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The Compassionate Warrior in the Battle Against Parkinson’s

compassionate

“C” is for compassion in my CHRONDI Creed, a warrior’s guide in the battle against Parkinson’s disease. It may seem odd to label a warrior as compassionate. Normally we picture the warrior as fierce, brave, courageous, and strong. We don’t often associate compassion with such an image. However, in the battle against chronic disease, being both a warrior and compassionate person has important benefits. The compassionate warrior brings a special set of armor and weapons.

Compassion is the mindset upon which the strength and courage of a warrior are set in motion. I have defined compassion as empathy plus wisdom; empathy is the ability to sense and hear the suffering of others, while wisdom is the ability to do something to reduce that suffering. Compassion is about the reduction of suffering in the world.

The first step to becoming a compassionate warrior is making a commitment to a life of compassion, or having a philosophy of compassion. The second step is to realize that you can change your behavior so that you contribute less to the suffering of those around you. The third step is realizing that you can act in a way that helps reduce the suffering of those around you without sacrificing your well-being. In fact, this path of the compassionate warrior promotes personal well-being.

The challenges of living with PD are many. The most obvious are the motor and coordination issues that impact every movement. There are also equally impactful emotional issues such as impulse control, grief, loss, depression, anxiety, and anger. Also included is a decreased ability to manage those emotions.

When the actions connected to these emotions spill out into life, the consequences can be costly and add to an already arduous chronic disease battle. The biggest contributor to human suffering is the objectification of the other person, which often happens when emotions overflow. This is where the practice of compassion plays an important role.

Practicing compassion is very much a scenario looping skill, and as such, it is good brain training for people with Parkinson’s. Without doing so directly, the practice of compassion helps us to moderate those emotions and decrease their consequences.

compassionate
(Graphic by Dr. C)

It may seem odd to say that acting compassionately has selfish benefits. That’s not the goal of compassion or its mindset, but those benefits are simply positive side effects. Compassion focuses on the other person. The skill at which a person can do this depends on their history with practicing compassion. You don’t have to be an expert to have it make a difference.

Practicing compassion at any level is good for relationships, and healthy relationships improve the quality of life for anyone with a chronic disease. The compassionate mindset is also one of gentleness, which can be (and should be) applied to self in healthy doses. Being a compassionate warrior does not mean we sacrifice our well-being for the sake of another. Two people in a rowboat, both manning the oars, makes the journey easier.

Compassion, after some practice, can move from contemplated action to the first action taken. It then becomes the first thought considered, which then becomes living as a compassionate warrior. I have been training as a compassionate warrior for decades, and PD has set me back. As a compassionate warrior, I continue to work as hard as any warrior would when preparing for battle. The compassionate warrior does this preparation along with meditation and a calm mind.

It is a commitment to a way of living that’s foundational for the other parts of the CHRONDI Creed. Additionally, the other parts of the CHRONDI Creed help to support this foundation to becoming a compassionate warrior against the chronic disease of Parkinson’s.

It is not easy to become a compassionate warrior in the battle against PD, but the benefits are worth the effort. What is your experience in applying compassion in your life?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post The Compassionate Warrior in the Battle Against Parkinson’s appeared first on Parkinson’s News Today.

The CHRONDI Creed: A Guide for Parkinson’s Warriors

CHRONDI Creed

The challenges of any chronic disease require the mental attitude of a warrior. Like the code of the samurai, the CHRONDI Creed is both a guide for battle and for living.

CHRONDI is an acronym from the first letters in the words chronic disease. The letters stand for each part of the creed as follows: C – compassion, H – happiness, R – rehabilitation, O – others, N – nature, D – death, and I – individuality.

Following is the CHRONDI Creed and its self-affirming dialogue. This is followed by a description of each self-affirming statement in this chronic disease warrior’s creed.

C – Compassion: I will act compassionately toward others and find gentleness toward self.

H – Happiness: I will seek the inner bliss of happiness that is not material in nature.

R – Rehabilitation: I will apply courage and mindfulness to my part in fighting the disease.

O – Others: I will genuinely communicate to others my experiences and maintain an attitude of gratitude for their help.

N – Nature: I will take time to embrace nature and all its beauty.

D – Death: I will find the courage to face the terror of “death” (loss) and not let it control me.

I – Individuality: I will continue to express my individuality and my purpose, beyond the disease.

These CHRONDI Creed statements are short “I” statements that not only can be self-affirming, but also they can change how a disease affects one’s life. If these statements become an inner dialogue, a way of thinking and acting, then they can contribute to quality of life.

Compassion as a way of thinking and acting is the foundation of the CHRONDI Creed. It is a state of being that is expressed both externally and internally. In the face of chronic disease, this is certainly difficult. But it doesn’t have to be perfect saintly compassion. It can start with small steps, such as taking the time each day to do something for someone else. In addition, this sense of a gentle kindness can be applied with a kind word to self, such as: “You did well today.”

Happiness is not tied to material things, although it may appear to be. Rather, happiness is tied to an internal state of being often connected to events, not possessions. We are happy because we feel happy. A state of bliss can accompany times when an event generates ecstasy — a bliss of happiness. Happiness is an important part of well-being in the face of chronic disease. Returning to the bliss can be as simple as finding things we enjoy and taking time to laugh out loud.

Rehabilitation means that we will do our part to support all treatment modalities that are used to fight the chronic disease.

The term others stands for all relationships in our lives. The statement is a promise to speak in an authentic manner with a sense of gratitude.

Nature, and all its beauty, when incorporated into life can make a difference in our well-being. A stroll through the woods or a park while maintaining a quiet mind can add to our quality of life. Gardening is also therapeutic.

Death” has quotes around it because it refers to the death of those things the disease has taken and will continue to take. There is “terror” in facing this “death.” Terror management takes courage and practice to find a calm center in the middle of the storm.

Expressing individuality is balanced against the time used by the chronic disease, the thought and emotion that the chronic disease consumes. Find your inner voice, your unique identity, and your purpose. Let that light that is you continue to shine forth.

The CHRONDI Creed is a list of statements I have used to help me as a warrior against the ever-worsening effects of Parkinson’s disease. Not for a single day can I achieve a level of perfection with all aspects of the creed. Perfection is an illusion, perhaps a nightmare. Rather, I hold these statements as an inner dialogue, a path to follow, a gentle guide for living. It is in this way that the CHRONDI Creed improves my quality of life.

How does the CHRONDI Creed sit with you?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post The CHRONDI Creed: A Guide for Parkinson’s Warriors appeared first on Parkinson’s News Today.

Finding Words to Describe Parkinson’s Pain

pain

Parkinson’s disease (PD) pain is unique, so finding words to describe it is difficult. Not all those with a diagnosis experience pain. But for some, like me, pain is the major, disabling symptom. It is important to find words that describe the pain experience as clearly as possible. There is no “grin and bear it,” nor is this “a pity party.” Instead, this is a search for accurate articulation of the pain experience to help maintain quality of life.

Pain may be an early symptom of PD, according to a study presented at the 2018 World Congress on Parkinson’s Disease and Related Disorders titled “Pain: A marker of prodromal Parkinsons disease?” The American Parkinson Disease Association published research that supports the connection of pain with Parkinson’s, suggesting that if the pain is relieved with dopaminergic medication and the patient has a pattern of painful sensations that correlate to “off” episodes, more credence can be given to the idea that the pain is PD-related.

PD pain can resemble pain from other disease processes, especially as the patient ages and faces a multitude of other pain-causing conditions such as arthritis, spine degeneration, poor muscular conditioning, and such. In my case, PD pain is distinguished by the following:

  • The progression of body pain correlated with the progression of the disease over time.
  • Levodopa, a dopaminergic therapy, successfully reduces the pain.
  • The pain is worse during “off” periods.

My PD pain also has a particular characteristic: stinging (sometimes knife-jabbing), irritating tingling, burning, and muscle heaviness with increased pain on movement. This pain happens over large regions of the body and varies in severity. At its worst, it can last several days and reach level 7, inducing spontaneous tears.

PD with episodic chronic pain is disabling in several ways. First, high levels of pain obstruct clear thinking. Second, high levels of pain induce the fight-or-flight response, which interferes with emotion management. Third, the amount of energy necessary to manage it is very tiring (even more so in the face of the deep fatigue associated with PD). Chronic PD pain entails much more than body symptoms.

Parkinson’s pain is a total experience that touches thoughts, feelings, and relationships. Even when it’s a struggle, finding the words to describe pain experiences is imperative to maintaining quality of life in the face of a difficult diagnosis. Finding the right words helps one communicate the pain experience to care providers, family, and friends — a network of relationships that help form the foundation for quality of life. By communicating the pain, those close to me are more understanding of why I act the way I do, which helps to maintain those relationships.

Over the years, I have watched my PD progression. I have taken the warrior stance to do all I can to slow the progression. My hardest battle is with the total experience of chronic PD pain. Large blocks of time disappear into the fog of war. Over time, I have learned the importance of communicating about the pain daily, sometimes multiple times a day. My partner asks, “Where are you today?” I will say, “I’m at level 5,” followed by a quick mention of the most bothersome symptoms. In the past, I kept track of the pain levels throughout several months to create benchmarks. This is all part of finding the words to describe the Parkinson’s pain experience.

I have been a “communicator” most of my life, but it remains a struggle to find words that describe the unique character of PD pain. If you experience PD pain, please share your descriptors in the comments. Together we may find a common dialogue that will help others.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Finding Words to Describe Parkinson’s Pain appeared first on Parkinson’s News Today.

‘Bananas and Beans, not Burgers’: High-Protein Meals and Levodopa

protein

No one told me that breakfast bacon, ham, or sausage would make me feel awful!

I had seen my off-periods worsen after a heavy meat meal, but I shrugged it off as “just a bad off-period.” Now, after being on levodopa for five years, I am positive that animal protein meals are a serious issue. Overlapping a high meat meal with levodopa can result in not just an off-period, but also one that lasts much of the day.

“Bananas and beans, not burgers” is the mantra to remind me that diet is very important in the development of a rehab plan for folks with PD. I am not a nutritionist. I am writing from the perspective of a PD patient warrior and rehab clinician.

Research suggests that changes to your diet could help alleviate some symptoms of your PD. The American Parkinson Disease Association (APDA) notes that levodopa crosses the wall of the small intestine via molecules in the intestinal wall that transport amino acids. When dietary protein (beef, chicken, pork, fish, eggs, nuts, and dairy) is also present in the small intestine, fewer transporters are available for levodopa to use. We may experience the “protein effect” when the medication competes with a high-protein meal.

One of the most compelling statements in a 2014 study published in Frontiers in Aging Neuroscience is that a “growing body of evidence suggests that nutrition may play an important role in PD.”

The study “Irregular gastrointestinal drug absorption in Parkinson’s disease” in the journal Expert Opinion on Drug Metabolism & Toxicology states that levodopa transit time in the small intestine is approximately three hours. Therefore, gastric emptying is a major determining factor for the onset of symptom relief. When PD delays gastric emptying, it has the potential to cause motor fluctuations, known to us as off-periods.

Research also shows that with your microbiome (the microorganisms in your body), a relationship exists between Parkinson’s disease and improved gut health. In “Parkinson’s disease and bacteriophages as its overlooked contributors,” published in the journal Scientific Reports, George Tetz and his colleagues examined the viruses that live in the gut, as well as the role the microbiome may play in Parkinson’s disease. According to Parkinson.org, “this has sparked the idea that we might be able to improve the symptoms if we change the microbiome through diet or other ways. … These bacteria play a role in the processes that produce dopamine and affect the intestine’s ability to absorb.”

Like many aspects of Parkinson’s symptoms, the protein effect is highly variable. Some people do not experience it at all. Others are extremely sensitive to protein’s effect on medication absorption. This diet concern was presented at my local PD support group, and the group’s PD warriors and caregivers agreed almost unanimously with having experienced or witnessed the adverse effects.

It typically becomes more of an issue as PD progresses. The APDA suggests that if someone experiences the protein effect, two potential strategies might help. One is to refrain from eating protein during the day, eating it at night instead, when the medication’s effect is less critical. The second is to distribute protein intake evenly throughout the day so that medication absorption is enhanced during that time.

The solution I have found that works best for me has two parts. First, I space the levodopa dosing so that it occurs between meals to minimize absorption issues. Second, I eat the day’s moderate meat meal at lunch, not dinner or breakfast.

Reducing meat in your diet may be beneficial not just to levapoda absorption. An amazing study on diet and overall health by Thomas Campbell and T. Colin Campbell, called “The China Study,” clearly showed that decreasing meat intake is a good change for all of us. Bananas and beans, not burgers.

What diet changes have you found to be helpful? Share in the comments below.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post ‘Bananas and Beans, not Burgers’: High-Protein Meals and Levodopa appeared first on Parkinson’s News Today.

Meditation and Parkinson’s Disease: Looking for Lightness of Being

meditation

Living with Parkinson’s disease is a struggle against the loss of both motor and cognitive functions. One must invest effort into an action plan that reduces the impact of the disease — a rehab plan. This effort is daily (sometimes hourly) and can be exhausting.

Living with PD is like carrying a large backpack of rocks. It is at times a crushing burden that can overwhelm. Balance needs to be established in my life so that the work I do in fighting the disease does not consume me. I must spend time looking for lightness of being to balance out the heavy PD burden. I do this through a regular practice of meditation.

There are many ways to practice meditation: sitting and listening to calming music, sitting and gazing at a fireplace, practicing tai chi, or exercising with rhythmic breathing. These practices seek to help one enter the quiet mind. It is within the quiet mind that one experiences lightness of being. Meditation helps relieve stress and focus attention — both of which are of benefit to those with PD. There are books providing instructions on how to do this, but none deal directly with PD.

Practicing meditation with PD presents some unique challenges. The meditation practice starts with calming the body, and this is the first obstacle PD complicates. Repetitive motor activities like cycling, tai chi, or gardening are helpful when combined with focused breathwork.

Focused breathwork is diaphragm breathing in which you focus your full attention on the breath. Guided meditation, either from a teacher, in person, or from a recording, can help with this process of shifting attention. This shifting of attention is the second obstacle PD complicates.

Once past the first two obstacles, you should feel a little more relaxed. This relaxed state is the path leading to the door into the quiet mind, but I am prevented from going down that path by a third obstacle.

This third obstacle is heightened emotions and difficulty in regulating them. I have written about how PD heightens the impulse signals to the brain. During the meditation process, the signal-to-noise ratio changes, meaning that as one practices quieting the mind, the noise goes down and the signals connected to emotion appear louder.

The quiet mind is a mental state that silences the noise of the world, the body, and the self while at the same time maintaining a sense of peace and safety. It is something I practiced for decades and then lost touch with over the last seven years while battling PD. As my life has become stable, I am now returning to the practice and finding it much more difficult. I feel like a novice struggling with all the obstacles I used to walk around with ease. This third obstacle does impede my looking for lightness of being.

As I have helped patients to find a place of peace and safety, together we would often experience loud emotions. These are emotions connected to things we feel (consciously or subconsciously) that need attention. They are like boulders in the path, looking like obstacles blocking the way forward to the quiet mind. But one can learn to walk around them.

Most of the folks I worked with would have several boulders to walk around and needed multiple sessions to learn how to walk around them. As I write this, I remember the tender patience I should offer to myself.

Once past the boulders of emotion, you then arrive at the doorstep of the quiet mind. PD has made looking for lightness of being much more difficult for me, but not impossible. I have memories, and recently have felt glimpses of peace and deep calmness.

Seeking lightness of being ties into my New Year’s resolution. For me to quiet down the old tapes (emotional boulders in the path), I need to have a new mental state to go to. I can’t just remove the tapes and leave a void, because that void will be quickly filled back in with the old mental habits. Looking for lightness of being will be a lifetime adventure.

What ways do you practice meditation, and how have you found it to be helpful?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Meditation and Parkinson’s Disease: Looking for Lightness of Being appeared first on Parkinson’s News Today.

A New Year’s Resolution: Quiet the Old Tapes

identity

In my column about time management, I mentioned a nagging inner voice saying, “You did not get enough done today.” That phrase ties to an old “tape,” inner dialogue left by the voices of parents and childhood teachers that says, “You are never going to amount to anything. You are a bad person.” The inner drive to continually produce is an effort on my part to quiet down this old tape. But with Parkinson’s (and getting older) the cost of this nagging inner dialogue has become too much. My New Year’s resolution is to dull this inner dialogue’s noise and intrusion.

The inner drive to always be doing something, to be productive, is also tied to identity. During the holidays, friends and family often inquire, “What have you been doing?” Doing is connected to how we describe ourselves to others, to a sense of our own identity. Parkinson’s disease (PD) consumes the time necessary for doing things that connect to identity. The sense of self begins to shift and the old tapes, once silenced by a healthily productive life, are emboldened by the disease.

Everyone has old tapes tied to memories, some more intense than others. My New Year’s resolution focuses on my most annoying tape because it damages my self-identity and it’s hard to find the self I knew before my Parkinson’s battle. Since I can’t find, feel, know, or sense my old self in the way I once did, there is an emptiness. Part of how I knew myself seems absent, and that emptiness gets filled with the noise from the old tapes. I can’t use “doing” as a functional way to address my identity anymore, so it is my New Year’s resolution to find a better way.

The search for self in the midst of PD is a winding path through the forest of symptoms and steps taken to embrace a high quality of life. It is a forest path filled with obstacles, and it can become one’s self-identity. But there is a difference between saying, “There stands that Parkinson’s guy,” and saying, “There stands Dr. C. He has Parkinson’s.” It may seem like a subtle difference, but it is important because linking one’s self-identity too closely with the disease also creates a link to negative self-dialogue: “You are a diseased person.” That raises the volume of the old tape.

The disease should never become our identity, but given how much time is spent on Parkinson’s and how much conversation is focused on it, it is difficult not to become the disease. The cognitive aspects of PD also make it harder to stay in touch with healthy self-identity. Who am I? How do others view me now that I have this disease? Answers to these two questions help me to keep in touch with the Dr. C alternate identity I have developed and strengthened over four decades. Yes, this self-identity includes PD, but it is something that has happened to me rather than something I have become. Also, replacing negative internal dialogue with positive internal dialogue has been a regular practice, though it seems a bit harder these days.

This New Year’s resolution is sent to me, to Dr. C, who is struggling to sit with a healthy sense of self. It is a resolution wish sent along with a lightness, a gentle touch. It is sent with hope, kindness, and an infinite well of patience. I share the same resolution with all those who read this column along with compassionate blessings for your new year.

Do you have old tapes that interfere in your life?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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The Pac-Man Cometh: Parkinson’s Disease Gobbles Up Time

pac-man

I used to be able to put long hours into just about anything I tackled: research, teaching, helping others, painting, writing, and gardening. But PD gobbles up time, just like the video game character Pac-Man gobbles up dots while chasing ghosts. Although I’m retired, I have less free time to accomplish personal goals, because every day, the PD Pac-Man cometh.

Following is a list of ways the PD Pac-Man gobbles up my time:

  • Bad days and “off periods” requiring a commitment of time to manage.
  • Medical appointments and traveling to them take time.
  • Pain and deep fatigue require more rest to help manage them.
  • Any illness (such as the flu) becomes more intense and takes more time to recover.
  • Heightened emotions along with stress of any kind (good or bad) require more time to manage.
  • The overall rehabilitation plan to address all the issues associated with PD (which I have mentioned in past columns) requires quite a bit of time.

Many evenings, as I get to the end of the day, it feels as if nothing was accomplished. It is a plaguing voice and annoying not just to me. My partner has heard it so many times that the response is now: “I’m going to have that on your tombstone: ‘Here lies Dr. C. He died wishing he got more done in his life.’”

Tons of magazine articles and books discuss time management. But PD has its own special problems that need to be considered when seeking to apply time management strategies. Think of time as money: You only have so much that you can spend each month. You can’t get back what the Pac Man gobbles up. You can decrease what the Pac-Man consumes by implementing a personally tailored rehabilitation plan. After that, it is important to cherish the time that is available and to allocate it in a meaningful and constructive way.

Misdirected attention is the Ms. Pac-Man of PD. It consumes time in two ways: First, by getting us to be off-task, and second, due to the set-shifting problems connected to scenario looping, we can end up staying off-task. It may even feel quite difficult to get back on-task (see my previous column on apathy reconsidered).

After physical exercise and good medical care, mental attentiveness is the third most important treatment focal point for early PD folks. Like physical exercise, mental attentiveness needs to be practiced daily. This is one of the reasons I recommend virtual reality game-playing.

Capitalize on using the good days, and the good hours in a day, when they occur. Without being fierce about it, jump into those good days and focus on accomplishing tasks that have rich meaning and purpose. At times during the illness, the mind is more lucid. Use those times wisely with directed attention. Be patient and allow those times to arrive.

Be flexible on the mild days. Get done what you can and then be willing to rest. On the bad days (and especially the ugly days), be willing to let it go. As boring as it seems, rest is needed to limit the extent of the bad days.

With these suggestions in place, make a schedule. Make broad goals and then weekly goals. Use those good times during the week to apply yourself with mental attentiveness to those goals. This is a little bit different than saying, “On Monday, I will do this and on Tuesday, that.” Instead, make a flexible schedule that says, “I would like to get this done by the end of the week.” Then, when the good and lucid times arrive, you can apply yourself to getting that weekly goal done. I write these columns that way.

Finally, keeping track of appointments on a calendar (paper, computer, and cellphone) is important. It helps to know when you will be able to apply those good days to your weekly goal.

How does the PD Pac-Man affect your life? What do you do to keep the PD Pac-Man from gobbling up too much of your free time? Share in the comments below.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post The Pac-Man Cometh: Parkinson’s Disease Gobbles Up Time appeared first on Parkinson’s News Today.

Taking a Careful Look at Apathy: It Could Be Motor Hesitation

apathy

Depression is often associated with Parkinson’s disease (PD), as is apathy. But there may be a subtle difference between the two. At the risk of oversimplifying, let’s define depression as a state of sadness and loss of interest, and apathy as an apparent lack of motivation. Put sadness and low motivation together and the result looks like someone who has stopped enjoying life. But linking the two together may be a mistake when PD is involved because what looks like a lack of motivation may be the result of motor hesitation and difficulty with set shifting (changing from one motor activity to another). I have seen this motor hesitation in my own life. I feel stuck; not because of a lack of desire but rather an inability to move. It requires a careful examination to recognize the difference.

In a previous column, I talked about scenario looping breakdowns in connection to freezing — a common PD motor symptom. Apathy with PD folks may be linked more to scenario looping breakdowns than to a mood disorder. With PD it speaks to the “unwillingness” to act. But with a breakdown in scenario looping, it may appear as the unwillingness to act when it is actually a form of freezing due to an organic neurological condition. Combine this with the “flat affect face” or facial masking that can come with PD and it can appear to the observer as apathy. A careful look may reveal that often it is not. It is a manifestation of scenario looping breakdowns.

Scenario looping is the brain’s ability to loop through scenarios, exchanging possible actions or responses, until the best course has been determined. This happens with use of language and with motor actions. In every case, the scenario has a starting point. If there is no external cue from the environment to get started, we call that spontaneous initiation; an example is engaging in speech with your partner. You wouldn’t always want to wait until your partner speaks first or provides an external cue. In a normal relationship, each person will often initiate speech spontaneously without external cueing. Patients who have damage to areas of the brain responsible for scenario looping will frequently have problems with spontaneous speech. Does this mean that they are apathetic?

Spontaneously starting a new motor sequence may be difficult for some PD patients. Another example: My partner wants me to put up a new curtain rod. This involves a series of motor tasks: getting the tools and step stool, removing the old curtain rod, and using small screws. These actions involve the use of fine motor skills which are always difficult for those with PD. The curtain rod has been leaning against the wall for a week. Is it apathy that prevents me from engaging in the task? Is it fear? It doesn’t feel that way. It feels like a physical resistance to move my body in the direction of that given sequence of motor actions. PD patients often have motor action hesitancy, and this may be misinterpreted as apathy. In a chapter of “Parkinson’s Disease: Diagnosis and Clinical Management,” Lisa M. Shulman and Mackenzie Carpenter say that great care needs to be taken when ascribing the symptom of apathy to a PD patient, and that more research is necessary.

I need to be taking that careful look, to be clear in my mind that this is motor hesitancy. Doing so will ensure that scenario looping breakdown does not become apathy in my mind, or in the minds of those who care for me. There is a risk of mentally interpreting the motor resistance as “he doesn’t care.” The distinction is very important, and I spend time in mental contemplation making the distinction clear. Muscle hesitancy and difficulty with initiating motor sequences is not apathy. Understanding the difference between apathy and scenario looping breakdown is an opportunity to reframe and enlighten. Taking the time to contemplate on the difference is time well spent.

Write a comment and tell me if you see a difference between apathy and muscle initiation in your own life. Do you have suggestions on how to use this distinction to improve your quality of life?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Taking a Careful Look at Apathy: It Could Be Motor Hesitation

apathy

Depression is often associated with Parkinson’s disease (PD), as is apathy. But there may be a subtle difference between the two. At the risk of oversimplifying, let’s define depression as a state of sadness and loss of interest, and apathy as an apparent lack of motivation. Put sadness and low motivation together and the result looks like someone who has stopped enjoying life. But linking the two together may be a mistake when PD is involved because what looks like a lack of motivation may be the result of motor hesitation and difficulty with set shifting (changing from one motor activity to another). I have seen this motor hesitation in my own life. I feel stuck; not because of a lack of desire but rather an inability to move. It requires a careful examination to recognize the difference.

In a previous column, I talked about scenario looping breakdowns in connection to freezing — a common PD motor symptom. Apathy with PD folks may be linked more to scenario looping breakdowns than to a mood disorder. With PD it speaks to the “unwillingness” to act. But with a breakdown in scenario looping, it may appear as the unwillingness to act when it is actually a form of freezing due to an organic neurological condition. Combine this with the “flat affect face” or facial masking that can come with PD and it can appear to the observer as apathy. A careful look may reveal that often it is not. It is a manifestation of scenario looping breakdowns.

Scenario looping is the brain’s ability to loop through scenarios, exchanging possible actions or responses, until the best course has been determined. This happens with use of language and with motor actions. In every case, the scenario has a starting point. If there is no external cue from the environment to get started, we call that spontaneous initiation; an example is engaging in speech with your partner. You wouldn’t always want to wait until your partner speaks first or provides an external cue. In a normal relationship, each person will often initiate speech spontaneously without external cueing. Patients who have damage to areas of the brain responsible for scenario looping will frequently have problems with spontaneous speech. Does this mean that they are apathetic?

Spontaneously starting a new motor sequence may be difficult for some PD patients. Another example: My partner wants me to put up a new curtain rod. This involves a series of motor tasks: getting the tools and step stool, removing the old curtain rod, and using small screws. These actions involve the use of fine motor skills which are always difficult for those with PD. The curtain rod has been leaning against the wall for a week. Is it apathy that prevents me from engaging in the task? Is it fear? It doesn’t feel that way. It feels like a physical resistance to move my body in the direction of that given sequence of motor actions. PD patients often have motor action hesitancy, and this may be misinterpreted as apathy. In a chapter of “Parkinson’s Disease: Diagnosis and Clinical Management,” Lisa M. Shulman and Mackenzie Carpenter say that great care needs to be taken when ascribing the symptom of apathy to a PD patient, and that more research is necessary.

I need to be taking that careful look, to be clear in my mind that this is motor hesitancy. Doing so will ensure that scenario looping breakdown does not become apathy in my mind, or in the minds of those who care for me. There is a risk of mentally interpreting the motor resistance as “he doesn’t care.” The distinction is very important, and I spend time in mental contemplation making the distinction clear. Muscle hesitancy and difficulty with initiating motor sequences is not apathy. Understanding the difference between apathy and scenario looping breakdown is an opportunity to reframe and enlighten. Taking the time to contemplate on the difference is time well spent.

Write a comment and tell me if you see a difference between apathy and muscle initiation in your own life. Do you have suggestions on how to use this distinction to improve your quality of life?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Taking a Careful Look at Apathy: It Could Be Motor Hesitation appeared first on Parkinson’s News Today.

Foot Problems as an Early Sign of PD: Oh, What a Drag It Is!

foot drag

Search on the internet for early signs of Parkinson’s disease. Surprisingly, you will not find foot drag on most of the lists. Yet, Ali Samil, in the chapter “Cardinal Features of Early Parkinson’s Disease,” in the book “Parkinson’s Disease: Diagnosis and Clinical Management,” lists foot drag as an important early symptom.

I have been dealing with foot drag for a few years — that squeak of the sneaker on the kitchen floor when the foot drag catches, scuff marks left behind. While at a professional conference, the foot drag caught the top edge of a stair just as I was headed down, and down I went, grasping the handrail to rescue an awful fall. Recently, it has been much worse, and oh, what a drag it is now.

Reflecting on it, it seems almost impossible that I could seriously hurt my foot walking on a flat, carpeted surface with no obstacles in the way. But that is exactly what happened. Walking barefoot on a carpeted floor, my foot dragged, and then my big toe jammed into the carpet — HARD! I screamed, tears flowed, and I fell to the floor weeping from the pain. The toe turned a nice purple shortly thereafter, but luckily nothing was broken. I don’t walk barefoot anywhere now, except for a few steps in and out of the shower.

I am surprised that there is not more mention of foot drag in the lists of early PD symptoms. If it is a cardinal early symptom, then both patients and care providers should be given the heads up (or maybe feet down), along with some guidelines on how to adjust.

If a patient does have this symptom, then perhaps it doesn’t show up all the time, but rather only during off periods and deep fatigue. If the patient has a favorite pair of shoes, then perhaps signs of the foot drag can be seen on the wear pattern in the shoes.

The indications of foot drag problems don’t have to be as dramatic as my story before they become something that needs attention. My attention is given to the footwear I purchase, limiting my walking during deep fatigue, and carefully watching my feet when changing surface levels (such as a curb on sidewalks).

Maybe there are readers out there who have dealt with foot drag and have a story to tell with suggestions about how to cope. Next time someone says to you, “Quit dragging your feet on this,” tell them about this column.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Foot Problems as an Early Sign of PD: Oh, What a Drag It Is! appeared first on Parkinson’s News Today.