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Don’t Worry, Be Happy: Parkinson’s and the Limits of Positive Thinking

worry

I don’t want to take away from Mad magazine’s Alfred E. Neuman or singer-songwriter Bobby McFerrin, but the idea that a pair of rose-colored “don’t worry” glasses will change my life for the better has never sat well with me. Pollyanna is not a guest in my home.

“Look at all the wonderful things in your life. All your needs are provided for — no worries,” someone said to my wife and me recently as we described the temporary ruin of stagnation. But pouring saccharin sentiments over the burnt toast of my life won’t remove its acrid flavor.

I often write about having a positive action-based wellness plan. My approach is attitude plus behavior equal consequences. My positive outlook is wisdom-based and engaged in compassion and not on my ability to see a half-full glass. One can try to view the chronic disease glass as being half full, but the reality is that it is also half empty. I wish that my muscular problems and other Parkinson’s symptoms were absent. Viewing the glass as half full is not an action plan — it’s more of an “I’m tired of this right now” statement.

Many authors have extolled positive thinking: Norman Vincent Peale and Norman Cousins, among others. Choosing how to act, think, and feel creates patterns. We return to those patterns when times get tough. Another way of putting it is, “Fake it until you make it.” It seems vacuous to assume that “faking” happiness will remove the causes of unhappiness or make circumstances appear to be better than they are. Well-meaning people who propose the “don’t worry, be happy” solution don’t have a clear understanding of how Parkinson’s and other chronic diseases affect our daily lives. What we need is a well-designed and enacted wellness map — not rose-colored glasses.

Though my partner and I have moments of frustration and utter despair, we manage to pull ourselves up — as we have throughout our lives — to find the inner and spiritual strength that enables us to continue. It’s a lifelong habit for both of us, and as a team, we support each other through the continued challenges, taking turns with compassion and strength when the other one falters under the burden.

Do we worry? Yes, but we move gradually toward more acceptance. Are we happy? The glass remains half full, and we are grateful for the happiness and blessings in our lives. But it is now time to replenish the glass and move into deeper compassion, finding strength in the belief that all things happen for a reason and in their own time. We will not shy away from the work that needs to be done in our lives and for others with chronic diseases.

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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 Don’t Worry, Be Happy: Parkinson’s and the Limits of Positive Thinking appeared first on Parkinson’s News Today.

The Ruin of a Sedentary Life

ruin

Wailing, with tears flowing, I cry out, “I feel terrible! I can’t even think straight!” My partner runs over and hugs me hard. I am lost and have nothing left to give.

This is one way that “crossing the threshold” affects my life. It rarely happens — once every five years. It’s the result of things piling on top of things, the old ways of coping no longer working, and stress pushing me over the edge. It began with the ruin of a sedentary life.

It was an ongoing disaster. I had injured muscles while overdoing it in the garden. With rigid Parkinson’s, a muscle injury results in additional spasms and rigidity. Recovery time was weeks, which led to excessive time spent on my computer. I sustained an eye injury in the spring, and I’m still learning to compensate for the resulting vision loss while managing an increase in vertigo and migraines.

A medication adjustment led to further nausea, and a trial on “natural” medication caused an allergic reaction. Due to these stressors, I lost my appetite, which led to weight loss. Was it over? Not quite. I was exposed to a particularly nasty virus that hit me hard. No exercise, poor sleep, and the pressures mentioned led to the ruin of this columnist’s sedentary life.

I know that this situation is not good for me. At the same time, in an almost nonsensical way, I experience resistance to moving away from the situation. It’s easier to do things as I’ve always done them than to change. I realize that the old coping skills, like heavy exercise and gaming, were much easier before Parkinson’s, and less effective now. I experience procrastination; I know that I should take action, but I haven’t.

I am not ruling out ignorance as a cause. I thought that I knew many things about muscle injury recovery, but I had more to learn. I put myself under an unhealthy level of stress to meet what I perceived as important demands on my time. The cruel fact was that I could no longer recover from a muscle injury in the way that I used to. I recognize that I must learn a new way to heal.

I can’t find much scientific research on rigid Parkinson’s and the benefits of exercise on recovery from muscle injury. More education is needed to help those who are trying to maintain an exercise regimen.

I realize that my inattention to the changes that I’m undergoing can place additional burdens on the people around me. I am trying to change my actions and avoid feelings of frustration due to my failure to remember what I cannot do these days. My internal dialog is working with the idea of “out with the old and in with the new me.”

My well-being mantras are as follows:

  1. If I can’t do it as I did before, then I must put time into learning a new way.
  2. Vary my exercise regimen. Adjust for recovery from injuries and “off” periods.
  3. Remember to warm up, stretch, and prepare for any vigorous exercise.
  4. Keep hydrated. Use the belt attachment to carry my water bottle so that I don’t lose it or forget where it is.
  5. Take time to recover from any strenuous activity. It used to take a day; now, it can be two or three.
  6. Think about proper mechanics when carrying out tasks. I must figure out another way to cut down and move trees.

The ruin of a sedentary life was the result of many actions that exacerbated the muscle injury problem rather than contributed to healing. Old ways and familiar mantras don’t work anymore. My muscle rigidity and weakness have jumped another plateau in the progression of this chronic disease, so I must teach myself a new way to exercise. It can’t be business as usual, because the typical strategies aren’t working well anymore.

Now is the time to put the new wellness map into play — every day, with a healthy dose of self-kindness.

I’m developing an information page on exercise with Parkinson’s on my website (www.drc.life). If you would like to contribute to this topic, please let me know 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 Ruin of a Sedentary Life appeared first on Parkinson’s News Today.

Do I Deserve a Pat on the Back for My 50th Column?

50th column

“Wow! Your 50th column. You should feel proud,” Neo exclaims over our shared breakfast ruminations. (Neo is my brain’s neocortex, which I’ve mentioned in previous columns.)

“Not really,” I reply without hesitating. “I feel humbled and awestruck. I have been writing about these topics for decades. To be given the honor of a column is a blessing, and I hope that I touch on issues that other people face.”

Neo pushes back a little, asking, “Don’t you think you deserve a pat on the back for all of your hard work?”

The concept of ego gratification pushes my emotional buttons. “A pat for what? I am merely following a calling and showing up well prepared. There’s no need for an ego massage.”

“That’s not what I mean,” Neo snaps back. “Your sister said the columns are very well written. They’ve helped her to feel better while dealing with her medical issues, and she looks forward to reading them each week. Other readers have said the same thing.”

Calmly, I reply, “I am very grateful for my readership, but their praise doesn’t dictate the writing. It can’t if the writing is to remain authentic to my life experiences.”

“So, you are going to let this 50th column pass by without a pat on the back?” Neo tersely asks. Receiving recognition for his achievements has been important to him since childhood. However, I know that the desire for praise can be a slippery slope. Facing and working through medical challenges and striving to establish a means of communication for fellow sufferers of Parkinson’s disease doesn’t fit well with such ego-driven goals.

Between sips of my morning juice, I counter, “It’s not about me. It has never been, nor should it be. It’s about the message of hope and crafting the best voice for sharing that message with all who wish to read it. Ego will only get in the way.”

Neo gazes out the window, sighs, and says, “So, you are going to do nothing then? Maybe you feel unworthy.”

I reply, “My worthiness is my own business and not subject to a culturally shaming guilt trip. This life owes me nothing; no entitlements or guarantees. I don’t write for expectations of rewards. Accolades come with feel-good attachments; like fame, they are illusory. Illusions cannot provide a sound foundation for authentic, hopeful writing.”

Neo, frustrated by my response, says, “I don’t get it. It’s normal to feel proud. It’s the 50th column you’ve written.”

I comfort him with a pat. “Normal has never been anything but a bell curve point for me,” I say. “No measure of normality can direct excellence or increase well-being. Pride is normal, but it is ego-driven, not guided by the message. Pride is defensive, superficial, quick to judge, and often built on a crumbling foundation of ignorance. It can’t direct my actions or thoughts.”

Neo responds, “I’m saying it’s OK to acknowledge your efforts. That isn’t false pride. It’s OK to show a little self-kindness. You deal with a lot of issues in your life, much of it medical or related to how you deal with symptoms. You have additional challenges with accessing medical care, disease progression, and family and friends who don’t always understand what is going on or can’t show the level of support you need at the moment. They don’t know how difficult it is to wake up every morning and try to keep going despite the setbacks. What they see is the result of all of your efforts. They notice how good you look and not what it takes every day to travel the path.”

He is right in his assertion that I can be too hard on myself sometimes. One thing that I’m proud of is my persistence in continually showing up well prepared, day after day, year after year. And for those days when either Parkinson’s or my vision causes my life to be upended or adjusted at a moment’s notice, I work through it the best I can and hope the next day will be a little better. If I can share any measure of hope through my experiences, or a sense of a shared community, then that is the best reward I can ever receive.

Neo agrees, “Yeah! That deserves a pat on the back.”

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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 Do I Deserve a Pat on the Back for My 50th Column? appeared first on Parkinson’s News Today.

Procrastination and Other Demons

procrastination

It was one of those ugly days. My Parkinson’s disease (PD) symptoms were maxing out. The viral infection I had picked up made it hard to breathe. My partner was at an appointment, and I had no shoulder to lean on. I was unmotivated to do anything that required more thought than needed to boil an egg.

And it was column deadline day.

Feeling like I can’t write the column and being unable to write are very different things. Sorting out the hesitation to engage in motor action from apathy is complex with PD. Like most PD symptoms, there is not a “one size fits all.” Taking the time to determine the differences helps me avoid the cyclic trap of feeling as if I can’t engage.

I work on this every day, always trying to show up where I am needed. Because I do, people comment on how good I look.

“You are an inspiration to us all,” is said as a compliment. I nod and smile, not knowing how to respond. I look at my life and see those things that I try to do. It takes physical and mental effort, and sometimes what I want to do is difficult to achieve. “Success is 10 percent inspiration and 90 percent perspiration,” Thomas Edison said.

Procrastination prevents people from turning vision into reality.

The wellness map is folded on my dresser, and sanctuary is just beyond the drawn curtains. There are days when I don’t have the energy for them. It’s not procrastination. Fatigue and pain add to an ugly day, making it difficult to accomplish tasks. I work on letting go of the voice that says, “You’re a bad person because you are not getting things done.” I replenish my thoughts with the voice that says, “Let it go. You will have better days.”

I also have lucid moments, and those are precious to me. I give myself permission to treat the difficult days with as much reverence as I give to the good moments. I also know that my wellness map used with sanctuary will decrease the number of bad days and increase the frequency of lucid moments. It opens the possibility for well-being moments.

I know I should get off the sofa and engage, but there are times when I’d rather put it off until tomorrow. I’d rather do something tied to more immediate gratification. This is procrastination. It can become a habit as easily indulged as eating chocolate or surfing through cable television.

We justify “putting off today what we can do tomorrow.”

“It’s too hard.”

“My emotions are blocking progress.”

“I want to avoid the pain of doing this.”

“I need comfort, not to take risks.”

The most common cause is a somnolence of mind induced by procrastination. Finding the passion, purpose, and meaning to act is incompatible with procrastination. Those who procrastinate are filled with ideas of how the world should be, yet leave the fire in the belly without fuel.

Maybe next time someone will say, “You’re a perspiration to us all.”

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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 Procrastination and Other Demons appeared first on Parkinson’s News Today.

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.

The post Making Meaning of It All appeared first on Parkinson’s News Today.

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.

The post Letting Go Is Not ‘Forever Gone’ appeared first on Parkinson’s News Today.

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.

The post A Scientific Model of Sanctuary Helps Me to Overcome Resistance appeared first on Parkinson’s News Today.

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.