Education

5 TED talks for people with Parkinson’s

TED Talks – an online series where expert speakers share their knowledge – has covered a wide range of Parkinson’s-related topics. We’ve picked some of our favourites:


1. Emma Lawton: Is confidence in my DNA?
Four years ago, creative director Emma Lawton was diagnosed with young-onset Parkinson’s at the age of 29. In this talk, Emma takes a look at how her own upbringing has shaped her confidence when dealing with her condition.

2. John McPhee: Walk smarter – living with Parkinson’s
John McPhee discusses his Parkinson’s journey, from his life changing diagnosis to his newly found passions. He has never let Parkinson’s take control of his life, and refuses to stop raising awareness about the condition.

3. Eleftheria K. Pissadaki: A mathematical model for predicting Parkinson’s
Research neurologist Eleftheria K. Pissadaki has dedicated her working life to brain disease, neurodegeneration and the etiopathology of Parkinson’s. In this talk, she assesses neurological electrical problems and their connection to Parkinson’s.

4. Erin Smith: Smile to see if you have Parkinson’s disease.
Erin Smith is a high school senior and founder of medical app FacePrint – a tool that uses facial recognition to detect early stages of Parkinson’s. Erin talks frankly about the inspirations behind her work – and how she got to where she is today.

5. David Denton – Compulsive Creativity and Parkinson’s disease
When David Denton was diagnosed with Parkinson’s he found himself with an urge for creative expression. He explains these impulses and shares some of the work that he has created since developing the condition.

 

Article from Parkinson’s Life.

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How to Travel (with greater ease) with Parkinson’s

For the average person, traveling is a minor frustration. Security lines, delays, crowded airports and cramped and long lines at snack shops and restaurants are par for the course. However, if you’re living with Parkinson’s, those things aren’t just frustrations, they can be so troublesome and aggravating to deal with that you choose to stay at home.

That’s why we decided to reach out to our Davis Phinney Foundation Ambassadors, many of whom are avid travelers, to get their best tips for traveling with Parkinson’s. Armed with this information, when you get out and about this summer, we hope you’ll do so with greater ease.

Medication Management

Managing medications topped nearly everyone’s list. Here are a few suggestions our expert travelers offered.

Bring more than you need. (And always know how to get more in a pinch.) When you’re headed out for a long trip, it’s easy to miscalculate; so, bring extra.

Put your medications in more than one location. This way if something happens with your luggage or you forget a backpack somewhere, you’re covered. Ideally, keep them in your carry-on bags or on you if possible.

Set timers or alarms on your phone so you’re always prompted to take them, even if you’re caught up in another activity.

If you’re going to be in multiple time zones, plan a consistent schedule for taking your medication. Your body doesn’t care that you started in Boston and ended up in LA – it wants Sinemet every three hours.

Sometimes travel days will stretch on and on, far beyond a typical day at home. If your awake time demands it, take an extra dose of something and make sure you account for those extra doses when packing your meds.

If you’re traveling with a companion or care partner, have them carry an extra dose of your medications.

Always carry a complete list of medications with you. And be ready to show them if asked.

Make sure at least one set of your prescriptions are in Rx bottles with labels. If someone in authority questions the contents of your pill bags or bottles and you can’t prove what the medication is, they can take them if they must.

If you have any liquid medications (e.g., the gel form of carbidopa/levodopa for the Duopa pump that’s approved in the US), you’ll need a letter from your doctor. Although you’re allowed to travel with medications greater than the three-ounce limit specified by the Transportation Safety Administration, those medications will be subject to additional scrutiny, and you’ll need the documentation from your doctor as part of that process. Be sure to keep these medications with you in your carry on. Do not put them in your checked luggage.

Planning

Consider traveling by train rather than getting trapped in those tiny airplane seats. Trains have plenty of legroom, there’s no TSA and you get an amazing view.

When buying plane, train or bus tickets, be sure to allow enough time between legs if you have to have a layover so you have the time you need—and more—to get to your next gate.

Travel when you’re at your best. For example, if you feel best in the morning because that’s when your medications offer you the best relief from symptoms, consider flying or traveling at that time.

Make a list of everything you could possibly need for your trip and save it. You might have different lists for bike rides, road trips, weekend getaways, international trips, work trips and long-term travel. Update your lists on your computer each time you travel so they’re ready to print out when you prepare for your next adventure.

Check the weather! If you need to pack a few days before you leave, and you pack for the current weather report, you could get stuck with the wrong clothes. Be sure to check again the day before you leave since weather reports change quickly, and you may need to adjust what you pack. Many people living with Parkinson’s don’t do that well in the heat or in the cold. Not having the correct clothing can be a real problem.

Put all of your paperwork in an easy to access location. This might be in the top pocket or your backpack or maybe the pocket of your pants or jacket.

Consider including in your paperwork an emergency contact list with information about your neurologist, primary care physician and other healthcare providers as well as the names and contact information of family members or other people who should be contacted in case of emergency.

If you tend to run late, avoid stress by getting to the airport extra early. Everything takes longer than you expect, so think through the steps you’ll need to take for airport security, airline boarding, baggage handling, lines at the bathroom, snack shopping, etc.

If you’re going to be out of town for a while, take a quick picture of where you parked or make a note in your phone in case you forget exactly where you left your car when you return.

Read up on flying with a disability so you know what’s available to you.

Getting Around

Carry a cane or a walking stick, even if you think you don’t need it. Stress often makes Parkinson’s symptoms worse, and travel is stressful. Even if you don’t need it, it’s a warning sign to others to not crowd you or run over you in the terminal or on the street.

Arrange for a wheelchair to get through the airport. This can help a lot in crowds or in unfamiliar places.

If you need to use a handicap bathroom, use them when you see them.

Take advantage of TSA Pre✓® and Clear.

If you need help, ask for it. If help is offered, take it. This includes having someone carry your bags, taking advantage of extra time allowed for boarding, having someone get food and bringing it to you, etc.

Take a disposable plastic grocery bag with you so you can open it up and sit on it on the plane. When you want to get out of your chair, the plastic reduces friction which makes it much easier to get out of your chair.

Practice getting in and out of your airplane seat (or any seat) before you go. One of our Ambassadors Amy Carlson made this great video to show you how to do it with greater ease.

Food & Drink

Have your food items at the ready since you need to separate them when going through security.

Fill your water bottle after security and between flights.

Bring more snacks than you think you’ll need on the plane in case you get stuck, delayed and re-routed and suddenly your two-hour flight turns into a six hour one.

Communication

Remember that communication is on the person with Parkinson’s. As Kathleen Kiddo says, “Nobody can read our cue cards so it’s our job to let them know what’s up.”

Consider wearing or traveling with a card that says something like, “I’ve got Parkinson’s and I need a bit more time and space. Thank you.

Some people with Parkinson’s carry this card.

I'm not intoxicated, I have Parkinson's

Or this card from the Parkinson’s Foundation.

Sleep and Rest

Slow down and don’t overschedule your days. Choose the activities that are most important to you rather than trying to rush through to hit every possible spot. You will have the most enjoyable time if you learn how to conserve energy so that you have it when it matters most.

Try to time your travel so that you have plenty of time to rest once you arrive at your destination. For example, if you’re traveling to Europe, consider going a day early so you have time to get your body clock adjusted.

If you travel somewhere that has a significant time change, take a one to two-hour nap when you arrive. Go out for dinner and then go to bed at what would be a normal time for the part of the world you’re in. Immediately try to assimilate into the routine of your new environment.

Bring a sleep mask and earplugs. Many people with Parkinson’s have difficulty sleeping. Keeping a sleep mask and a pair of soft foam earplugs nearby can help you get some rest when you’re traveling. You might also consider bringing an inflatable neck pillow for additional comfort.

Clothes

Pack light and feel secure knowing that, unless you’re traveling to a remote area, you’ll be able to pick up anything you need once you reach your destination.

Travel in comfortable clothing that’s easy to get on and off in bathrooms. Slip-on shoes or sandals, shoes that don’t require you to lean over to take them off, are great for airports. And keep an extra pair of socks in your carry on for cold planes.

Wear knee-high compression socks for road trips and air travel. They keep the blood flowing and reduce swelling.

Bring a change of clothes in your carry on bag just in case.

Exercise

Consider bringing a jump rope. It travels well and it offers a great workout. It’s an aerobic and motor challenge, a great exercise for travel.

Whether in a car or on a plane or train, take time to get up and stretch every 30-45 minutes.

As much as possible, try to continue to exercise and do the things that are part of your daily routine for living well while you’re on the road. It can be a challenge when you’re in a different place and don’t have access to the same routine or equipment, but veering too far off schedule can create problems both when you’re traveling and when you arrive home. Adjust as needed, but continue to do the activities that make you feel well.

Miscellaneous

Use a label maker to put your name and cell number on loose objects, like canes.

If you don’t have a handicap placard, get one.

While you’re exploring new areas, consider checking out the local Parkinson’s offerings.  Does the place you’re visiting offer something in the way of support for people living with Parkinson’s that you don’t have where you live? If not, do they need your skills? Could you bring something to share with the community you’re visiting?

Don’t be afraid of letting your travel companion(s) know that you’re too tired to do certain activities and you just need time to rest.

If you have DBS, bring the Medtronic device wallet card (or whatever company made yours). You may be asked for it. It’s best to not try and explain DBS to security people.  Just say you have a “medical device” or even just say you have a pacemaker as that’s something they hear all the time. Remember, you can’t go through the old style security check machines or let them use wands to check you. Be prepared for a pat down.

Pay for luxuries and conveniences while traveling if you can. They’re designed to make your life easier and if you ever need that, it’s when you’re traveling.

If at all possible, travel with others who get you so well that they know when you need help and when to back off. They know when you need to rest and when you’re ready to go. And they, more than anything, can gracefully manage the unpredictability of Parkinson’s and not let it get in the way of a fabulous trip.

Maintain a sense of humor. Travel is difficult even under the easiest of circumstances. When something goes wrong, and it almost always does, the way you handle it will have a big impact on your physical and emotional well-being. Eventually, you’ll get where you need to go; so, in the meantime, have a good laugh about it.

Finally, while there’s a lot that happens when you travel that you can’t control, you can control your experience. Don’t let Parkinson’s stop you from traveling. As Jill Ater says, “Most people in the word are incredibly understanding and patient. If you like to travel, then it’s part of your living fully with Parkinson’s.”

 

Article from Davis Phinney Foundation.

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WPA on The Morning Blend

Jeremy Otte, our director of outreach & education, and board member Ron Mohorek were on the The Morning Blend on TMJ4 this morning talking about Parkinson’s and our upcoming Symposium!

Thanks to Amada Senior Care for including us!

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8 Early Parkinson’s Disease Symptoms That Are Too Easy to Miss

This movement disorder is more treatable when caught early, but Parkinson’s disease symptoms can appear quite differently from one person to another. Talk to your doctor if you’re worried about any of these signs.

Changed handwriting

If your handwriting starts to go from big and loopy to small and cramped, this could be one of the earliest Parkinson’s disease symptoms. “Teachers with Parkinson’s will notice students complaining that they can’t read their handwriting when they write on the blackboard,” says Deborah Hall, MD, a neurologist at Rush University Medical Center in Chicago. Look for letters getting smaller and words crowding together. Many patients have slower movement and trouble with repetitive tasks, like handwriting.

Reduced sense of smell

If you’re having trouble smelling pungent foods or no longer pick up your favorite scents, see a doctor. It’s not the most common symptom of Parkinson’s, but Dr. Hall says patients who suffer a loss of smell report it being the earliest sign they experience. The link between reduced sense of smell and Parkinson’s isn’t clear, but one theory is that the clumps of the protein alpha-synuclein, found in the brains of all Parkinson’s patients, may form in the part of the brain responsible for smell before migrating to other areas and affecting motor function.

Trouble sleeping

If you were once a peaceful sleeper, but now toss and turn, flail your limbs, or even fall out of bed, those sleep problems could be Parkinson’s disease symptoms. It’s normal to have an occasional restless night, but talk to your doctor if you or your partner notices extra movement when you’re in a deep sleep, or if you start sleep-talking. More research is needed to discover why disturbed sleep and Parkinson’s are related, but one theory is that the degeneration of specific regions of the brain stem that can cause disordered sleeping may play a role in other Parkinson’s disease symptoms.

Constipation

If you’re not moving your bowels every day, or are increasingly straining, this can be an early sign of Parkinson’s. The disease alters the body’s autonomic nervous system, which controls processes like digestion and bowel function. Constipation on its own isn’t unusual, but if you’re experiencing other symptoms like difficulty sleeping and trouble moving or walking, talk to your doctor.

Depression

Much has been made of the link between the late comedian Robin Williams’ Parkinson’s diagnosis and ongoing battle with depression. Sometimes patients can develop depression after learning they have Parkinson’s, but it’s also common for people to be depressed years before they start to exhibit physical symptoms, says Michele Tagliati, MD, director of the Movement Disorders Program at Cedars-Sinai Medical Center in California. “Parkinson’s is characterized as a movement disorder because of a lack of dopamine in the brain, but there are also low levels of other neurotransmitters like serotonin, which are intimately related to depression,” he says. Parkinson’s patients who are depressed tend to feel apathetic and generally disinterested in things they used to enjoy, compared to feeling intensely sad or helpless, as is common in primary depression. “They lose pleasure in the simple things of life, like waking up in the morning and buying the paper,” says Dr. Tagliati. Treatment for depression includes counseling, antidepressant medication, and in the most extreme cases, electric shock therapy.

Tremors or shaking when relaxed

Shaking can be normal after lots of exercise or if you’re anxious, or as a side effect of some medications. But a slight shake in your finger, thumb, hand, chin, lip, or limbs when your body is at rest and your muscles are relaxed could signal Parkinson’s disease symptoms, according to the National Parkinson Foundation. About 70 percent of people with the disease experience a resting tremor, and it can become more noticeable during stress or excitement. These are the most common symptom and often tip people off to the disease, but when Parkinson’s patients think back they realize they experienced loss of smell, disturbed sleep, or anxiety before the tremors began.

Stiffness and slowed movements

Watch for an abnormal stiffness in your joints along with muscle weakness that doesn’t go away and makes everyday tasks like walking, teeth brushing, buttoning shirts, or cutting food difficult. If you no longer swing your arms when walking, your feet feel “stuck to the floor” (causing you to hesitate before taking a step), or people comment that you look stiff when you haven’t been injured, the National Parkinson Foundation suggests seeing a doctor.

Softer voice, or masked face

Doctors say that a softer voice or masked, expressionless face is a common sign of the disease. Some patients with Parkinson’s disease symptoms may also talk softer without noticing or have excessively fast speech or rapid stammering. Parkinson’s causes disruption of movement, including facial muscles.

Article from Reader’s Digest.

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How to get up from the floor MacGyver Style!

Watch how occupational therapist Rhonda promotes creative “out of the box” thinking to inspire new ideas for getting up from the floor after a fall in the home!

 

Video from HomeAbility.com.

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Storming the Hill

By: Samantha Barbian

We came. We saw. We conquered. From March 19-21st my dad, Craig, and I attended the Parkinson’s Policy Forum in Washington DC. We were joined by approximately 300 other Parkinson’s advocates from around the country. The feeling of being one community and truly supporting each other was undeniable. I found it interesting hearing all the different stories how Parkinson’s has affected each persons life. No two stories in the room were exactly alike just like the disease does not effect each person’s body and mind the same.

One speaker who was so inspirational that I will never forget was New Jersey Senator Cory Booker. He told stories about his life growing up and the stories his father would tell. Near the end of his speech he revealed that his father had Parkinson’s. This quote from Senator Booker hit home with many of us:

“My dad showed me what courage was about, as he struggled with this foe of Parkinson’s, and more than that, he showed me what the power of the community is about. About people who were there for him, who counseled him, who laughed with him. About folks who understood the complexities of the challenges.”

Parkinson’s patients need that community to help them keep pushing forward and to never give up.

If you were unable to attend the Parkinson’s Policy Forum there are a few ways you can still get involved. One way is to check out the website www.parkinsonsforum.org for all the information that was shared at the conference. Another way that you can get involved is to contact your legislators and ask them to fund the National Neurological Surveillance System. This program is a database for all neurological diseases to keep track of the occurrences in our society. We are also looking for continued support of Parkinson’s research done on veterans who served in Vietnam by the Department of Defense.

If you would like more information about the forum, please contact me at [email protected].

Samantha with New Jersey Senator Cory Booker

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New smell test could aid early detection of Alzheimer’s and Parkinson’s

Nisha Pradhan was seven when she began to suspect she was missing out on something. Her sister seemed to have an uncanny knack for predicting what their mother was making for dinner. Pradhan, meanwhile, never had a clue.

“I would just stare at her,” Pradhan says. “She’s younger than me—how does she know more than I do?”

Now 21, Pradhan knows she has a limited ability to detect odor—including the smell of dinner cooking. Her situation is not unique: The sense of smell is often taken for granted, until it malfunctions.

As a patient in a clinical trial being conducted at Rockefeller University, Pradhan is helping scientists develop new smell tests, which promise to help improve diagnosis because they can be used reliably for anyone, anywhere. Because smell disorders can be linked to a variety of health conditions—interfering with appetite, as well as social interaction and sometimes leading to isolation, anxiety, and depression.

“People have their vision and hearing tested throughout their lives, but smell testing is exceedingly rare,” says neuroscientist Leslie Vosshall.

The new tests, developed by Vosshall along with Julien Hsieh, a Rockefeller clinical scholar, and their colleagues could even aid the early detection of neurological disorders that have been linked to problems with olfaction.

An underappreciated skill

People suffer from smell loss for various reasons—a head trauma or sinus infection, for example, or even a common cold—and the cause can be as hard to pinpoint as the condition itself. In Pradhan’s case, she believes she lost much of her sense of smell as a young child, although she’s not sure how. She brought the issue up with her pediatrician, but never received any testing or guidance.

Both the medical community and the people affected by smell loss can be prone to overlook it. “Olfies,” says Pradhan, referring to people with a normal sense of smell, “think not having a sense of smell just affects our ability to detect gas leaks, smoke, and bad body odor. But it deprives us of so much more, including emotions and memories that are so intimate and integral to the human experience.”

A handful of tests already exist for diagnosing people like her. One problem with these tests is that they rely on a patient’s ability to detect and identify single types of odor molecules, such as rose-scented phenylethyl alcohol. However, the ability to detect odors and to recognize them can vary greatly between people. So, someone with an otherwise normal sense of smell may not be able to detect the rose molecule. Meanwhile, another person who can smell roses but is from an area where these flowers are scarce may struggle to put a name to the scent. In either case, there is the potential for misdiagnosis, particularly when testing across different populations and countries.

The problem of smell

Hsieh and colleagues set out to eliminate these potential biases with the help of “white smells,” made by mixing many odors together to produce something unfamiliar. Just as a combination of wavelengths of light produces white light, and many frequencies of sound make up white noise, the team generated white smells from assortments of 30 different odor molecules. Their two new tests ask patients to distinguish white smells with overlapping ingredients and to detect white smells at increasingly lower concentrations.

If a person is unable to detect a single component of the test scent, this has little effect on the outcome, and test takers don’t need to identify the odor at all. “We’re really excited about these new tests,” says Vosshall, who is Robin Chemers Neustein Professor and a Howard Hughes Medical Institute investigator. “They focus on the problem of smell itself, because they don’t force people to match smells to words.”

Clinical trials conducted at The Rockefeller University Hospital and Taichung Veterans General Hospital in Taiwan showed that the new tests detected smell loss more reliably than conventional options. The results, published in Proceedings of the National Academy of Sciences, open up the possibility of a new means to detect smell loss worldwide. It could be used for detection of Alzheimer’s and Parkinson’s diseases, says Hsieh, now a resident at the Geneva University Hospitals in Switzerland.

“The goal is to use changes in the sense of smell, along with other biomarkers, to identify underlying causes of these neurological disorders very early, and so potentially improve treatment,” he says.

 

Article from The Rockefeller University.

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What is Tremor?

Tremor is an involuntary, rhythmic muscle contraction leading to shaking movements in one or more parts of the body. It is a common movement disorder that most often affects the hands but can also occur in the arms, head, vocal cords, torso, and legs. Tremor may be intermittent (occurring at separate times, with breaks) or constant. It can occur sporadically (on its own) or happen as a result of another disorder.

Tremor is most common among middle-aged and older adults, although it can occur at any age. The disorder generally affects men and women equally. Tremor is not life threatening. However, it can be embarrassing and even disabling, making it difficult or even impossible to perform work and daily life tasks.

WHAT CAUSES TREMOR?

Generally, tremor is caused by a problem in the deep parts of the brain that control movements. Most types of tremor have no known cause, although there are some forms that appear to be inherited and run in families.

Tremor can occur on its own or be a symptom associated with a number of neurological disorders, including:

  • multiple sclerosis
  • stroke
  • traumatic brain injury
  • neurodegenerative diseases that affect parts of the brain (e.g., Parkinson’s disease).

Some other known causes can include:

  • the use of certain medicines (particular asthma medication, amphetamines, caffeine, corticosteroids, and drugs used for certain psychiatric and neurological disorders)
  • alcohol abuse or withdrawal
  • mercury poisoning
  • overactive thyroid
  • liver or kidney failure
  • anxiety or panic.

HOW IS TREMOR CLASSIFIED

Tremor can be classified into two main categories:

Resting tremor occurs when the muscle is relaxed, such as when the hands are resting on the lap. With this disorder, a person’s hands, arms, or legs may shake even when they are at rest. Often, the tremor only affects the hand or fingers. This type of tremor is often seen in people with Parkinson’s disease and is called a “pillrolling” tremor because the circular finger and hand movements resemble rolling of small objects or pills in the hand.

Action tremor occurs with the voluntary movement of a muscle. Most types of tremor are considered action tremor. There are several sub-classifications of action tremor, many of which overlap.

  • Postural tremor occurs when a person maintains a position against gravity, such as holding the arms outstretched.
  • Kinetic tremor is associated with any voluntary movement, such as moving the wrists up and down or closing and opening the eyes.
  • Intention tremor is produced with purposeful movement toward a target, such as lifting a finger to touch the nose. Typically the tremor will become worse as an individual gets closer to their target.
  • Task-specific tremor only appears when performing highly-skilled, goal-oriented tasks such as handwriting or speaking.
  • Isometric tremor occurs during a voluntary muscle contraction that is not accompanied by any movement such as holding a heavy book or a dumbbell in the same position.

WHAT ARE THE DIFFERENT CATEGORIES OF TREMOR?

Tremor is most commonly classified by its appearance and cause or origin. There are more than 20 types of tremor. Some of the most common forms of tremor include:

Essential tremor

Essential tremor (previously also called benign essential tremor or familial tremor) is one of the most common movement disorders. The exact cause of essential tremor is unknown. For some people this tremor is mild and remains stable for many years. The tremor usually appears on both sides of the body, but is often noticed more in the dominant hand because it is an action tremor.

The key feature of essential tremor is a tremor in both hands and arms, which is present during action and when standing still. Additional symptoms may include head tremor (e.g., a “yes” or “no” motion) without abnormal posturing of the head and a shaking or quivering sound to the voice if the tremor affects the voice box. The action tremor in both hands in essential tremor can lead to problems with writing, drawing, drinking from a cup, or using tools or a computer.

Tremor frequency (how “fast” the tremor shakes) may decrease as the person ages, but the severity may increase, affecting the person’s ability to perform certain tasks or activities of daily living. Heightened emotion, stress, fever, physical exhaustion, or low blood sugar may trigger tremor and/or increase its severity. Though the tremor can start at any age, it most often appears for the first time during adolescence or in middle age (between ages 40 and 50). Small amounts of alcohol may help decrease essential tremor, but the mechanism behind this is unknown.

About 50 percent of the cases of essential tremor are thought to be caused by a genetic risk factor (referred to as familial tremor). Children of a parent who has familial tremor have greater risk of inheriting the condition. Familial forms of essential tremor often appear early in life.

For many years essential tremor was not associated with any known disease. However, some scientists think essential tremor is accompanied by a mild degeneration of certain areas of the brain that control movement. This is an ongoing debate in the research field.

Dystonic tremor

Dystonic tremor occurs in people who are affected by dystonia—a movement disorder where incorrect messages from the brain cause muscles to be overactive, resulting in abnormal postures or sustained, unwanted movements. Dystonic tremor usually appears in young or middle-aged adults and can affect any muscle in the body. Symptoms may sometimes be relieved by complete relaxation.

Although some of the symptoms are similar, dystonic tremor differs from essential tremor in some ways. The dystonic tremor:

  • is associated with abnormal body postures due to forceful muscle spasms or cramps
  • can affect the same parts of the body as essential tremor, but also—and more often than essential tremor—the head, without any other movement in the hands or arms
  • can also mimic resting tremor, such as the one seen in Parkinson’s disease.
  • Also, the severity of dystonic tremor may be reduced by touching the affected body part or muscle, and tremor movements are “jerky” or irregular instead of rhythmic.

Cerebellar tremor

Cerebellar tremor is typically a slow, high-amplitude (easily visible) tremor of the extremities (e.g., arm, leg) that occurs at the end of a purposeful movement such as trying to press a button. It is caused by damage to the cerebellum and its pathways to other brain regions resulting from a stroke or tumor. Damage also may be caused by disease such as multiple sclerosis or an inherited degenerative disorder such as ataxia (in which people lose muscle control in the arms and legs) and Fragile X syndrome (a disorder marked by a range of intellectual and developmental problems). It can also result from chronic damage to the cerebellum due to alcoholism.

Psychogenic tremor

Psychogenic tremor (also called functional tremor) can appear as any form of tremor. It symptoms may vary but often start abruptly and may affect all body parts. The tremor increases in times of stress and decreases or disappears when distracted. Many individuals with psychogenic tremor have an underlying psychiatric disorder such as depression or post-traumatic stress disorder (PTSD).

Physiologic tremor

Physiologic tremor occurs in all healthy individuals. It is rarely visible to the eye and typically involves a fine shaking of both of the hands and also the fingers. It is not considered a disease but is a normal human phenomenon that is the result of physical properties in the body (for example, rhythmical activities such as heart beat and muscle activation).

Enhanced physiologic tremor

Enhanced physiological tremor is a more noticeable case of physiologic tremor that can be easily seen. It is generally not caused by a neurological disease but by reaction to certain drugs, alcohol withdrawal, or medical conditions including an overactive thyroid and hypoglycemia. It is usually reversible once the cause is corrected.

Parkinsonian tremor

Parkinsonian tremor is a common symptom of Parkinson’s disease, although not all people with Parkinson’s disease have tremor. Generally, symptoms include shaking in one or both hands at rest. It may also affect the chin, lips, face, and legs. The tremor may initially appear in only one limb or on just one side of the body. As the disease progresses, it may spread to both sides of the body. The tremor is often made worse by stress or strong emotions. More than 25 percent of people with Parkinson’s disease also have an associated action tremor.

Orthostatic tremor

Orthostatic tremor is a rare disorder characterized by rapid muscle contractions in the legs that occur when standing. People typically experience feelings of unsteadiness or imbalance, causing them to immediately attempt to sit or walk. Because the tremor has such a high frequency (very fast shaking) it may not visible to the naked eye but can be felt by touching the thighs or calves or can be detected by a doctor examining the muscles with a stethoscope. In some cases the tremor can become more severe over time. The cause of orthostatic tremor is unknown.

HOW IS TREMOR DIAGNOSED

Tremor is diagnosed based on a physical and neurological examination and an individual’s medical history. During the physical evaluation, a doctor will assess the tremor based on:

  • whether the tremor occurs when the muscles are at rest or in action
  • the location of the tremor on the body (and if it occurs on one or both sides of the body)
  • the appearance of the tremor (tremor frequency and amplitude).

The doctor will also check other neurological findings such as impaired balance, speech abnormalities, or increased muscle stiffness. Blood or urine tests can rule out metabolic causes such as thyroid malfunction and certain medications that can cause tremor. These tests may also help to identify contributing causes such as drug interactions, chronic alcoholism, or other conditions or diseases. Diagnostic imaging may help determine if the tremor is the result of damage in the brain.

Additional tests may be administered to determine functional limitations such as difficulty with handwriting or the ability to hold a fork or cup. Individuals may be asked to perform a series of tasks or exercises such as placing a finger on the tip of their nose or drawing a spiral.

The doctor may order an electromyogram to diagnose muscle or nerve problems. This test measures involuntary muscle activity and muscle response to nerve stimulation.

HOW IS TREMOR TREATED?

Although there is no cure for most forms of tremor, treatment options are available to help manage symptoms. In some cases, a person’s symptoms may be mild enough that they do not require treatment.

Finding an appropriate treatment depends on an accurate diagnosis of the cause. Tremor caused by underlying health problems can sometimes be improved or eliminated entirely with treatment. For example, tremor due to thyroid hyperactivity will improve or even resolve (return to the normal state) with treatment of thyroid malfunction. Also, if tremor is caused by medication, discontinuing the tremor-causing drug may reduce or eliminate this tremor.

If there is no underlying cause for tremor that can be modified, available treatment options include:

MEDICATION

Beta-blocking drugs such as propranolol are normally used to treat high blood pressure but they also help treat essential tremor. Propranolol can also be used in some people with other types of action tremor. Other beta-blockers that may be used include atenolol, metoprolol, nadolol, and sotalol.

Anti-seizure medications such as primidone can be effective in people with essential tremor who do not respond to beta-blockers. Other medications that may be prescribed include gabapentin and topiramate. However, it is important to note that some anti-seizure medications can cause tremor.

Tranquilizers (also known as benzodiazepines) such as alprazolam and clonazepam may temporarily help some people with tremor. However, their use is limited due to unwanted side effects that include sleepiness, poor concentration, and poor coordination. This can affect the ability of people to perform daily activities such as driving, school, and work. Also, when taken regularly, tranquilizers can cause physical dependence and when stopped abruptly can cause several withdrawal symptoms.

Parkinson’s disease medications (levodopa, carbidopa) are used to treat tremor associated with Parkinson’s disease.

Botulinum toxin injections can treat almost all types of tremor. It is especially useful for head tremor, which generally does not respond to medications. Botulinum toxin is widely used to control dystonic tremor. Although botulinum toxin injections can improve tremor for roughly three months at a time, they can also cause muscle weakness. While this treatment is effective and usually well tolerated for head tremor, botulinum toxin treatment in the hands can cause weakness in the fingers. It can cause a hoarse voice and difficulty swallowing when used to treat voice tremor.

FOCUSED ULTRASOUND

A new treatment for essential tremor uses magnetic resonance images to deliver focused ultrasound to create a lesion in tiny areas of the brain’s thalamus thought to be responsible for causing the tremors. The treatment is approved only for those individuals with essential tremor who do not respond well to anticonvulsant or beta-blocking drugs.

Surgery

When people do not respond to drug therapies or have a severe tremor that significantly impacts their daily life, a doctor may recommend surgical interventions such as deep brain stimulation (DBS) or very rarely, thalamotomy. While DBS is usually well tolerated, the most common side effects of tremor surgery include dysarthria (trouble speaking) and balance problems.

Deep brain stimulation (DBS) is the most common form of surgical treatment of tremor. This method is preferred because it is effective, has low risk, and treats a broader range of symptoms than thalamotomy. The treatment uses surgically implanted electrodes to send high-frequency electrical signals to the thalamus, the deep structure of the brain that coordinates and controls some involuntary movements. A small pulse generating device placed under the skin in the upper chest (similar to a pacemaker) sends electrical stimuli to the brain and temporarily disables the tremor. DBS is currently used to treat parkinsonian tremor, essential tremor, and dystonia.

Thalamotomy is a surgical procedure that involves the precise, permanent destruction of a tiny area in the thalamus. Currently, surgery is replaced by radiofrequency ablation to treat severe tremor when deep brain surgery is contraindicated—meaning it is unwise as a treatment option or has undesirable side effects. Radiofrequency ablation uses a radio wave to generate an electric current that heats up a nerve and disrupts its signaling ability for typically six or more months. It is usually performed on only one side of the brain to improve tremor on the opposite side of the body. Surgery on both sides is not recommended as it can cause problems with speech.

LIFESTYLE CHANGES

Physical therapy may help to control tremor. A physical therapist can help people improve their muscle control, functioning, and strength through coordination, balancing, and other exercises. Some therapists recommend the use of weights, splints, other adaptive equipment, and special plates and utensils for eating.

Eliminating or reducing tremor-inducing substances such as caffeine and other medication (such as stimulants) can help improve tremor. Though small amounts of alcohol can improve tremor for some people, tremor can become worse once the effects of the alcohol wear off.

What is the prognosis?

Tremor is not considered a life-threating condition. Although many cases of tremor are mild, tremor can be very disabling for other people. It can be difficult for individuals with tremor to perform normal daily activities such as working, bathing, dressing, and eating. Tremor can also cause “social disability.” People may limit their physical activity, travel, and social engagements to avoid embarrassment or other consequences.

The symptoms of essential tremor usually worsen with age. Additionally, there is some evidence that people with essential tremor are more likely than average to develop other neurodegenerative conditions such as Parkinson’s disease or Alzheimer’s disease, especially in individuals whose tremor first appears after age 65.

Unlike essential tremor, the symptoms of physiologic and drug-induced tremor do not generally worsen over time and can often be improved or eliminated once the underlying causes are treated.

WHAT RESEARCH IS BEING DONE?

The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. The NINDS is a component of the National Institutes of Health (NIH), the leading supporter of biomedical research in the world.

Researchers are working to better understand the underlying brain functions that cause tremor, identify the genetic factors that make individuals more susceptible to the disorder, and develop new and better treatment options.

Brain Functioning

It can be difficult to distinguish between movement disorders such as Parkinson’s disease and essential tremor. These debilitating movement disorders have different prognoses and can respond very differently to available therapies. NINDS researchers are working to identify structural and functional changes in the brain using non-invasive neuroimaging techniques to develop sensitive and specific markers for each of these diseases and then track how they change as each disease progresses.

Other researchers are using functional magnetic resonance imaging technology to better understand normal and diseased brain circuit functions and associated motor behaviors. Scientists hope to design therapies that can restore normal brain circuit function in diseases such as Parkinson’s disease and tremor.

Genetics

Research has shown that essential tremor may have a strong genetic component affecting multiple generations of families. NINDS researchers are building on previous genetics work to identify susceptibility genes for familial early-onset (before age 40) essential tremor. Researchers are focusing on multigenerational, early onset families to better detect linkages.

Additionally, NINDS scientists are researching the impact of genetic abnormalities on the development of essential tremor. Previous research that has shown a link between essential tremor and possible genetic variants on chromosome 6 and 11; ongoing research is targeting the impact of other genetic variations in families.

Medications and other treatment methods

While drugs can be effective for some people, approximately 50 percent of individuals do not respond to medication. In order to develop assistive and rehabilitative tremor-suppressing devices for people with essential tremor, researchers are exploring where and how to minimize or suppress tremor while still allowing for voluntary movements.

Many people with essential tremor respond to ethanol (alcohol); however, it is not clear why or how. NINDS researchers are studying the impact of ethanol on tremor to determine the correct dosage amount and its physiological impact on the brain and whether other medications without the side effects of ethanol can be effective.

Other NIH researchers hope to identify the source of essential tremor, study the effects of currently available tremor-suppressant drugs on the brain, and develop more targeted and effective therapies.

Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact BRAIN at 800-352-9424.
Information on tremor also is available from the following organizations:

International Essential Tremor Foundation
HopeNET
National Ataxia Foundation
Tremor Action Network

 

Article from Caregiver.com.

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Scratch-and-Sniff Test Could Predict Parkinson’s Even Earlier

A new study provides further evidence that a simple scratch-and-sniff test could predict Parkinson’s disease even earlier than previously thought.

According to Michigan State University researcher Honglei Chen, lead author and professor of epidemiology, the test could potentially identify certain people who are at an increased risk of developing the disease up to 10 years before they are actually diagnosed. Previous research has shown an association between sense of smell and disease progression of up to four to five years.

The federally funded study, now published online in Neurology, the official publication of the American Academy of Neurology, is also one of the first to follow black people.

“One of the key differences in our study was we followed older white and black participants for an average of about 10 years, much longer than any other previous study,” Chen said. “We found that there was a strong link between smell and disease risk for up to six years. After that, the link remained, but just wasn’t as strong.”

He added that the relationship between smell and Parkinson’s risk in black participants also appeared not as strong as in the white participant group.

“Previous studies have shown that black people are more likely to have a poor sense of smell than whites and yet may be less likely to develop Parkinson’s disease,” said Chen, who is part of MSU’s Global Impact Initiative, an effort to help accelerate research in key areas affecting the world such as health and energy.

“We found no statistical significance for a link between poor sense of smell and Parkinson’s disease in blacks, but that may have been due to the small sample size and more research is needed.”

The study also found that older men with a poor sense of smell were more likely to develop the disease compared to women.

The study included 1,510 white and 952 black participants with an average age of 75. The test asked people to smell 12 common odors including cinnamon, lemon, gasoline, soap and onion, and then select the correct answer from four choices.

Based on their scores, participants were divided into three groups – poor sense of smell, medium and good. Researchers then monitored participant health through clinical visits and phone interviews for more than a decade.

Overall, 42 people developed Parkinson’s during the study including 30 white people and 12 black people.

People with poor sense of smell were nearly five times more likely to develop the disease than people with a good sense of smell. Of the 764 people with a poor sense of smell, 26 people developed the disease, compared to just seven of the 835 people whose sense of smell was good and nine of the 863 people whose sense of smell was categorized as medium.

Researchers also discovered that the results stayed the same after adjusting for other factors that could affect risk including smoking, coffee intake and history of head injury.

“It’s important to note that not everyone with low scores on the smell test will develop Parkinson’s disease,” Chen said. “More research is needed before the smell test can be used as a screening tool for Parkinson’s, but we are definitely on to something and our goal now is to better characterize populations that are at higher risk for the disease and to identify other factors involved.”

The National Institute on Aging, National Institute of Nursing Research and National Institute of Environmental Health Sciences funded the study.

 

Article from Michigan State University.

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Next Stop for PD Research: Outer Space

In an effort to find new treatments for Parkinson’s disease, researchers are sending their experiments to space.

On Monday Aug. 14, researchers launched a key Parkinson’s disease protein, called LRRK2, to the International Space Station (ISS). The microgravity conditions in space should offer a better test environment for their experiments with this protein, the researchers said.

The materials for their experiments will travel aboard the SpaceX Dragon capsule as part of a mission to send supplies and science experiments to the ISS.

The work is a collaboration between The Michael J. Fox Foundation for Parkinson’s Research and the Center for the Advancement of Science in Space (CASIS).

LRRK2 is a type of protein that modifies other proteins. Mutations in the gene that codes for LRRK2 are thought to cause Parkinson’s disease in some people. Researchers have hypothesized that developing drugs to inhibit LRRK2, or block its activity, could help prevent Parkinson’s or slow its progression.

But before scientists can develop a drug to inhibit LRRK2, they need to know the precise structure of this protein. One way to get a detailed view of its structure is by growing crystals of LRRK2 in lab dishes. However, on Earth, gravity can interfere with the growth of these crystals, and keep them small.

“The quality of our crystals is just not good enough [on Earth],” Sebastian Mathea, a researcher at the University of Oxford who is involved in the LRRK2 project, said during a news conference about the project Tuesday (Aug. 8).

This is where the ISS research comes in: Researchers hope that the microgravity conditions in space will allow the crystals to grow bigger with fewer defects. The scientists can then get a sharper view of the crystal structure.

Scientists will grow the LRRK2 crystals for about a month in space. Then, the crystals will be sent back to Earth, where they will be analyzed with high-energy X-rays, Mathea said.

Parkinson’s disease is a progressive neurological disorder that affects people’s movement abilities, and can result in symptoms such as tremors, slowed movements and muscle stiffness. There are currently no treatments to stop or reverse the progression of the disease, according to The Michael J. Fox Foundation.

Article from Live Science.

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