La razon que nos une ">The reason that links us together

Tempus fugit" decían los latinos. El tiempo vuela. Para las personas con Parkinson esta frase tiene una valencia todavía mas especial. La lucha contra el tiempo que libramos cada día entre toma y toma nos enseña que hay que aprovecharlo todo y que cada momento dejado atrás es un momento perdido. No obstante, en otros aspectos de nuestras vidas, parecemos olvidar esta gran lección de vida que, muy a pesar nuestro, el PK nos ha enseñado. Un año mas se acerca la fecha que los afectado por el PK tenemos marcada en el calendario y un año mas aplazaremos "sine die" (otra perla del latín que significa "sin fecha") el arranque de una movilización real, unitaria y coordinada de las personas y asociaciones para despertar la sensibilidad de la opinión publica y de la administración hacia la problemática del colectivo PK. Para un recién incorporado a este nueva visión del mundo, resulta francamente difícil de entender como un numero tan grande de personas y de asociaciones, con los medios que la tecnología nos pone a disposición, no hayan conseguido superar los limites de "nuestro proprio jardín" para lanzarse a la exploración de mas grande prados.

">Tempus fugit "said Latinos.
Time flies.

For people with Parkinson's this phrase has a valence even more special.

The fight against time to book every day between takes and takes teaches us that we must take advantage of everything but each time left behind is a moment lost.

However, in other aspects of our lives, we seem to forget this great lesson of life that, despite our very, PK has taught us.

Once again it's aproaching the date that affected by the PK we marked on the calendar and another year defer "indefinitely" (another pearl of Latin meaning "no date") boot of a real mobilization, unified and coordinated individuals and associations to raise awareness of public opinion and the administration to the problem of collective PK.

For a newly incorporated into this new vision of the world, it is frankly difficult to understand how such a large number of individuals and associations, with the resources that technology makes available to us, have not managed to overcome the limits of our own garden " to engage in the exploration of bigger pastures.

¿Estamos todos tan satisfechos de la situación actual para no considerar necesaria ninguna acción? Entonces, ¿a que vienen tantas quejas en todos los foros? ¿Esta alguien realmente convencido que unir esfuerzos en favor de unos objetivos concretos y compartidos, puede acabar perjudicándole? Unir esfuerzos, que quede claro, nadie habla de fusionar, federar, asociar, y todo lo que pueda sonar a renunciar a lo que se ha venido construyendo a lo largo de los años y que constituye uno de los valores del movimiento del asociacionismo: la variedad y la proximidad. "Virtus unita fortior!" La virtud unida es mas fuerte. Hay objetivos que están fuera del alcance de cada uno de nosotros como individuos y justamente nos asociamos buscando en la agregación aquella fuerza que como individuos nos falta.

">Are we all so satisfied with the current situation in order not to consider any necessary action? So, how come so many complaints in all forums?
Is anyone really believe that unite efforts for specific and shared targets can harm them at the end of the day?
Joining efforts, let's make it clear, no one talks about merging, federate, associate, and all that may sound to abandon what has been built over the years and that is one of the values of the movement's associations: variety and proximity.

"Virtus unit fortior!" Virtue is stronger united.
There are goals that are beyond the reach of each of us as individuals and we associate looking at the aggregation that strength that we need as individuals.

¿Que fuerza oculta nos impide ahora repetir este mismo camino de unión, aunque solo por un día, para un objetivo que todos compartimos? ¿Si alguien se ofrece para empezar a andar este camino, nos apuntaríamos a acompañarle? Llevo tiempo reflexionando sobre el tema y buscando la manera de encontrar el hilo de la madeja. Me gustaría contar con la participación de todos para una reunión de ideas para actuaciones concretas que nos pongan en marcha "Unidos contra el Parkinson ".

">What hidden force prevents us now repeat this same path of unity, but only for one day, for a goal that we all share?
If someone offers to start to walk this path, we'll be ready to accompany him?
I have spent time thinking about the issue and seek ways to find the thread of the skein.
I would like to involve all for a reunion of ideas for concrete actions that we put in place
"Unite against Parkinson <http://unidoscontraelparkinson.es/default.htm>."

I’m ill, but Who Really Needs to Know?

February 21, 2008

I’m ill, but Who Really Needs to Know?

By Lisa Belkin, The New York Times

One of the first decisions you make in the emotional hours after a scary diagnosis is whether to tell others. Most of us share the news with our loved ones, but what of the circles beyond, particularly those at work? Your boss?

Read full article

What it's all about (Parkinson's Disease)

What is Parkinson's Disease?

Dr James Parkinson first identified the condition, which he called "shaky palsy", in 1817.

It is a chronic (long-term), non-fatal, degenerative neurological disorder that impairs movement and speech. Though it is most common in the over-50s, one in 20 of those diagnosed is under 40.

Juvenile Parkinson's - affecting those under 18 - is extremely rare.

Men are slightly more likely to develop Parkinson's than women, but no one knows why.


What causes it?

Characterised by muscle rigidity, tremors - commonly referred to as "the shakes" - fatigue and, in extreme cases, total loss of mobility, the primary symptoms are due to a loss of nerve cells in the substantia nigra, part of the brain producing dopamine to aid movement co-ordination.

With depletion of dopamine-producing cells, parts of the brain can't function normally.

Parkinson's symptoms appear when about 80 per cent of dopamine has been lost.

Dopamine levels continue to fall for years. Researchers believe it is caused by genetics - nine genes linked to Parkinson's have been identified - plus environmental factors.


What are the symptoms?

"They vary greatly - a third of patients don't experience tremors," says Professor Ray Chaudhuri, of the Movement Disorders Unit at King's College Hospital, London.

"Other early warnings can include difficulty in writing, performing simple manual tasks such as tying shoelaces and holding cutlery, or the dragging of a limb.

"There is a feeling of stiffness, accompanied by numbness. One almost universal symptom is a loss of sense of smell - sufferers can't smell oregano."

Slowness or difficulty in initiating movement - bradykinesia - is common, as is muscle rigidity.

Disturbed sleep, bowel problems, incontinence, memory problems and depression are common "non-motor" symptoms, all linked to depleted levels of dopamine.

"The progression of the disease is usually slow for the first 15 years, after which decline can be rapid.

"As the disease advances the bottom half of the body can freeze. It's distressing, but not usually painful," says Professor Chaudhuri.

The symptoms of Parkinson's develop gradually.

There are no specific tests to prove if someone has the condition. Patients are diagnosed on medical history and a clinical examination.

The symptoms can have other causes and tests and scans may be needed to rule these out.


Is there a cure?

"There is no cure," says Professor Chaudhuri. "But it is treatable and manageable.

In the early stages, many rely on a healthy lifestyle - diet, exercise and relaxation. Later, drugs can also be used."

A new treatment, licensed for UK use in 2006, is the Neupro patch, made by Schwarz Pharma.

The patch contains a dopamine agonist - an agent that acts directly on the dopamine receptors in the brain - called rotigotine, and delivers a continuous dose of the drug over 24 hours, so patients have to change the patch only once a day.

Medications increase the level of dopamine reaching the brain, stimulate the areas where dopamine works, and block the action of other chemicals that reduce dopamine's effect.

Surgery is also available, depending on symptoms.

Deep-brain stimulation involves implanting a wire, with four electrodes at its tip, into the thalamus, the globus pallidus or the subthalamic nucleus - all parts of the brain connected to movement and co-ordination.

The wire is connected to a small implantable pulse generator (IPG) inserted under the skin, often in the chest, like a pacemaker.

The IPG sends electrical signals to the brain to stop or reduce Parkinson's symptoms.

Lesioning is another option. An electrode is inserted into the brain, causing selective damage to certain cells in the thalamus (thalamotomy) or globus pallidus (pallidotomy).

Unlike deep-brain stimulation, this is irreversible and less common.

There have been promising developments in coaxing human stem cells - premature cells that can become any of a number of mature cells in the body under the right conditions - to form dopamine-producing brain cells in rats, but treatment in humans is still a long way off.

Read entire article here...

Researcher: Cause and Treatment for Parkinson's "In Our Sights"

Researcher: Cause and Treatment for Parkinson's "In Our Sights"

Injecting Genes Into the Brain Helps in Parkinson’s

Injecting Genes Into the Brain Helps in Parkinson’s