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We Are Shut In, Not Shut Out

shut in

My chronic disease has forced me to stay home for a week after an exhausting recent trip to St. Louis. When my symptoms force me to curtail engagement outside the home, I become a “shut-in.”

Many are entering voluntary home confinement due to COVID-19. People also are experiencing mandatory lockdowns by decree in several states. Confinement is probably a new and uncomfortable experience for many, but the chronic disease community has learned to live with restricted access without shutting out the world. We have a pool of wisdom that can help people with this difficult adjustment.

Following are tips to help with this forced — but temporary — confinement.

Stay home, but stay engaged

Embrace your responsibility to help curb COVID-19. Practice social distancing and disinfect your hands and hard surfaces. Reach out when necessary to secure food and shelter for you and your family. Respect the mandatory lockdown requirements for nonessential tasks and travel. Support essential workers in the community who are vital to maintaining our health.

Find ways to stay connected with co-workers, friends, and family despite social distancing. Use the internet or your phone, but don’t stay glued to the screen. Pick one block of time every day to get news updates. Constant and relentless news will only escalate your emotions. Being informed is important; being overwhelmed is not.

Patience and communication are key

Realize that working from home is different than relocating to another building for work. Be patient with yourself and the people around you as you adjust. Keep a regular schedule as much as you can. It is often tempting to work all of the time. Schedule meals, family time, and activities into your day, just as you have before. It takes time to adjust to the disruption of our “normal” work routine.

If you live with other people, you must spend more time on communication. Personal space becomes a priority. Set aside a place in your home that is your private space and communicate that boundary to the people living with you. Access that space when you need to but don’t get lost there.

Live well

Make time for threshold management. Emotions surrounding COVID-19 can easily escalate to mass hysteria. It is easy to become emotionally overwhelmed, but only you can quiet your mind during a lockdown. Remember, this is temporary. Just put one foot in front of the other and stay safe.

Social distancing is an opportunity to engage in activities you’ve always wanted to do but never had the time. I retrained my eyes to use eccentric viewing automatically, which took hundreds of hours. Pick something important, something that will lift your spirits, and something that will improve your quality of life. You are shut in, not shut out. You may be locked down but not locked out of contact.

Maintain healthy life habits. Try not to let stress trigger a regression to old, unhealthy habits. Eat well, exercise, rest, and use windows, patios, and decks to get a daily dose of sunshine and fresh air.

These are difficult times. Most people don’t have the experience of being forced into home confinement by a disease, but the chronic disease community has a wealth of experience with such matters. Hopefully, this column will generate shared wisdom about being shut in and not shut out. We can help during this crisis. Please send this column to everyone you know and post it on social media.

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

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Managing Stress by Expecting the Unexpected

unexpected

Travel beyond our homes is eerie right now with the onslaught of the coronavirus pandemic. We feel as if we’re living a dystopian sci-fi film, with people in masks and gloves waving apocalyptic messages from the World Health Organization and U.S. federal and state governments.

My immune system isn’t like it was when I was younger. I wear gloves for every outing. I wash my hands and apply antibacterial solutions. But you just can’t prepare for every possibility when traveling halfway across the continent. Expect the unexpected and the stress is more manageable.

Sitting for more than two hours is difficult for me. My muscles become rigid and painful. I resemble the Tin Man in “The Wizard of Oz.” Changing positions and making slight movements can ease the discomfort.

The first leg of our flight was great. I had lots of room due to a shortage of passengers. After switching planes for the second leg of the trip, I was in the middle seat. Despite the availability of other seating accommodations, a very large person decided to sit next to me in the aisle seat.

I ended up draping myself over my partner. I focused on a lot of calming breath work. It’s not like I can spend weeks in an airplane cabin simulator learning how to be at peace with a body that makes a lot of noise. Expect the unexpected.

I’m approved for medical marijuana use by my providers at home. I find it useful for pain management as it helps to reduce rigidity and addresses pain receptors. When deciding to relocate, we chose the Illinois side of the St. Louis metropolitan area because marijuana is legal there for both medical and recreational purposes.

Recreational access was important because it will take time to get approved for medical marijuana after I establish residency. Federal law says I can’t transport this medication across state borders — even for medical purposes. So, we had to find a dispensary in Illinois during our house-hunting trip.

Because we had made our plans and reservations two months in advance, we anticipated the weather would be warmer there as it usually is this time of year. We thought the dispensary “experience” would allow access quickly and efficiently, much as we have back home.

Instead, it was a four-hour wait in 40-degree weather with a brisk wind and only two fleece jackets for outerwear. That was my partner handling the unexpected — waiting in line, surrounded by a hundred other folks.

Back in the car, I was battling pain surges — sternocleidomastoid attacks — every five to 10 minutes over those four hours. Then, in the middle of that, I really, really had to find a restroom. I didn’t know where I was, had never been there before, and felt like roadkill.

Looking out the car window across the parking lot, I saw a big sign: “Gateway Convention Center.” Should be a restroom there, I surmised. I found one women’s restroom, then two more women’s restrooms down the hall. I said to myself, “What? Where’s the men’s restroom?”

I’m all for what architects identify as “potty parity” in their design elements. Potty parity is calculating the number of available restrooms by anticipating how many women and men will access public facilities. I know the number of women in most public accommodations greatly outnumber the men. But there is a time when a man needs to do what a man needs to do!

Parkinson’s patients should not postpone their use of the restroom because of the additional discomfort that can happen when one tries to “hold it back for too long.” I was quickly approaching that critical impasse as I found three women’s restrooms and no men’s restrooms. Doubled over and dashing at the same time (quite a sight), I saw a male custodian and thought, “Please, let him know where the men’s room is.” He did.

There is no way to prepare for this sequence of events. The unexpected will happen. The best we can do is embrace the unexpected, as well as the challenges and the opportunities that come with adapting to new situations.

Studies have shown that people who experience anticipated stressors have fewer physiological reactions to those stressors than people who experience unanticipated stressors. For example, receiving electric shocks but not knowing when the shocks will be delivered will increase the stress reactions. The unexpected can ignite our fight-or-flight chemical maelstrom, pushing us close to the threshold.

The unexpected carries with it the unknown, a “cloud of unknowing,” a dissonance that drives demons into our desperation. Embracing the unexpected without a fear-based focus can decrease the effects of stress and shift the balance toward well-being and a positive outcome.

A positive outcome from our cross-country efforts: We found a home we really like. It was stressful but made easier by practicing brain therapy, including embracing the unexpected.

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

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Going Numb Means Going Nowhere in Trying Times

numb

Sobbing, she throws her arms around me. “I just can’t take one more thing. I’m totally overwhelmed. All the things I need to attend to are flying around me, and as I try to grasp onto one, I come away empty.” She rests in my embrace and the storm slowly subsides. Lying with her is like being in the middle of a tornado.

Toto and the Wicked Witch share the violent winds of her emotional upheaval as I watch her life swirl around her. I, too, feel overwhelmed and have little room for any additional feeling from any source. I want to jump in the car and drive away to a greener pasture, but I find that there is no place away from myself except that which I create. Then, as if someone dropped a house on me, I shifted into the altered state of being numb.

During my years of clinical practice, I saw many patients use the “numb space” as a form of protection during their recovery from a traumatic injury. They walk around glassy-eyed, seemingly lost in their own inner space. Conversations with them cover only the superficial generalities of daily life.

I’ve always appreciated the need for people to create their own healing space and never pushed against that space without informed consent. Right now, it seems that I need the numb space as part of staying healthy through the stress of moving.

The problem is that the numb space doesn’t fit me very well. In some ways it’s quiet and comforting. But it takes a lot of energy to put up all the blockades necessary to force that numb space into existence.

The numb space should not be confused with the quiet stillness one can discover through the diligent practice of meditation. Forcibly blocking out all feelings is not a quiet experience, and it’s difficult for me to maintain. Emotions have, and continue to be, an important way that I see the world. Being legally blind, I need all the extra eyes I can get.

The numb space is also difficult for my partner. She experiences it as a retreat from the intimacy and sharing that we have had for almost 50 years. With Parkinson’s, I can’t always join her on the simple errands of shopping and going to the post office, or with other chores. In addition to the loneliness of not doing things we used to do together, going numb widens that intimate and shared space between us.

We usually can work around the Parkinson’s issues and the “off” times to schedule trips out. Going numb means that even when we’re together, an emotional and spiritual separation exists in our relationship. Add to that all the swirling activity of selling and buying a home, preparing for the move, and the paperwork involved in relocating, and she feels that even more responsibility is being placed upon her, and less time is set aside for her to recover and recharge.

When Parkinson’s causes the loss of physical abilities, partners must rely on the underpinnings of their friendship, love, and communication through the challenges. When those parts of the relationship face the numb space, it feels as if there is little left. We both recognize it and make every effort to reach out to diminish the effects of the retreat.

She has often said that she doesn’t want to be identified as a caretaker; she prefers to keep her relationship with me as a partner. To her, being a “caretaker” implies that there is a clinical aspect to the relationship, or a nonemotional entity that merely provides transportation and makes sure that meals are prepared and the house is clean. Being a partner means so much more, and she will not trade being a partner for a “caretaker.” So, we work together, as we have done for so many years, to give each other support, even though the needs and methods of support have changed.

I see the numb space as temporary, an oasis or break from the storm. It is not a destination because it leads nowhere. People get in trouble when they try to make the numb space a permanent destination to visit daily, by whatever means. It may be harder to stay in touch with feelings during stressful times in life, but brain therapy is about taking the road less traveled and exercising your brain to build new neural connections.

“Use it or lose it,” and remember that going numb is going nowhere.

Have you used the numb space to help you cope with life? Please share your thoughts 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 Going Numb Means Going Nowhere in Trying Times appeared first on Parkinson’s News Today.

Can Brain Therapy Help with the Stress of Moving?

brain therapy

“Hey, Doc, you don’t look so good. Like a walking zombie,” Neo says with genuine concern. (Neo is my brain’s neocortex. I’ve mentioned him in previous columns.)

I let out a bigger sigh than usual. “This move to St. Louis, Missouri, halfway across the country is unusually difficult. The surges of exaggerated mood (SEM) attacks are worse with stress. While preparing to move, I am practicing mindful movement as often as possible and supporting my partner through the process. I am also practicing brain therapy to moderate these SEM attacks. I feel like ‘The Walking Dead‘ because I’m still not fully recovered from the ruin of stagnation.”

Neo snorts, “You have always been your worst enemy, pushing yourself to exhaustion. Maybe the old ways aren’t working for you anymore. You need to take a good dose of your own advice!”

Neo always surprises me by how he cuts to the heart of the matter. “Absolutely!” I respond. “I have to find a new way. That’s what this brain therapy is about. It’s a new way of monitoring and changing how I live with the symptoms of chronic illness, especially the SEM attacks.”

“Never heard of such a thing. How can you prove this brain therapy works for anybody but yourself?” Neo doesn’t completely discount my idea, but he’s not buying it 100 percent.

“I am in the hypothesis clarification stage right now,” I respond with confidence. “Not ready yet to explore the therapeutic efficacy of brain therapy. We are still exploring the idea that the brain has a built-in conductor, which can be trained to moderate the SEM attacks.”

Neo ponders this idea. “Have you found any clues that might indicate what this might look like?”

My thoughts start flowing. “It’s preliminary, but perhaps brain therapy will include wellness mapmaking using the CHRONDI Creed, threshold management, mindful movement, a psychological awareness method called self-monitoring, and regular involvement in novel problem-solving.”

Neo’s concentration is glazing over. “That’s a lot for a person to try to do when they have to battle a chronic disease, support a partner with a chronic disease, and deal with the stress of moving.”

“Getting overwhelmed happens to me every day,” I tell him. “If I can practice high self-monitoring, it helps to keep things in check. It’s not about perfection, but rather calm reflection. No matter what’s in front of me, I try to calmly reflect on my perceptions prior to acting. On the good days, I don’t revert to the old ways of thinking. But on the bad days, the old ways still get me in trouble.”

Neo responds with a sense of authority. “And what is your partner doing through all your efforts?”

I am quick with an answer. “I wouldn’t be able to do a lot of what I do without her. She has her own medical issues. Her demons, she calls them. She has had to make a lot of adjustments to her life at the same time I’ve been adjusting to mine. Most of the time, she says she can monitor my actions and knows when I’m not doing well. The times when the SEM attacks occur seemingly out of nowhere and with no provocation are the hardest.

“But one of our strengths as a couple is we’ve always been able to talk through most anything. We work together on not harboring hurt feelings when the medical issues create problems — unexpected or expected. We talk, we adjust, we share, and we keep walking together through all of what we are both experiencing.”

I pause, take a bite of the scrumptious, peppermint chocolate pie provided by friends. “It’s easy to get overwhelmed, but I remind myself it’s just chemistry while I put the brain therapy to work. I have to do this multiple times a day. The good news is the brain therapy program is helping. I deeply believe that the brain is designed to do this, and I can strengthen its natural ability as a conductor. I’m still in the early stages of discerning the details, and a long way from teaching others how to do it.”

Neo nods. “I think you’re onto something here. I look forward to hearing more. Hopefully, your readers will provide informative comments and compassionate support for your continued journey into the frontiers of chronic disease rehabilitation. Oh, and by the way, you might just give your partner an extra hug today.”

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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 Can Brain Therapy Help with the Stress of Moving? appeared first on Parkinson’s News Today.

Exploring the Potential of a Brain Therapy Model for Parkinson’s

brain therapy

For my PhD research, I wanted to examine in more detail the processes by which humans move from traumatic injury, like traumatic brain injury, to a place of well-being. My clinical experience led me to consider two things that people drew upon.

I found that, firstly, they drew upon cognitive processes when recovering from trauma. Secondly, the recovery process was helped by the relationship between the injured and those who are deemed healing practitioners. I witnessed a special kind of relationship that directly affects healing.

It is this healing relationship that became the focal point for my PhD. But I never let go of my deep belief in neural plasticity and our ability to cultivate our own neural sprouting. Little did I know then that I’d be applying healthy doses of brain therapy fertilizer to my own neural branches in fighting the progression of Parkinson’s disease.

Parkinson’s is complex in presentation, and it’s difficult to find a set of symptoms along with their progression that fits anything more than about half of the disease population. It’s been frustrating trying to advance my own cerebral rehab in the face of unclear guidelines. Whatever brain activities I choose each day are going to affect my brain health. To decide which brain activities are best, I need some clear brain therapy guidelines.

In my columns, I’ve written about creating a wellness map. This is a metaphor for brain therapy. Much of what I have written is tied to a brain model based on functional neuroanatomy — the connections between the prefrontal cortex and the thalamus. This relationship is illustrated in the following graphic:

(Graphic by Darcy Hoisington)

The graphic shows a “Grand Central Station” where sensory stimulus input comes in and gets routed back out to the appropriate destination. There are several “most popular” destinations: motor sequencing autopilot, making and carrying out plans, short-term and long-term memory, and actions or thoughts that are deemed to need more immediate attention, which often are emotion-laden.

Overseeing all of this is the open “conductor.” The conductor’s main responsibility is to make sure that the most important things get onto the tracks leaving the station before the less important things. The theory proposed here is that scenario-looping breakdowns, a malfunctioning autopilot, and exaggerated stimuli input are happening with information coming out of the station. This is information that got on the tracks without conductor intervention.

This theory proposes that these “conductor-Grand Central Station malfunctions” are major contributors to Parkinson’s symptoms. If we can decrease the effects of scenario-looping breakdowns, the malfunctioning autopilot, and exaggerated emotional stimuli, then the effects of Parkinson’s disease should be reduced.

The second part of this theory states that the conductor is still able to direct traffic out of the station. In addition to this, neural plasticity is a process that’s still available in the senior years of life, albeit more slowly. The conductor resides in the front part of our brain (frontal lobe) and is often referred to as “executive functioning.” I think that this term is too broad and lacks the specificity needed for me to design brain therapy. The success of my personal brain rehabilitation depends on my success with training the conductor. This is one of those frontiers of the exploration of wisdom.

I had been hesitant about putting such an immature theory into the public domain, but I was encouraged by a few short paragraphs in neurosurgeon Paul Kalanithi’s book, “When Breath Becomes Air.” He describes performing deep brain stimulation (DBS) on a Parkinson’s patient. In the middle of the procedure, the doctor needed to shift the electrode a few millimeters within the thalamus. The patient was complaining of intense mood surges that had no connection to context, but a small shift of the electric stimulus provided relief.

What intrigued me was that the stimulation of the thalamus triggered surges of exaggerated mood that had no link to the context. I’ve termed them SEM (surges of exaggerated mood) attacks. It was exciting to discover that a tiny shift in the electrode was all that was needed and — poof! — emotions were stable and tremor was reduced. I thought, “Perhaps I can train my brain to do its own natural version of DBS?”

I am just beginning this journey and would appreciate any thoughts. I look forward to hearing from you 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 Exploring the Potential of a Brain Therapy Model for Parkinson’s appeared first on Parkinson’s News Today.

Big Boys Don’t Whine

asking for help

“Oh, poor me. I have lost so much,” I moan, hanging my head down and shuffling my feet.

My partner looks up from her book. “Did you say something, dear?”

“Just another rough period,” I say with an affect as flat as the tarmac at LaGuardia Airport. It’s a personal choice to continue working on acceptance without the self-pity. Some days are better than others, but I resist the cacophony of emotions of grief, sadness, anger, frustration, and anxiety. Mostly, I don’t believe their narrative.

I don’t want to whine about an inner dialogue that is based on old voices from a dysfunctional family past. I replace the “whine” with “I’m defining.” Not, “I’m OK, you’re OK.” Or, “Go to your happy place and you will be all better.” Or the Pollyanna philosophy of, “Really, I’m doing fine with it all. I really am. Believe me.” Instead, it’s an honest assessment that the glass is half-full and half-empty at the same time. If I am whining, then I am not defining all the possibilities to be found.

Moving to a new house at a new location causes stress. So far, my threshold management practices help about 90 percent of the time. There is no room for whining in my schedule these days. I don’t have enough personal resources to manage my chronic disease and finish all of the tasks needed to prepare for our move. Realizing this did cause some internal dissonance in the form of bemoaning the situation, but mostly it was because I didn’t know how to ask for help. So, I felt trapped — and that can get dark very quickly.

I mentioned that I am at the edge of my wellness map, an explorer surveying the wild frontiers of an unexplored wisdom regarding living well with a chronic disease. I ran out of answers. Stuck again.

Wait! Maybe other people have written about living with a chronic disease. Why have I been so slow to grasp the obvious? Or, as my partner says, “Uh, duh …” To my surprise, I found many books. I dove into one called “Dancing with Elephants” by Jarem Sawatsky.

As the author says, the book is not about frolicking with pachyderms. It is about how we, as individuals and as a community, address the elephant in the room: chronic disease. The author says that most of us don’t know how to offer help or ask for it.

I learned something through all of this. Asking someone for help is most likely to be successful when the request is fully understood, joyfully accepted, and matches the abilities of the person giving the help. It sounds like common sense. However, the answers are not straightforward.

Success is linked to the degree of fit between the one in need, the tasks to be done, and the talents of the other. This degree of fit has several parameters shaping its outcome, something I have spent more than three decades examining. Yet, when it came to the simple task of asking for help, I was stymied.

Maybe it’s like when guys don’t ask for directions and drive around for hours “mansplaining” that they are not lost while their partner fumes in the passenger seat. The problem is the cost of being lost inside my chronic disease has too high a price. I had to ask for help.

The result: My brother’s help was instrumental in getting us ready to move, and my stress level decreased, which reflected to my partner an improved ability to deal with the stress of moving. It was the first time in my life when I could not, due to the chronic disease, complete tasks by myself that were important to the well-being of my partner and me.

The turmoil that swirls around when even considering asking for help is linked to self-image. One of the problems of chronic disease is that it tears at the flesh of self-image. In the beautifully written book “When Breath Becomes Air,” author Paul Kalanithi speaks about the shifting sands of identity when the tsunami of chronic disease keeps knocking you down.

With a PhD in rehabilitation counseling, I know about adaptability, about making accommodations that are adjustments to the physical and cognitive changes of chronic disease. I just wasn’t ready to dive under the tsunami into the deep water of the human psyche to find ways of bolstering my new identity. I’m not a very good swimmer.

So, I’m replacing whining with defining those things most important to a self-identity that has meaning and purpose. This includes asking for help. My partner is smiling at me.

Do you have trouble asking for help? Please share your experience 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 Big Boys Don’t Whine appeared first on Parkinson’s News Today.

Dealing with Major Life Changes

life changes

“What? You’re moving again? Are you insane?” Neo exclaims. (Neo is my brain’s neocortex, which I’ve mentioned in previous columns.)

“I’ve been called many things, yet still retain my sanity. I hope to do so through this very stressful process of moving,” I respond.

“How do you plan to do that? You’re giving up your sanctuary!” Neo continues.

“The beauty of this physical sanctuary can be recreated, and we carry the rest with us,” I reply. “Yes, there is a sense of loss that is made more difficult by the recent changes in my physical abilities. But the move is necessary for creating a higher quality of life for my partner and me.”

I put on my protective winter gear as I brave the snow and head for the ice-covered trees. Time to feed our menagerie of wild birds. The chickadees swoop and dart to the feeders so close to me that I can hear the beating of their wings. The still remoteness allows the soft symphony of feathers in the wind to fill my ears and soothe my soul.

“Dr. C” found his voice within the stillness. It was a time of introspection, contemplation, and fear of the future confronted by the courage to accept the progression of a chronic disease and a debilitating loss of vision. After all that good healing work, is now the right time to move?

There will always be doubts. I love this place. It will be hard to leave this serene sanctuary. Here my mind came to understand the challenges so many people face with chronic disease. It was a time to learn to write and communicate the fears, hopes, challenges, and possibilities. Now is the time to be closer to an area that can help “Dr. C” share the message with more people. It will be stressful.

Neo hesitates, pondering. “So this move is about Dr. C?”

“Mostly,” I reply. “It is also about moving where it is warmer, where garden time is longer. The garden sanctuary here is only available for a limited time. I need more sanctuary time to diminish the effects of this disease progression.

“Access to healing resources also will be severely limited if we continue to live here,” I say firmly.

With a partner who also has a chronic disease, the effort to maintain good health takes a toll on both of us. We spend as many days in “recovery” as we do scheduling, rescheduling due to weather conditions, driving, attending appointments, and returning home completely exhausted. We lose several days of what could be dedicated to productive projects just surviving these ordeals. We need to be closer to medical services.

We also have found that support from the community is important. “Dr. C” cannot simply think about what rambles around in his own head. He needs to be out in the community to help others, and to find encouragement and caring. Relationships with others are what bring about Dr. C’s voice in this column. The move will help Dr. C’s healing circle expand.

Neo scoffs at that notion. “Given the number of moves you and your partner have undertaken, you would think you would be experts by now! What, you think there are obstacles you haven’t faced before?”

“Yes, Neo, and you should know them as well,” I say. No longer are we able to consider a house without access and safety features. We are learning that we must allow ourselves double or triple the amount of time to do anything strenuous. And a lot of movement is strenuous. It takes a toll because stress is experienced more intensely due to heightened emotional input. It’s not easy to justify needing additional time to rest. It is too easy to “push through it,” an approach that doesn’t work anymore.

Emotional thresholds that overwhelm us are easily reached during the stress of moving. The move heightens everything that Parkinson’s disease patients face. The best tip is to take breaks often. Meditate as soon as moving stressors begin to show their ill effects. Repeat as many times as needed during the day.

Reference material addressing the needs of Parkinson’s patients who are moving to a new home is hard to find. We put together a list of links to help. Neo and I will chat again, sharing more tips, as we get closer to arriving in St. Louis, our new urban home close to our granddaughters.

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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 Dealing with Major Life Changes appeared first on Parkinson’s News Today.

Mindful Movement Can Help Motor Hesitation

mindful movement

At my last presentation to a support group for Parkinson’s disease (PD), one attendee said, “My husband wobbles a lot when getting up from the sofa. I’m afraid he will fall. What can we do about that?”

I asked her husband to stand, which he did with grace. A slight hesitation accompanied motor initiation, but no severe wobbling was present. I explained how PD movement fluidity can improve in formal settings.

This information was new to the audience, but not to me. I have been told by people with PD that motor symptoms are less disabling in formal settings, such as entertaining company or presenting to a group, than in informal settings, such as sitting at home on the sofa watching TV with a partner.

Unfortunately, patients often view the doctor’s office as a formal setting. When doctors ask me to stand or sit, I perform excellently — occasionally with a little hesitation, but no serious wobbling.

Motor hesitation commonly accompanies motor initiation in formal and informal settings. Wobbling, instability, and stumbling when transitioning from sitting to walking can follow motor hesitation, particularly in everyday settings. We can use this knowledge to explore possibilities with PD, especially in the early stages of the disease.

Why does motor hesitation occur?

I have previously talked about autopilot and scenario looping. We don’t have to think about walking. Walking is an overlearned motor sequence, stored in our memory, accessed via autopilot, and tied into the scenario looping process.

People with PD experience scenario looping breakdowns and a broken autopilot. We cannot rely on our bodies to automatically and smoothly transition from sitting to walking. Broken autopilots will likely result in wobbling, instability, and stumbling — particularly in informal settings, because our minds tend to focus on other things.

We assume our body will automatically get off the sofa and walk into the kitchen without requiring anything special of us. But that is no longer the case for people with PD. Formal settings show us that our movements become less problematic when we pay extra attention to them.

Mindful movements

We need to do anything and everything we can to decrease the possibility of falling, which is a serious concern. It may seem strange, but I’ve started to “perform” my daily movements. It’s similar to practicing tai chi or dancing every time I get out of a chair, walk from the bathroom to the living room, or even leave the bed.

We can incorporate mindful movements into our lives in formal and informal situations. Mindful movements start with a pause. Before I transition to a new position, I pause, focusing on the movement of my arms, legs, and feet. My movements are slower, slightly exaggerated, and — at least in my mind — graceful.

The LVST BIG program touches on mindful movement. The incorporation of mindful movement needs to be personal, intentional, and eventually, common practice. It took me about six months of daily practice before mindful movement became a regular part of how I move in the world. However, we can tailor mindful movements to fit our lifestyles.

Mindful movement turns informal to formal. Remember that improved quality of life, not perfection, is the goal. It takes time for mindful movement to become a regular part of your routine and impact your quality of life, but it is well worth the effort.

Do you practice mindful movement? Do you notice a difference in your movements in formal situations versus informal ones? 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 Mindful Movement Can Help Motor Hesitation appeared first on Parkinson’s News Today.

Watch Out for Those Good Days!

good days

“Oh my gosh! The presentation was amazing. And I’m not just saying that because I’m your partner.”

It was my first presentation about my experience with Parkinson’s, and it flowed smoothly. It had been a long time since I was in front of an audience, reaching out and connecting. Time was suspended, and I found my bliss again. I was bounding around the house like a young boy who had gotten his first bike for Christmas.

Riding the wave of unbridled enthusiasm, I said, “Now there is nothing stopping Dr. C from becoming famous!” I turned my head slightly and gave my partner a wry smile. My partner gave me “the look.”

The next day, I crashed emotionally and physically because I had let the excitement of the previous day run free without restraint, to the point where the consequences were unhealthy — the opposite of what the bliss experience should provide. I know I’m supposed to watch out for those good days because they will sneak up on me.

Threshold management is the practice of calming emotional input before thinking or reacting to that input. This calming practice helps to prevent a buildup of emotional energy that can toss someone over the threshold.

My previous columns have focused on emotions like irritability and anger. Getting overly excited about good things in life can create just as many problems as getting worked up about bad ones. If I keep threshold management practices in place during a good day, then the crash doesn’t have negative consequences.

Exploring the possibility of discovering new, early Parkinson’s symptoms continues to be of major concern to me. In some Parkinson’s patients, emotional signal input is heightened, or the brain’s normal filtering mechanisms are diminished, causing the emotional signal to appear heightened.

Parkinson’s patients can have one or more of the following: depression, anxiety, and impulse control. With the recent increase in the severity of my symptoms, I now get surges of depression, anxiety, and an annoyingly loud startle response. Absurdly, I was startled the other day by a loud crash from a blob of shampoo falling from soapy hair and hitting the shower floor.

Prior to Parkinson’s, I had no history of these emotional responses. Exaggerated input on good days is my new life. I feel like I’ve gone past the borders of my wellness map. I am taking my explorer’s machete out of the toolkit and blazing a path to new wellness practices.

In addition to practicing threshold management to keep excitement from running rampant, two other practices help me to stay balanced during the good times. The first is, “Don’t chase after the blissful feelings.” The second is, “Accept the good day as it presents itself and channel your energy accordingly.” Part of what fuels my excitement running rampant is chasing after it because I want it to last longer.

An interesting phenomenon occurs during good days: My Parkinson’s symptoms are less severe, sometimes strikingly so. I noticed this with other pleasure-related experiences as well, such as enjoyment from creativity, an excellent movie, or a romantic evening with my partner.

The positive effects of bliss are more powerful and longer lasting. Even so, all of my pursuit of blissful feelings results in negative consequences. Chasing things that feel good is composed of habitual thought and action. It can be changed.

We all have different things that we do to help us feel better. Maybe it’s a hot shower with the warm water massaging sore muscles. Or it might be a good book at night where we can escape into the writer’s world. It becomes a problem when chasing after feeling good replaces constructively changing thought and action to become more open to experiencing well-being moments.

This is not easy. It’s not about perfect abstinence. It’s about paying attention to that big neon sign that says, “Caution! Chasing risk ahead.”

One of my rules regarding human change is that you can’t change something into nothing. If you’re seeking to remove a behavior — chasing after feeling good, for example — it is difficult to be successful if you’re just asking the behavior to be gone. Once the behavior is gone, there is a void, an empty space where a thought or action response used to go. If another thought or action is not put into that void, then the old thought and action will return more quickly than you can snap your fingers.

Fortunately, seeking acceptance offers us just what we need: The good days can be handled in the same way that we handle the bad ones. We calmly accept what the good days bring just like we calmly accept the bad ones. It’s a pathway full of possibilities.

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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 Watch Out for Those Good Days! appeared first on Parkinson’s News Today.

In Search of Acceptance: Starting Small

acceptance

Researchers have said that combining acceptance with meditation works better than meditation alone. That sounds like a fantastic idea. I’ve been having trouble with meditation ever since the ruin of stagnation. Maybe if I search for and discover how to combine acceptance with meditation, it will make a difference in my pursuit of well-being. The research supports this approach.

It’s winter and we are barricaded in our house by 6-foot snowbanks. Getting out to my sanctuary in the garden and the forest is almost impossible. Without a physical sanctuary, it’s difficult for my mind to find peace. But I’m going to give this “acceptance” idea serious consideration.

Family members have said to me, “You’re disabled. Accept it and get on with your life.” It can’t be that hard. I just need to say to myself, “Accept your chronic disease, and accept your vision loss.” With a pint of ice cream in hand, I repeat this acceptance mantra. Half an hour later, with the ice cream gone, I feel nothing from the mantra. But there is a touch of pleasure from the ice cream devoured.

It doesn’t seem right to tell myself that I accept everything about my chronic disease and vision loss. Repeating the “mantra” turned me into a zombie. It’s an outright lie. I don’t accept everything as it currently stands, because I believe that the pursuit of wellness contains vast undiscovered territory. My wellness map is only the beginning of the journey. For me to accept everything about my condition feels like resignation, as if I’m giving up and allowing life with Parkinson’s to take over. There must be a better way for me to embrace acceptance.

Pacing the floor and fidgeting with my tablet and video game, I try something different. “I accept that I am responsible for managing how the disease affects my behaviors and how those behaviors affect my quality of life.” This is my new mantra. I repeat these words as often as possible between smashing monsters on my video game. After an hour of mantra repetition, I find no new levels of peace. But I go up a couple of levels in my game, leaving me with a touch of happiness.

Acceptance has this utopian vision connected to its construct. If I can drink successfully from the cup of acceptance, the elixir will help to heal my troubled being. But I don’t even have my hands on the cup — half empty or half full! I put the video game down and pace the floor, wringing my hands, mumbling. With a drink in one hand, I reach for a bowl of chips and miss. Crash! Bowl and chips scatter on the floor.

My partner comes into the room with a worried look. “It’s OK. I can clean that up for you.” I say I’ll get it. I turn without thinking, relying on my body to remember how to move, and reach too quickly for a broom. My body doesn’t engage as fast as my mind and I stumble. She smiles and says calmly, “You seem a little out of sorts. What’s going on?”

I look away from her and my head hangs low. “I’ve been struggling with this idea of acceptance. I just can’t accept everything.”

She comes over and gives me a light hug. “You do tend to overthink things. Just start small. Start with something easy, like accepting mumbles, fumbles, and stumbles. You can say, ‘I accept these things will happen in my life. I will do what I can to decrease their impact. Ultimately, I must accept that these things are happening and will continue to happen.’”

I collapse in my chair almost dumbfounded. “You’re amazing. Acceptance doesn’t have to be this wave that washes everything clean. It’s not about perfection. It’s about baby steps. It’s a calm, meditative acceptance of those small steps: mumbles, fumbles, and stumbles.”

I sink back into my chair and repeat my new mantra between deep meditative breaths. “I accept mumbles, fumbles, and stumbles. I’m doing all that I can using my wellness map.” Gentle peace is discovered in this special combination of acceptance mantra and meditative breath. The two seem to enhance each other — each one acting as a catalyst to the other. It’s an unusual sensation, a soothing comfort lasting for hours — and something that had been undiscovered before I’d written this column.

This is the path of possibilities that runs through my wellness map and leads me to moments of well-being despite the chronic disease.

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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 In Search of Acceptance: Starting Small appeared first on Parkinson’s News Today.