Thank you for the thought. I live where there is ample sunshine and spend a good time of the day in the sun. Lack of sunshine or exposure will not be an issue for me. Having 3000 lux of blue green light shine into your eyes (ex UV) at a set time before sleeping for a good period does have a shock value which I guess one would normally not get. Certainly during the day I do not look at the sun and also wear transition lenses.I guess the test is whether it works! It is the only technique that I have heard of that contends it may reduce degeneration. It is also the only may I say again only treatment that contends to treat all four pathways damaged by PD. The other simple issue is whether it has bad side effects and costs are outrageous. None of these things seem to be a problem so the question is simply whether it works. I am not a first guinea pig here as others have reported great success but there is nothing like being convinced because it works for you. I would like others to know of this technique but can only report on my own experience for that. Compliance with the treatment can be quite challenging. My experience after one month which is a small treatment period is that things are certainly happening eg some smell sensitivity returning, improved stability, regular sleeping pattern, reduced tiredness during the day, tremor NOT decreased during the midday but somewhat less first thing in the morning and later evening etc then sensitivity to hay fever pollen which I have not had for years. This suggests to me that other pathways are being affected. I am certainly a biased reporter but hopefully what I have to share will be helpful to other PD sufferers.
It is challenging to find a consistent period of one hour in the evening that you separate from anything else to have a light shining in ones eyes. I have now met these people and am quite sure that they are in the business to help. They are in the wrong business to make money if that is what they are about. You ask about the dead dopamine producing cells. I wonder if this is blinding (sorry about the pun)people from looking in the right place. I was introduced to these people by someone who has had all his symptoms releived. I am still cautious but certainly no longer sceptical. My own cautious approach allows me to test the benefit and stop at any time if there is some negative. I think you might be being overly sceptical. The cost in real terms is negligble so far and trifling if it works as they suggest it might. I am a test monkey on this and have nothing to lose thus far and am interested to simply spread the news for those who might like to try it.
I tried really hard to resist this but I succumbed to it: blinded...by...the...light!
If loss of dopamine producing cells is not the cause of Parkinson's then why has it been shown that taking dopamine in tablet form restores motor function? If the substantia nigra is not involved then why does stimulation of this area of the brain restore motor function? If loss of cells is not causative why is the whole Parkinson's research effort aimed at understanding why nerve cells are lost and working out ways to protect or add them back?
I say again, if light is truly effective in preventing or slowing Parkinson's then nobody would have Parkinson's because we are exposed to light every day. The fact there is such a thing as Parkinson's makes the light therapy, if it is effective, tinkering around the edges of the disease.
I understand the psychological need, in the absence of a cure, to try things (anything!) but try not to say that it is scientific. Science has a laborious, slow procedure it goes through before consensus is reached. It also builds on previous discoveries.
I would rather work on coming to terms with the disease and work out a way to live with it. I don't have the resources to conduct scientific research. I may be wrong but reaching for unproven treatments seems to me to be a kind of denial of coming to terms with Parkinson's. You can disagree!
Good luck with it
dr jonny
I work hard in my job, it is rewarding but exhausting so by the end of each term (like now)I'm really struggling with pain and fatigue, some days I feel so damn stiff I can barely move.
At the end of my two weeks off I will be ok again, relaxed after a break
In the summer holidays we went to Tenerife for two blissful weeks in the sunshine, we had a private villa with its own pool and did very little all day but relax and enjoy the sun. Nights were spent in an air conditioned room guaranteeing a good nights sleep. By the end of the 6 week break you would have had a hard job recognising I even had PD, now you'd have to be blind to miss it!.
My point is what causes my symptoms to almost disappear.
- Sunshine?
- Heat?
- Swimming daily?
- Eating well?
- Relaxation?
- Time to myself?
- More sex?
- Time off work?
- Absence of stress?
- spending quality time alone with my husband?
- no responsibilities?
- no kids?
- no grandchildren?
It could be any amount of the above factors contributing to it but STRESS is the biggest curse for my PD.
- My job is stressful, emotional and tiring, but I love it
- My children are stressful, emotional and tiring, but I love them
- My grandchildren are stressful,emotional and tiring, but I love them too
I could eliminate much the stresses in my life, I don't have to work, I don't have to involve myself in my children's lives, I don't have to look after my grandchildren. If I did all that I would have few symptoms and no life either.
I'd rather have PD than give up everything that is important to me.
I love your pun. Having spent nearly sixty years at the cutting edge of research I rarely saw what you think iis the scientific technique resulting in any breakthroughs. I never forget my question at one stage to a representative of one of the worlds leading pharmas. We were negotiating a deal where they were to represent my client around the world and my question was why are they deigning to handle my clients product given their reputation and size compared to my small client. The reply was that they had 2000 of the worlds leading scientiists and not an inventor among them.
Bright light therapy is well established for seasonal disorder. Willis extends it to parkinsons. He sets out criteria which are working for others, he has published his results thus far, he has advocated something that sounds ridiculously simple as a solution or a preferred answer to this very nasty disease. My meeting with him confirmed my belief that he was genuine although battling lack of support from others but not all. It is not a road to riches as you have heard me say. Your answer is that you cannot believe simple exposure to light can in any way assist treatment of PD unless there are double blind large trials proving the technology.
That is about to happen and perhaps the results in a year or more will be helpful. Others may wish to try this technique before the results are double blind proved.
sunshine does help ,i have had pd for 8 yrs and we go on holiday every yr,and every yr on holiday i feel better.theres got to be something in the air when your abroad!
Results from my latest visit with research scientist and clinician Dr Greg Willis. I have been using the bright light therapy for one month but he also advised that I use deep breathing which I had neglected but he says is important. I took careful sleep notes in the last month which he said showed my progress was good and as expected and is typical where my sleep pattern became more constant so I sleep now through the night without waking. My physical parameters are I gather all in the now normal range e.g. latency, stability etc. One might recall that I am without any dopamine supplementation so the effects are reasonably due to compliance re the therapeutic regime. Tremor is still with me and has seemed to be increased except it reduces even disappears when I relax and with it deep breath for awhile. I tried it several times in his rooms and the tremors dropped away only to build up over a period when I came home only then to remind me to relax and deep breath and as he said smell the roses. I am still suffering from the disease and he has recommended a very small dose of L-dopa to assisting reducing tremor. The dose is essentially subclinical or a nuisance level with therefore no chance of megadosages causing parkinsonism. Finally I did try smelling the roses when I came home and was able for the first time for years to get a slight but definitely actual smell of roses. One keeps wondering ifI had concentrated thus before starting this treatment I would have the same result but hey I am hopeful.
thats good still!
One of the huge issues with medical research is that in order to provide a commercial product eg a drug that many wish to buy requires huge risk investment and an end result that is a protectable drug or device that the investors might get an exemplary rate of return. Then there is the risk of something not working or going wrong and the damages cost can be massive. For a risk averse investor not much of a deal. Double blind testing is an essential for an end stage of a commercial proposition simply to assure FDA approval etc etc. All of this is not much fun for we the sufferers of the disease. Universities are also now more and more caught in the commercialisation trap as budgets are stretched.
We as an affected group should be cheering to high heaven that someone has taken and researched a quite different route as to cause and treatment of PD. It is highly likely that the result for treatment and an effective "cure" will not require an expensive drug etc. Bright light therapy as a therapy for other problems is known. Here is an explanation from the originator of the treatment.
I have reported thus far the results of my treatment but where for goodness sake is the cheering and support for a courageous inventor. Here he is explaining the rationale.
http://www.youtube.com/watch?v=4pWuDscjcqI
Are we so in love with the sickness syndrome that a cheap possible "cure" is not to be considered.
Give me some support that I am not wasting my time reporting. It does take time and effort with wobbly fingers.
From my side, I can easily say that I very much value your reporting!!! Please don't stop.
Happy new year,
lfs
Thanks for this most positive reply.
I do get tired at times and it is important for me to know that my efforts are not in vain. BLT as a system may not be useful for many but it is important we know that it is a very genuine effort to answer PD from a quite different perspective and if it gives us another option and one that is NOT closed out by preuse of L-Dopa medication then we all need to support this exploration of an answer.
Who is the scientific team behind Bioheart?
Having an extreme interest in stem cell technology, the applications, the current benefits and the future milestones yet to be achieved, I’ve been looking more in depth into the companies who offer this incredible technology.
Doing some brief online searches about these companies, BioHeart (on the human side) and Stemlogix (on the animal side) appeared to be prominent in the public domain. I consistently came across news coverage, press releases and you tube videos about both companies and their success in the regenerative technology space.
Now being intrigued, I was more interested in the companies themselves, and not just the technology they offer, but the people behind making BioHeart and Stemlogix successful.
Doing more in depth research, and to much of my surprise, I came across a lawsuit filed by Stemlogix. What I learned from the allegations in this suit about management of what initially appeared to be quite reputable companies became even more concerning.
The lawsuit itself is filed by Stemlogix suing a scientist for breach of contract, whom they hired to create a scientifically validated method of controlled variables to yield a defined cell product to be used in training, research & cell banking.
Interestingly enough, this particular scientist whom they refer to is Kristen Comella, who is currently the Chief Science Officer of BioHeart and is also currently serving as co-founder and CEO of Stemlogix. Is this not a conflict in itself? Unless these are both part time positions, how can one person effectively manage these two roles?
Additionally, I was also surprised to learn that Stemlogix is registered and operating out of Ms. Comella’s personal home address. How can a company offer “Premier In-Clinic Stem Cell Therapy Solutions for Veterinary Medicine” as stated on their website and be run from a person’s home?
However, some of the most interesting accusations of Ms. Comella outlined in this lawsuit are as follows:
- Stealing corporate funds by taking advances and moving financials out of the companies’ accounts.
- Misappropriation of trade secrets
- Misappropriated funds through Comella’s involvement with Pavillion Foods, a company owned and operated by Comella’s family, in which Comella insisted and insured that this “food company” be utilized as the sole source for lab kit materials and production of kits without seeking independent bidding for prices from third parties. (This particular point is a huge red flag to me, how is it safe, ethical and for the sake of quality control even logical to make stem cell kits in a food plant?)
- Disclosing confidential and proprietary business information to third parties, despite signed disclosure agreements and contracts
- Purposefully and intentionally withholding orders for stem cell kits and refusing to provide customer information to permit these orders be fulfilled in attempts to cause financial harm.
- Converting the day to day operations information of Ageless, Stemlogix and LabKits for her own personal use via improper hoarding of information.
It surprised me that a publicly traded company (BHRT) has managed to not only keep this under wraps but even have this individual employed, as her actions appear to be unethical and unbecoming of executive management of what again, I initially thought were two reputable companies.
I hope this prompts further action and response, as both these companies owe public investors and users of said technologies further explanation of how someone like this can be a part of their team and who actually stands behind their “science”.
For additional details and information regarding the full lawsuit, please see the following link:
Did you stop the light therapy? Alternative approaches interest me greatly.
UK company Reneuron are conducting some stem-cell trials, but nothing Parkinsons related that I can see. Stem Cells appear to offer the most likely route to a cure if the ethical issues can ever be resolved
http://www.reneuron.com/the-pisces-clinical-trial-in-disabled-stroke-patients
4yr project more linked to us and ou condition here http://www.neurostemcell.org/
.
I have kept up the treatment and can report that I have kept most of the PD symptoms at bay but suffer from bilateral tremor. I remained without any L-dopa medication but have now commenced 62.5 madopar 3 times a day to see if this will relieve tremor during the day but I have only had a few days on this regime so it might be too early yet to report some result.
Hi all,
Just to say how much I enjoyed these posts, I feel the different stances taken by Dr Jonny,Meclenberger, Ifs and the other contributors is very productive..
A few things I picked up on included Mecklenberger's comment re 2000 scientists but no inventors, in a similar vein, though I feel I have both feet in the science camp I also think that what is now being termed 'Scientism' is now becoming a hindrance to progress. Whilst strict protocols and controls are essential what is first needed is imagination and a willingness to think out of the box ,explore.
The very pronounced placebo effect in Parkinson's and the phenomenom of paradoxical kinesia may suggest we're not as dopamine depleted as we think.
My own view and area of interest is stress as a causative factor and I'm trying to unravel the connections between dopamine,acetylcholine,seratonin,cortisol etc. I'v long had a hunch from my own experience but became convinced there is a subset of stress induced Parkinson's, associated with early onset after viewing images going back to the 20's showing combat veterans with PTS which manifests as a movement disorder. (interestingly one researcher has linked acetylcholine to paradoxical kinesia)
In general I applaud anyone who attempts to shed some light on the dark underbelly of the Parkinson's world.....lets be frank nowts been achieved by science since the sixties because of entrenched views.
Final word "Dyskinesia, natures way of telling you you've been given sh*t drugs" sorry I meant 'Gold Standard drugs.
Thankyou all again
UNiggs
You may be right. At a recent conference in australia there was some epidemilogical results suggesting chlorinated liquids were a high risk factor for genetically susceptible people.
pdrecovery.org
is also an interesting site.
I am just wondering if emf pollution may also be a factor although pd has been recognized and existing well before our now extensive emf saturation.