Good luck with the experiment. I looked at two different Marubeni LEDs at the 1070 range. One is extremely powerful and around $80 per unit. The far less powerful one is about $8 a piece with a minimum order of 10 LEDs.



Nakandakari

I am curious how you are qualifying or quantifying any changes. If you regularly receive physical therapy, you might be able to get some feedback that way.

Central ataxia is a very general term, are you having both muscle weakness and balance issues in your extremities?

I think it would be very helpful to keep a health diary that details what you ate each day, lists the kinds of medications you took (or failed to take), what kinds of exercise you tried, what your general state of health was that day, and what speciffic issues with your condition you noted that day. Also note any changes that you think might be relevent (like sleep disturbance or sexual side effects).

Good luck with this alternative treatment. I hope that you find some benefit from it. My prayers are with you.

Nakandakari

A simple monitor of change that might be useful is to record the time you can stand on one foot. Do it for each side and take the best of five readings on each. Do it at maximum "on" each time, too.

This gives data on both lower leg strength and balance as well.

Artman i MUST point out after checking a detailed article on using infra red leds you MUST either use it in the dark or block out ambient light using a helmet which is dark on the inside.

I saw the paper last week but forgot to mention it here and cant remember the url but i think got it by typing 1072 nm leds in google...

Ambient light MUST be excluded for those 10 minutes when using th infra red light.

A possible crude analogy might be developing photographic film in a dark room using red light but also having turning on normal light bulb on as well,the film developing will be ruined...

if you look at the picture of the helmet you will see it black inside also to prevent REFLECTED infra red light also from interfering with the infra red light emitted from the leds.Otherwise you could easily double the infra red intensity by silvering the inside of the helmet.

Could you give more information as to how the leds were used in the first week regarding position and also if ambient light was excluded or not...

Their patent states that the LEDs should be placed on exposed skin. That's the area that they have tested. Light scatters or diffuses in the hair, so the areas that you're exposing to LEDs to might need to be shaved a little.

Per the article, "It will be appreciated that the apparatus of the invention can be used to direct light to via the transcutaneous transosseous route of the skull but that areas of the skull substantially bereft of hair, such as the forehead/frontal lobes and/or temple regions are the preferred sites to receive light because the presence of hair can reduce and/or scatter the light and effect the power intensity at the treatment site. "

I'm sure that many of you may not wish to shave little areas of hair to expose these areas to LED light. What you might try is putting a lens on the LEDs. Some of the LED companies like Maurbeni have lens which can be placed on the LED to improve it's intensity. It's analagous to focusing the light through a magnifying glass. Just a thought for an alternative method. Naturally the area of the skull that you wish to expose for Parkinson's has the most hair, so you might have to shave a small spot for LED application.

You don't have to get fancy on the material to make the area dark. You could probably make something cheap out of black material to cover the LED and scalp region, and sit in a dark room while doing the treatment. Remember to cover your eyes during the treatment.

All healing takes time. If you were severely injured and had to take physical therapy, it often took months to get back "some" function. I know, I've been through that process.

The article claims some rather astounding results, so I'm a bit wary. Even with that reservation, if it does manage to foster new neuron growth, the brain might take time to rewire interconnections (the dendrites between neurons). In the case of Parkinson's, not only would the neurons have to rergow, but also produce the amounts of dopamine that you would need to properly function.

Please continue all of your pharmacalogical treatments and normal medical care while using this alternative medical procedure. If you noticed that you need less Sinemet after trying this for several months, wouldn't that be interesting in itself?

In the end, we'll need extensive clinical studies, and PETs and MRIs post-treatment in order to show evidence of efficacy.

Now that I have a post count of 10, maybe the forum robot will let me post the URLs. I am not affiliated with any of the companies or websites. I'm only posting the information since it is very cutting edge. I'm a medical sstudent, and I am thinking of making one myself.

Here is the patent application:
http://www.wipo.int/pctdb/en/wo.jsp?...4&DISPLAY=DESC

Here is a link to a LED array that someone might alter with the proper LED wavelength. You would need to replace the existing LEDs and wire in a power source. Probably a cheap dc power supply.
http://www.mcminone.com/product.asp?...ds&ATT=froogle

Here is a company that sells LED therapy devices, cheaply by the way. Remember that for skin conditions the recommended wavelength is 850nm, for neuro use a wavelength of 1720nm is needed, so you would have to order the proper LEDs and solder them in prior to use.
http://heelspurs.com/cgi-bin/c/store...ct=LED_Therapy

Here is the company that sells the proper LEDs and lens in the USA:
http://tech-led.com/index.shtml


Good luck,
N

Question....Does anyone know how we can get a patient with this disease to become a test patient of this helmet? My Dad is healthy except for the affects of this disease, is there anyone who may know how we can test this new helmet before its available to the public next year. We are willing to sign forms or what ever is necessary to beta test and become part of the clinical research team. Thank you, MJPickett

Well it would be a long line.

The way that clinical studies usually work is they test on animals. Once there is some agreement that the therapy is beneficial, they test on healthy human subjects for short periods of time.

Typically with drug tests, they would treat some human subjects with real drugs and several with placebos. Then they would test all the subjects to look for drug interactions and clearance rates. Clearance tests how fast the drug passes out of a healthy subject (usually liver or kidneys). Then several retests to see if the drug cleared, and no adverse results happened.

Now with the helmet, we're talking about a whole new protocol. I would guess that they would get healthy human subjects, and do brain scans to look for new growth. Remember that new growth isn't necessarily a good thing. Cancer is new growth, in fact uncontrolled growth of tissue. Many times when the body grows new tissue, the wrong kind of growth occurs. This is called metaplasia. Anyway, back to scans, one scan they can do is called a PET scan. This measures how much glucose is being used by the brain, a measure of brain activity. Remember that what the only definitive way to measure new neuron growth is dissection: something that no one can ethically do with human subjects.

With Parkinson's or Alzeheimer's or fill-in-the-blank, the scientists running the study would have to measure metabolites, look at brain activity, and run tests on function. Clearly with healthy subjects, you might not see any results. Their brains are already functioning well, and producing say dopamine in the substantia nigra.

The initial studies would only prove that the LED therapy wouldn't cause harm, even if it created more neurons. The definitive tests would have to test actual patients for improvement in motor function.

The whole point of putting the article up here, and coming up with hypothetical helmet schematics is that we want people to know about it, and realize that it may be years, maybe even a decade before they allow human trials. Science moves very slowly, and growing new neurons is not something we do lightly.

If you'd like to put your father in line for a clinical trial, chances are they would only pick him if the limits of his disease were minor. That's my humble opinion. Or if the effects of his Alzheimer's was diagnosed relatively early they might also pick him. Advanced cases probably wouldn't get in the clinical trials.

I encourage you to do everything that your doctors are telling you to do. I know you must be so frustrated by how little we know about Alzheimer's and many other brain type pathologies. We must be moral, ethical, and reasonable in how we gradually release new therapies. Glance through any drugs released over the last decade, and you'll see that many people were harmed by treatments. We have to be oh so careful to do no harm.

If you simply can't wait, some have suggested making a helmet yourself. If you look over the patent, we do know some critical information. You might be able to construct one simply enough and as long as you follow some general safety procedures, you might see some positive outcomes.

We do know that exposing the skin to certain wavelengths of light help people with rosacea, wound healing, cold sores (herpes simplex I), bone spus, etc. It's believed to help with the growth of healthy tissue. Looking over the patent, there seems to be evidence that the LED light at 1072 nanometers seems to grow new neurons in mice.

Several of us have combed the Internet looking for LEDs at this wavelength. They can purchased relatively inexpensively. What we don't know is the power rating of the LEDs. It is clear from the helmet pictures that a large cooling fan is used to reduce the heat output. My guess is that this is proprietary information. They simply don't want to release the exact specs to recapture their investment, and also to be responsible.

I'm not encouraging you to do so, but it would be theoretically possible to take an existing LED light therapy device, insert new LEDS at the right wavelength of 1070 nm, cover the device so the light is exposed to the right areas of the brain (and not exposing the eyes), and do the whole thing in darkness.

I pray for your father and yourself. It is terrible difficult to wait for new treatment options. Please be prudent in whatever you deicde to do.

Thanks for the info. I'm currently redesigning the apparatus to cover the temples and forehead in addition to the cerebellum. Also will increase the exposure time considerably.

I am presently experiencing slurred speech, poor balance, and fine motor skill problems due to the ataxia.

Before trying the Maribeni LEDs, I want to complete preliminary tests at 940nm to see if there is any change in symptoms.