How do I slow down parkinson's? This question is answered, among others, by journalist Jon Palfreman, author of the book "Overtake Parkinson". In his publication, he presents the latest research of scientists related to Parkinson's disease, but also points out what helps him and other patients to slow down its progression. Check out an excerpt from his book and see how to slow down your Parkinson's.

Some people with Parkinson's seem to know how to live long and well with their condition, how to come to terms with their destiny. One such amazing person I was lucky enough to meet is former contemporary dance dancer and choreographer Pamela Quinn.

Crushing diagnosis

She has performed in public with dance groups in San Francisco and New York for 20 years. Her photos show a slender, tiny dancer making her dreams come true. One day in 1994, while reading The New York Times, Pamela noticed that the paper she was holding in her hands was gently shaking, as if due to a slight breeze.

A forty-year-old woman quickly realized that the source of this trembling was not the ajar window, but her left hand. She later admitted that this slight tremor was the first indication that she had Parkinson's disease. During the next two years, Pam's symptoms worsened and spread to the entire left arm as well as the left leg.

Tremor caused her to have problems with balance and walking. In 1996, when Pam neuroscientist Rachel Saunders-Pullman officially diagnosed Pam with Parkinson's disease, she was confronted with an identity crisis. As she later wrote in an article for Dance Magazine: "It is a shock to everyone to know that a person is seriously ill. But for a dancer, a disease that directly impairs mobility is very devastating."

Help yourself and others

Over time, however, she realized that she could use the knowledge she had acquired as a dancer to help herself and others. After all, as an expert in movement, she was better equipped than most to understand the nature of her movement disorders. She had a lot of knowledge about her own body: she knew how to get it to act, how to scold or deceive it.

"When my left hand was trembling, I learned to calm it down,shaking it vigorously. When my left leg started to crumble and was lagging behind, I practiced kicking a ball in a string net to help it move forward. If my left hand was reluctant to make the full range of motion, I shifted the purse from hand to hand to spur it into action. "Quinn might not have realized it at the time, but what she was doing - the tricks she was using - was consistent with what she was doing. what modern neuroscientists thought about the basal ganglia.

I went to see Quinn teach a dance class in Sturbridge, Massachusetts. In the huge hall there were hundreds of people suffering from parkinson's along with their guardians. While I waited for Pam to arrive, I watched the other sick. It was hard not to imagine your own future, looking at the faces and bodies of the people gathered in this room.

Some of them moved almost normally, others were not able to pass the corridor without the help of a walking frame. There were also those who bent forward, shuffling their legs, moved with small, quick steps, presenting the so-called parkinsonian gait . Some were bent to the side. In many people tremors of the limbs and a face that did not reveal emotions could be noticed. Some nodded back and forth - these were levodopa-induced dyskinesias - with bizarre, swinging movements in their limbs and torso that they could not control in any way.

First signs of illness

Although my symptoms were still only mild, I was already aware of the changes that were taking place in my way of moving. In fact, one of the earliest signs - that something was wrong (initially ignored by me) that came up a few years before I was diagnosed, was that I forgot to move my arms while walking.

"I forgot" - it's actually not a good word, because for most of my life I didn't think about this activity at all. In fact, not many people do this. My arms automatically started moving every time I walked, as a natural response to my synchronized walking activity. Right arm leans back to balance left foot in the air, then leans forward to balance left heel landing back on the ground. The same synchronization occurs between the left hand and the right leg.

But suddenly, for some reason, what had happened automatically until now required a conscious effort. Then it was getting more and more difficult for me to precisely and quickly perform the various onesphysical activities - such as taking a credit card from your wallet, slicing a steak or keeping rice on a fork, or accurately pressing icons on the touch screen.

As Pam explained to me when I called her before visiting her class, these challenges are inevitable. "Those of us who struggle with Parkinson's," she said, "are losing the luxury of being completely free to move freely or doing our daily chores automatically. We have to teach our bodies to do this."

Prepare your brain and body to fight parkinson's

"I'm one of those people who's pretty good at dealing with Parkinson's," Pam said confidently. "I've been living with this disease for 18 years." Her posture was perfect and her movements were steady and smooth. As she said, her secret is simple: years of dance training prepared her brain and body to fight Parkinson's disease.

She wanted to tell us that we, non-dancers, can use this knowledge to move better. Pam listed five basic insights that helped her cope with the disease. "Dance training combines visual cues - that is, using the eyes; auditory cues - that is, using the musical rhythm; imaging - that is, knowing how to mark the movement; increased awareness of your body - you need to feel the right body posture to maintain balance; and finally, constant exercise of conscious movement - you always tell your body what to do. "

Pam explained to us that many of her tricks are based on music. Take, for example, what I have a problem with: a confident way of walking with the correct arm movements accompanying it. Music usually has a steady pace, so it forces you to synchronize your limb movements to match the rhythm.

"When I go outside," Pam told listeners, "I take my iPod with me and play a song that matches the rhythm with which I am moving … and walk along lines on the sidewalk - using them as visual cues to help me keep my rhythm. I follow a person and imitate them. Combining visual cues with music helps me align my gait, set my arms in motion, force my legs to act and make me happy. Music is a medicine for me. "

Paradoxical Kinesia

However, I have read about some unusual exceptions in this regard, such as a phenomenon called kinesia paradoxa (paradoxical kinetic) where certain movements are performed unexpectedly. I saw a unique video by Dutch neurologist Bastiaan R. Bloem showing how a damaged human brain can function in certain specific situations.

The beginning of the video shows a seriously impaired fifty-eight-year-old man with Parkinson's who tries to walk down the corridor in vain. The man has trouble moving until the doctor puts her foot in his path. Then, instead of walking as normal, the man abruptly takes a few short, quick, unsteady steps until he finally falls over.

Later in the movie, however, we see the same patient a little later that day, sitting outside the hospital on a bicycle. The word "transformation" does not fully reflect what we see. As if by the touch of a magic wand, the man starts to ride a bicycle. It gracefully covers a distance of about 100 meters, smoothly turns its head to check that the road is clear and makes a 180-degree turn with ease, then returns to where it started, even standing up to overcome a slight incline with more power. He seems focused and shows no sign of body trembling. After getting off the bike, she cannot walk again, as before.

Bloem, who has spent most of his career researching the walking problems affecting people with Parkinson's, has spent many hours puzzling over such cases. He stated, "I really have no idea how to explain it. There is no doubt that people with Parkinson's are able to move in areas where automatic function has not been lost - this is what physiotherapy works on."

Patients and physical therapists do this, says Bloem, either by using alternative means to activate movement programs or by using alternative movement programs. From a neurological point of view, cycling can also be easier than walking. When cycling, the movements of both legs are the same, but when walking, this perfect synchronization or "time symmetry" can be lost. […]

Learning to walk again

Pam's advice was practical and convincing. Since, she said, we people with parkinson's tend to tilt our torso, we must make an effort to walk correctly and not lean forward so much that it will lead us to a fall. Parkinson's patients need to make a conscious effort to walk.

"Always feet first," says Pam. "If you move backward, feet first. If you move forward, feet first. If you want to move to the right, right leg first. If to the left, left leg first." Because we tend to shuffle our feet -said Pam, we must remember to always put our foot off the heel. "Remember: heel, toe, heel, toe, heel, toes".

Pam prepared particularly rhythmic songs - including the Beatles Girl song, a Hawaiian lullaby and Fever by Peggy Lee. Pam shouted orders and the people gathered in the room followed them. We flexed our bodies, made cat's backs, stretched our spines, opened our arms, twisted our torsos. And we smiled.

How not to freeze without moving?

Pam has provided some tips for dealing with advanced motor impairments. Many in the audience struggled with a strange but fascinating phenomenon known as "freezing". Patients with advanced Parkinson's disease - which included the man riding a bicycle in Bastiaan Bloem's experiment - can walk normally and suddenly stand still, as if their feet were stuck to the floor. They freeze like statues.

This embarrassing reaction usually occurs when you approach a small, confined space - when walking through a door, entering an elevator, crossing a busy street, or just before making a turn in another direction. Equally remarkable are the tricks to counter this strange behavior.

Neurologists know that all you need to do is chalk a line on the floor to magically activate some compensatory circuit in the person's brain, making them able to move forward and cross the line. A similar situation occurred in the case of Bloem's patient, in whose path the doctor set his foot. This behavior has eased the mental blockage: the Parkinson's patient can simply step over the foot and keep walking. But what if no one is there when you happen to freeze? Pam suggested some solutions.

"You have to shift your weight to the side," she told the assembled people. "When you freeze, you try to move forward. Your torso is tilted forward … but your feet are stuck in one place. If you shift your weight to the side, it will take the load off one foot and allow it to move forward." Pam adds: "The image of a penguin helps me. Start walking like a penguin by shifting your weight from side to side. Then try to switch to a more natural way of walking."

Pam called up another image to help avoid slouching while walking. "I think about the models. They always lean back - their legs are always in front. So when my drugs stop working and my attitude starts to change, I think to myself:model. The imagination is at work. I'm becoming that person. Thanks to this, I shift my weight back and my legs forward. "Pamela Quinn is certainly a special patient - a case of a very slowly progressive form of the disease. But we can all learn from her. deal with mobility and balance problems As Pam says, “We have to treat the mind like a muscle; you have to strengthen it and stretch it, just like the muscles of the legs and torso ". […]

How the brain controls the movements of Parkinson's sufferers

A few days after Pam's speech in Sturbridge, I spoke to Pietre Mazzoni, who headed the Motor Performance Laboratory at Columbia University Medical Center. I wanted to better understand the physiological basis of my fine motor clumsiness.

Scientists in this lab study how the brain controls limb movement in both he althy people and those suffering from degenerative diseases of the nervous system. Forty-five-year-old Mazzoni focuses in his research on the basal ganglia, comparing their functioning in he althy people and in people suffering from Parkinson's disease during their daily motor activities: from walking to lifting the hairbrush.

"The human locomotor system is extremely complex," says Mazzoni. "Imagine the simple act of reaching for an object." To achieve this goal, he explains, some muscles have to contract and others have to stretch. You have to make a decision about how fast and how far you will move, and you must open your hand and grab the object with sufficient force. Each part of this action must be performed in a timely manner.

But as Mazzoni says, it's all even more complicated. "It all depends on the context. It's not enough just to properly judge speed and distance. You also have to decide with what stiffness to move your hand. It depends on what goal you want to achieve. or a cup of hot coffee filled to the brim, then your arm needs to be stiffer. But if you want to reach for a bouncing ball, which requires you to change directions quickly, your hand must be loose, not stiff. "

The ability to perform such complex sequences of movements without thinking (or at least without consciously thinking) is possible thanks to the basal ganglia. Likewise the testiclesbasics allow us to do several activities at the same time, for example, they allow us to sit and eat spaghetti, beating the beat of the music with our feet and listening to someone from the family tell us about their day.

This area of ​​the brain, however, has a downside: the basal ganglia is dependent on dopamine. Without it, the signals passing through these nuclei become distorted and the wrong information reaches the cortex. This is one of the reasons people with Parkinson's find it difficult to lift small objects and move smoothly: their movements are too shaky, too weak, too slow, too stiff, too wobbly, too slender and out of sync. These are symptoms that the brain is in conflict with itself.

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Rehabilitation and exercise in Parkinson's disease

Parkinson resembles … traveling around England

Having Parkinson's is a bit like going on vacation to another country when you have to travel on the "wrong" side of the road. Driving a car is one of those activities that is largely "located" in the basal ganglia.

The basal testes of an American driver perpetuated right-hand driving behavior on the roads thanks to thousands of hours behind the wheel on American roads. When the same driver tries to drive in England, these learned habits disturb him.

To deal with this, the American motorist must activate a conscious, purposeful, mindful, and targeted area of ​​his brain - the cerebral cortex - to suppress the activity of the basal ganglia. Driving a car will then be difficult, partly because the conscious brain is now fully responsible for the task, but mainly because it has to balance signals sent by the basal ganglia, which are inappropriate in the current situation.

Depleted of adequate amounts of dopamine, the basal ganglia circuits in people with Parkinson's disease do not behave as they should. Damaged signals are sent to other areas of the brain, such as the thalamus (which transmits sensory and motor data to the cerebral cortex) or the cerebral cortex itself (which is responsible for many higher functions such as thinking, speech, and awareness).

These inappropriate signals disrupt communication between the brain and muscles, resulting in a series of classic symptoms: tremors, slowness, weakness, stiffness, hunched posture, tendency to walk without moving your arms, "shrinking" handwriting, lowering voice and so on go on.

Like an American driving a car in England,a person with parkinson's must use conscious, mindful and deliberate goal-directed thoughts to suppress the basal ganglia and force the body to maintain a straight posture, move his arms rhythmically while walking, put his feet on the floor, starting with the heels, writing clearly, saying yes as loud as possible.

The English termfestinating stepscomes from the Latin wordfestinarewhich means "to hurry up, to rush". In French, this way of walking is often referred to asmarche à petits pas , meaning "walking in small steps."

The sub titles are from the editorial office.

Worth knowing

The text comes from the book "Overtake parkinson" by Jon Palfreman (Jagiellonian University Publishing House).The author, following in the footsteps of internationally renowned scientists, presents the history of research - from the first clinical descriptions to the latest discoveries in the field of neuroscience that give him hope for a cure.

This is a book about the race between disease and medicine, written from the unique perspective of a reporter and a patient. The author combines carefully collected facts with touching, personal stories of other patients. Their struggle with the disease can tell more about it than many studies.

Jon Palfremanis a retired journalism lecturer at the University of Oregon and author of over 40 documentaries for the BBC and PBS, and co-author of two books on science and medicine. Honored with incl. Emmy and Peabody Awards. In 2011, he was diagnosed with Parkinson's disease.

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