NWPF

August 2015

“Nothing that is worth doing can be achieved in a lifetime; therefore we must be saved by hope.”

                                                                                                                           Reinhold Niebuhr

September 26, 2015 is the day the NWPF’s Annual HOPE Conference will be held. I, like many of you have already registered to attend. Since signing up I have found myself reflecting and initiating conversations on what hope means to us, pwp’s, and to our care partners.

 Hopenwpf

  • To hope, according to Webster and Oxford dictionaries, “it is to want something to happen or be true and think that it could happen or be true”; “it is a feeling of expectation and desire for a certain thing to happen"
  • So simply and directly defined, hope appears uncomplicated, straightforward. It is not. For hope is not just a word or concept but a lived experience. As such it is multifaceted, nuanced, complex. It varies within and across individuals.
  • Traditionally, over thousands of years, hope has been the subject matter of religion and spirituality; the preoccupation of philosophers, theologians, clerics and people of faith. Hope is a virtue, which, along with faith and love, stands as the pillars of our moral, ethical and spiritual development. In hope we overcome adversity. In hope we encounter sustenance, redemption, salvation and even healing. In its absence, we realize that life is bleak and gripped by despair.
  • In the past few decades, particularly since the advent of positive psychology, research psychologists like Martin Seligman, Barbara Fredrickson, C.R. Snyder, Christopher Peterson, Robert Emmons,  among many others, have examined virtues from a secular, scientific, empirical point of view. Hope and other virtues are considered   “character strengths” or “positive emotions.” Hope is akin to “optimism” --a learnable and measurable skill. Despair is translated as hopelessness. Hope, or optimism, is a “style of thinking” that is central to successful goal attainment.
  • There is now a robust psychological literature indicating that hope, or optimism, is associated with increments in people’s health, recovery from surgeries and illnesses, heightened subjective wellbeing and even longevity.
  • People of faith believe that a hopeful stance is different than an optimistic one. The optimists speak with certainty and conviction that things will get better and that they will be instrumental in successfully managing adversity and emerging with a favorable outcome. The stance of the hopeful, is more humble, more quiet, more imploratory. They believe that “this too shall pass” but they are not entirely  free of doubts —hence they hope and, sometimes, hope against hope.  Further the hopeful appears to ask for a favorable outcome while the self-assured optimist appears to demand it.
  • There are other views on hope, which issue not from an individual’s scholarship or contemplation but from surviving horrific trauma and despair. Such is the work of holocaust survivor, psychiatrist, Viktor Frankl. He asserted that to sustain hope, when one is powerless and facing annihilation, one needs to accept what cannot be changed, affirm the value of life, believe that one’s struggles against terror is not about one self alone but is inclusive of others, have courage, and hold on to the belief that there is a god or a force or a power that is higher or greater than our isolated selves.
  • Also notable, and useful, is the work of-psychiatrist, scholar of adult development George Vaillant. He advances a scientific defense of faith and spirituality. He views hope, along with love, joy, forgiveness, compassion, faith, awe and gratitude as biologically and culturally grounded positive emotions. Thousands of years of biological, cultural and individual evolution have resulted in the development of brain structures and neural pathways, wherein emotions, positive and negative, are wired in and from where they can be rewired. It is in the daily cultivation of these positive states, these virtues, which are available to all, that one achieves spirituality.

In the end, we all vary on how and what we hope and where we place our hopes. Some chose science, some a divinity, some a form of higher power. Personally, concerning my life with Parkinson’s, I harbor two hopes, one distal and one proximal. I do hold the hope that medical science ”someday” in the future will deliver more effective treatments and a cure. It will probably be, not in my lifetime, but that of my adult children. In the meantime, as PD traces its inexorable trajectory, and incapacitates my body more and more, I hope I will have the grace and the courage to adapt and overcome the limitations imposed by the disease.

WPC Bloggerpartner Logo 300DpiMay hope spring eternal!

Julio  F. Angulo, Ph.D.

 

WPC Save The Date 2016

Julio F. Angulo, PhD
NWPF Blogger

July/August 2015

Bouncing Back from Adversity

“Life doesn’t get easier or more forgiving, we get stronger and more resilient.” ― Steve Maraboli, Life, the Truth, and Being Free

We have met people with an uncanny ability to bounce back from the many adversities that life presents. They exhibit what social psychologists call resilience.

In the face of distressing or traumatic events, like chronic or terminal illnesses, financial loses, tragic accidents, death of loved ones, they are suddenly pulled down into an abyss of anger, pain, fear, and despair. But, shaken up and stunned as these individuals feel, they do not give in to this torrent of negative emotions.

Instead, they keep calm, flexible, focused and strive not to loose perspective. When they deem that the threat could be managed they put their minds to work on a solution. When the event is judged as irreparable or incurable, they initiate an emotional process aiming to find acceptance, strength to go on, and in many cases, new meanings for their existence. In the end, they emerge re-energized, more prepared to meet future life challenges. Yes, to paraphrase Nietzsche, what does not kill you makes you stronger.

When we hear about these exemplary human beings we ask ourselves if we would be capable of coping with losses, adapt to life challenges in the same manner. We harbor doubts about our own capacities. But the answer is that, yes, we would be capable. According to studies, it turns out that the ability to bounce back from adversity is not rare or reserved for a special breed of individuals. Resilience is a fairly common occurrence. Further, resilience is an ability that can be cultivated. Based on what resilient individuals do, existing studies recommend several strategies:

  • Have in place a structure of emotional support. Invest in constructive relationship with others. Dedicate time and attention to friends and family. Build a network. In times of distress it will be your refuge, your safety net. The place where you will find guidance and support.
  • Practice keeping your emotional balance. Distressing or catastrophic events throws us for an emotional spin, where anguish, fear, hopelessness overtake and paralyze. But this is precisely the wrong moment to loose control and allow being swept by negative emotions. Resist the downward spiral and strive to stay focused and not loose perspective.
  • In the face of submerging, debilitating, negative emotions, deliberately, mindfully, make the extra effort to commit to positivity. Confronted with despair, seek solace in hope. Feeling abandoned, resist the path of emotional and social isolation. Instead, open up to your network of support.
  •  In the midst of turmoil, and in spite of it, determine what action to take. Analyze. Strategize. If the challenge appears surmountable, focus on finding a solution. If it appears irreparable or incurable, seek acceptance and begin to reinvent a future.
  • As you resist, be flexible. Life challenges, adverse events often call us to significantly change our ways. Open up to that possibility.
  • Embark in your own reconstruction. Consider what the adverse events took away and what remained. Grieve the losses and reconstruct with what was left.
  • Strive to find meaning or benefit. While in crisis or out of losses we can frequently find new perspectives, such as a new understanding of what really matters in life. A negative, traumatic event can reorient our existence toward a more satisfactory future.
  • Share your story with others. Engaging in meaningful self-disclosure is clearly beneficial to the person sharing it, as it is to the person receiving it.
  • Embrace optimism and gratitude. Adverse events, like storms, subside. Although the proverbial glass might appear to be half empty, from the vantage point of our wellbeing, it is more useful to regard the glass as half full. This is not a call for positive thinking but, instead, positive emoting. And concerning what was lost, the negative outcomes could have been much worse. So, let us consider letting go of our lament and engage in a heartfelt expression of gratitude—for all that we still have.

WPC Bloggerpartner Logo 300DpiJulio F. Angulo, Ph.D.

NWPF Blogger

 

 

 

 

Julio F. Angulo, PhD
NWPF Blogger

June 2015

We hear it frequently: Our PD community is vibrant, well informed and always willing to extend help and support as well as share their experience of living with PD.

In the past 3-4 months, I attended several PD related meetings and events. I found myself involved in several informal conversations with fellow PwP’s and the spouses who attend to their care. I inquired about their perceptions as providers or receivers of care.

Their expressed views were spontaneous, heart-felt, while also interesting, reflective and well-reasoned. Consider the following ones:

  • Caring for a spouse with PD is difficult and demanding, physically and mentally. The demands increase as the illness advances.
  • The practice and outcome of caring and being cared for is influenced by the quality of the bond between the PwP and spouse: how they communicate, make decisions, meet and resolve conflicts and stressors.
  • PD seriously challenges a couple’s relationship by altering, and quite often reversing their existing roles and responsibilities—their power structure. The one who led may now have to follow. The one who followed may have to lead. These are difficult transitions to negotiate.  Success or failure depends on the involved individuals capacity to tolerate structural changes.

It was also interesting to hear that when folks spoke about the act of caring for a loved one, they had a language preference. Some emphasize the descriptor “caregiving” while others spoke of “carepartnering.”

  • Those who spoke of “caregiving” focused on the figure of the caregiver, on whose shoulders rest the success or failure of the caring project. It was understood and appreciated that the caregiver assumes a demanding role, one that will require for more and more energy as PD advances.  While caregiving could be rewarding in a moral or ethical sense, it is feared that the experience is more likely to result in caregiver self-sacrifice, exhaustion, burn out or depression. Consequently, and in order to prevent such outcome, the caregiver is reminded to attend to his or her own needs and is encouraged to  “recharge the batteries” through exercise, yoga, music, dance, or support group participation.
  • Those who preferred “carepartnering” expressed a comparable appreciation for the role of the provider of care. But they added that they did not exist alone or in isolation, but functioned in an intimate, spousal relationship, a  partnership. The receiver of care has  responsibilities in the caring process too. Both have different and separate life stories. But together, as partners, they have forged common goals and a common destiny. Just as important as a role to play in the management of the disease. As a couple - as partners - they understand that the stress and burnout of one translates in similar fate for the other. The respective roles are not identical in responsibilities but complementary, based on each individual’s strength and capability. Both interacting parties recognize that PD will present bigger and bigger challenges as the disease advances. Consequently, they must remain flexible and open to dialog vis a vis changing demands.
  • These two perspectives were viewed as helpful, each illuminating our understanding of what is involved in caring.

One respondent stated, “In the early phases of the disease my husband and I were care partners. But now, in the advanced stage, it is just me - I do everything. I am the only caregiver. Maybe partnership is what we aspire but it is not what transpires.”

Another said, “In our situation, I carry the physical and emotional burden that comes with caring. But my partner carries one too—the debilitating disease. I feel that, still, we are in a partnership-- although it is more spiritual. It is from that vantage point that we acknowledge, thank and support each other.”

Yet another respondent noted: “I think that, much too often, we focus on the physical care of our loved ones, like the activities of daily living. But we overlook their spiritual needs or their mood states. It is important to keep in mind that a person can, indeed, be physically incapacitated, but still can remain mentally alert, can listen and enjoy music, can show a sense of humor and can share those experiences with a spouse.”

In sum, our respondents offered useful, practical views that can be of clear benefit to those who provide and receive care. It was rewarding to observe that the conversations on these matters, while at times different in emphasis, shared a common goal—to stand tall and mutually supportive as we face the challenges of living with PD. 

Julio F. Angulo, PhD
NWPF Blogger

May 2015

Our Brain's "Negativity Bias" Part 2

Part 1 of this blog was posted this past March 2015. It focused on neuropsychologist Rick Hanson’s work on the brain’s negativity and positivity bias, two evolutionary distinct neural pathways; both of crucial importance to human survival and human adaptation as well as the more personal pursuit of wellbeing and enhanced quality of life—concerns that are always in the forefront to many of us who live with a chronic illness.

 Part 2 presents Hanson’s method for counteracting the  “negativity bias” by strengthening or generating new pathways with “a positivity bias.”

What makes these changes possible is one remarkable feature of the brain - “experience based neuroplasticity.”  The brain’s capacity to learn, and thus change itself is not restricted to our formative years. It is life long. (Some of us “old dogs” can learn new tricks!) We can “install” new mindsets when we pursue the project in a disciplined, sustained and focused manner: “Neurons that fire together wire together.”  Change, depending on its magnitude, can occur in a few months or a few years rather than millennia.

Positivity, it will be remembered, embodies, among others, mental states of contentment, calm, confidence, hope, serenity, gratitude, peace, relaxation, resilience and comfort. They are associated with benefits to our health and wellbeing. These include a strengthening of our immune system, a cardiovascular system with greater capacity to manage stress, better regulation of mood states, enhanced ability to counteract the effects of painful experiences, including trauma.

How do we tilt towards positivity? According to Hanson, by “taking in the good.”  If we are interested in its beneficial effects, a good starting place is to begin noticing positive everyday experiences, as well as realizing how and when we ignore them, allowing ourselves to attend, instead, to what is negative. We need to become mindful of the negativity that is out there and within ourselves as well as the   positivity around us that is ready for us to incorporate. We cannot change what we do not notice.  Having become mindful of positive experiences then, the next major strategy for Hanson is to internalize them, through sustained, disciplined, daily practice. Success is achieved incrementally, one simple, mindful practice

Hanson’s method for “taking in the good” is operationalized in 4 simple steps or 3, as the 4th one is considered optional.

1.     Have a positive experience.

Recall, or create in your mind a life experience you viewed as rewarding.  It has to be an experience not a thought.   It could be a physical pleasure, a sense of pride or determination, a visit with a friend, the smile of an infant,  a flower is blooming, or a hug from a friend. Go small. The experience does not to have to be earth shaking. The littlie things in life, that we often overlook, will do just fine.

2.     Enrich it.

Intensify it. Rest your mind on the selected experience.  Pay particular attention to its rewarding effect.  Open yourself to it, to the feelings it has. Sense it in your body.  Stay with it for 5 to 15 seconds, or longer.  Enjoy it. Relish it. Savor it.  Gently encourage the experience to become more intense. Recognize how it could help you, nourish you or make a significant difference in your life.

3.     Absorb it.

Visualize how the selected experience sinks down into you, like a soothing balm or imagine it is a jewel and place it in the treasure chest of your heart. Recognize that the experience is becoming part of you, a resource inside that you can take with you wherever you go.

4.     Link positive and negative experiences (optional).

Hold a vivid sense of the positive experience and keep it in the foreground of your awareness.  Now summon a negative or unpleasant experience but keep it in the background.   Try for a few seconds.  If you find that the negative begins to hijack the positive, re-center by dropping the negative and staying with the positive.

Above all, have fun in your practice. To learn more consult:

Hanson, Rick. Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence. New York: Harmony Books, 2013.

Hanson, Rick and Richard Mendius. Buddha’s Brain: The Practical Neuroscience of Happiness, Love and Wisdom. California : New Harbinger Publications. 2009.

Hanson, Rick. Just One Thing: Developing a Buddha Brain One Simple Practice at a Time. California : New Harbinger Publications. 2009.

Julio F. Angulo, PhD
NWPF Blogger

May 2015

We all know that physical exercise helps you to move better, improve your balance and maintain your physical strength. But how does music therapy-based exercise help you with that? Exercising with music is fun, but that’s not all. Whether you are musical, a musician, or have no musical background at all, you move better and more functionally with music. 

How so? Because our brain LOVES rhythm. Rhythm helps to create regularity in our activities such as movements, physiological responses like breathing, and information processing. Research has shown that rhythmic cues could be an effective timekeeper despite basal ganglia deficits and rapidly forms stable and precise internal templates to organize motor responses (McIntosh et al., 1997, Thaut, 2005).  Board certified music therapists are trained to appropriately utilize the elements of music such as rhythm to drive the best possible, desired responses in therapy for each client’s needs including improving walking patterns, movement coordination, and balance.

Using commercially-recorded music gives a limitation that you tend to adjust—“move to” that tempo (speed) or rhythm of the music.  Whereas music (song) selections made by music therapists in therapy are to “facilitate” the movement in an optimal way, so you will be encouraged to naturally “move along” with the music. Your exercise movements can achieve more fluidity and coordination. In addition, music is a highly structured art medium. It provides you opportunities for repetitions so that you are able to exercise or relearn movements or skills in the optimal way.

You may feel that you understand the importance of exercise, but may feel discouraged due to pain or physical discomfort you are experiencing. Up to 85% of individuals with Parkinson’s reported that pain is a concern (Parkinson’s Disease Foundation, 2015). Research results have suggested the positive effects of therapeutic music listening for pain management (American Music Therapy Association, 2015) as it helps us to redirect your focus away from unpleasant sensation. In fact, many of my clients have mentioned that they did not focus on their pain or physical discomfort while exercising with music during music therapy sessions.

It may be easy to see the relation between singing and speech because we use the same physiological functions. It means the shared areas of the brain are activated while speaking and singing. Moreover, research has found that while we are singing, we use additional parts of the brain in addition to those shared areas (Özdemir, Norton, & Schlaug, 2006; Tamplin, 2008; Thaut, 2005). This indicates that singing, when it is clinically crafted as a therapy exercise medium, can enhance neuroplasticity, which allows the neurons in the brain to compensate for injury and disease and to adjust their activities in response to new situations or change in their environment.

It is obvious that music brings us some emotional sensations. Music brings back fond memories from the past and allows you to reminisce. Music is deeply associated with our feelings and can be stored with your memory. Sometimes it can go to the opposite direction - music may bring you negative feelings or emotions. If music happens to evoke negative emotions, music therapists are trained to properly follow up on this situation. When we introduce music/songs in a sensible manner during music therapy sessions, it would support you to express your emotions in a caring, encouraging environment. It would also work as a catalyst to better connect with family and friends regardless of your challenges with Parkinson’s.

If you are interested in exploring the benefits of music therapy for Parkinson’s, join us at Music Therapy for PD at Ted Brown Music in Tacoma.

Megumi Azekawa is a board certified music therapist and owner/director of Puget Sound Music Therapy. She facilitates the NWPF’s new program, Music Therapy for PD at Ted Brown Music in Tacoma. She also shares her music therapy knowledge and insight in her blog, Musically Thinking.

 

References:

American Music Therapy Association (2015). Music therapy and music-based interventions in the treatment and management of pain: selected references and key findings.http://www.musictherapy.org/assets/1/7/MT_Pain_2010.pdf.

McIntosh, G. C. et al. (1997). Rhythmic auditory-motor facilitation of gait patterns in patients with Parkinson’s disease. Journal of Neurology, Neurosurgery, and Psychiatry, 62, 22-26.

Özdemir, E., Norton, A., & Schlaug, G. f(2006). Shared and distinct neural correlates of singing and speaking. Neuroimage. 2006;33:628–635.

Parkinson’s Disease Foundation (2015). Pain. http://www.pdf.org/en/pain_pd.

Tamplin, J. & Grocke, D. (2008). A music therapy treatment protocol for acquired dysarthria rehabilitation. Music Therapy Perspectives, 26(1), 23-29.

Thaut, M. (2005). Rhythm, Music, and the Brain: scientific foundations and clinical applications. New York: Routledge.

 

Megumi Azekawa, MM, MT-BC
Music Therapy for PD Instructor, NWPF Guest Blogger

March 24, 2015

Our Brain’s  “Negativity Bias”

Negativity is an addiction to the bleak shadow that lingers around every human form ... you can transfigure negativity by turning it toward the light of your soul.

John O’Donohue, Anam Cara: A Book of Celtic Wisdom

Quality of life, general wellbeing, is an ongoing concern for us. We want a daily existence characterized by positive emotions. We try in earnest to rest our minds on what is calming and edifying, states of mind such as trust, hope, optimism, gratitude, serenity, compassion or joy.  

Yet we often find our mind resists this effort. It prefers to rest on what is disquieting, repeatedly warning us to mistrust and be vigilant because the world is not a safe place. It abounds with losses, and dangers.

So we scan people and situations looking for signs of threat. And when we find them, whether real or imagined, our alarm system immediately goes off, compelling us to take some form of action, namely flee, freeze, or get ready to attack or defend.

According to neuropsychologist Rick Hanson*, this phenomenon is omnipresent and is known as the “brain’s negativity bias.” It is part of our evolutionary inheritance. It is a neural pathway that evolved to increase our chances of survival, which in the calculus of evolution, is the superordinate goal. To that end, it is more adaptive to be on edge, hyper-alert and in a state of anticipation. The faster we scan and detect what is or could go wrong the better our chances of staying alive. This concern trumps all others, be it the quest for serenity, gratitude, resilience, comfort, positivity or even the accuracy of the assumed threats themselves.

In fact, it is infinitely more adaptive to have a brain that jumps the gun, and goes into alert mode naming a threat that turns out to be false than it is to remain silent when the threat is actually there. The brain, Rick Hanson likes to say, “is like Velcro for negative experiences and Teflon for positive ones.”

This “bias” served us well in earlier times, when nature and the wild overpowered us. The world of today is different. For better or worse. The cave, some diseases and the sabre tooth tiger are gone. The wild recedes to domesticity.  The rogue now reckons with moral precepts and commandments. The language of threat and danger is now the language of risk and cost-benefit analysis. The world may not be completely safe but it is safer than it used to be.

More and more of us survive and aim beyond survival. We want contentment. We want to pursue opportunities--which calls for taking risks. We want to build, broaden our horizons, our future.  

Certainly, our antiquated alarm system needs a tune up. The alarm needs not go off so frequently or indiscriminately.

Besides, hyper-responsiveness to the negative can be costly to our health and wellbeing. When we choose hyper-alertness and a proclivity to predict negative outcomes, we select agitation and forgo relaxation.  We open the door to pessimism and stress related disorders.

But so far, it appears as if the negativity bias is so formidable that it is destiny. Not so, says Hanson. The good news is that it can be counteracted or diminished thanks to another feature of the brain, “experience-based neuroplasticity.” The brain does not stop learning. Just as the brain can structure the mind, the mind can shape the brain.  New neural pathways can be established when we direct our intention and attention away from negativity and in other desired directions, like towards positivity, and when we  pursue the project in a disciplined, sustained and focused manner. More good news – change can occur in months rather than millennia.

Research from psychologist Barbara Fredrickson** and colleagues indicate immersion in positive emotions is also adaptive. It is advantageous personally as well as socio-culturally. Positivity promotes energy and vigor, counteracts depression and anxiety, increases overall resilience, and fosters creativity and deeper connections with others.   This is a quantum leap from the “negativity bias,” which is focused on attack and defense. In her words, “Positive emotions broaden [our] scope of attention, cognition and action, and build physical, intellectual and social resources.”

How do we tilt towards positivity? According to Hanson, if we are interested in its beneficial effects, a good starting place is to begin noticing how and when we attend to the negative and ignore the positive elements in our everyday life. We cannot change what we do not notice.  Having become mindful of them, the next major strategy for Hanson is to “install” them in our behavioral repertoire by taking in what is good and positive. And with those elements we begin to build a new neural pathway—one leading to calm, confidence and contentment.

The method is simple, doable and effective. It will be the theme of my April post. 

*Hanson, Rick. Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence. New York: Harmony Books, 2013.

**Fredrickson, Barbara. Positivity: Top-Notch Research Reveals the 3 to 1 Ratio That Will Change Your Life. New York: Three Rivers Press, 2009.

Julio F. Angulo, PhD
NWPF Blogger

March 2015

Symptom Management: Deep Brain Stimulation

dbs2

A steady exercise routine, a strong support group and a primary-care physician are of utmost importance to Parkinson’s sufferers, but sometimes even that’s not enough.

Deep Brain Stimulation provides another option for those dealing with the disease, and University of Washington-based Dr. Andrew Ko is among the neurosurgeons who are happy to provide the service.

In addition to seven years of neurosurgical training at the UW, Dr. Ko spent an additional two years engaged in research and specialization in surgery for diseases like Parkinson’s. He returned to the UW this June, and he counts Deep Brain Stimulation as among the most personally rewarding.

“These types of procedures,” he said, “you see the effects, you see how you affect people, and that’s very gratifying.”

The concept of deep brain stimulus is nothing new, and the use of electrical stimulation for the treatment of Parkinson’s has been around since the 1950s. However, difficulty in accurately guiding stimulation, and unreliable hardware limited its success.

The modern procedure was first performed in the United States in 1991 and has gradually become fairly common nationally for patients with neurological movement disorders. It’s also been used to treat essential tremor and dystonia, but Deep Brain Stimulation is best known as a remedy for patients with Parkinson’s.

DBS, as it is commonly known, begins with a surgery involving a pacemaker-like device called an implantable pulse generator (IPG), which delivers an electrical current through the areas of the brain that help control movement.  These electrical currents modulate the activity of the brain, stabilizing tremor, and helping control some other Parkinson’s symptoms.

“It’s not a cure,” Ko said. “It doesn’t change the disease progression. It’s purely for symptomatic relief.”

The procedure can help people with Parkinson’s most in terms of tremor, and slowness of moving. It works in tandem with medication to improve motor symptoms in Parkinson’s.

“For certain patients, it’s proven to be better than the best medical management alone, if you’re at a certain point in the disease,” Ko said, adding that this treatment is not appropriate for everyone.

“As rule of thumb, people with Parkinson’s should have symptoms for at least five years before considering something like this,” he said, adding that patients who have side effects of medication or fluctuations in effectiveness are particularly well-suited for the procedure. “It’s a very effective treatment, but there are certain things that don’t get better, and certain people who shouldn’t get it.”

One who did was Marty Hovenkotter, a 63-year-old resident of Sammamish, Wash., who underwent the procedure in 2008. Hovenkotter was well into his Parkinson’s journey, having first been diagnosed in Nov. 1990 -- more than a year before Michael J. Fox was diagnosed with the disease and eight years before Fox went public with his Parkinson’s. At the time, Hovenkotter was told he would only have two years to live.  

More than 14 years later, Hovenkotter was still living life. And thanks to his DBS surgery, his quality of life has improved in recent years. So much so that Hovenkotter would recommend it to anyone with Parkinson’s who qualifies.

“I just told a guy the other day: sooner is better than later,” Hovenkotter said in January. “You don’t get the benefits of impulses forever. A person is better to get it done now and get on with their life.”

One of the perks of the surgery, Hovenkotter said, is that it’s cut his daily meds in half.

“That’s a gold standard for Parky’s,” he said. “It allows you to have movement. I was taking five or six of those (medications) a day, and I cut down to three.” DBS has cut down on Hovenkotter’s tremors while helping to stabilize the progression of other Parkinson’s symptoms. “For me, (the decision to have DBS surgery) was simple,” he said. “I almost felt like it was designed for me.”

Interested parties can further investigate the surgery by getting a referral from their neurologist or primary-care physician. Dr. Ko said he would be willing to answer any questions as well, while the University of Washington’s movement disorder clinic also provides feedback on the procedure.

Ko said the most important thing is for a person to do the homework before making a decision.

“It’s like getting married,” he said. “When you get this device implanted, it’s going to be with you the rest of your life.”

For more information, Dr. Ko’s clinic can be reached at:

3rd floor Surgery Pavilion

1959 NE Pacific Avenue

Seattle, 98195

(206) 598-1459

January 2015

The Prescription Pipeline: Duodopa in Parkinson’s Disease

Levodopa is the main stay in treatment of Parkinson’s disease, butResources over time patients develop motor fluctuations that limit the efficacy of this drug. Levodopa has a short half-life of around 90 minutes when it is administered with Carbidopa (combination Carbidopa/Levodopa, or Sinemet), and as a result, patients often end up needing frequent dosing. Dosing frequency increases with disease progression and loss of dopaminergic neurons over time.

Pulsatile or intermittent administration of levodopa is thought to possibly contribute to levodopa induced dyskinesias and motor fluctuations. Levodopa is absorbed in the first part of the small intestine, and as Parkinson’s progresses, the stomach emptying slows down and affects levodopa availability in the small intestine and consequently results in dose failures

Duodopa consists of the Levodopa–Carbidopa intestinal gel (LCIG) delivered directly to the initial part of the small intestine through a percutaneous endoscopic gastrojejunostomy (PEG-J) tube connected to a portable infusion pump. Continuous infusion of LCIG bypasses gastric emptying and hence reduces dose failures.  It also provides for a steady influx of dopamine and reduces motor fluctuations such as dyskinesias and off periods.

The Duodopa system consists of the LCIG gel/ medication, which is stored in a cassette form. This form attaches to a pump system with a tube to deliver medications. The tube connects to the PEG-J tube placed in a patient’s small intestine. The PEG tube is placed endoscopically by a gastroenterologist, who makes a small incision in the abdominal and stomach wall to place the tube. The pump can be programmed to deliver medication at different rates and is switched off at night. By providing a continuous system of dopamine infusion, there is evidence to suggest that Duodopa significantly improves on time, reduces dyskinesias and resolves dose failures.

Side effects from the levodopa gel are similar to side effects from levodopa. These side effects may include nausea, lightheadedness and rarely hallucinations.  Additional side effects of the pump system may include technical issues such as kinking of the tube, leak around the PEG site, etc.

The Duodopa system is approved for use in over 30 countries, and while it is being fast tracked in the US, it is not yet available for commercial use.  As always, please talk to your doctor about all treatments and medications you are interested in pursuing.

Read a further DUOPA announcement here

Sindhu Srivatsal, MD
Neurologist, Virginia Mason & EvergreenHealth

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Bicycling through Alaska Winter: Insanity, or Mere Stupidity?
Pay It Forward
Book Review: Dealing and Healing with Parkinson's Disease and Other Health Conditions
Parkinson's Rules
Book Review: Everybody Has a Window and Aisle Seat
10 Things You Don't Know About PD
Introducing NWPF's New Social Services Manager: Sarah Winter, MSW, LICSW
Davis Phinney Foundation for Parkinson's: Preparing People to Meet Someone with Parkinson's
Lies That Parkinson's Disease Told Me
Managing the Holiday Blues 2016
Who Was That Masked Man?
The Rain Is Shining — A Thanksgiving Message
Book Review - H.O.P.E.: Four Keys to a Better Quality of Life for Parkinson's
David Leventhal: Dancer, Teacher, Community Leader, Humanitarian, Movement Specialist
Meet Emily!
Rhonda Foulds, Outrunning Parkinson's Disease
Book Review: The Perapatetic Pursuit of Parkinson Disease
Staff Stories - Melanie
Snake Oil, the Cure for Parkinson's.
Book Review: Nan Little
Life's a Lot Better with NWPF
Tipping Points
Book Review: Natural Therapies for Parkinson's Disease
Dare to Attend a Support Group
Ten for David
Time After Time: Kim Farmer's Story
The Glass is Half-Full
Book Review: Reverse Parkinson's Disease
Contentment
Parkinson's and Free Will
A positive attitude is everything
Book Review - Lucky Man: A Memoir
Alexithymia, the Parkinson’s Get Out of Jail Free Card
We Make Them Together: Major Decisions in Caregiving
Boxing is cool
Safety with Style: House Renovations you can hold on to
Book review: On My Own
Shaken to the Core
Isolation and Parkinson's Disease, The hiding and the hidden
Camp Brian Interview
Safety with Style: House design ideas you can hold on to
Book review: Shake Well Before Use
Notes on Acceptance
"Advice" to a person with Advancing Parkinson's Disease
Needed: New Parkinson’s Vocabulary
Caregiving: Ken's Story
A Well-Tested Testimonial, or Spin for Parkinson's
Safety with Style: House design ideas you can hold on to
Caregiving: Susan's Story
Rock Steady Boxing: Emily
Book Review: My Degeneration, A Journey Through Parkinson's
The Marble Halls of Power
Safety with Style: House design ideas you can hold on to
ROCKIN’ AROUND THE GROCERY CART
Managing the Holiday Blues
Book Review: A Complete Guide for Patients and Families
The joke is on Parkinson's
I don't always like groups, but when I do...
JBC + DBS: A Mostly-Love Story (Continued)
Rock Steady Boxing: Fred Hyde
Present Moment: A Continued Conversation
Book Review: Navigating Life with Parkinson's Disease
JBC + DBS: A Mostly-Love Story
Present Moment
On the scent of Parkinson’s disease
Harold Allen (Hal) Newsom
The 2016 World Parkinson’s Congress in Portland, Oregon is Fast Approaching: Make Plans to Attend
Flowers on Dr. Starr's Tie
Leading the life of malicious whimsy
Listen: Unlocking Parkinson's Disease
Book Review: If I Can Climb Kilimanjaro, Why Can't I Brush My Teeth?
The Evolution of HOPE
QUIZ: How well do you know your Parkinson’s Disease?
Living with Hope
Notes on Hope
Tug, tug, tug
Denial on Trial
Flowers in Our Hair
Resilience: Bouncing Back from Adversity
Summer Travel
Tina Sawyer Steps Up Fundraising in Seaside
The uncooperative patient
To be in June
Pressure Sores
Caring for a Spouse Living with PD
Life Lessons
Doc Parkinson - A Eulogy
Boom Go Parkinson’s Costs
From the Depths of the Cupboards: Pumpkin Bars
Doctor's Visits
Get Moving!
Choosing a shared burden
Our Brain's "Negativity Bias" Part 2
Outside of Language
Managing Constipation in Parkinson’s Disease
Replacements
Finding Time for Caregiver Care
The Helplessness Antidote
Examples of living your best
10 exercise tips for people with Parkinson's
Bit on Basketball
Suggestions for the Shaken
Parkinson's Action Network (PAN) Report
Our Brain’s “Negativity Bias”
Living for a Cure
Three Huge Changes for People with Parkinson's
Caregiving, the Next Level
Parkinson's Pundit
Perseverance
Making Spousal Relationships Work
Parkinson’s and Luck
Strength. Courage.
Resolve to be a Better Caregiver!
Update from the Parkinson's Action Network
Strategies to Achieve our New Year’s Resolutions and Goals
Movement is Medicine
Hello from Canada!
You can't do that!... Can you?
Behind the Scenes with Maria Cole, MSW
Aiming for Well-Being
Aiming for Well-being
Holiday Feasts, Family & Fun
Pause and Be Thankful
Diagnosis is a turning point, not a beginning
Behind the Scenes with Steve Wright
On the Practice of Gratitude
Thanks for Joining Us at the HOPE Conference for Parkinson's
Frozen Men
Is there anything good about Parkinson's Disease?
Understanding and Managing PD-Related Shame and Embarrassment
An Open Letter to My Family & Friends
Parkinson's Travel Tips
PD & Creativity
Living Conference Held in Boise
Caregiver Burnout - Write it Down!
How Could I Be So Wrong?
Medicine and Cognition
Take a Hint from PD
Taking the Park out of Parkinson's
Northera and Dizziness
Re-Prioritizing Hopes
Dairy & Gut Health in PD
Nature's Moments
One Step At A time
Antioxidant Diet
Common Medicines Common Side Effects
Parkinson's Posture
Parkinson’s Disease & Supplemental Security Income
Parkinson’s Paradoxes
Coming Out of the Caregiving Closet
Parkinson’s Disease Nutrition: Why is it Relevant?
The Importance of Care before Cure: NWPF’s Past, Present & Future
Impulsive behaviors and activities: What is the cause?
Top medicines that worsen Parkinson’s disease or cause secondary parkinsonism
Is leg pain a symptom of Parkinson's?
Look beyond Parkinson’s when symptoms change quickly
Stem cells-what are they and how are they made?
Acting out your dreams- a sleep problem in Parkinson's disease
Are there recommendations for the best type of mattress for Parkinson's?
How can service dogs help Parkinson's?
Is your environment a high risk PD zone?
Is natural dopamine better than Sinemet?
Is marijuana helpful for Parkinson’s?
What is atypical parkinsonism and how does it differ from PD?
Does glutathione help Parkinson’s disease
What do I need to know about vitamins?
When do I need to see a physical therapist?
Can you give any additional information about Othello Syndrome in the context of PD?
What causes hallucinations?
How can I alert medical providers that I have DBS in an emergency? Can mammogram be done?
Top Ten Tips for Parkinson’s Disease- Tell us yours
Booth Gardner has touched the lives of so many
How do I best time doses of carbidopa/Ldopa?
My mom has PD and almost every evening, any time between ...
How does Parkinson's affect cognition? What can be done about it?
Absorption of Sinemet requires optimal GI health. Is anyone working on a sublingual delivery of the medication?
Can ultrasound treat Parkinson’s tremor?
Most popular posts of 2012
What are you grateful for this holiday season?
How can I tell whether medications are wearing off or Parkinson’s disease is progressing?
Can a person with Parkinson’s give blood?
When is the right time to start Levodopa?
Can acupuncture help PD symptoms?
Support the Caregiver in your Life
Power of the mind to move treatment further
Top 10 Foods for Parkinson’s (and counting!)
How can I prevent dizziness?
What can you tell me about laser light therapy and Parkinson’s
What is music therapy?
Should I take Coenzyme Q10 for my Parkinson’s?
How do I treat my cough at night?
Parkinson’s fitness programs need to be tailored to the individual to get results
Carrying the Olympic Torch for Parkinson’s today
Coffee reduces risk of Parkinson’s. What about other foods?
Facts about depression
How can I find a good doctor who is knowledgeable about PD and is caring as well? My doctor does not always listen.
Help for constipation
Sex, Intimacy and Parkinson’s
Does DBS affect speech?
Walking and balance can significantly impact quality of life- but is treatable.
Depression is common with Parkinson’s
Ode to Parkinson’s- Poem from Member
Music Enhances Brain Activity
How does posture change with Parkinson’s?
What is important to you?
Are hallucinations caused by Parkinson’s?
Hot Off the Press – Neupro approved by FDA
How do I find a Parkinson’s physical therapist to keep me exercising?
Does Azilect slow disease progression?
Manage nausea from medicines
Is delaying medication harmful?
Advice for newly diagnosed
Is Parkinson’s Hereditary?
Medication Timing
Is gambling a side effect of medicine?
Medication Assistance
Does stress cause Parkinson’s?
When to see a physical therapist
FDA approves DATScan
Coconut Oil
Protein’s effect on medicine
Restless Leg Syndrome