ET, Exercise and Longevity

The question about whether or not to exercise if you have essential tremor comes up often. This article was written several years ago by Dr. Jankovic, who serves on our medical advisory board. But the information is worth reprinting.

By Joseph Jankovic, M.D.
Director, Parkinson’s Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine, Houston, Texas

Any discussion of the management of a chronic disease would not be complete without emphasizing the importance of physical activity. Exercise has been shown to lower blood pressure, reduce obesity and prevent cardiovascular disease, but there is little data on the role of exercise and essential tremor (ET).

In fact, many patients with ET observe that their tremor is markedly exacerbated after strenuous physical activity or exercise and understandably wonder if they should avoid such activity.

As long as there is no cardiac, orthopedic or other contraindication, patients with ET should remain physically active. Be reassured that worsening of tremor after exercise is expected due to the outpouring of adrenaline (or epinephrine and norepinephrine) during exercise. Adrenaline, released during any physical or psychological stress, stimulates beta adrenergic receptors in muscle spindles, leading to increased muscle activity, manifested as worsening of tremor. This effect, however, is temporary and the tremor usually returns to its previous state after a few minutes of rest.

Alcohol and propranolol, a beta adrenergic blocker, can reduce stress-induced exacerbation of ET, hence the two drugs are often used to “calm” the nervous system.  Even professional actors often use propranolol to minimize the tremor effects of anxiety associated with stage fright.

Many studies have shown that exercise benefits not only the body but also the brain. It has been shown to improve learning, memory, and depression; it also appears to protect the brain from neurodegeneration. [Cotman et al, 2007].

Although Parkinson’s disease is different from ET (despite the occasional overlap of the two disorders), studies on exercise in Parkinson’s disease may be relevant to patients with ET.

In a prospective study of 48,574 of men and 77,254 women, higher levels of physical activity was associated with lower risk of Parkinson disease [Chen et al, 2005].  Based on systematic literature review, the Practice Recommendations Development Group from The Netherlands concluded that there is sufficient evidence to recommend physical therapy and exercise to improve balance, and training of joint mobility and muscle power and to improve physical capacity of patients with Parkinson disease [Keus et al, 2007].

There are many other studies that provide evidence exercise may be helpful in improving motor function [Kwakkel et al, 2007], although firm evidence that exercise lowers the risk of Parkinson disease is still lacking [Logroscino et al, 2006].

Exercise may prolong life not only by preventing or reducing the risk of life-threatening disorders, but also by slowing the aging process. One of the most compelling arguments in favor of exercise as an important anti-aging factor is the recent finding that leukocyte telomere length, a biological indicator of human aging, correlates with exercise.

In a study of 2,401 twin volunteers, comprising 2152 women and 249 men, who were asked to complete detailed questionnaires about their level of physical activity, smoking status, and socioeconomic status, the leukocyte telomere length was 200 nucleotides longer in the most active subjects as compared to the least active subjects during their leisure time (P<.001), even when adjusted for age, sex, body mass index, smoking, socioeconomic status, and physical activity at work.

It has been postulated for a long time that patients with ET live longer than those without it. The Russian neurologist, Minor, suggested in 1935 “that a factor for longevity was also contained in the tremor gamete.”

In a study published in 1995 it was found that parents of ET patients who experienced tremor lived on the average 9.2 years longer than those parents who did not have tremor. Since the parents with tremor who lived longer probably had ET, we concluded that ET confers some anti-aging influence and significantly increases longevity.

  • While there is no obvious explanation for this striking observation, it is possible that: patients with ET have an underlying personality trait that encourages dietary, occupational, and physical habits that promote longevity.
  • Perhaps, the small amounts of alcohol to calm the tremor might prolong life.
  • Finally, the tremor itself might be viewed as a form of exercise that would have beneficial effects on general health and on longevity.

Further studies are needed on the potential anti-aging effects of ET, and whether exercise confers additional benefits by favorably modifying the course of the disease.

References

Cherkas LF, Hunkin JL, Kato BS, Richards JB, Gardner JP, Surdulescu GL, Kimura M, Lu X, Spector TD, Aviv A. The association between physical activity in leisure time and leukocyte telomere length. Arch Intern Med 2008;168:154-8.

Cotman CW, Berchtold NC, Christie LA. Exercise builds brain health: key roles of growth factor cascades and inflammation. Trends Neurosci 2007;30:464-72. Trends Neurosci 2007;30:489.

Chen H, Zhang SM, Schwarzschild MA, Hernan MA, Ascherio A. Physical activity and the risk of Parkinson disease. Neurology 2005;64:664-9.

Jankovic J, Beach J, Schwartz K, Contant C. Tremor and longevity in relatives of patients with Parkinson’s disease, essential tremor, and control subjects. Neurology 1995;45:645-8.

Keus SH, Bloem BR, Hendriks EJ, Bredero-Cohen AB, Munneke M; Practice Recommendations Development Group. Evidence-based analysis of physical therapy in Parkinson’s disease with recommendations for practice and research. Mov Disord 2007;22:451-60.

Kwakkel G, de Goede CJT, van Wegen EEH. Impact of physical therapy for Parkinson’s disease: A critical review of the literature.  Parkinsonism and Related Disorders 2007;13:S478-S487.

Logroscino G. The role of early life environmental risk factors in Parkinson disease: what is the evidence? Environ Health Perspect. 2005;113:1234-1238.

Preparing for Your Doctor’s Visit

By Dr. Rodger Elble,
Department of Neurology
,
Southern Illinois University School of Medicine

Preparing for your visit with a movement disorder specialist will increase the odds of accurate diagnosis and appropriate treatment at an affordable cost. A complete and accurate medical history is crucial.

rodger elble photo

Here are some things you can do to facilitate a successful clinic visit.

1.  Prepare a written chronological history of your problem. What was your initial symptom (e.g., hand tremor) and when did this symptom begin? It is important to estimate the time or age of onset as accurately as possible. This may be long before the time when your tremor and other symptoms became disabling or really bothered you. Describe how the tremor started (e.g., suddenly or gradually) and how the tremor has progressed. Which areas of your body were affected initially and subsequently? Has there been a recent or rapid worsening? If so, was this associated with other events or medical problems (e.g., a new medication)? Note any changes in your balance, coordination, gait, and speech. Tell your doctor about any involuntary movements other than tremor (e.g., body jerks, twisting movement of the neck or limbs).

2.  Note any medications, substances or circumstances that make your tremor better or worse. Prepare a list of all treatments you have tried for your tremor.

3.  Prepare a family history. Document any relatives with tremor or other neurological conditions such as Parkinson’s disease, dementia, dystonia, ataxia, neuropathy, etc.

4.  Prepare a list of past medical problems and note whether they had any effect on your tremor. A recent medical summary from your primary care physician will be helpful. Bring a complete list of current medications and their dosages. Your pharmacist can help you with this.

5.  Be prepared to discuss how your tremor affects your daily life. Which activities are affected most? How has your handwriting changed? How does tremor affect your occupation and social life? Has your tremor affected you emotionally? Have you been depressed? You should be as accurate and candid as possible.

6.  Do not stop any medication unless requested by your doctor.

Your doctor will perform a thorough neurological examination to assess tremor severity and look for abnormalities other than tremor. Patients referred for essential tremor frequently have some other condition that is revealed by a careful neurological exam. There is no test for essential tremor.

At the end of your visit, make sure you understand your diagnosis and treatment options. Ask questions. Discuss your goals and expectations with regard to your tremor, but understand that available treatment is not always adequate. Consider participating in a research study if one is available and appropriate for your condition. Ongoing and recently completed research studies can be found online at ClinicalTrials.gov. 

The Best Caregivers Practice Self-Care

“You cannot serve from an empty vessel” ~Eleanor Brownn  

Carla Cheatham PhotoBy Rev. Carla Cheatham, MA, MDiv, PhD, TR

When we care for a family member, taking time to care for ourselves can be especially hard, assuming the resources are even available to allow us to do so. We do not want them to think they are a burden. We might feel sad for what they are going through, wishing we could fix it and make it all better.

We may feel selfish about stepping away for a bit of respite because they do not get to take a break from their illness, so why should we? We often feel compelled to push ourselves harder and further than is healthy, mistakenly seeing self-care as a luxury or feeling guilty for taking time away.

Selfishness is when we take care of our own needs at another’s expense. Self-care is when we take good care of ourselves so we CAN show up well for others. Exquisite self-care is our first and greatest priority if we wish to be good caregivers.

When we do not put our own oxygen mask on first, we can help no one and are more likely to develop compassion fatigue, the emotional and physical state that occurs when the amount of care we are taking in isn’t enough to make up for the care we extend.

Setting too high of expectations for ourselves can leave us feeling something is wrong with us, but humans under stress can get impatient, short-tempered, and long for our situation to be different. That happens, but will be less likely if we take in what we need to maintain our internal resources.

National Family Caregivers Month logoWe may feel powerless to change our circumstances and get the full support we need and deserve, but we are not helpless to take action on our own behalf. Even with very little time to ourselves, we can find mini-moments throughout the day to lower our feelings of stress and increase calm in our bodies and brains.

4-square breathing—Using your heartbeat as a timer, breathe in for the count of 4, hold that breath for 4, breathe out for 4, and hold for 4. You can do 3-4 of those in about a minute a couple of times a day.

Hand washing ritual—As caregivers, we wash our hands often and experts recommend doing so for 25 seconds. Take that time to breathe, feel your feet on the floor, soften your belly and torso, and lower your shoulders away from your earlobes where they’ve crept up due to stress.

 Waterfall doorway—Pick a doorway you walk through often. Imagine a waterfall coming down through that doorway washing off the stress of the day collected to that point to keep from accumulating it all day long.

 Common cues—Pick a common object, like a penny or a certain type of bird. Each time you see one, pause for 5 seconds and check in with the committee in your head to see if negative or self-defeating messages are running through your brain. If so, change the narrative with a positive phrase, mantra, or prayer repeated over and over again for a few more seconds until you feel a positive shift.

Phone a friend—Call someone you trust to talk about anything else other than your struggles and stressors. Even 5 minutes with someone who reminds us we are part of a larger world beyond the circumstances of our current moment can help to center us.

Three Good Things—Research has shown if, within one or two hours before sleep, we write down three good things that happened during the day and what made those moments positive, we sleep better and our rates of burnout go down substantially. Do this for 14 days. It only takes a few moments and re-trains our brain to see the positive as well as the negative our brains can so easily focus upon.

ABC’s of Gratitude—When we most need to practice gratitude is often when we feel the least grateful. Name something that begins with each letter of the alphabet for which you are grateful.  Even if our list starts frustratedly with apples, bananas, cats, and dogs, by the time we get to wisdom, yogurt and zebras our perspective will have shifted and we can feel the difference inside.

Hopefully something in these words has given you a couple of tools and encouragement to help you walk this journey. You and your loved ones deserve all the support and moments of peace you can access along the way.

*  *  *  *  *

Carla Cheatham is the principal and lead trainer for Carla Cheatham Consulting Group, LLC and serves as a national keynote speaker and educator teaching in the areas of clinical presence and attunement, compassion fatigue and resilience, ethical spiritual and existential care, grief support, ethical boundaries and healthy teams, and more. She publishes two blogs through CarlaCheatham.com and HospiceWhispers.com. She is the author of Hospice Whispers: Stories of Life and its companion piece, Sharing Our Stories: A Hospice Whispers Grief Support Workbook.

Being ‘Mindful’ May Help in Managing Essential Tremor

By Dr. Michael Braitsch, PT, DPT
Tribe Wellness, LLC

Photo of Michael Braitsch, Tribe WellnessIf you’re like me, you’ve heard over and over again the value of mindfulness. It’s become quite a popular buzzword in a variety of manners of marketing. As we enter the next frontier of neuroscience and brain health, it seems like you can’t go anywhere without hearing about mindfulness. But what does mindfulness really mean and how can it be useful in daily life or in managing life with a tremor?

As a physical therapist, I have seen time and again the role of increased stress ramping up the severity of a patient’s symptoms (whether it be chronic pain in someone’s lower back, the amplitude or frequency of a tremor, the incidence of freezing gait in someone with Parkinson’s disease – the  list goes on).

I’ve met many people though with an essential tremor who usually say something like, “If I really focus on it, I can kind of calm my tremor down.” This is mindfulness!

The even better news is that practicing mindfulness can have far reaching benefits to improve quality of life with or without a tremor. It makes good sense. When we are calmer, we learn better, we perform better, we are less distracted, and we can even tap into a level of subconscious skill to make life easier.

While this all sounds great, I’m also here to warn you that it takes some effort and consistency; however, we all know that most worthwhile things in life take some effort. The intention of this blog post is to clarify what mindfulness practice is and how it could be helpful.

What is Mindfulness?
Many people consider the practice of mindfulness as simply, being aware of the present moment and the task-at-hand. Merriam-Webster’s dictionary defines mindfulness as:

“1 : the quality or state of being mindful

2 : the practice of maintaining a nonjudgmental state of heightened or complete awareness of one’s thoughts, emotions, or experiences on a moment-to-moment basis “

So “mindfulness” is really a practice. It’s NOT a destination. It has a lot of similarities with meditation or directed thinking which is common in all religious beliefs, to quiet the mind you don’t have to run off to the mountains or join a monastery. Rather, mindfulness provides a method of intentionally directing one’s focus to the task-at-hand, while avoiding judgment (both good and bad).

Let’s break each of these down further.

Focus on the Present
An increased focus on the present moment is a heightened commitment to directing one’s attention to the task-at-hand. Even though the mind may wander, coming back to the present is the key for mindfulness. We are all human beings and have a natural tendency to consciously or unconsciously drift into other thoughts, but coming back to “right now” is the goal of this practice. Oddly enough, in a world where multi-tasking is everywhere, mindfulness practices teach us that we are more effective and more efficient when we slow down and focus on what we are doing.

Be Non-Judgmental
Each day we make thousands of decisions. For the sake of survival of the species, we have an evolutionary drive to constantly judge things as good or bad, helpful or harmful, useful or a waste of time. Using our “fight or flight” response has served us tremendously for thousands of years. This is often the hardest part of mindfulness. Reinforcement of use of the “fight or flight” hardwires us to rush ahead to the next moment. However, when we lose sight of the present and constantly let the mind race, neuroscience tells us that we strengthen our brains’ stress responses to everyday tasks. On an extreme level, a heightened stress-response can have far-reaching negative effects. While it’s helped humanity to survive, we’ve become hardwired to get bogged down by incessant mental chatter. Mindfulness shows us that we can remain focused on the task at hand without judgment, and on a very practical level, rewiring our brains from training a ”stress-response,” to instead, training a “relaxation response.”

As we strive to increase our focus and to quiet the mind, we can find an abundance of benefits from improved awareness. We can even gain insight into why we feel a certain way or perhaps a deeper level of relaxation. This training has a powerful effect on our autonomic nervous system. By choosing presence and mindfulness, a hyperactive brain or a hyperactive nervous system can be slowed down, leading to a wealth of benefits including improved cardiovascular health, improved cognition, and more!

But What About My Tremor?
Managing stress is great for everyone. For someone with a tremor, it can be even more helpful. Most people I’ve met who are dealing with essential tremor say something like, “my tremor gets worse when I’m stressed out.” Stress and depression can even create a negative cycle that increases the tremor currently, and because of embarrassment about worsening of the tremor, causes more stress and depression. While there have not yet been studies on practicing mindfulness as a means of managing essential tremor, there have been many anecdotal reports of it helping. It stands to reason that even if mindfulness did nothing for the tremor itself, the already established far-reaching benefits make it worth the effort until a study can show what so many people have already reported. Why not give yourself a chance to reduce stress and feel good, right?

Can I Practice Mindfulness While Exercising?
Now for my favorite topic. . .there are forms of exercise that harness and foster a mindful approach while also striving to calm the mind and strengthen the body. As a physical therapist, my life’s mission is to help people move better and feel better. The research on the role of exercise in managing stress is abundant to say the least. As a long-time martial artist, I’ve seen first-hand the changes that can occur with dedicated practice of martial arts and the increased sense of well-being that students develop. Tai Chi is easily the most common form of martial art with emphasis on mindful practice because it is low-impact, easy to modify, and because it focuses on breath with movement. Alternatively, yoga has provided an avenue for mindful training for centuries and pilates also employs a mindful approach to movement, capturing the benefits of mindfulness and exercise.

What Else Can I Look at to Learn More?
Mindfulness resources are everywhere! There is no shortage of resources when it comes to mindfulness. The best practice though, like the best exercise, is the one that you can do consistently.

Here are a few to start with:

 

Raising Awareness About ET and the IETF

Patrick McCartney
Executive Director

I recently attended the 70th American Academy of Neurology (AAN) Conference in Los Angeles, CA along with our board president Dr. Kelly Lyons. This annual conference offered more than 300 top-quality programs covering the spectrum of neurology; exciting networking opportunities; and expanded Experiential Learning Areas that allow attendees to interact, explore, and learn outside of the classroom. This year’s announced attendance was more than 14,000.

AAN offers non-profits free booth space and the IETF has exhibited at the conference for several years. This is a great opportunity for us to raise awareness and educate doctors, medical students, and pharmaceutical and medical device companies about the resources available on essential tremor from the IETF.

I’m always amazed at how many doctors and other exhibitors I talk with at these conference who either have ET or have family members or friends with ET. Talking to these people affirms why we attend these type of conferences because most of them have never heard of the IETF and they’re excited to hear there is a reliable source for accurate and objective information on ET.

Making Connections 
This conference also gave me a chance to catch up with several of our IETF Medical Advisory Board members. I enjoyed seeing Dr. Elan Louis from Yale University School of Medicine, Dr. Mark Hallett, a senior investigator with NINDS and Dr. Keith Coffman from Children’s Mercy Hospital right here in our backyard in Kansas City.

I also had the opportunity to meet with some of our partners who work (or are working on) a variety of ET specific medications or medical devices for the ET community. I was able to spend time with folks from Liftware, Abbott, Cavion Pharmaceutical, Boston Scientific and Medtronic. I also met with one of our newest partners the Alliance for Patient Access.

Another Advocacy Opportunity
In October, we will attend the American Academy of Family Physicians Annual Meeting in New Orleans. We think it’s important to attend this meeting to raise awareness with family physicians who quite often are the first doctors to diagnose ET in many patients. Again, almost all the doctors I talk with at this meeting see ET patients, but have no idea the IETF exists.

I know sometimes it seems like there is nothing new on the horizon to help ET patients. After attending AAN I’m excited about the new projects being worked on including ET specific medications, improvements in DBS and Focused Ultrasound treatments, and new medical devices that will help improve the quality of life for ET patients around the world.

The IETF awards four scholarships to exceptional students with ET

IETF Scholarship Recipient Karissa Hartzell

The International Essential Tremor Foundation is pleased to award four students who are affected by essential tremor with $500 scholarships for the 2015-2016 academic year:  Tyler Criswell from Altoona, Ala.; Karissa Hartzell from Andover, Ohio (pictured left); Katie Merrill from Arvada, Colo.; and Hannah Spence from Colchester, Vt.

“These four students exhibit impressive qualifications based on academic and extracurricular activities in their communities and will become outstanding, future leaders in helping create more awareness about essential tremor,” said Catherine Rice, Executive Director of the IETF.

People with essential tremor have to be adaptable. Daily activities are often difficult, if not impossible, to accomplish without some type of assistance. It takes a special type of person to look obstacles in the eye and continue to push forward, regardless of the amount of time or effort it takes. It takes drive, passion, and a strong sense of self, and these four scholarship recipients truly display what it takes to be successful in their college careers while coping with ET. Read more about their stories here.

IETF scholarships are awarded to qualified students of all ages who have been diagnosed with ET, to lessen the burden of higher education. The scholarship can be used for supplies, books or tuition at licensed, accredited institutions of higher education (including trade schools) and are paid directly to the educational institution. For more information about the IETF scholarship program, please visit www.essentialtremor.org/about-the-ietf/scholarships.

 

IETF Seeks 2015 Fall College Scholarship Applicants

Living with the daily challenges of essential tremor can be tough enough on its own. Living with ET while balancing a heavy course load and managing the financial burden of a higher education, can seem unbearable. The IETF’s scholarship program is dedicated to making sure ET does not stand in the way of an education.

Sarah-KunzwebEach semester, the IETF provides four qualified students with a $500 scholarship to help students of all ages who have been diagnosed with essential tremor achieve their dreams of going to college. Sarah Kunz understands the struggle of ET firsthand. As a past IETF scholarship recipient, she uses her ET as a motivation to help others. “I have a diagnosis of ET; it’s not a disability. It may be a challenge sometimes, but it’s empowered me to achieve my dream,” Kunz said. Kunz uses her scholarship award to pursue a degree in American Sign Language Interpreting at St. Catherine University in St. Paul, Minn. “Not even essential tremor can stop my dream,” said Kunz.

Eligible students must be a high school or GED graduate of any age, attending a licensed, accredited institution of higher learning and must have an official diagnosis of ET. The IETF Scholarship Committee, made up of members of the IETF Board of Directors, will review each application. Students will be judged based on their academic achievement, leadership skills and/or community service, as well as a submitted essay.

The scholarship application deadline is May 1, 2015. Applications can be found at www.essentialtremor.org/about-the-ietf/scholarships. Scholarships may be used to cover the cost of supplies, books, student fees or tuition.

For more information or to help further funding for the IETF scholarships program, please visit www.essentialtremor.org/about-the-ietf/scholarships.

Make an Impact on #GivingTuesday

Web-Banner5When the fun and feasting of Thanksgiving is over, and two days of getting great shopping deals on Black Friday and Cyber Monday are behind you, there’s one more important day to remember, GivingTuesday. On December 2, we’re joining a national day of generosity, #GivingTuesday. It’s a day when you can make a big impact on essential tremor and on your friends, family and neighbors living with this life-altering condition.

With your help, we’ll raise funds to further research to find the cause of essential tremor that leads to treatments and a cure, increases awareness, and provides educational materials, tools, and support for healthcare providers, the public, and those affected by ET.

How can you be part of it? Here are a few simple ideas:

With your support, we can raise ET awareness for more support, better treatments, and ultimately, finding a cure.

Start a support group in your community

Support-Group-Blog-PostwebWish there was a support group in your area? Want to meet others living with ET in your community? We can help you make it happen! We are continually seeking ways to connect people with ET and to bring relevant information about ET to communities all over the nation. With the millions of people around the globe affected by essential tremor, it is likely there will be others in your community who are also seeking support.  Do you know of a good location for a group? Are you great at connecting people? We would love to help you make a support group happen in your area. Call us today at 1-888-387-3667 or e-mail info@essentialtremor.org to learn how we can help you get started. Find more information about support groups on our website.