed any quantifiable improvement in my PD symptoms, but it's early days yet.
Offered for what it's worth. Let my know if I can be of any help.
Bob
Dear Howard: thanks for sharing - looks of interesting info which I personally find consistent with my cortisol hypothesis :-)
Dear oldun,
Thanks for jumping in. Apologies if any of my comments contributed to your "erudite" remark - I'm not a medical doctor and am just trying to figure out what causes this PD thing we have - but inevitably one gets bogged down in this terrible medical lingo.
I am very interested in your experience. Over the past few months, I have come to believe more and more that cortisol plays a key role in PD. I have no hard scientific evidence (so call it just an hypothesis or a hunch), but I'm surely convinced it's true - there's just too many things that fit... at least in my case.
I'm also interested in your experience because I too have low blood pressure (though you seem to have it in a much more severe level - my blood pressure is not low enough to bother me in practice) and because there's a lot of stuff I still don't understand about cortisol - and wonder if you have any insights.
Here's a quick list of what I struggle to understand about Cortisol - would be highly interested if you have any insights into any of this:
1. What exactly is a "good" or "bad" level of cortisol. There seems to be more to it than whether you're higher or lower than the "normal" range, because:
a. Firstly, the "normal" range of Cortisol seems to be extremely hard to measure, because it varies a huge amount depending on the time of day (just google "cortisol cycle" and look at the pictures they show)... so if you measure it 40 mins after you wake-up or 2-hour after you wake-up, you'll get very different results.
b. There's stuff that increases cortisol and seems to be good - like sports - and other stuff that seems to be bad - like eating sugars, drinking coffee, being stressed, etc - especially when you do it very frequently (our body seems to loose the ability to handle them when you do too much of it).
c. If you google "symptoms of low cortisol" and "symptoms of high cortisol", you get to a number of symptoms which look like they are the same regardless of whether you're too low or too high (gastro-intestinal problems, headaches, inability to handle stress, feeling tired, being easily irritable, infections popping up, etc)... blood pressure actually seems to be one of the few easy things to tell: low blood pressure seems to mean low cortisol; high blood pressure seems to mean high cortisol.
d. How do cortisol meds like your fudrocortisone play in this? Surely they increase cortisol, which is good to solve your low blood pressure problem. But so would coffee and sugar or putting yourself in stressfull situations - as they also raise cortisol - though I would definetely not suggest you do any of that because I think they might have other bad implications. On the other hand, if you do happen to drink coffee or eat sugars regularly anyway (normal sugar should be the most direct; but "slow sugars" like pasta, rice, etc might also play in this), I would be interested to know if you do find that your blood pressure goes up within the next 5-15 minutes (which is what I would expect would happen, given what I read).
e. How does Sinemet impacts cortisol? I read a few studies that suggest that l-dopa (which is contained in Sinemet) increases cortisol. Do you find any impact on your blood pressure wen you take Sinemet?
2. Are there any things that play in our cortisol de-regulation? My medical analysis show 2 measures of cortisol: one is "total cortisol", where I'm ok. The other is "free cortisol", where I'm low. When I googled this "free cortisol", I realised it seems to be the one that matters, because it's the one that seems to do the good stuff that cortisol is supposed to do (control inflammation, blood pressure, conversion of sugars and fats into energy, etc, etc). Also, I seem to be low on it, because I seem to be too high on something else called "transcortin" - and apparently most of the cortisol attaches itself to this transcortin thing. As I have too much of it, then too much of my cortisol gets attached to it, and too little cortisol gets left as "free cortisol". Has your doctor, by any chance measured your free cortisol and transcortin levels?
3. Are there any genetic factors that play a role? I did a test genetic test run by this website (www.23andme.com/pd/) which I strongly recommend as it's 100% free PwP like ourselves (they even pay for the two-way international postage costs), is dead easy to do (you just spit into a tube), helps them do their research, and gives you lots of interesting insights (plus some funny info) about your genes. Anyway, my results showed that my probability of getting PD is just "average" (meaning that I don't have any of the genes that they know to be a likely cause of PD), but I do have 5 or 6 diseases that I am more likely to have than the average person... and guess what: most of them are diseases seem to happen more frequently when you have cortisol problems (diabetes type 2; inflammatory bowel disease; other types of inflammation; gastric cancer - which apparently seems to be often caused by H. pylori infection, etc, etc).
So, apologies for the long post, but any thoughts/experiences you might have on any of these points that I struggle would be most welcomed,
lfs
I can now discuss the light therapy a little more usefully. A full explanation can be obtained from a reading of their most recent patent application which can be found at http://pericles.ipaustralia.gov.au/ols/auspat/pdfSource.do?fileQuery=%96%AD%B4%A3%B0%7B%92%A6%A3d%A4%A7%AA%A3%AC%9F%AB%A3%7B%7F%93pnnvpuowoo%7Fopnonnppsl%AE%A2%A4d%B2%A6%A3%7B%A2%AD%A5
I have been using the technique for only five days now so much too early for any conclusive results yet and I am simply one pwp with no medical knowledge or qualifications. Having read the patent document which can be hard going they are treating the PD by correcting a melatonin dopamine balance which they claim can stop degeneration rather than simply mask symptoms. I need to study the document more but there looks like experimental evidence supporting the claims. If this is the case and I am certain of the genuiness of these people this is huge because it opens a totally new area for investigation and more importantly stopping the otherwise inevitable degeneration and on its way the effects of heavy narcotic drugs with their side effects.
My own experience so far. Having a strong broad spectrum light shining close by still allows for other activities eg television watching so the process is OK. I am unmedicated so that any changes are noticeable and not due to drug doses or timing.
Two days ago I was peeling onions and suddenly realised that I was smelling the onion and my eyes were clearly tear filled!!!!!! This is the first time this has happened for some years and certainly since I was DX some three years ago.
Tremors have not reduced although they seem to be starting later after I wake in the mornings.
This sounds too early for the effect from the light therapy yet but it was very real. Perhaps? perhaps?
Terrific!! That's very encouraging!!!
Do you mind sharing a bit more on the practical details and how do you use it in practice? You already mentioned in a previous post that...
"In my case he has leased a light providing 3000 lumens with a broad spectrum white light to me for a minimal fee per month (20$). The light provided is made by Philips for treating depression. I am to bathe my eyes with this light 1.2 meters away for one hour several hours before I go to bed"
Specific questions I have:
- Can you provide any more specifics of what this Philips lamp is? (if one wanted to buy one, what should one buy? - are you able to find one like the one you have on the internet?)
- How do you use it in practice? For how long? At what time of the day? In one go? Multiple sessions?
Thanks a lot,
lfs
Hiya Ifs,
While I was getting the run around of various consultants before my PD dx the endocrinologists, who were looking for Addison's disease, gave me something called the SENACTHEN test. This involves injecting some form of cortisol variant to check my reaction. An hour or two after the test all my symptoms went away - all of them. I phoned the testers and said Whoopee, you've cracked it. Just give me a tablet of that stuff everyday, and I'll be fine. They said sorry, no can do, everyone gets that reaction, and sent me on to the next consultant, and showed no further interest. Of course I was in do position to argue, or demand a re-run.
While I cannot prove it (I have no numbers or objective measurements to back this up) it is my opinion that cortisol is strongly linked to PD symptoms. As I say, I am taking a steroid (fludrocortisone) and this has helped my dizzy spells and other symptoms as well. The only monitoring that I do is to take my reclining blood pressure on waking (must be < 150/110) and just before going to sleep (usually c. 115/75)
I will let you know how things progress.
Bob
Hi Bob,
I'm happy that I'm not the only person on this planet thinking that Cortisol is a key factor in this PD thing :-)
My take on it (at least so far) is as follows
1. I'm trying to find my way through the things that are supposed to "fix" your cortisol levels naturally (though this is difficult for me as it involves important life style changes). They seem to include:
a. Light (the key subject of this thread, actually). Getting one's body back into a "normal" light cycle (lots of strong light during day time; limited blue light from screens after dark; sun-rise clocks)... and sleeping during the normal hours.
b. Avoid those bad cortisol peaks (sugars, coffee, and other stimulants plus stressfull stuff)
c. Do moderate sport regularly
2. Address any source of inflammation you can spot (or suspect). In my case (and I guess in most PwP), I suspect gastric intestinal inflammation, so I'm taking some stuff for that. If you look at your blood analyses and you find - like me - that you have high ferritin or smaller red blood cels (low MCV) that seems to be a sign of some inflammation somewhere (assuming you don't have a more obvious problem like anemia). As persistent inflammation puts pressure on cortisol (plus creates damange of its own), I'm taking some stuff for it.
3. Address high transcortin. As in my case, my low free cortisol seems to be linked to high transcortin, I'm trying to find ways to reduce transcortin (not easy).
4. NADPH oxidase. I suspect this might be a crucial part, as I saw some research suggesting that this is the mechanism through which Cortisol impacts PD. NADPH oxidase creates some stuff that kills one's dopaminergic neurons, so when you have too much NADPH oxidase you kill too many neurons... and de-regulated cortisol apparently increases NADPH oxidase. Better yet, some researchers have been able to show (in rats) that when they give them a product that stops NADPH oxidase from happening (apocynin), their PD-symptoms get better... so I'm trying to find where I can get some of this "apocynin" too. So far, I've only been able to find a root called "Picrorhiza kurroa" which I bought and started taking (it doesn't seem to have many counter-indications anyway - so it's not like I'm taking a huge risk)... but I have no idea of what doses could have an impact, and frankly so far haven't noticed any key change in my symptoms (though at least they aren't getting worse and I just stopped taking Azilect, which should have a negative impact). On a funnier note: some scotch whiskyes also seem to contain apocynin (I just bougth a bottle of one brand I suspect might have more apocynin than others :-) ... maybe it won't solve PD, but at least I'll enjoy trying ...
Cheers,
lfs
A good explanation of bright light therapy is provided at http://www.hindawi.com/journals/pd/2012/767105/
It appears to have little downside and at the least allows a reduction in pharmaceuticals with their side effects.
It is also contended that it can reduce progression rate.
My experience so far (2 weeks) is that I have a sense of smell just slightly returning and tears in my eyes for the first time for years when peeling onions. I am otherwise unmedicated. On waking in the mornings I have a new found lack of symptoms for up to an hour. Motor tremor still has not been reduced.
The advice is that motor tremor takes much longer to be effected.
I'm glad it is helping. One question: if I gave you some tablets (say paracetamol) and said these will help with your symptoms and you became convinced it is working would you also report an improvement? The mind is a powerful thing; it literally creates your reality. Thats why double blind clinical trails are so important: they remove the incredibly powerful influence of emotional investment in something and attempt to get to the cause.
Good luck with it
dr j
The placebo effect is very real. I am also a very biased participant. The Doctor involved has taken a number of much more detailed measurements including latency etc. The technique is not being embrased here in oz but is being taken up apparently in Japan and Holland so we will see.
For the second time this time peeling purple onions which normally are less tear causing a stronger tear reaction. Interesting that bright light therapy might first affect and start a curing in the eyes. This then is the second time in years that I have had tears from peeling onions.
Just an update on what seems to be happening thus far with my BLT. bronowski.org I have started sleeping through the night rather than waking at least once or twice during the night.Last two nights only so far but significant. My tremor symptoms have reduced in the evening and are no longer an issue although tremor is still significant during the day. I am now getting occasional smells that are quite intriguing. My shirt smelt quite disgusting when I took it off several days ago. It is simply whiffs not clearly continuous smell however. Not sure why not but I am simply trying to be an unbiased observer. My balance on one leg has improved which helps dressing in the mornings and evenings. I seem to be able to stay up later at night without a strong tiredness. Not enjoying this very hot weather at the moment 43.5Centigrade which is somewhere about 110F and it does stress me. Good for beach swimming however. However I have been warned the results occur quite slowly but there do seem to be things happening for the better. Next appointment mon 23rd when I will now more from their careful analysis.