Sunday, November 22, 2009

Parkinson's Dystonia and Seeing Blue

Blue, Moon and PD

Since the mid-1990s PDers have heard that blue lens glasses can help eliminate some PD symptoms. Now there is a Parkinson's disease dystonia video on youtube.com which is nothing short of astonishing. The original video was made in 2003 while the gentleman was being given a UPDRS. Alas, this video has recently been removed from youtube site and that affects several sites which backlinked to it.
 
In the video the PD patient filmed has a severe dystonia attack, his body literally rolls from the waist, through the shoulders, neck and head.  And then the therapist or nurse holds an 8"x11" sheet of blue plastic in front of his face. He takes it, rises from the chair and within seconds the dystonia is gone and he is walking rhythmically around the room. Each time the sheet of blue plastic is in front of his eyes the dystonia ceases. A slight tremor remains in his hand but that is all.

Presently there  is no scientific explanation for how this is happening.  One theory is that different organs of the body have different signatures of vibration, when the vibrations  get out of sync they cause illness,blue light has the ability to correct the balance.
 
Dystonia can develop as a side effect of dopamine replacement therapy - levodopa - or it can be a separate neurological condition. It is characterized by sustained contractions which can cause twisting, repetitive movements, and/or painful postures.  Dystonia can affect the arms, legs, trunk, neck, head or face.  It is estimated that there are at least 1.2 million people in the USA with PD-LID (Parkinson's Disease with levodopa induced dystonia) 

Dystonia is essentially a subset of dyskinesia. Characterised by abnormal movements, decreased voluntary movement and the presence of involuntary movements, dyskinesia is a symptom of several conditions which are distinguised by the root cause.  In Parkinson's disease, it is often seen as a purposless motions, uncontrolled and often rapid, interrupting normal movement or posture.  In dystonia there are sustained muscle contractions which cause involuntary twisting, repetitve movement, abnormal posture often resulting in constant pain, cramps and muscle spasms.   
 
We have read reports from 1995 of people who had prescription glasses made with blue lenses and found significant improvement with stiffness and fine motor skills although not as much as a plain blue overlay because of the additional gray tint to the blue of the optical blue lenses.  Another woman with PD reported that often in the morning she would freeze and not be able to get out of bed.  Her husband would put the blue glasses on her face and she would be able to move again.  Still another women reported that the blue glasses helped her with  both dyskinesia and with asthma attacks.
 
It is known that in dyslexia color can play a significant role. Dyslexia is associated with both grey and white matter dysfunction and altered connectivity among phonological/reading areas.  There are altered densities of grey and white matter in the frontal lobe and in the white matter neural pathway connecting the temporparietal junction with the frontal cortex. 
 
My wife recalled that 20 years ago our son had a friend with reading problems due to dyslexia. His father, an educator, decided to try putting colored overlays over Matt's reading material to see if that helped.  Blue seemed to do the trick. 
 
It also turns out that a light blue background, as opposed to white, appears to be the most effective tint. But what can be the biggest help is putting an overlay in front of your computer screen or over your paper reading material.  As a matter of fact you can buy the overlays for reading a book as well as for your monitor screen
 
There are some very specific instructions for creating the exact shade of blue and these can be found at CALIPSO. It appears that both the overlays and the sunglass style glasses that we bought work also. You do want to be sure that the blue you try is not on the grey side because that will reduce the effectiveness.
 
I don't suffer from dystonia and I've outgrown my youthful asthma but I've been wearing blue glasses every day for about 30-40 minutes and I think they have been helping me to be calmer and less tense while I'm wearing them.  Relief of stress is important to me. Ten years ago these glasses would never have gotten near the bridge of my nose, it being too busy sneering at them.  But having PD has opened my mind to the mysteries of the brain's operation.  
 
Trying to understand and gain insight

Additional BLUE reading for Parkinson's disease: 
Retinal deficit in Parkinson's disease 

Addenda with thanks to Peter Austin
Intuitive Colorimeter - with thanks to Peter Austin 
How to use the Intuitive Colorimeter

Addenda 2016
Tinted lenses and dystonia - appears to be something of a speculation. 
Thank you to a very thoughtful gentleman for providing this link to the blue lens and blue gel dystonia test

12 comments:

  1. I phoned a optician who specializes in making Precision Tinted Lenses for people suffering from dyslexia and migraines. He had not heard of blue being used for Parkinson's. He was less than impressed by the instructions given for creating the tint. He uses an "Intuitive Colorimeter" to gauge the exact shade required to alleviate symptoms. The lenses are then made with the exact tint.

    My appointment for a test is next Friday.

    Peter Austin.

    ReplyDelete
  2. Thank you.
    This is invaluable for people who intend to have such glasses made.
    We think your optician is on the right track and will add the information to the article.

    ReplyDelete
  3. I had my eyes tested this morning using the Intuitive Colorimeter. The gadget consists of a box with knobs on the side. You look through a window at a piece of paper on which some text is written. The optician then makes adjustments to the lighting conditions and asks whether the text is clearer, not clearer etc. When I tried it, I was disappointed. Even though the machine can cycle through all colors, there was just not the saturation required. Too subtle and wimpy.

    We tried another idea. The machine comes with a very expensive box of calibrated coloured lenses. The optician made up a set of lenses that fitted in a frame. We played with different combinations for a while until a set was made up consisting of two blues and a green. Very dark. I put them up to my eyes and felt my shoulders relax. The optician said he thought my tremor had reduced. I suggested that was probably due to me concentrating while holding the lenses to my eyes. We tried with him holding the lenses to my eyes while I kept my hands on my lap. There was a definite reduction in tremor.

    Later in the reception area, the optician mentioned the effect to a colleague and I agreed to do a demonstration there and then. I stood with my arms bent as though I was going to play a piano. My tremor was there for all to see. The optician held the blue lenses to my eyes. Then the receptionist, who was also observing, said:

    "It's stopped".

    The optician has a number of PWPs on his books. There are a few with dyskinesia that is so bad, their heads need to be held by their relatives while they take tests. He is going to try the blue lenses on them to see what happens.

    The system is made by Cerium.

    Peter Austin.

    ReplyDelete
  4. IM AT THE POINT THAT I WOULD TRY ANYTHING ,, IVE TRIED MENY MEDS ,, IM ON AZILECT NOW STARTED MY 7 TH WK,, TODAY STILL NO HELP 1 MG TRIED IT ALL,, TOOK MY FIRST BOTEX INJECTION 7 DAYS AGO.. NO SIDE EFFECTS.. SO FAR NO HELP,, IT TAKES 7 OR MORE DAYS TO SEE IF ANY HELP .. MAY TRY THE BLUE TRICK,, THANK YOU FOR INTERST

    ReplyDelete
  5. Trying this with an optician won't cost anything, unlike the meds and the botox, if you can find the right color and it helps, then it will be work the prescription.
    We often have to kiss a lot of frogs. Perhaps your prince is out there.
    Here's to hope!

    ReplyDelete
  6. www.colorglasses.com has blue clip-ons, in addition to fit-overs and regular glasses.

    ReplyDelete
  7. I am an optometrist and a patient asked me about blue lenses for Parkinson's and dystonia. My questions are what shade/tint of blue works best and is there any scientific research or studies that I may read.

    Austin Ruiz, O.D., F.A.A.O.

    ReplyDelete
  8. Please refer to the comments above regarding the Intuitive Colorimeter.
    As to the studies, I'll finally get on that.

    ReplyDelete
  9. We have been using colour in Parkinsons for around 12 years - we have a much more advanced system than the intuitive colorimeter - one major problem - we can't get a clinical trial started. Results are idiosyncratic - but often astonishing. They are still experimental - and the colours that are best are often well outside the range of the intuitive colorimeter. I would be happy to show the effects in conference or work with any researcher - can't find one at the moment that is interested in the subject.Colour can affect - tremor (usually), smell, taste, gait, sensory timing etc. It's based on the Pulfrich effect

    ReplyDelete
  10. We have been using colour in Parkinsons for around 12 years - we have a much more advanced system than the intuitive colorimeter - one major problem - we can't get a clinical trial started. Results are idiosyncratic - but often astonishing. They are still experimental - and the colours that are best are often well outside the range of the intuitive colorimeter. I would be happy to show the effects in conference or work with any researcher - can't find one at the moment that is interested in the subject.Colour can affect - tremor (usually), smell, taste, gait, sensory timing etc. It's based on the Pulfrich effect

    ReplyDelete
  11. My friend wore blue lens sunglasses to a public event in nyc on 9.11.16 and had had very good results. She did have a minor pd freeze after an hour. She's going to keep wearing the glasses and see what happens. There is nothing to loose at this point!

    ReplyDelete
  12. I believe your friend was included in some of the festivities filmed that day as I saw an elderly lady with blue shades who later was held up as she was falling.

    ReplyDelete

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