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

heat intolerance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How I Steer My Inner Pain Conversation to a Place Where I Can Sleep

conversation

Bad pain day. Trying to keep my mind distracted. Perhaps a good show is on television. Or maybe a movie. The “off” cycle will kick in within a few hours. Pain gets worse. Last medication before bed. Time to be quiet and contemplative, but the pain intrudes upon this space. It’s always murmuring, sometimes shouting, and ever-present. Finding sleep means I need to sit in the “pause between.” I repeat the following mantra to myself:

You can do this. Breathe in: 1, 2. Breathe out: 1, 2.

Let go and allow.

My mind will have nothing to do with this “pause between” nonsense. Waving the imagined finger, my brain’s neocortex, “Neo,” interrupts and says, “How’s that to-do list coming? You’re feeling like you didn’t get much done today. You’re trying to make up for that by working on a new to-do list, but having trouble focusing. This pain sure is annoying.”

Neo continually intrudes on my search for the pause between. He can be more annoying than the pain. I respond flatly, “Yeah, nothing new.” I shift in bed to try to relax as I search for the pause between.

You can do this. Breathe in: 1, 2, 3. Breathe out: 1, 2, 3.

Let go and allow.

Neo pokes a nerve cell. “Remember what the pain was like the other night? Whoo-ee, you were tossing and turning, it felt like we were on a roller coaster!”

My night often starts with thrashing in bed. As I switch positions to find comfort, the covers take on a life of their own, and soon I am entwined by the albino boa constrictor sheets. Waves of pain wash over me as I uncoil the bed linen. Neo didn’t offer any assistance. “Could be a terrible night, you know. It’s surely starting that way. Doesn’t seem to be much you can do about it, huh? You know that each time you try to quieten down to rest, the pain gets louder. I mean, I’m doing what I’m supposed to do, reminding you of the day’s events and whatnot. But it just feels like you’re not trying to fall asleep. You know that you are failing at it.”

The “you’re not good enough” button always hit a tender spot, triggering a surge of anger mixed with worthlessness. I take deep breaths and let out a long sigh of exasperation. Throughout my life this button has been pushed more times than our president has sent a tweet.

Neo pauses for a moment before offering the following, “Lots of memories of pain are connected to punishment, oppression, and self-worth issues. But this is an old familiar path, and you know what will happen if you take that fork in the journey.”

Moving along this well-trodden path, I know that I can tune out those “old voices.” They offer nothing more than the cackling of old hens.

You can do this. Breathe in: 1, 2, 3. Breathe out: 1, 2, 3.

Let go and allow.

Neo jumps in. “We’re not finished here. You have a few things about which to worry. You are trapped in a cycle of heightened emotions, increased pain, and poor sleep.” The logic of his interruption, illustrated with an emotional soundtrack, send me into a worry spin like a dog chasing its tail. The more I worry, the more I became stuck in it. If I keep spinning, I will cross over the “you will never get back to sleep” threshold. I need to return to the pause between.

You can do this. Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Let go and allow.

As the first glimmers of change appear, my conversation partner, Neo, warns, “You know the pain is just going to get louder when you do this.”

Very firmly, without anger, I say, “I know that I can move into a pause between and then to a quiet place. I’ve done it before, and I can do it again.”

I can do this. Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Let go and allow.

Neo senses the changes. The perceptions of pain and discomfort are slowly lowering. The cool night breezes tuck me into a bed that suddenly feels very embracing. I have no more need to talk about the pain.

Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Let go and allow.

Breathe in: 1, 2, 3, 4. Breathe out: 1, 2, 3, 4.

Breathe in.

Breathe out.

Then, 15 minutes later, I am sound asleep.

***

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 I Steer My Inner Pain Conversation to a Place Where I Can Sleep appeared first on Parkinson’s News Today.

Managing Chronic Pain, Part 2: Applying a Shift in Perspective

chronic pain

Second in a series. Read part one

Pain attacks me every day, and I set aside much of my time to manage it. Chronic pain management is now a significant part of my wellness map. Pain management techniques are rooted in the conceptualization of total pain as suffering plus pain, and that some of that suffering is connected to dysregulated emotions. I know that I can make positive changes that will reduce my daily pain levels.

Recently, pain has become a daily experience and has since become the focus of my wellness map tweaks. My tweaking is a more concentrated look at the “pause between.” This is a mental, and often physical, pause that I take before I continue to think or act to decrease the occurrence of dysregulated emotions and their consequences. Putting this into practice decreases my suffering, reduces my frustrations, and thus lowers my perception of pain.

Pain often triggers the “fight or flight” response, which then activates emotion. Emotions generated by pain are followed by thought and often action — a feedback loop designed to keep us safe from danger. But the loop can spin almost out of control. To prevent it from doing so, it is possible to insert a pause in the loop between pain and emotion, emotion and thought, and thought and action.

The pause between is first brought into focus through recognizing its potential and directing attention to that possibility. This represents a shift in perspective that says, “I can practice the pause between, and it will lower my pain.” It is an adjustment in how the mind is used during the day. Wherever I decide to take my mind each day is the easier path to walk on the following one. The brain likes familiar roads.

Sitting with the pause between takes daily practice. Maybe I should be grateful for my chronic pain, which reminds me of the importance of such a practice. On some days, my Parkinson’s disease-related chronic pain is draining — at all levels. No matter what I do, I can’t sit in the pause between. But I firmly believe in neural plasticity. If I keep my brain practicing pain management, then it will become easier.

The construction of a wellness map enhances its success. The CHRONDI elements can serve this function. Techniques that help to quiet the mind and slow it down allow more opportunities to sit in the pause between. A mentor, something I have been for many students, can also help you to experience the pause between and arrive at a better understanding of your resistance to sitting there.

The pause is a suspended moment emptied of normal emotion, thought, or action. Judgment is halted, and focus is aimed at sitting in the pause between. It is very brief at first, but with practice, the pause between can become longer in duration and more easily accessible.

It is like a fork in the road. Choose which fork to take, initially using thought and action, and eventually emotion. The pause between helps to change patterns of thought and action, decreasing the frequency of those that contribute to suffering. If you decide to select the other fork, the pause gives us the time to walk down that new path, implementing new patterns of thought and action, thereby helping to reduce suffering and lessen pain.

From the place of sitting in the pause between one can apply any of a wide range of techniques. Following are a few of my suggestions:

  • Divert your attention to other tasks — for example, reading a book or playing a video game.
  • Engage in physical exercise; take a walk or a bicycle ride.
  • Get involved in a positive activity that brings meaning and purpose.
  • Meditate.
  • Talk to someone who can help.
  • Use T.O.O.T.S. — “time out on the spot.”
  • Calmly and rationally evaluate your choice of thoughts and/or actions, and choose wisely.

I use all of these techniques. They work better when I recognize and start first with the pause between and the goal of reducing personal suffering.

What techniques do you use to help to reduce your suffering? Please share your story 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 Managing Chronic Pain, Part 2: Applying a Shift in Perspective appeared first on Parkinson’s News Today.

Managing Chronic Pain, Part 1: Understanding a Shift in Perspective

Dr. C

Pain and suffering are not the same. An internet search for “difference between pain and suffering” yields dozens of sites for writers and practitioners, like Ashley Pennewill and Ann Marie Gaudon, who extol the benefits to be gained from this conceptualization. The repeated message is that pain is the physical experience connected to insult and injury, while suffering is the “story” we tell ourselves about the pain experience. Our total pain experience is the sum of physical pain and suffering, with each affecting the other.

Shifting my perspective on chronic pain to one that understands the role of suffering in the total pain experience has helped me to better manage my chronic pain (including discontinuing opioid treatment), decrease the occurrence of dysregulated emotions, and achieve an overall improvement in well-being.

The difference between pain and suffering is an encyclopedic topic that has been the focus of writings since at least the time of the Buddha. A focus on the mind-body link examines how we can use that information to reduce suffering so that we can better manage chronic pain.

The mind/body link as an attention-to-stimulus process was partially described in my column on irritability. The process of pain stimulus creates the need for attention to the stimulus. The feelings and thoughts associated with the stimulus escalate. It is a feedback loop that helps us in the face of danger, but as the feedback cycles out of control, emotions often become unregulated and out of control. The spiraling loop can become a barrier to well-being. The experience of emotion dysregulation (see figure) is one link between the pain, feedback, attention processes, and suffering.

(Graphic by Dr. C)

The figure illustrates emotion dysregulation as an experience connected to exceeding one’s emotion dysregulation threshold (EDT) due to increasing emotional intensity over time (dysregulation delay, or DD). Once the threshold is crossed, we experience emotional dysregulation (EDE). This is followed by a cooling of the emotion intensity (CD). The goal is to reduce the intensity and duration of the emotional dysregulation. This is where the shift in perception is applied.

It is a shift from feeling like we can’t do anything to keep our emotions from getting out of control to an understanding and belief that we can change the escalation. It is adopting the perception that we have some control over this dysregulation and that, given the nature of neural plasticity, there is the possibility of reducing the intensity of dysregulation experiences and lengthening dysregulation delay times. This success can lead to less suffering and make it easier to manage chronic pain.

Pain is reported by many Parkinson’s patients. “Among the different forms of PD-related pain, musculoskeletal pain is the most common form, accounting for 40%–90% of reported pain in PD patients,” according to a paper by Orjan Skogar and Johan Lokk.

“Individuals with Parkinson disease (PD) frequently suffer from pain that interferes with their quality of life but may remain under-recognized and inadequately treated,” reports Neurology Times, citing a study published in the Journal of Neurology. I am one of these individuals. I have good days and very bad days — the ugly days.

The Neurology Times article continues, “’We found pain to be highly frequent, quality of life-impairing but insufficiently and unsystematically treated,’ wrote first author Carsten Buhmann, MD, of the University Medical Center, Hamburg-Eppendorf (Hamburg, Germany) and colleagues.”

When we live with Parkinson’s and experience pain, we are not alone. The Parkinson’s Foundation says, “Chronic pain is twice as common among people with PD as it is in people without it. In fact, more than 80 percent of people with PD report experiencing pain and say it’s their most troubling non-motor symptom.”

I am in pain most of the time. I cross the threshold when I am having difficulty managing the pain and the connected feedback loop. If I add some additional stressor — emotional, physical, or situational — that feeds the emotional turmoil, and I cross the threshold sooner. Accepting that I can do something about it (and have the skills) is the shift in perspective. It is a shift from being a servant to the whims of my emotions and their consequences to presenting as a calm, centered being who seeks continued progress on his wellness map.

I am still learning and practicing techniques to help me shift my perspective so that I can manage my chronic pain more successfully. I will discuss some of these techniques in Part 2 of this series. Attempts to change human practices are only as effective as the intent behind them. The shift in perspective allows us to firmly establish this proper intent.

What are your thoughts about emotion dysregulation and human suffering? Please share in the comments below.

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

The post Managing Chronic Pain, Part 1: Understanding a Shift in Perspective appeared first on Parkinson’s News Today.

By Learning to Shift Perspective, We Can Change What’s Possible

Dr. C

I hate exercise! Both my pain and fatigue increase when I exercise. These are disabling Parkinson’s disease symptoms, and both trigger the fight-or-flight response that often manifests as “the grouch.” I have not found an easy way of exercising with Parkinson’s pain and fatigue, but I have found ways to shift my perspective. Shifting perspective opens up the possibility of experiencing enjoyment from exercise.

One of the most important parts of a Parkinson’s wellness map is exercise. But here’s the catch: It’s difficult to do with regularity. We know it works! Yet, knowing what is good for wellness is not the same as doing it. The doing part of exercise — showing up three to four times a week — is difficult with all the chronic disease barriers. It’s easy to feel defeated before even starting.

The way around this apparent Catch-22 is to shift one’s perspective on exercise. I mentioned the idea of shifting perspective in connection to wellness in a column about moments of well-being. The shift I need with regard to exercise is one that will get me off the sofa and into exercising. I am not getting off the sofa to do something I hate, but rather to do an enjoyable, creative project that involves exercise: landscaping to produce gardens. It’s a good exercise to keep the trunk strong, which helps prevent falls.

It takes a bit of perseverance to get into my work clothes, strap on the heavy work boots, find the hat and sunglasses, and then head out the door. Surveying the work ahead — which is sometimes a bit daunting — I start with light work to warm up. Walk, then shovel, and maybe rake, before getting behind the wheelbarrow to move gravel or dirt from one location to another. Pause to hear the birds sing, marvel at the variety of flower blooms and fragrances. Pretty quickly, the world slips away, replaced by the Zen of gardening.

My Fitbit reminds me when a time for medication is coming up and keeps track of my heart rate. I take lots of water breaks! By the time two hours have passed, my work shirt is drenched with sweat — as much as, if not more than, the amount of water I’ve consumed. In the Zen garden moments, the mind is free of the worries of Parkinson’s and vision problems. That feeling remains with me, not as a false euphoria, but as a deep-rooted sense of well-being.

There are many ways that shifting perspective can open wellness possibilities. A nurse shared a wonderful example. She was a smoker from her early teen years, and now in her 30s, she decided to quit. Six months without a smoke and she says, “I had this memory of how much I enjoyed smoking.” So, she bummed a cigarette and immediately got sick from smoking it. Recounting the event, she says, “I can remember the horrid feeling as clear today as if it just happened. I never had the urge to smoke again after that.” She shifted her perspective from enjoying smoking to thinking of it as a horrid, sickening experience. Shifting perspective opened up the possibility of wellness.

There is research supporting the practice of shifting perspective in a way that promotes well-being. The placebo effect is a mind/body interaction where the patient is convinced of treatment efficacy, which is a shift in perspective. Also, in many cases of “miracle” disease remission, a common theme is the patient’s ability to shift perspective. Reframing a problem can provide a new perspective and lead to new solutions.

The ability to shift perspective may also improve our ability to adapt to stressful times and to become more resilient, and therefore more open to new possibilities. The shifting of perspective causes us to shift our focus to a new intention, a new possibility. I hated exercise, and my intention was to avoid it. The shift in perspective offered the new intention of enjoyment and the possibility of a beautiful garden, along with a healthier body, in spite of the chronic disease limitations.

How has the ability to shift your perspective helped you? Please share your story 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 By Learning to Shift Perspective, We Can Change What’s Possible appeared first on Parkinson’s News Today.

Having a Wellness Map and a Healing Perspective Can Lead to Well-being Moments

wellness map

A man walks into a store and asks for a map. The storekeeper responds, “We have lots of maps. Where are you going?” The man snaps, “Anywhere but here.” The shopkeeper says, “Sorry. We don’t have a map to ‘anywhere but here.’”

When I was first hit with a sudden loss of vision, I wanted to escape. Anywhere was better than here. I thought I had lost my way to well-being because all I saw was a distorted view of life through my obscured vision. It seemed as if I had no wellness map. It took me a while to realize that there is no wellness map to “anywhere but here.” Instead, a wellness map can help us move toward an increased probability for well-being moments. The first step in that direction is to gain a perspective that promotes healing.

A well-being moment can be described as bliss, flow, mystical, and healing. It is characterized by clear euphoria, awe, sense of time loss, a shift in perception, and wisdom. Well-being moments are holistic, touching mind, body, emotions, and soul. These characteristics distinguish them from artificial “feel-good” moments.

Parkinson’s is a long, gradual, progressive disease with many changes and losses. The CHRONDI Creed illustrates some of the changes I made along the way to my wellness map. I had moments when I realized the extent of my loss — in my physical stamina, my ability to work, my coordination, and my ability to easily engage in activities that I had previously enjoyed. Many of the changes incorporated a shift in perspective, which I described in a previous column.

Following my vision loss in combination with my Parkinson’s, the first tweak I made to my wellness map was to stop perseverating on the loss and to shift to seeking wisdom. This adjustment involves more than moving past grief and accepting the loss; it is a shift of focus away from loss, disease, and suffering, and on to what has been gained in this new Parkinson’s reality. The first tweak to the wellness map is shifting the perspective about the trauma to allow for more moments of well-being.

Some people are confused about well-being. Much suffering is linked to chasing after its feel-good aspect. Some think that the fleeting feel-good moment is all that there is as they reach out and grasp — or purposefully try to create — that moment of rapture. Grasping the butterfly destroys its wings; not grasping allows wellness to unfold. Tweaks to a wellness map are aimed at opening the possibility for well-being moments to occur and holding open that possibility with compassion, lightness, and patience. I have had times when I’ve lost a sense of well-being and had trouble using my map, but shifting to a healing perspective helped me to find my way back.

Do I have moments when Parkinson’s wears me down or makes me frustrated? Of course. Does my vision loss sometimes feel like “just one more thing” I’ve lost in my life? Absolutely. But each day is spent with the intent that I can continue to create my wellness map and walk toward a sense of well-being despite these challenges.

Having Parkinson’s and vision loss does not make me less of a person — to myself, my family, my friends, and my contributions to the world at large. These challenges merely represent a new way of seeing and interacting with the world to which I can adjust.

I believe that events are intertwined across time and space. My vision loss was connected to more of my life, including how I experienced Parkinson’s, than I was willing — or perhaps able — to understand at the time. The shift in perspective helped me to understand the meaning of my experiences, decrease the angst, and increase the frequency of well-being moments.

Well-being moments cannot be forced to happen. Alternatively, we create a life, an inner relational space, that is more conducive to the occurrence of well-being moments. Learning how to wisely access a shift in perspective is an essential part of living within that sacred relational space.

Well-being moments are characteristically difficult to describe. Perhaps we can come together and share our experiences of these moments in the face of Parkinson’s, and in doing so, expand our collective understanding.

Please share your well-being moment experiences 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 Having a Wellness Map and a Healing Perspective Can Lead to Well-being Moments appeared first on Parkinson’s News Today.

Wellness: Finding the Way to Well-being

well-being

Wellness is the map of actions and thoughts that we use to guide us toward a higher quality of life — one with more well-being moments. Our wellness map is tailored to meet our individual needs and must be flexible and adaptable. Life throws out frequent curveballs, and human resilience depends on how well we can adapt our wellness map. I have Parkinson’s, and I continually tweak the wellness map to the changing conditions of this progressive disease.

My new onset of vision loss required more than tweaks; it called for some significant changes to my wellness map. Understanding the basic structure of a wellness map is helping me to find my way to further moments of well-being.

The process of making a wellness map involves a design that meets individual needs, accesses available resources, is implemented, and is followed up. A successful wellness map will utilize the resources available to the individual, including support, strengths, and history of well-being experiences. The wellness map should be implemented with compassion and sacred intent. Finally, a follow-up will evaluate the map’s success. These processes are all intertwined into a holistic view of wellness.

Few of us are professionally trained in all of the complexities of human wellness. We need knowledge of illnesses and available treatments, and also the wisdom about the efficacy of wellness possibilities. We require wisdom from the experts to keep our wellness map functioning at the highest possible degree. The process of choosing the experts and incorporating their wisdom into our personal wellness plan is tied into the science of human decision-making.

Each of us has individual wellness needs, and we use our own decision-making processes to design and implement our wellness map. The CHRONDI Creed contains the fundamental elements for building a Parkinson’s wellness map, but it doesn’t address the process of upgrading one’s personal map in the face of new trauma.

Vision loss affects Parkinson’s in ways that I am still understanding. Vision has been a big part of how I enjoyed the beauty and science of the world. Writing, science research, photography, artwork, flower gardens, viewing the world with its multitude of colors and shapes provided me with hours of enjoyment. Loss of vision left me feeling disconnected from life. Things didn’t look as bright and beautiful as before. The pleasure that I once received from visual stimuli was not the same, resulting in a deeper understanding of how important “pleasure chemistry” and happiness are to the treatment of Parkinson’s — and the risks of losing that or trying to replace it artificially. My new wellness map will take all of this into consideration.

Some days I have no clear vision of what I need to do (no pun intended). Shifting to the basics helps — exercise, eating well, quiet mind, and gratitude. It’s a focus on healing, with little language (internal and external) about feeling sick. This doesn’t mean I should ignore my physical ailments and the treatments. It means that the sickness treatments are wrapped up in a comforting blanket of wellness. Sometimes, fatigue hits hard, and I don’t have the energy to pursue wellness mapmaking. Back to basics: rest, meditate, and let it go. I will continue tomorrow. Build patience and compassion into the wellness map.

Redesigning a wellness map is about choosing wisely how to use your time. Stay away from toxic thinking and behaviors and avoid unhealthy environments. Spend more time engaged in wellness-related thoughts and actions — those that have the greatest potential for leading to moments of well-being. Focus on being well, rather than complaining about suffering.

One carves out a little piece of time from the large amount dedicated to thinking or acting in response to sickness, and then allocates that little block of time to wellness. The wellness map is built with a practice of thought and action that bolsters the healing process and helps to hold open the door to more moments of well-being. It takes resilience, patience, and hard work to forge an improved wellness map. But it is never too late to start working on it.

What changes have you had to make to your wellness map recently?

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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 Wellness: Finding the Way to Well-being appeared first on Parkinson’s News Today.

Wellness Journey: Finding My Way on the Map

PD Dr. C's Journey, loss of vision

How do I know when I’m getting well?

There’s that child’s voice yelling from the back seat of the car reminding me that time waits for no man. I would like to say: “Hey, we are almost there?” But I am not sure what “there” looks like.

Perhaps getting well is just “feeling like your old self again.” Saying that as a way of describing a wellness process doesn’t clearly describe the phenomena occurring during the process of getting well. What it does communicate is the idea that getting well is something people experience. People do return to an experience of “my old self” again.

The recent physical issue with my eyes, along with Parkinson’s disease, has forced me into a different perspective. I can’t give the answer I’d like to the child’s earworm, “Are we there yet?” I can answer: “The GPS has us right on track.”

Wellness map

We each have our own definition of wellness. We know that sense of feeling “like my old self.” It’s a map showing us a way from our current state to one where we feel better. There are signposts on the map that point us toward wellness. How we have come to understand these signs is likely to be as varied as Parkinson’s. It is easy in life to become so overwhelmed that it seems as if there are no signposts, and sometimes, no map. I flail about for a while, get all emotional. With help from family and friends, I return to my old self, a shift toward wellness.

I constantly remind myself that there is an atlas. To believe anything else means to disbelieve in the holistic scientific philosophy that is the foundation of my alter ego, “Dr. C.” It’s a fight to push rational thoughts over emotion in order to regulate the emotional effects following an injury or setback. It is hard to do, but the wellness map is worth the effort. Regulation of emotion is part of my wellness map.

Commonalities

I have heard, “If you have met a person with Parkinson’s, then you have met one person with Parkinson’s.” Parkinson’s expresses itself uniquely in each of our lives. In the same way, our map of wellness — or way of living well with Parkinson’s — is specific to our own way of experiencing the world. Even though Parkinson’s is slightly different for everyone, there are some shared phenomena. For example, motor control problems, change in cognitive performance, and experiencing “off-and-on” periods are just a few commonalities. It’s the shared phenomenon that helps to provide a common language for communication about not only Parkinson’s but also about our journey using the map of wellness.

Time to heal

One of the first things I do when a serious injury happens to me — and I feel upset and/or confused — is simplify life. I need time to heal. I need to make time in life to simplify the demands on my time to free up my schedule for wellness. It must be a conscious decision to put more time into wellness and to do so with a committed resilience and a sacred intent. I agree to do what I know I need to do for myself in order to heal. I am not talking about some selfish dive into a quart of Ben & Jerry’s without offering to buy a pint for your partner.

Healing while taking care of others is not only possible, it is compatible. The sense of personal sacred healing space is a space without distraction. It is focused on a state of being which best supports the healing needs at that interconnected moment. Getting back to that space after getting smacked in the face is my current journey. This is where practice has helped me. It is part of my wellness map.

I have written about the CHRONDI Creed and the compassionate warrior’s mental frame. My map includes such a mental framework. Ideally, it is not angry. Rather, it is filled with energy that can be directed as needed as a warrior in terms of preparations, resilience, and sacred intent. The idea of a sacred intent connected to our personal wellness journey is not as strange as it might seem.

In my postdoctoral thesis, I explored how for millennia we humans held great reverence for those who could facilitate the well-being of the tribe members. Sacred is not the same as religious. It is more about a reverence for the process. I have reverence for the beauty of science and for the spiritual aspects of who we are as humans. For me, there is so much intertwining to find a peaceful coexistence between the mystic side and the scientific side.

In writing about wellness, I can’t let go of one side in favor of the other. It is going to be a challenge to blend the two into a new view.

What is on your wellness map? Share your ideas in the comments.

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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 Wellness Journey: Finding My Way on the Map appeared first on Parkinson’s News Today.

The Link Between Compassionate Support and Wellness

PD Dr. C's Journey, loss of vision

It has been rough going recently, after I acquired a “legally blind” diagnosis on top of Parkinson’s disease. It has been a month, and part of the reason I am back to column writing so soon is because of the compassionate support I received, which was freely given. It has made a big difference in my life. This compassionate support has bolstered my wellness program and given me the added strength I needed to move forward.

People speak of wellness as some sort of bonus you get from doing something because it’s “good for you,” like eating vegetables or walking 10,000 steps a day. But healthful practices are not the only factor in the wellness process. The wellness that comes from compassionate support is more than that.

When support is given in a truly compassionate way, it reflects not only on the act of support, but also on the possibility that we can be a “better self.” It doesn’t matter how bad things appear because compassionate support can make things better. It works.

There are lots of ways to block yourself from connecting to the compassion others offer. Sometimes, it seems easier to give than to receive. This month, I didn’t want to go to the local Parkinson’s support group. I felt like a failure, to everyone else and to myself. The pain and suffering I was going through created a wall between me and the rest of the world.

My partner of almost 50 years convinced me to go. Allowing myself to be vulnerable, to let down those walls and enjoy the support group, also allowed me to feel this potential for the betterment of mankind. I connected to that for my personal well-being. Moaning about how terrible I feel doesn’t get me anywhere. I am trying to focus on the here and now, to keep a positive attitude about tomorrow.

Over the past four years, my partner and I have moved to a new house that is more ADA-accessible, changed career focus, rebuilt our caregiver/social network, and dealt with each untoward event that has popped up along the way. My partner walked with me through all of this while having her own medical issues. Often fatigued and occasionally overwhelmed, she fought hard to improve our quality of life. This included kicking me in the butt occasionally, and being firm about the importance of continuing to engage in life.

There is much research that lends credence to this idea that humans helping one another — sharing in the process of compassionate support — can make a difference in wellness. A recent study showed that a stronger purpose in life was associated with lower all-cause mortality. Several interventions have been clinically reviewed, including well-being therapy, that demonstrated improvements in purpose in life, quality of life, and various health outcomes.

The “O” in CHRONDI is for “Others.” It speaks to the interconnectedness we have with each other, connections that can help with our wellness. This is not about some supernatural phenomena or “butterfly effect.” Rather, it is about a human relationship phenomenon that exists to share a flow moment in time. It is the experience of gratification after allowing myself to embrace the compassion being given. The compassion given and received (well-being experienced phenomenon) is a fundamental part of the relationship I call the healing relationship.

There can be resistance to the healing relationship that is connected to compassionate support. Connectedness doesn’t usurp identity. I sit on the island of individuality often. The idea of self has special meaning for me. It’s the “I” in CHRONDI. When it comes to wellness, that island is the last place I want to be.

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I want to add a special note of recognition and gratitude to my first-line editor, Robin Ketchen; the BioNews Services team, especially Brad Dell and Dave Boddiger; my family and friends; the New London and Concord Parkinson’s support groups; and all those readers of my column whose comments were so encouraging for me to continue writing. A special hug to my wife, who reminds me of where I need to be, helps me get to the destination, and has supported the “journey” for all these decades. 

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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 Link Between Compassionate Support and Wellness appeared first on Parkinson’s News Today.

A Message to Readers: It’s Not Just the Parkinson’s Disease

PD Dr. C's Journey, loss of vision

In a previous column that I wrote about courage, I mentioned an eye disease I have for which I receive monthly eye injections. Yes, you read that correctly. I get a needle in my eye. Actually, I get two needles — one injection contains additional anesthetic medicine after the topical application of a numbing agent, while the second injection contains chemotherapy.

The disease is unstable and progressive. Treatment is not the same thing as a cure. My providers do their very best to keep things under control. Unfortunately, I recently had a dramatic decompensation that has left me close to legally blind. It’s not the Parkinson’s disease alone that makes life difficult, but rather all the other medical “stuff” that gets thrown on top of it. I will be seeing another specialist for assessment and more treatment. But right now, the loss of vision makes it much more difficult to do the quality columns I am so fond of writing for my readers. It’s hard to adjust when such events hit unexpectedly and steal away another part of my self-identity.

Having been through other traumatic events in my life (and counseled others through traumatic injury), I know there is a process. There is a grieving process that has famously been described by Elizabeth Kubler-Ross. There is also a recovery process. Not all will be as bad during the healing process as it initially appears. A flood of emotions needs to be taken in, understood, processed, and then let go so that the healing may continue. Time is needed to make life adjustments to the effects of the physical trauma. All of this takes time, patience, and a gentleness with me.

The first emotions I work through are anger: “Why me? It’s not fair!” Then comes the self-pity: “This is too hard. I just can’t handle it. I wish someone would come and make it all better.”

Anger is a normal response. But anger and I just don’t do well together. I can easily become “The Grouch.” I am an ugly grouch, mostly because of what I call “spilling out behavior.” It’s been a bad day and the anger needs to go somewhere, so it spills out onto those closest to me. Talk about unfair!  I have way too many skills to get into a verbal fight with those I care about.

Self-pity also spills out onto all of those around me. We may not realize it, but walking around with that dark cloud overhead casts a dark shadow on those closest to us. Clinging to the hope that someone will save us from our own fate if we just whimper and whine loud enough does nothing but create more suffering. The choice, then, is to accept that something bad happened and that is just the way it is. Time to pull it together and attack the new challenges.

Don’t get me wrong. I am not saying I feel all rosy and chipper about what has happened. I am upset and constantly reminded of the situation. Every time I open my eyes, I am forced to face head-on what has happened. If I let the emotions overwhelm me, I can’t move forward. If I can’t move forward, then my self-identity is headed for extinction. The choice is to accept the fact that something bad has happened, and it is time to figure out how to deal with it.

Part of figuring out how to deal with a dramatic loss of vision will involve all those changes and adaptations that need to be put in place in order to maintain a high quality of life. This new journey has just begun, and I will return to writing columns for this group of readers. Right now, though, I need to take a short break while I complete the medical procedures and then put into place any adaptations necessary for helping me to see the computer screen, to use pen and paper, and to explore other adaptive equipment.

Thanks to all my readers, editors, writers, and staff at BioNews Services for their kind words of support and encouragement. In the esteemed words of the former governor of California, “I’ll be 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 A Message to Readers: It’s Not Just the Parkinson’s Disease appeared first on Parkinson’s News Today.