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Rewiring the Brain: Taking a Fresh Look at Chronic Pain

exercise, chemical hazards, coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

For 15 years, I have been a failure at managing my chronic pain. I was prescribed oxycodone with gabapentin, and after my Parkinson’s diagnosis, I was put on levodopa. This decreased my pain to the point where oxycodone was no longer needed.

I also tried alcohol and marijuana in a rigorous attempt to make the pain vanish, replacing it with “feel-goods.” I know that chasing after “feel-goods” is not the right approach for me, so I stopped all the pain medications except levodopa.

At this juncture, I wish to be clear that I am not recommending anyone stop their medications. This is my personal journey, and I made decisions in consultation with my healthcare providers. For me, the risk of opioid treatment far outweighed the benefits.

Gabapentin in my system dulled my brain to the point that my cognitive abilities (or lack thereof) adversely affected my quality of life. Only in the last few months have all the pieces finally fallen into place to reveal a fresh approach to chronic pain management.

Chronic pain management is not just about popping a pill and hoping to be pain-free. No matter what I do, I will always have chronic pain from Parkinson’s every day. The goal is to live better. Medications that seek to disguise this reality within the gaudy attire of society’s “feel-good” addictions always send up big, red warning flags for me.

The brain has a remarkable ability to rewire itself so it can function better, even with chronic pain. If I am putting chemicals in my brain or using a set of addictive thoughts or feelings that interfere with that rehabilitative rewiring, then I must change or give up. Giving up and showing up are just a breath and a step apart.

The Parkinson’s chronic pain management program I use incorporates many of these small changes to help me live better. Here is my list:

This list reflects some of the information available to the public on chronic pain management. Each small change supports a small increase in the space between chronic pain and the thought or feeling in reaction to that pain. Each small change strengthens the stability of the pause.

With a long enough pause, it is possible to call on the conductor, who can then reroute the brain’s response to pain and surges of exaggerated mood (SEM) attacks. Once the conductor is called upon, one can discover something more — a fresh new look at chronic pain management.

The old ways of coping with pain were not working because SEM attacks were causing an exaggeration of the pain signal and emotions. In our search to live better with this, we discovered a new exercise approach, and along the way, a few gems of wisdom, including:

  • Intense emotional experiences can exacerbate chronic pain.
  • Uncontrolled actions connected to intense emotional experiences can also increase pain.
  • Skilled meditators experience intense emotions differently than the average person.
  • People with highly skilled conductors will experience intense emotion differently. Seeing the intense emotional experiences, along with pain, from the viewpoint of the conductor is not the same as the original emotional/pain experience.
  • Marijuana used in a sacred way can help to hold open the viewing window for the conductor.

With patience and perseverance, I sat at the conductor’s viewing window every day for more than four months. Many of the discoveries from this view are chronicled in my columns.

Connected to SEM attacks is the idea of anxiety or sad emotion surges that are not tied to context. Many of the emotional surges were purely abnormal Parkinson’s biochemicals with no environmental or conscious antecedent — just a surge of emotion due to brain chemistry.

Given this to be true, and my history using a well-trained conductor, I passionately believed a new brain path would be found. At the time, I was just using the conductor’s window to find a way to tone down the SEM attacks. What I discovered was a lot more, and yet so simple.

The need to fight, flee, or act in a way to seek nurturing is an automatic, often instinctual response to pain signals. If those pain signals are exaggerated, the response can be, too. In my case, it is all based on illusion caused by an organic malfunction. There is no external threat that requires a fight/flight/nurture-seeking response. As Neo said in “The Matrix” sci-fi movie, “There is no spoon.”

This perception of the difference between a thought/feeling and an observed thought/feeling isn’t just an idea for me, but rather an experienced phenomenon connected to the vision of a better life. At the conductor’s window, I sat and watched the exaggerated illusionary signal, I watched the pain and emotions approach, and I saw them redirected down a new track leaving no consequence visible to others. I felt no fanfare, no bliss, no awe. Just a soft, everyday calmness and a sense that I can do this conductor rerouting.

In a prominent place in the home, I put up a calendar to document success. At the end of each day, I share with a family member the placing of a big, red check mark for every day the conductor successfully reroutes the reaction to pain and SEM attacks.

***

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 Rewiring the Brain: Taking a Fresh Look at Chronic Pain appeared first on Parkinson’s News Today.

Rethinking Exercise With Parkinson’s

exercise, chemical hazards, coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

I hate facing the effort it takes to start daily exercise. I hate the way I feel the next day — like I have been pummeled with nunchuks. But ever since my Marine Corps training I have enjoyed the benefits of exercise. I know it is hard to get up and engage in physical activity. This is particularly true when facing the motor hesitation of Parkinson’s. It is hard to exercise facing the level of discomfort that is going to follow. This is particularly true when the post-exercise stiffness is compounded by the rigidity associated with Parkinson’s. Yet, despite these difficulties, the benefits of exercise far exceed the temporary increase in discomfort.

Starting exercise after being sedentary combined with neuromuscular malfunctions requires special considerations. The Marine Corps boot camp approach just is not going to work. Last time I tried that I ended up with multiple muscle injuries. A new approach to exercise came from three ideas: mindful movements, little things practice, and long movements adapted from Lee Silverman Voice Treatment (LSVT) exercise recommendations.

In the study “Effect of Exercise on Motor and Nonmotor Symptoms of Parkinson’s Disease,” the authors report that “LSVT BIG therapy is designed to overcome amplitude deficits associated with PD. This therapy improves proprioception through increasing amplitude together with sustained attention and cognitive involvement by mentally focusing on individual movements.” In other words, I am concentrating on where my body is and what it is doing, and I’m paying attention by focusing on the task at hand.

My new exercise program incorporates activities that focus on long and slow movements while I’m simultaneously engaged in a mindful focus on the little things. This new exercise program is also tied to something that will continually motivate me to move past the Parkinson’s hesitation to start. I discovered, in some ways rediscovered, the answer with landscape gardening.

What is great about landscape gardening is that there are so many different types of motor tasks that need to be accomplished: shoveling, hauling with a wheelbarrow, planting, raking, clipping, and pruning. Knowing that I need more light physical activity for both warming up and for bad days, where I can only put in short durations, I am installing a white gravel Zen path. The small gravel pieces, less than an inch in diameter, are incredibly easy to rake with long mindful movements. Light and easy warm-up exercise has become mandatory for me before any physical activity. The one day I forgot resulted in strained muscles that required too much time to heal. The good thing is I now know what strained muscle pain feels like and how it is different from Parkinson’s muscle pain and different from post-exercise pain. I now know why the light warm-up exercise in a mindful state needs to happen before I tackle the larger landscape gardening projects.

Getting back into exercise after being sedentary for so long requires patience — lots and lots of patience. I see so many things in my vision for our yard. But I know if I push myself in that old boot camp way I am going to end up injured and unable to accomplish my vision. But patience means slowing down and slowing down feels like I am not accomplishing “great” things. If I think I am not accomplishing then I am not successful, and if I cannot be successful, then I feel no need starting at all. It is a devious cycle that ignores the practice of “little things” and becomes a reason to not exercise. Mindful, light motor exercise activities break that cycle. Like Tai Chi and yoga, the long, mindful movements help motivate me out of sedentary life and into a balanced exercise regime.

Gardening is also good for the mind and what is good for the mind is good for the body. My approach to gardening is different now. My first impression of the change is that my actions are calmer, framed in sacred intent. But, in all honesty, I am still sorting all that out. Using this new approach to exercise, while being creative with landscape gardening, is making a huge difference in my health. We just did a teleconference with my new primary provider and Mrs. Dr. C said, “He’s the healthiest he’s been in four years.”

***

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 Rethinking Exercise With Parkinson’s appeared first on Parkinson’s News Today.

A Crack in the Wellness Shield

chemical hazards, coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

Sirens, flashing red and blue hazard lights, and Dr. C slumped in a gray felt recliner with the pallor to match. A greatly worried Neo (the neocortex of Dr. C’s brain mentioned in previous columns) exclaims, “What is going on here?”

Mrs. Dr. C pokes her head out from around the kitchen. “It was a real rough night here, wasn’t it?” Dr. C nods his head and waves his hand to signal her to continue the conversation without him. “The carbon monoxide alarm went off and we called 911. They found the problem — a faulty water heater. The fire department cleared out the bad air and disabled the unit. But Dr. C had already had too much exposure to a toxic situation. I guess there is a crack in that new wellness shield.”

“I know Doc was really excited about his wellness shield, but it looks like it doesn’t work.” Neo looks at Dr. C, who resembles something from “The Walking Dead.” “He really looks terrible.”

Mrs. Dr. C calmly replies, “He’s been working on rehabilitative programs to help people with chronic illnesses like Parkinson’s disease for several years now. But it is not a magical shield to protect against highly toxic situations. He has been through a lot of physical, emotional, and psychological stress recently and is in a fragile place in the recovery process. Exposure to toxic or intensely stressful situations can overwhelm him. Then all his Parkinson’s symptoms flare up at the same time. It is just a big ugly mess. It’s not the rehabilitation program for every day that failed. It was the additional exposure to something we did not anticipate.”

“But don’t we all have protective measures we think will guard us against harm?” Neo inquires.

“We all have ways to incorporate lifestyle changes into our routines or wellness maps. If these steps are applied in a very mindful way, they can help. Unfortunately, there are situations or external causes that just exacerbate the Parkinson’s symptoms. Dr. C has always exhibited a sensitivity to detergent chemicals. He was given a sensitivity test to determine his reactions and ranked among the highest score of the ‘hypersensitive individual.’

“It took years for U.S. Veterans Affairs to conduct multiple studies to link Agent Orange used in Vietnam combat missions for disability claims. They did a study in the Camp LeJeune training camp and discovered that toxins in the water resulted in an increased development of eight different medical conditions, including Parkinson’s.” Mrs. Dr. C. continues, “Dr. C was exposed to both. But we are thankful that the Veterans Administration has stepped up to address the disability of veterans from these toxic exposures.

“But other chemical exposures possibly resulting in disease development have been discovered from the use of more common products like weed control. So, we try to avoid those products. Even something as innocuous as talcum powder has been identified as a potential carcinogen.”

Mrs. C pauses. “I can’t help but wonder if Dr. C is more susceptible to chemical hazards. I felt fine and did not show any symptoms from our recent exposure. Dr. C looked and acted like he had been hit by a ton of bricks. We try to keep ourselves safe, but situations are going to come up unexpectedly and we can’t always predict, or rely on past experiences, when something is going to adversely affect him. While many chemical exposures do not necessarily cause Parkinson’s, we have to be vigilant about the ones that exacerbate his symptoms — the ones that slip through the crack in the shield.”

Neo says, “That makes sense. Is Dr. C going to be OK?”

Dr. C clears his voice. Neo and Mrs. Dr. C look in his direction as he begins to talk. “The best program for improving well-being is one that is tailored specifically to the one individual seeking help. My personal program came with instructions on how to implement it. But life sort of took a turn I didn’t expect.”

Dr. C gives Mrs. Dr. C a hug and says, “The biggest lesson here — I am looking forward to getting back on track.”

***

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 Crack in the Wellness Shield appeared first on Parkinson’s News Today.

Beginning the Journey Back to Health

coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

Hell on earth, that’s what it was. I was shocked by becoming legally blind in addition to worsening Parkinson’s symptoms, including what I call SEM (surges of exaggerated mood) attacks, chronic pain, and fatigue.

People used to say, “You don’t look like you have Parkinson’s.” But recent external and internal stressors have increased my symptoms. At the same time, darkness consumed me, made worse by a sedentary life and poor eating habits (sugar and fast foods) driven more by craving comfort than common sense.

This is the state of ill health where my journey back to good health begins. It’s a tough starting point. At times, it feels impossible. But I have packed some things into a sacred backpack to make the journey easier.

It’s not a heavy sacred backpack, as I barely have enough energy to motivate and move myself a few baby steps along the new health path. But it contains the essentials.

The promise of a healing relationship not only showed me what the well-being experience is like, but also gave me a map to find my way back. The wellness map has been expanded throughout the years, including with the recent addition of what I call “little things practice,” or attending to the little things that support the healing journey.

I also have the machete of the mystic scientist to help clear the weeds of confusion.

The sacred backpack provides for all my material needs, so I can focus on the perils and wonders that lie ahead.

The path looks overwhelming, with barely a gap between the trees where I can begin the journey. It starts with an unwavering commitment to starting. It’s not just any garden-variety commitment, but rather a sacred commitment following the promises given with the healing relationship. Using the healing relationship, I know with certainty that viewing the healing journey as sacred will improve the possibility of a positive outcome. I make the sacred commitment to begin, and then take the first little step.

Routine helps me take that first step. At the start of the healing journey, I focus on the three things that create the most distress on my physical system: a malfunctioning conductor, lack of exercise, and poor diet. The conductor training is a regular part of my daily routine now. I don’t let my mind go out wandering alone anymore.

Routine is so helpful at the start of the journey back. Because something is “in my schedule,” it becomes regular, routine, and anticipated. It does not require thinking about it — I just do it. And in just doing it, I again discover my “little things practice.” The conductor training, exercise, and diet become sacred activities — mindful, deliberate, and revered.

Other columns speak to the importance of exercise for people who have a chronic illness, especially Parkinson’s. When beginning physical activities with Parkinson’s, people tend to encounter motor hesitation. I find it helpful to engage in a form of exercise that I enjoy, such as gardening. I look forward to getting outdoors in the green space and working on creating a new sacred sanctuary. There are many opportunities for “little things practice.”

Diet has been a topic I have avoided because it is outside my scope of expertise. The literature about its influence on the probability of positive outcomes for those with Parkinson’s is often contradictory and confusing. For example, eating chocolate might be beneficial, but consuming sugar is more of a habit than a nutritional necessity.

Returning to my favorite scientific diet research, “The China Study,” I am again certain that eliminating sugar and high-fat meals will increase the possibility of a positive health outcome.

Sugar is the first to go, but gradually, over a six-month period. It’s not about perfection, but rather slowly making the switch from sugar treats to fruit treats, including fresh fruit and protein supplements.

Sugar has an addictive quality. Decreasing its consumption includes dealing with cravings. I don’t fight it. Instead, I recreate in my mind the physical memories of being sick when I consume too much sugar. Holding onto that thought, I confront my cravings and say, “Fifteen minutes of feeling good is not worth 15 hours of suffering.”

The journey back to health has begun, with three little steps: conductor training, exercise, and a healthy diet. It is framed as a sacred process, like a sacred tea ceremony, using my wellness map.

Not only have I discovered many more opportunities for “little things practice,” but in doing so, I have discovered an everyday calmness. It’s not like the bliss moment of being caressed in calmness. Instead, it is a soft, gentle, cooling breeze that is present for several days.

It sounds impossible, given where I started. Amazing! It feels like I have a protective shield now.

***

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 Beginning the Journey Back to Health appeared first on Parkinson’s News Today.

Choosing What to Do When Bad Things Happen

coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

“I’m still not feeling well. I should go to the doctor,” said Mrs. Dr. C with a pained look.

I gave her a quick glance and without even a hesitation in garden shoveling, said, “OK. It’s important you attend to your health.” She asked if I would like to go with her. I replied, “Not this time. I really want to get this part of the garden done today.” The rest of the afternoon was consumed by this garden goal. And I know she was disappointed.

I chose to direct all my attention and energy to this goal alone. I chose to ignore the little things that amplified my emotions one moment at a time. I chose to ignore what I call my “little things practice.” I watched as those unattended little moments began to crescendo. And yet, I chose to ignore the warnings, maintaining my attention on that precious garden goal.

The consequences were felt in my personal relationship as the emotional flooding became nearly unmanageable. I knew I had chosen an unhealthy path, yet I felt powerless to choose another. At the time, it seemed especially important to me that I complete the garden goal. Looking back, I can see that the failure to attend to the little things in favor of a singular goal resulted in negative consequences both personally and interpersonally.

Putting the little things practice in place is difficult under the best conditions, but it’s much more challenging when bad things are happening. This includes dealing with a chronic disease like Parkinson’s, having a partner with a chronic disease, facing a pandemic, and feeling frustrated by tasks others haven’t done correctly when settling into a new home.

Little things practice requires that I focus my attention on the little things. Bad things can consume my resources because of the energy needed for problem-solving or the energy used for coping. When the number of stressors and demands on my attention exceeds my available resources, I can get overwhelmed and end up at that precipice of threshold management. I can’t engage my little things practice when approaching that precipice because the resources needed are being used elsewhere.

In a previous column I talked about brain therapy and training the conductor who oversees the Grand Central Station in our brain. Think of the conductor as the attention director. Sensory, memory, and emotional stimuli come into the Grand Central Station. The conductor helps decide which stimuli are the most important and thus need to be granted quicker access and more attention. This is especially true when learning a new skill like little things practice.

After some years of skill-building, memory comes into play and it gets a bit easier. But in the beginning, it’s like stepping off a four-lane highway and bushwhacking your way through the forest to carve out a new path. The new path of little skills practice is used to replace an old history of coping skills, many of which are no longer effective.

The brain is capable of growing new neurological connections, provided that the brain is not so damaged that the connections can no longer grow through that cerebral space. When that happens (and there are lots of ways to create damaged areas of the brain), then the challenge is to develop compensatory strategies that will support neurological connections growing around the damage — bushwhacking that new path through the forest. The conductor will need to be called upon to redirect attention to the new path, the path of little things practices — whether through or around.

For me, it is much like putting in new gardens: it takes time, patience, persistence, and support. It will take years for the new gardens to form as they have in previous homes. It will also be so with my progress on little things practice.

As I’m bushwhacking that new path of little things practice I know I will fail. I will return to old habits, walking that easy four-lane highway instead of stumbling around in the forest. I must call upon the conductor continually throughout the day to direct the attention needed. Right now, in the early stages of my skill development, this is often draining. It is working. It is helping. But it is frustratingly slow!

***

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 Choosing What to Do When Bad Things Happen appeared first on Parkinson’s News Today.

It’s the Little Things that Help with the Big Things

frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

“Be one with the moment.” Hogwash! I can’t be one with the darkness. Yet, I do understand the power of the darkness for shaping my behaviors. I see the darkness as pure survival and protection against possible threats. It is a hyper-focus on self-survival along with unhealed battle wounds that constantly provide mortar for the walls of defense. There’s little room for empathy and compassion. It is a good state of consciousness for a solo battle against threats of harm, but potentially damaging on personal relationships. I’m rarely consumed by darkness. However, I’m daily touched in little ways by the wounded warrior state of consciousness.

Every day, I have short emotional, frustrated outbursts (expressed internally, mostly) connected to my decreased motor coordination and loss of vision abilities. Add in chronic pain and surges of exaggerated emotion, and the result is that I work hard to calm my emotions dozens of times during the day. I was surprised — and I don’t usually get surprised — at how small these inner outbursts are in their beginnings. They only grow larger when left unattended, much like all the overgrown weeds in the unattended yard of my new home. Building a new sanctuary at the new home requires looking past the weeds, not getting overwhelmed with how much work there is, and being pleased with any progress. The same can be applied to personal healing work.

The journey taken to arrive at my new home was the hardest thing I have ever done. I became quite ill along the way. I wasn’t eating, exercising, or socializing, and was barely able to eke out these columns every week. My body had trouble doing the simplest of things, such as going to the store with my partner for groceries. I am a mess. Recovery from a serious health setback like this takes courage, patience, and support from friends and family. The healing relationship provides a map, but that map is very fragile in the beginning stages of recovery. I promised myself I’d find a way to heal, to do it better and to record the journey in these columns. If I can’t walk it, I’m not going to talk it.

In the past, I was happy to keep big outbursts out of the home and out of important relationships. That has changed with the idea that the little inner emotional outbursts are equally important. This was discovered while gardening. The soil here is very clay-rich. I can grab a hunk and shape it into a baseball that keeps its shape when thrown. The soil also holds a lot of water. In addition, our new yard has a lot of trees. The combination of wet, clay-rich soil and lots of tree roots complicates creating new garden beds. I found myself struggling physically and swearing at both the clay soil and the roots. I don’t think they heard me; they were still in the way of my next shovel thrust.

This may seem obvious, but the soil isn’t trying to be annoying and the roots are not trying to get in my way. I chose to build the garden beds at this location for aesthetic reasons. This means I chose the location because I can see in my mind the vision of a sanctuary that will surround my home when I am done. What I should say is, “Be happy for the opportunity.” With every shovelful of wet heavy root-tangled mud, “This is going to look beautiful. Take a deep breath. Look at the garden and say, ‘Thank you.’”

I will fail. I will yell at the mud again. It is not about perfection, it is about improving quality of life. It is about attending to the little things that support the healing journey, to open the door to the possibility of more moments of well-being.

I have been applying this “little things practice” during the past two weeks. I’ve been breathing through (and calming down within) each second of each tiny emotional surge. The exercise helps to make threshold management easier, resulting in more time and energy for enjoyable things. If I can manage the little things — and they come into my life from many more sources than gardening — I hope to do much better at managing the “big” things.

***

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 It’s the Little Things that Help with the Big Things appeared first on Parkinson’s News Today.

Neo Inquires About the Healing Relationship

relationships, what ifs, shut in, toilet paper, serenity, laughter

Neo, the neocortex of Dr. C’s brain mentioned in previous columns, exclaims, “That was amazing, Dr. C, to watch Mrs. Dr. C apply the healing relationship, and poof, you’re all better!” Neo was referring to last week’s column, in which Dr. C emerged from a long period of darkness in his life.

Dr. C grimaces at Neo’s remark. It might sound that simple, but the process is much more involved. “Remember,” he says, “she has been with me for a long time. That is the special knowledge that Mrs. Dr. C has. As James Taylor wrote in his song ‘Something in the Way She Moves,’ ‘She has the power to go where no one else can find me.’ She is a witness to the best of Dr. C.”

“You have mentioned the healing relationship in 10 columns,” Neo points out. “I’ve read all that, but I still don’t understand how it works.”

Dr. C settles into a comfortable position, stretches, and then explains to Neo the development of the concept. Sounding very professorial, he begins, “From the beginning of human civilization, healers, shamans, have been an important part of a sustainable social collective. Healers are often chosen by the tribe because of a gift for sensing the inner person. They often undergo years of training, rites of passage, vision quests, or other training provided by an elder shaman.

“Some of these initiates pass from the ordinary to the extraordinary, and some do not. Those who do learn the intricate dance that is the healing process become skilled artisans within the healing relationship. Only a few will attain such skills.”

During the soliloquy, Mrs. Dr. C opens the door and enters, laden with groceries. Dr. C offers to help, and she asks, “What have you two been up to while I was out?”

Dr. C mentions Neo’s amazement at the healing relationship. “It is his contention that all the stress was eliminated and problems solved with your intervention and use of the healing relationship when I was engulfed in darkness.”

He continues, “The descriptors in the column provide a look at various parts of the healing relationship. This is to help clear the confusion about its nature. But the healing relationship is more than the sum of its parts. There is a holistic experience connected to the phenomenon, one that cannot be known through a process that reduces it to a collection of features or steps in a process. Within this healing relationship is the possibility of experiencing a sacred well-being moment.

“The possibility of sacred well-being is available to everyone, trained or untrained, anytime and anywhere. Training with the healing relationship increases the probability it will occur, but it is not a guarantee. Training also helps with meaning-making during follow-up,” he adds.

Mrs. Dr. C responds, “What the ‘good doctor’ forgets is that his brush with the darkness impacted us both. We both had to go through that dark, briar-filled forest of emotions, despair, and fear.

“I think there are two more important points to make. One, I have never wanted to become a ‘caretaker’ instead of a ‘wife.’ Caretaker implies to me a distancing from the relationship of spouse. Second, I do not view the healing relationship as a cure. It does not change your symptoms of Parkinson’s or vision loss. It does not make them go away or stop the progression. But it provides something else.”

She thinks for a moment, gazes out the window at the birds circling the feeders, and then says, “It gives me strength. It is a frightening thing for me to feel that there might be nothing I can do. I feel like I am helping to heal a wound, much like scar tissue over an injury. The Parkinson’s and vision loss still happened, the pain is still there, and the scars will always be present. Neither of us can change that. Sometimes I remind him that we just need to follow the map provided.”

Dr. C agrees, “It’s not a cure but rather a path to better living with what exists, even if it’s a chronic illness. The map comes with the sacred experience, and if I do not follow it then all I can expect is failure. Using the healing relationship comes down to believing it is possible, and then having a sacred healing experience with a healer followed by learning everything about it.”

Mrs. Dr. C points at the shopping bags. “It would also help if you could put away some groceries.” She gives Dr. C and Neo a friendly wink.

***

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 Neo Inquires About the Healing Relationship appeared first on Parkinson’s News Today.

Failing at Threshold Management and Paying the Price

relationships, what ifs, shut in, toilet paper, serenity, laughter

“Yuck! It peed all over me,” my granddaughter exclaimed as she released the toad back into the forest.

“That’s just his natural defense mechanism,” her father replied.

Like the toad, we also have our natural defense mechanisms. They are automatically called upon when a threat is perceived, real or not. The toad was not in any real harm, but the defense mechanism reacted anyway. This happens with us, too.

Persistent threat exposure over an extended period has negative consequences, like crossing over the threshold of emotional control and having to pay the price.

Normally, crossing the threshold of emotional control is a brief event, such as an outburst of crying, an expression of temper, or an eruption of yelling. But when a persistent threat of harm continues over an extended time, threshold management becomes more difficult, defense mechanisms are put in place more frequently, and threshold-crossing occurs more often. Left unattended, this chronic defense against perceived threats, combined with regular loss of control, leads to what I call darkness.

It is not easy for me to write about this. Firstly, I have been immersed in darkness only twice in my life, and both times followed extended periods of threat to my well-being. Secondly, I have not delved into the published material on this topic.

I do know that depression and anxiety are a challenge for nearly half of those diagnosed with Parkinson’s disease. But the experience of darkness is not limited to people with such diagnoses. It can happen to any of us — patients, caretakers, family members, or friends — when we are exposed to persistent perceived threat over an extended time.

The darkness experience can be described as crossing the threshold of emotional control and remaining stuck there. A flood of pain ensues, along with a desire to do anything to escape that pain.

Strong defense mechanisms are put in place to prevent the possibility of additional pain. The world becomes closed off, and a fragile ego is guarded night and day against insult. A simple phrase such as, “Would you like to come over for a visit?” is interpreted as, “I’m offended that you would even doubt that I would like to come and see you.”

There is spilling-out behavior, or emotions that lead to behaviors that are expelled onto others within the person’s sphere of influence, like kicking the dog when you have a bad day.

There is also a lot of “barking at the moon.” That is a phrase I use for describing a stream of complaining directed at all those things wrong in the world, most of which I have little control over. Yet, I sit here in the darkness howling at all those things.

Another reason it is hard for me to write about darkness is because I feel like a failure — a very big failure. When inside the darkness, I feel no compassion toward anyone, including myself. There is no faith, no serenity, no beauty, no meaning, and no purpose. It is very much the opposite of the authentic me that I choose to share with the world.

Yet it was real, and I hated it. But as a journalist, I chose to sit in the darkness and observe. I was surprised to see the intensity and severity of the defense mechanisms. These were 10-feet-thick concrete walls surrounding me, not letting anything in, but also not let anything out. I could see my partner trying to reach through the rock walls, bloodied knuckles to show for it. She never left my side.

One of the worst problems with the darkness experience is the lack of self-observation and accurate self-monitoring. It is one of the reasons why it is so hard to navigate solo.

Realistically, sitting in the darkness is truly a horrible experience — a serpent coiled around my soul with fangs sunk deep, sucking out the light. I knew I was not thinking clearly and could not be in the darkness one second longer. I softly screamed, “I need help,” with the deepest sincerity and open vulnerability that I could muster. My partner offered the sacred healing relationship that pulled me back. It is almost impossible to navigate out of the darkness sailing solo.

Finally, we are in our new home, building a new sanctuary and healing.

***

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 Failing at Threshold Management and Paying the Price appeared first on Parkinson’s News Today.

Making Healthy Connections and Sharing Healing Experiences

relationships, what ifs, shut in, toilet paper, serenity, laughter

In the book “Talking to Strangers,” author Malcolm Gladwell posits that we are lousy at knowing the intent of strangers. We have no better success than chance in determining whether someone is lying or telling the truth.

One explanation is called truth default theory. Simply stated, when meeting strangers, we default to our beliefs about people. These beliefs shape how we interpret all the available cues gathered while talking to a stranger. This process of “sizing up” is how we arrive at our truth default position when talking to others.

But research suggests that most of us — even those well-trained in human communication — are not particularly good at accurately reading people. Yet, experiencing that special connected feeling when meeting someone for the first time is the muse for poets, authors, and songwriters alike.

In my research on empathy, I looked at this problem of making an accurate connection that moves beyond the initial truth default position established by belief bias. I found that there is a certain type of relationship in which the accuracy of sensing the other is improved over the truth default position. I call this the “healing relationship.” Practicing healers, and those who have experienced healing with these healers, describe the healing relationship in sacred terms.

The problem with science-based normative statistics, like the research on knowing if someone is lying, is that it gives you a snapshot of the general population while simultaneously discarding the outliers. Mystics and healers often are considered outliers of society. It would be interesting to see how they would fare in determining when someone is lying.

I describe empathy as having the following characteristics: reception, reflection, mutuality, proper intent, and developmental level. Within the healing relationship, the intent of empathy is solely to promote the well-being of the other. It is a process of receiving sensory information about the other, reflecting that back accurately, and arriving at mutual understanding through this reception-reflection process.

My ability to empathize is based on my skill in using empathy, which can be described as a developmental level. Those who practice empathy at a high developmental level understand the concept differently than those who practice at the beginning level. While teaching graduate-level counselors, I saw this often. Beginning counselors often refer to their truth default position when meeting patients for the first time, supporting Gladwell’s argument.

Despite how poorly we often fare when reading strangers, the possibility always exists that we can make a connection. When we meet another person for the first time, it’s possible to let go of the truth default position and enter a meaningful healing relationship. We can’t do this with everyone. There are some people with whom we just can’t connect, and that’s OK. What’s exciting is that we are capable of a healing connection, setting aside our biases, deeply listening to one another, and entering the compassion space that opens the door to a shared human experience of healing.

There are two ways to look at the idea of a shared human experience. First is to look at shared context — two people witnessing the same thing, like the events of 9/11 or the JFK assassination. The two people who witnessed the same event have a shared context, and in that way, a shared human experience. This does not mean they feel or think about the event in the same way.

The second way to look at shared human experience is to identify empathy as a shared inner experience — two people sharing the feelings and sensations of the moment. Skilled empathy practitioners and the patients who have sat with them describe this process of shared inner experience. The possibility of a healing connection exists even though we often misjudge reading people.

Maybe the truth default position exists because we hope our talking with strangers will reveal the possibility of making a meaningful connection. It is this possibility that promotes growth and the development of relationships, family, and society more than the efforts to guard against problems caused by the occasional liar.

For six years, I ran a compassion questionnaire on the internet. It had two questions about the life-changing impact of relationships. One addressed the impact of a compassionate relationship, while the other addressed the impact of a harmful relationship.

Of approximately 600 respondents, over 90% rated the life impact of the compassionate relationship higher than the impact of the harmful relationship. The responses support the importance of the healing relationship, not only for experiencing the healing moment, but also for our well-being over a lifetime.

Making healthy connections makes our lives better. Knowing that a shared healing experience is possible makes living with a chronic disease like Parkinson’s, even during stressful times, easier.

***

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 Healthy Connections and Sharing Healing Experiences appeared first on Parkinson’s News Today.

How to Fortify a Relationship Amid the Pandemic Chaos

relationships, what ifs, shut in, toilet paper, serenity, laughter

My wife and I left our New England home on April 4 and moved into a St. Louis home on the 22nd — a total of 18 days in the dark, cramped quarters of various motel rooms. We have almost 50 years together and communication is one of our strong suits. But these 18 days were unusually difficult. We learned a few strategies that might make it easier for other couples who end up in quarantine or self-isolation.

The experience of dealing with the COVID-19 restrictions is not unlike managing Parkinson’s disease. The same principles are vital: sharing or asking for understanding and accommodation, making time and space for individual needs, and paying attention to communication. One could surmise that our life with Parkinson’s perhaps prepared us, in part, for the “new normal” imposed by COVID-19.

First, and probably not foremost in the minds of some, being confined to close quarters with your intimate partner tends to increase intimacy frequency. If you prepare for this, the experience can be more enjoyable. The usual diversions of life routines no longer distract. The need for intimacy may increase to help you connect with each other and express support and understanding. It can reinforce that the relationship is more accepting of the frailties of disease or ageing, and therefore that the physical person is as important as the emotional or psychological person.

Second, more time must be given to communication. You might think that you have more access to knowing the other’s needs because you are living in a confined space with your partner. Maybe that can happen when the world is not in COVID-19 chaos, or when Parkinson’s progression hasn’t created new chaos in our lives. Right now, though, so much emotion is swirling around because of the pandemic, which easily leads to misunderstandings. We found ourselves making assumptions about the other’s needs and then being wrong. Extended, close human proximity does not equate to more human understanding. That wisdom is found within a healing relationship, which is erratic and elusive during these apocalyptic times. The extra time spent by honestly and calmly asking and answering, “How are you doing?” will pay off rich dividends for the relationship.

Third, use phrases like “I feel” or “I need,” rather than “you did” or “you don’t” statements. Seems simple, but the louder the stress and chaos, the harder it is to do this. The accuracy of statements that express how you are feeling or what you need relies upon the accurate identification of emotion. Emotional intelligence is widely varied, but there is usually someone near to you who has a high EQ. It is often that person you know as a “good listener.” There are also 1-800 helplines. In these times of social distancing, with short fuses everywhere, more precise descriptions of emotions are needed. It’s not easy to stay in touch with feelings when there is a livid internal eruption happening every day. Practicing threshold management along with accurate and compassionate “I feel” statements has made our 18 days a bit easier. Mistakes will happen. These are tough times. We had our quarrels, but we tried our best not to end the day angry at each other.

In addition, we divided the room in half — my space, your space. We also tried to have a normal daily schedule, despite how obviously abnormal the situation was. We set aside time where one partner supported the other for half the day. This routine included wellness activities. We had to be flexible with the half-day guideline because on some days one partner needed more time. We took turns throwing each other life preservers when the darkness began to engulf.  We tried to be patient and be there for each other while also being open to asking for and receiving compassion.

Throughout the whole ordeal, we kept telling each other that we knew this move would be tough, but also brief, and that we didn’t want 18 days to ruin 50 years of partnership. We continue to discover new possibilities that will be useful years after COVID-19, and we seek to continue as partners living with a chronic disease.

Do you have any tips to share?

***

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 How to Fortify a Relationship Amid the Pandemic Chaos appeared first on Parkinson’s News Today.