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: 

Optogenics and the Blue Light Laser 

Optogenics

Methylene blue and mitochondrial function  
Methylene blue to slow aging

The Blue Cone Pathway 1995

Retinal deficit in Parkinson's disease 

Addenda with thanks to Peter Austin

A History of the Intuitive Colorimeter

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. 

Pain and Parkinson's Disease

PD Is No Laughing Matter but Smiles and Laughter Can Help Ease the Pain
My husband has PD and I can tell you that his body aches nearly every day. As a matter of fact it was an odd sensation/pain running up his thumb that took him to the doctor for a diagnosis.

When you think about the variety of PD symptoms it is not surprising that there would be pain associated with increasing muscle stiffness. Although not everyone experiences all of the wide assortment of symptoms, as the disease progresses, probably every PWP will experience stiffness. And with the stiffness, the dystonias - the unwilled muscle contraction - comes twisting and pain, cramping and pain. But there's more.

Of interest is that even though Parkinson's disease usually begins unilaterally, pain can be bilateral. Also of interest is that men with Parkinson's have a higher perception of pain - lower pain threshold. Not by much, however. Steve's massage therapist says that the tension in the chest muscles on his bad side causes a pull and therefore pain on the good side.

The body posture of the Parkinson's shuffle can cause pain in the neck, shoulders, back, hips as the body maligns itself. Headaches are another result of this kind of pain.

PD pain can come from non-motor areas as well. There is neuropathic pain which can cause tingling, burning, numbness, sharp pain. The Parkinson's Disease Foundation breaks the causes of PD pain into five areas: Musculoskeletal, Non-Motor, Dystonia, Akathisia "discomfort due to extreme restlessness" and "a rare pain syndrome known as "primary" or "central" pain, arising from the brain." Depression can also cause and/or heighten sensitivity to pain.

Pain is not a punishment for having a disease. It is a symptom and/or a side effect and it should be addressed by you and your doctor. In some cases pain could be a side effect of medication or medication "off" times but by adjusting the dosage the pain can be lessened.

Lowering stress levels can also reduce pain. Adjusting the body through exercise and massage therapy can make a real difference. To counteract the pain of rigidity, my husband goes to exercise therapy and gets a weekly massage specifically addressing the target points of his stiffness: his bad side shoulder, neck and left leg in the course of the full massage. In between we have small hand held massagers that really do help his neck and shoulder even when only used for a few minutes at a time. At night he uses a heated mattress pad. Electric blankets don't work as well here because dogs have an affinity for chewing them...don't ask.

He does his breathing and voice exercises but not as often as he should. He does those not only to be heard and understood but to avoid the panic of choking and the fear of dying that way. So he is relieving a stress producer as well.

I can't stress the importance of exercise to stretch the muscles, help the body resist the stiffness, punch up the endorphins, resist the pain. Nor can I overstress the need to warm up slowly...not to hyper-extend...because you've already got enough pain. About exercise: ease into it and then persist. You may see some results and then plateau - that doesn't mean it isn't working. Just stay at it. But mean it. Don't just go for the motions. Don't lie to yourself. Don't be an exercise potato. You actually have to work at it. Otherwise you might as well just watch a a cooking show instead of an exercise video.

There are other courses of treatment including Forced Exercise which if done properly can abate symptoms for a couple of weeks: Aqua therapy (swim therapy); Dance therapy - amazing to see PWPs leave their walkers behind to dance - Breathing and Voice therapy, and one of the best, Yoga. Yoga for movement, posture, balance, mind, flexing the right muscles to for relief of constipation, breathing, anxiety-tension relief, depression all of which aid sleeping.

Who would have suspected that the PD associated sleep disorders might actually be a contributory factor to increased pain. A cancer pain study conducted in Tennessee recently demonstrated that lack of sleep/sleep disorders may make pain worse in cancer rather than the other way around which was expected.

Successful Deep Brain Surgery can result in the reduction of both meds and symptoms. This reduction can mean a reduction of pain or the absence of pain. Permanent acupuncture can also result in a reduction of symptoms and consequently... There are other therapies in the pipeline which may seriously impact symptoms with the same pain reduction ensuing.

A few words about TENs machines (transcutaneous electrical nerve stimulation) I can't find anyone who has had success, including Steve, using one. If you have used one, we'd all like to read about your experience in the comments section.

We know that cannabinoids and cannabis components do assist with certain kinds of symptom relief as an anti-spasmodic and muscle relaxant. Parkinson's Disease is on the medical marijuana list in the states which have that understanding. In a 2004 study which involved THC, a cannabis component, demonstrated the possibility that it will help with PD pain as well as ALS spasms. At present Riluzole (the only FDA approved med for ALS) extends life from 2 - 3 months. In mouse studies, THC prolonged life for a human equivalent of 3 years or more. There are several cannabinoid receptors in the human body waiting to help with pain and stress reduction.

Laughter is a great stress reliever. If you've ever laughed with your entire body and soul, you know what I mean. You feel euphoric afterwards. Because that laugh really got your endorphins going. With those natural pain killers aroused everything else disappeared into the background for a few minutes. The smiles can come from whatever, wherever. We need them. For big smiles I go outside to watch the dogs play together. Sometime Rita picks up one of her stuffed toys just to get Harry to chase her or play tug of war...which accounts for the loose heads, limbs and stuffing around the yard. The day she "found" the dead squirrel, I quickly called a halt to that tug of war...but we were laughing anyway.

So when you hear people say that you need a sense of humor to have Parkinson's, they're not kidding around...or maybe they are.

references and additional reading:
http://www.pdf.org/pdf/Pain%20in%20PD.pdf
http://www.cmellc.com/geriatrictimes/g001029.html
http://en.wikipedia.org/wiki/Laughter