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Making Meaning of It All

well-being

Wellness map in hand, I pass through the fog of conflict that is my life and agree to enter sanctuary. I surrender myself to experiences of bliss and well-being.

Caressed by calmness, the fog has lifted. Like a crisp fall day, the colors are vibrant and the view breathtaking. In the distance is something not seen before. This is the destination toward which I must strive. It beckons to me, constantly whispering in my ear, “Come to me and discover what you need.”

It’s all making sense.

Our brains are wired to make connections. Not just neural ones, but associative ones. When we have a new experience, we associate it with memories of similar events. The further the new experience is from the known, the more difficult the association.

An experience that supports our well-being can be so different from any in our history that an association is difficult. It is so difficult that we procrastinate. “I can’t make sense of this, so I’m not going to do anything about it until I can.” It’s a cautious approach I’ve taken many times in my life. Eventually, I get splinters from sitting on the fence too long.

Greek philosopher Epicurus believed that happiness comprises friendship, freedom from everyday life and politics, and time and space to think things through. Epicurus would not advise spending money as temporary relief for a bad day. He would suggest taking time to reflect and contemplate.

Socrates had a different stance, as evidenced by his dictum: “The unexamined life is not worth living.” Socrates believed you should review and examine every aspect of your life to get the best out of it. A life bereft of meaning and purpose lacks action guided by that purpose. Meaning and purpose are part of a healthy self-concept.

Making sense of a well-being moment can be challenging. They are often scarce, and we have little experience with them. But well-being moments always come with useful information. Without that, they are just “feel-good” moments.

Taking that information and turning it into wisdom for a lifetime requires wrestling with it, using it, and integrating it into life — use it or lose it. It helps to have an experienced guide. Teachers of mystic traditions suggest mentoring in a sanctuary as one way to assist in the meaning-making process.

How we make sense of everything is vital to our movement forward, against the challenges, the setbacks, and the frailty that we encounter. Making sense of it gives us meaning and purpose throughout our journey with Parkinson’s disease, and the rest of our lives.

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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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Letting Go Is Not ‘Forever Gone’

letting go

“Letting go” is a constant theme with Parkinson’s disease. What used to be easy is now challenging. Gone are my days of hiking for miles or spending hours in the gardens digging, hauling, lifting. Those times when 24 hours of project immersion got me through complex problem-solving and four college diplomas are over. I can’t do it the same way anymore. Giving up these expectations of myself has not been easy, and the process of letting go always presents itself at sanctuary’s door. It is never entirely gone.

Psychology Today columnist Judith Sills, PhD, explains that we tend to get stuck in our past, but by letting go we can move forward. “It’s an axiom of psychology that we are some recombination of all of our yesterdays. To move forward wisely, we are therefore often urged to look back. But there’s a point where appreciation and analysis of the past become gum on your psychological shoe. It sticks you in place, impedes forward motion, and, like gum, it doesn’t just disappear on its own. You need to do some scraping.”

American poet and philosopher Ralph Waldo Emerson said, “A foolish consistency is the hobgoblin of little minds.” When you can’t let go, you are haunted by the hobgoblin. If you let go and have nothing to replace it, the hobgoblin will rush to fill the void. Sanctuary holds safety and sacredness in place of the void allowing the possibility of well-being to unfold.

Letting go is learning to live with the bad things that happen — not by eradicating memory, but by shifting attention and perception. In my quest to let go and accommodate chronic Parkinson’s symptoms, I turn to sanctuary. I know when I am using sanctuary appropriately because I run smack into resistance. It is extremely hard to let go of old habits, old scars, and old voices playing on old tapes. The path of letting go is full of detours and wrong turns. I’m always learning more about how to let go. It is a process, and it’s never done.

Writing on Psych Central, John M. Grohol identifies some key steps in the “letting go” process:

  1. Decide to let it go.
  2. Express your pain — and your responsibility.
  3. Stop being the victim and blaming others.
  4. Focus on the present — the here and now — and joy.
  5. Forgive others and yourself.

Throughout our lives, much of our self-identity is defined by what we do rather than who we are. Strip away the things that we could do, and we feel naked without the career clothes we used to wear. Social conversation often turns to, “What do you do for a living?” I want to reply, “I’m just trying to survive.” People who still see me as the person I was can’t see my struggle with letting go that drains my energy and creates overwhelming fatigue.

Family, friends, and some medical providers often do not fully understand how letting go carves away the substance of identity, whittling it down to a splinter. The following quote sums it up for me: “Those who mind don’t matter and those who matter don’t mind.” It results in more loss thrown on a plate already overflowing with dead bones.

Letting go occurs for me on many levels, affecting my sensations, emotions, thoughts, and pain. Sanctuary is not merely a place to “feel good.” It gives me the strength and calmness to face my demons, mourn losses, move forward into the future, and find peace with myself and those around me. Letting go is not losing entire memories even when they’re interwoven with the hard times. Letting go is not forever gone. It remains at sanctuary’s door opening the possibility of well-being.

 

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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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A Scientific Model of Sanctuary Helps Me to Overcome Resistance

model

Each time I seek sanctuary, I face resistance. But fortunately, I’ve found a model of sanctuary that helps me to overcome that resistance.

The other day, I watched a lecture by cognitive neuroscientist Indre Viskontas, which was part of the video series “Brain Myths Exploded.” She spoke about the brain as having a continuous level of background noise, and conscious attention is given only to those stimuli that can break through that noise. The idea resonates with my theory of how a quiet mind can affect pain management. I hadn’t painted my brain model that way before, but I like the new colors.

Since my discovery of that concept, the signal-to-noise ratio idea crawled its way through my neural web of interwoven knowledge of various types of attention and their application to chronic disease recovery. We can link the practice of using sanctuary to promote well-being to the method of redirecting attention, including shifting perspective. Parkinson’s disease affects brain areas that are responsible for moderating emotions and attention and that also deal with stress and overlearned motor sequences.

I am less troubled by these chronic disease issues when sanctuary is in my life. Following is a model of how sanctuary works:

The model’s foundation comprises a set of assumptions that we agree to be true:

  • It’s alive!: The brain generates electrical and chemical energy and is either “on” or “off.” The latter implies brain death.
  • Brain specialization: Particular areas of the brain are responsible for specific functions, such as motor memory, pain awareness, sensory input, and motor control.
  • Use it or lose it: Use or nonuse of the brain correlates with neural branching or snipping. More branches correspond with improved functioning of that brain area and better communication with other brain areas. The more you use it, the easier it is to use. If you don’t use it, then it’s hard to overcome the resistance.
  • Consciousness is attention to signals above the noise: The brain is continually processing neurochemical signals that create a level of internal background noise — much of it subconscious. We attend to the signals we deem to be the most important.

The main body of the model is built on top of the foundation and provides some understanding of how sanctuary works to promote lasting changes in well-being. This part of the model includes:

  • Conscious perception is unfixed. The level at which signals exceed noise and become conscious perception is not set. The point at which we are aware of the stimuli coming into our brain changes based on the demands of the situation and our experiences with altered mental states — including lucid dreaming and mystic practices like deep meditation. At times, we are hyper-alert and time seems to slow down.
  • Perception of “noise” is changeable. The behavior of the “noise” can be altered through meditative practices. Instead of standing in an ocean with raging waves of noise, we can be dwelling in still waters. Changing the way that we hear noise alters the way that we perceive life.
  • Threshold tolerance levels can be altered. A signal threshold tolerance exists, which when exceeded, will result in dysregulated emotions. Meditative practices can increase threshold levels, and unhealthy practices can lead to a lower threshold tolerance.

The final piece of the scientific model of sanctuary is the practice of early detection. By using sanctuary to provide an early warning, we can avoid the consequences of dysregulated emotions. The development of an early warning system has a significant impact on wellness. The sooner I can detect an abnormal increase in signal intensity — pushing me over the top and leading to the possibility of my spinning out of control — the more likely my success at controlling the threshold will be.

Sanctuary works because it supports my internal early detection system. This happens because of shifts in attention, perception, and possibility of change. Shifting into the “between” is a new way of seeing old problems or models.

The three most important steps I can take to manage my chronic disease are:

  1. Have the best medical team in place.
  2. Exercise, sleep, and eat well.
  3. Practice using sanctuary in combination with a wellness map.

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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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Stress Can Result in Resisting Sanctuary

sanctuary

BOOM! Abruptly out of bed, I’m disoriented by flashing lights reflecting on the bedroom walls. I sit on the edge of the bed and look out onto what should be morning sun, bringing to life the cheery reds of bee balm against a backdrop of white birches. Instead, the sky is black. I thought it was night, but the clock says it’s morning. Rain hammers out a discordant melody on our metal roof. It’s a gloomy, wet, cold day. It sure would be nice to stay curled up under the covers.

Neo shouts at a volume comparable to the thunder, “Heck, no! You have only two days until your big research presentation.”

I snap back, “I know! I know!” The cotton oasis beckons me to go fetal. Neo is quite annoyed with me.

“What are you thinking?” Neo inquires.

“Oh, nothing. You’re right. I should look over the presentation, but I can’t get motivated to do so. I’m so nervous that I can’t even turn on my computer,” I say, almost in a whisper, as I reach to pull the covers over myself.

“Oh, no, you don’t. Get out of bed and let’s face this fear. What’s there to be afraid of? You know the material and you enjoy public speaking.” Neo doesn’t understand this latest development in my Parkinson’s.

I retort, “It’s not that at all. It’s about my physical ability to do it. This summer, my Parkinson’s symptoms got worse, and there are times when I cannot perform motor tasks. There is nothing I can do to stop these motor dysfunctions. What if one happens right when it’s my turn to stand and give my presentation?”

“So your fear of failure due to the possibility of motor freezing is preventing you from doing anything at all?” Neo replies with a slight sneer.

Somewhat defeated, I offer, “I could go back to bed.”

Neo points out, “That’s not going to solve anything. Why not enter your sanctuary for a while? You know that helps.” He is saying what I already know, but it is not motivating me to act.

“Really?” I counter. “Look outside. It’s not exactly walk-in-the-park weather. Besides, my focus should be on how to make my presentation better.” I move to the bathroom and start getting ready for the day.

Neo insists, “Embracing sanctuary is not affected by the weather. Your senses and your mind can still take in all that sanctuary offers, even in the rain.”

I feel my emotions start to escalate. “I don’t feel like calming down. I need the emotional energy to light up enough passion so I can break the chain of procrastination and the fears about my Parkinson’s symptoms.” I dress and head to the kitchen for breakfast.

Neo surveys my actions as I drop part of my breakfast on the floor. “You think you are more physically capable if you are all energized and full of passion?” It’s a good thing Neo is incorporeal and safe from any unintended physical harm.

“I—” Pausing, I stare off at nothing in particular. “I guess not. But it feels familiar and, in that way, safe. I can’t quiet down enough to use sanctuary right now. Each time I move toward quieting, the pain gets so loud it’s unbearable. That’s certainly not conducive to getting my presentation ready.” I pace the floor as I continue to mutter about the presentation that’s due in two days.

Neo points out the obvious: “Man, you are seriously stressed.” He is adept at recognizing when the situation is going downhill quickly. “Time in the sanctuary does help with stress. You know that stress unattended will just intensify all your Parkinson’s symptoms — physical, mental, emotional, and psychological. That big rock you’re throwing at yourself creates too many ripples in the pond.”

Between mouthfuls of granola and orange juice, I say, “I don’t have the time. Perhaps another day I could handle this. I can’t look at that reflecting pond right now. I’m afraid that I will hate what I see.”

“I know,” Neo says. “The path is always here when you want to walk it, and I’m with you.” Neo and I watch the rain let up, leaving behind garden flowers painted with iridescent droplets that reflect the beams of sunlight poking through the storm clouds.

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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 Stress Can Result in Resisting Sanctuary appeared first on Parkinson’s News Today.

Embracing the Beauty and Serenity of My Sanctuary

sanctuary

Sunlight bounces its way through the swaying birches, projecting a shadow picture show on the lawn and garden shed. A light wind causes the fluttering leaves to sing in unison like waves on the shore. A family of hummingbirds — we have given all of them names now — take turns to show off their aerial ballet at the feeder, a few feet from my rocking chair. The gardens are still blooming with cranberry-red coneflowers nestled between large-cupped orange and yellow day lilies. In the distance, I hear the sweet, calming vibrato of our brook. It beckons me to embrace the support revealed within my sanctuary.

Sanctuary can be found and created anywhere. It doesn’t have to be Walden Pond or resemble my description. What is important is the frame of mind used when accessing sanctuary. Sanctuary is that place where the saying, “You get back out what you put in,” truly applies. If I can embrace the awe and beauty of my sanctuary while also experiencing its solitude, safety, serenity, and sacredness, then I know that I am in the right frame of mind.

Sanctuary is more than a sacred physical place. The physical merely signals the senses to be ready for the well-being phenomena. The physical sanctuary supports the emotional and spiritual sanctuary. It is from this inner stance that I seek calm and a trusting openness, and prepare to experience the journey. I have a relationship with my sanctuary, and this “agreement” is the first step to incorporating sanctuary into a wellness plan.

Architects realize the importance of creating healthy living and work environments. Designs for buildings and the areas they occupy, whether in a rural or urban setting, are incorporating a sense of sanctuary for well-being. Providing for “green space,” buffers, and integration with the natural environment are key concepts for architects. “Architecture helps shape the quality of our environments and can contribute to health and happiness,” writes Karl Johnson in the Guardian. Sanctuary is rooted in the beauty of nature. The “N” in the CHRONDI Creed, stands for “nature” and its health benefits.

Let me share my story of sanctuary. The week had been hectic, even busier than usual. It started with a trip to my general medical provider’s office for fasting lab work. It’s almost a two-hour drive on an empty stomach until after the labs are drawn, which throws off my Parkinson’s medications. The next day, we took a trip to Boston for my appointment at a Veterans Affairs healthcare facility. That trip takes two days, so we usually drive down the day before the appointment to break up the journey. We stay at a hotel, then arise the next morning to complete the four-hour drive to the clinic.

The appointments are never fun. At least this one didn’t require the providers to poke, prod, or inject. Well, maybe some poking, but no injections. Then we drove home, another four hours on the road. With my rigid Parkinson’s, every minute of travel increases my discomfort. No time to rest because I’m back at the doctor’s office a day later for the lab results.

The day after the doctor’s appointment, we run errands, and my partner hand-delivers her application to the state offices for “designated caregiver” status. We didn’t have the energy to attend a live theater presentation on Galileo or the monthly get-together for the New England Santa Society. Or celebrate our anniversary. We make decisions every week about where to spend our free time; this includes letting go of some plans in favor of time spent with sanctuary.

Weeks like the one that I describe are more difficult for me. I require several days to recuperate and recover. The fatigue is almost overwhelming, preventing me from returning to my projects as much as I would like. My mind is tired, my body drained, and my soul seeks out my sanctuary. I don’t need to have faith that sanctuary will help; I know from personal experience that it will.

You can create a sanctuary in your home, in a favorite room or comfortable chair. You can build a garden along a walkway. Perhaps you will find, as I do, that I can create several different areas, each unique to the landscape, plants, and season. I enjoy the beauty of each special place within my quiet sanctuary. What is important is your ability to embrace that special sacred physical place, the sanctuary that offers you the greatest support for well-being.

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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 Embracing the Beauty and Serenity of My Sanctuary appeared first on Parkinson’s News Today.

The Role of Sanctuary in Life with Parkinson’s

sanctuary

“The mass of men lead lives of quiet desperation,” wrote Henry David Thoreau while sitting on the edge of Walden Pond.

We live in a post-9/11 world where income disparity threatens the pillars of well-being in democratic nations. Kings of the oligarchy are viewed as pallbearers to the American dream.* Lost hope, anxiety, and absence of discernment fuel the flames of desperation. But exposure to the world doesn’t mean we need to become like the world. Instead, we can find peace in sanctuary.

A writer and philosopher, Thoreau lived self-sufficiently in a cabin he built himself — what we now refer to as “off the grid.” He wanted to see if it was possible to break the chains of desperation by choosing to live a simple, unencumbered life. Thoreau paid homage to the existential mystics and philosophers before him who found the true self only through the death of the ego. Letting go of old ways is not easy, but the rebirth process can be enveloped and nurtured in a healthy sanctuary.

Sacred healing places are part of the human experience. These sanctuaries exist all over the world and are utilized by a variety of cultures. Thoreau might argue against my calling Walden Pond a sanctuary, but the reverence he held for the place and the support it offered during his metaphysical journal fits my concept of a sanctuary.

You don’t have to don a bearskin while running to the outhouse on a frosty morning to enjoy the benefits of a sanctuary. The beauty and sacredness of sanctuary can be created almost anywhere if we think of it as a special place of reverence, where we find rejuvenation. First, we must set aside time throughout the day to embrace our sanctuary. Then, we can gradually eliminate the worldly toxins that creep into our lives, replacing them with beauty that inspires an internal shift toward well-being.

Sanctuary has always had its roots in the natural world, like a garden or a park (the “N” in the CHRONDI Creed). But sanctuary is also found in the mind, soul, and heart. My sanctuary is a holistic healing space that helps me manage pain and the “off” periods that come with Parkinson’s, as well as mitigate the negative effects of a bad day.

Most importantly, sanctuary is a safe place in which to let go of life’s stresses. You don’t need to be an aesthetic — someone who gives up worldly pleasures – to embrace moments of well-being within a sanctuary. It is more about letting go of our attachment to things, as attachments constrain our freedom and limit our access to the full benefits of sanctuary.

The question I ask myself is, “Would you walk away from all that you own to better understand the voice crying in the wilderness?” Twice in my life, I have done exactly that. It was not an easy decision for my family, as there were moments of voluntary poverty, but it is not the poverty that brings the radiance of sanctuary into view. It is the ability to let go.

In my research on advanced empathy, I described a series of experiences that are common to the healer (practitioner) and the patient (participant) when sharing a facilitated well-being moment. They are:

  • Agreement: The practitioner and participant reach a mutual agreement regarding the purpose of the relationship.
  • Resistance: There is always resistance to sitting in a sacred space to experience well-being. This resistance can be explored if the sanctuary is seen as safe, and there is trust in the possibility of well-being as an outcome.
  • Letting go: Catharsis is facilitated.
  • Well-being: Moments of well-being are experienced.
  • Meaning: Both participants derive meaning from the experience.

All five of these experiences are enhanced when the participant and the practitioner are surrounded by and have embraced the sacredness of sanctuary. In the same way, our individual journey of wellness mapmaking is enhanced by sanctuary. It starts with an agreement on defining your personal sanctuary, your relationship to it, and how to use it.

The next few columns will explore how to use sanctuary. For now, share with our readers a description of your sanctuary.

*The baby boomer generation has been asked, “Do you think your children will have a better life than you?” Only a minority answer in the affirmative.

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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 Role of Sanctuary in Life with Parkinson’s appeared first on Parkinson’s News Today.

Our Idea of Fun Is Sharing Moments Together

fun

“Fun” is an F-word that doesn’t have a strong history in our home. My partner and I are from the “nose to the grindstone, make it happen, pursue the American dream” generation. Oh, and we try to live up to the adage “Become the change you wish to see in the world.” We can be intense.

With all those noble ideals, we find that doing fun things is very difficult. We don’t know how people take fun vacations. We have never been successful at doing that. Sure, we want to have fun times in our retirement years, but through all the chronic illness time commitments, chasing that little F-word requires more tweaks in the wellness map.

To illustrate how we can’t accomplish the standard idea of fun, I share this story about our attempts at a honeymoon. The first one — the one usually planned by newlyweds — never happened because my wallet was stolen at the wedding reception. There’s no traveling without credit cards or identification. Four years later, we tried for a second honeymoon. During an idyllic trip to Maine, my wife developed a tremendous migraine — her first — so we cut the trip short.

Twenty years into our marriage, we tried to combine a job relocation/house-hunting expedition/vacation at my new job site in Reno, Nevada, with a stay at a casino. We had the heart-shaped velvet bed and all expenses were paid by the company, but our minds were on finding a rental unit quickly and coordinating a 1,500-mile relocation with the movers. It was the last time we used other people’s definitions of fun as our own.

Forty years post-nuptials, we were more successful in combining a trip to Arizona for a friend’s wedding with exploring the countryside and downtown Phoenix. There were no demands on our time other than dealing with chronic disease symptoms.

Changing behaviors that are so deeply ingrained in our lives is what tweaking the wellness map is all about, and it is never easy. We give ourselves permission to have fun and yet, at the same time, we must balance our plans with our ability to achieve it.

Once, we could be more spontaneous or at least show up for activities that had been on the calendar for weeks. Now, we tentatively agree to be somewhere, but roll with the day when it arrives. We wake up knowing that each day must be faced as it presents itself. If we just don’t have the energy or physical ability to meet that obligation, we change the date and try to not feel guilty.

It may seem strange to give ourselves permission to have fun, but we do this every day. If we listen only to that inner worker voice, then each day is just about the quest to accomplish something. “One more thing off the list!” my wife says, with as much glee as the Queen of Hearts in “Alice in Wonderland” ordering heads to be chopped off.

But there is a new voice now. We still wake every day asking ourselves (and each other), “What are we going to accomplish today?” But we know we must be flexible. Is this going to be a good day with enough energy to do what is on the schedule? We give ourselves permission to decline or reschedule activities based on how the day unfolds.

The new normal of traveling with a chronic disease requires a separate medication bag, pillows and a cover in the back seat of the car for those off periods, a cane for days when balance and coordination are a problem, a driving schedule that allows a more leisurely pace, and a calendar that tries not to make too many commitments in a week. We try to plan one meal at a restaurant to take a break from the drive, pull over more frequently at rest areas on the interstates, or make hotel accommodations for the night to rest before tackling the next day’s commitment. More tweaking of the wellness map.

Perhaps we really do have fun. It’s just different from how other folks define it. Playtime and time experiencing a lightness of being are both part of fun and adjusting to Parkinson’s, but so is creativity. Fun is gardening, walking our forest path, genealogy, writing, reading, organizing our mineral collection, watching a movie, and just being together to share the journey. We find our fun applying our talents to creative projects and shared moments together, and not letting chronic disease ruin the day.

How do you find fun 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 Our Idea of Fun Is Sharing Moments Together appeared first on Parkinson’s News Today.

Explaining, Not Complaining: A New Approach to Pain

new approach

Pain visits me all the time now. There are multiple days when high pain levels make me nauseated. I am sick and tired of having to say how sick and tired I feel. I’m experimenting with a new approach: responding to the pain in a dispassionate way, making observations, and providing explanations.

Neo (my neocortex, mentioned in a previous column) snickers, “Who are you kidding? You can’t sit with five days of high pain without the Grouch showing up and leaving behind a trail of consequences.” Neo tends to be a bit of a naysayer, much like Eeyore in the books about Winnie-the-Pooh, by A.A. Milne.

“Not true,” I quickly retort. “For the last two five-day stretches of bad pain, I did not let the Grouch speak in public. My partner shared her sincere gratitude on this accomplishment. It makes it easier on her and makes the home less stressful, decreasing my total pain level.”

Neo replies, “I’m not talking about just zipping the lip. I’m talking about that inner dialog, the way you speak about the high levels of pain to yourself. What happened the other night after five days with high pain?”

I let out a deep sigh. “That was a difficult night, following a difficult week. It seemed like so many events were crashing around me. I tried to quiet my thoughts, but the pain was too loud, overpowering. Eventually, it consumed me.”

Neo challenges my perception. “Did you hear how you talked to yourself about this high-pain experience?”

Reflecting, I admit, “Yep. With every pain surge, I complained about how miserable I felt. There wasn’t an external Grouch for others to see, but he showed up in my thoughts — a lot!”

“Exactly!” Neo exclaims. “It is the Grouch you have to change if you seek improved well-being. It’s easy to complain, and you have plenty of company on social media. But finding a different path, implementing healthy solutions — that’s where the hard work happens.”

I’ve seen glimmers of a different inner dialog. Rather than reacting to the high pain, I should be sitting in the “pause between” and observing it with as little emotion as possible; analyzing the pain and reporting back to Neo like a journalist covering a story. A new inner dialog needs to develop to keep the Grouch at bay. It’s a dialog about being caressed by calmness, about knowing this is possible at any time and making calmness the focus of my attention.

“Nice idealism,” Neo says, waving his brain neurons at me. “You know you haven’t been fully successful at this yet.”

I sigh, “True, I haven’t achieved a perfect day. Maybe I never will. But I am trying to improve every day.” Taking a deep breath to calm the emotions Neo has stirred by pointing out my failings, I continue, “I also find that seeking quietude in the pause between helps me. I’m facing one day at a time while doing all I can to implement a new pattern of thought and behavior. I’m just taking small, incremental steps right now, but I’m happy with the progress.”

Neo reminds me in that Eeyore tone, “You know how hard this is to accomplish.”

I stand, move to the windows and look out on the perennial gardens. The summer colors are starting to diminish, but the plants still have plenty of blooms. “You know, Neo,” I say calmly, “Life is like gardening in many ways. Take a shovelful of dirt, arrange plants by complementary colors, and lay a broad, level path to walk, pause, and enjoy. Showing up and accomplishing those baby steps every day eventually brings forth a garden of wonder and delight.”

Neo and I are quiet together while we walk the garden path.

***

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 Explaining, Not Complaining: A New Approach to Pain appeared first on Parkinson’s News Today.

Caressed by Calmness: An Extended Well-being Moment

calmness

Wow! That was intense. I was just sitting in the “pause between” with no expectation beyond a quiet mind, allowing the moment to bloom. Suddenly, the moment transformed into this encompassing sense of being caressed by calmness. Even more surprising, the calm stayed with me for part of the day, and it came with the near absence of pain.

The experience was not that long — minutes, not hours — but long enough for me to recognize it was an extended well-being moment. During the daily routine of morning self-care and household chores, the memory of it stayed with me. I thought my Parkinson’s had taken this from me. It’s been many years since the last time I felt such radiant calmness.

Weeks after calmness caressed me, I became emotionally upset after a rough stretch, during which I experienced multiple stressful events back to back. Having the option to revisit the calmness during these trying weeks would have been very nice, but nothing I tried led me back to those calm moments. I asked myself, “You had this soothing experience — so what? What good is it if you can’t get back there?”

The extended well-being moment left behind bits and pieces of memory that were fading with time. Just two weeks after the experience, any attempts to rekindle the memory lacked the clarity and healing power of the original experience. Therein was the problem: I couldn’t easily return to revisit, nor could I recreate it in memory, so what good was this experience?

The benefit is found in understanding the possibility that the experience represents. Within that possibility are the tweaks for my wellness map.

There are many benefits to regular meditative practice. The Journal of the American Medical Association, citing the key points of a randomized clinical trial, states, “Mindfulness yoga appeared to be an effective and safe treatment option for patients with mild-to-moderate Parkinson disease for stress and symptom management; further investigation is warranted to establish its long-term effect and compliance.”

A 2015 clinical trial of the effects of mindfulness-based intervention on Parkinson’s patients, reported in the journal Parkinson’s Disease, asked participants to actively observe sensations in their bodies. The results indicate that mindfulness training may empower the individual to strengthen internal resources for coping with chronic disease, and restore some degree of self-determination in the experience of living with Parkinson’s.

The calmness experience left me with a strong reminder of what is possible if I practice meditation more consistently. During early stages of meditation, perceptions start to increase, including the perception of pain. If I can continue the meditative process, I can quiet it down using the technique of the pause between.

I do not want old habits to pull me in. If I cannot sweep away the habitual patterns of thought and action, the calmness becomes a more and more distant memory. I must bring calmness into play as part of my daily conscious thought.

The radiant calmness experience helped me by putting a clear, obvious road sign at the fork on my wellness map. The sign reads, “Calmness this way.” This radiant calmness changed me by smoothing out the rough edges. It comes with tools that are useful against the weeds of unrest: patience, tolerance, and compassion.

The answer to the question, “So what happens if I let go?” is found in holding on to the possibility of change, and then moving in that direction every day. Then, life’s problems can be perceived with less of an emotional burden. Every day brings pain from Parkinson’s, but is also an opportunity to practice calmness despite the discomfort.

I remain deeply moved by the reminder that I once lived closer to this radiant calmness. Maybe, at one time, we all did.

***

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 Caressed by Calmness: An Extended Well-being Moment appeared first on Parkinson’s News Today.

With Parkinson’s, a Suntan Just Isn’t Worth It

heat intolerance

Betty slapped George hard. There was no response, so she dialed 911.

Parkinson’s disease (PD) had forced George into early retirement. He loved basking in the sun, diving into a good book, and working on his tan on their deck. Betty was in the kitchen when she saw him slumped over in the chair.

This wasn’t the first time George had responded so severely to the summer heat. He had reacted similarly to the heat two other times. His heart rate was slow, almost imperceptible. His face was ashen. Betty cradled George’s face in her hands as she waited for the ambulance, and with tears streaming down her face, commanded, “Don’t you die on me.” To herself, she said, “The suntan isn’t worth it.”

Similar stories are reported by many PD patients and their families.

Like George, the heat hits me hard. A small increase in air temperature above 75 degrees can leave me prone for hours, if not the entire day. Relief isn’t found by staying still or avoiding activities. I can have a difficult time in the shade or even in the house if the temperature rises.

I follow the recommendations to avoid heatstroke: I hydrate with water; complete any outside activities in the earlier, cooler parts of the day; and wear light, loose clothing. Our house is cooled by central air.

Despite all of these precautions, I can sense the losing battle with the heat as it rises. A comfortable summer day for others becomes a debilitating challenge for me due to heat attacks. This reaction to heat is an attack on my ability to function, a magnified response, such as my descriptions of fatigue and pain.

Researchers claim that heat intolerance is different than heat illnesses like heatstroke. Heat intolerance is usually a side effect of medications or a symptom of endocrine disorders or other medical conditions, rather than the result of too much exercise or hot, humid weather.

Up to 64 percent of PD patients report thermodysregulation, which includes symptoms of heat and cold intolerance as well as excessive sweating. PD patients have problems with their autonomic nervous system, which controls sweating. While perspiration helps regulate the body’s temperature, too much or too little perspiration can result in overheating.

Last month was the warmest July ever. It also included the worst bout of heat attacks ever recorded. It’s time for a tweak in the wellness map.

I’m trying to shift from thinking that I can work in some heat to understanding that it’s not worth the suntan. It’s not something to ignore or push through, distracting the mind from the physical issues, like hiding one’s head in the sand. It must be met straight on with reason and sensible action. Most of us are not yogi masters who can change body temperatures at will. We must use what we know and take steps to prevent serious harm from happening.

This is me telling myself not to take this risk lightly. I tend to push myself too hard.

The symptoms of heat intolerance can vary from person to person, but may include:

  • feeling very hot in moderately warm temperatures
  • excessive sweating
  • not sweating enough in the heat
  • exhaustion and fatigue during warm weather
  • nausea, vomiting, or dizziness in response to heat
  • changes in mood when too hot

If you experience any of these symptoms, time to get out of the heat! It’s just not worth the suntan.

***

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 With Parkinson’s, a Suntan Just Isn’t Worth It appeared first on Parkinson’s News Today.