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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.

Living with Dignity and Parkinson’s Disease

dignity

Respect for oneself can often be hard to come by. We can see our mistakes and failures. We recognize the missed opportunities to become who we wanted to be, and the times we fell short of our goals. Couple the inadequacies we carry with us alongside having a chronic illness such as Parkinson’s disease, and we can begin to lose our dignity within the disability. 

Brokenness

We can feel like broken crayons or an irreplaceable piece of china that lies shattered in a pile on the floor.

The awkwardness in our walk can cause us to be self-conscious. The stuttering in our talk leaves us embarrassed and carrying around a sense of misplaced shame. Uncontrollable tremors can create discomfort when strangers’ eyes are drawn to our constant movements. We think that we give off an air of clumsiness. We feel anything and everything but dignity. Our self-respect has been replaced by insecurity and a lack of grace, leading us to withdraw from those we care about and who care about us. 

Looking inward

While others can see only what is happening on the outside, they may forget that there is still a sensitive, kind, gentle being behind that masked face. When someone relies on the assistance of an old, crudely made cane, others might believe the person to be drunk due to their swaying, unbalanced gait. 

But alcohol has no place in this life with Parkinson’s — and neither do mind-altering substances. We shuffle about and freeze in place, stumbling over our two feet as we struggle to make our way across the room. Onlookers don’t know our struggles or that we battle the Parkinson’s beast, moment to moment, day by day.

Is there any dignity in our lives?

I believe that there is dignity to be found in our determination to keep going as long as God gives us breath. There is dignity in our refusal to give up. We all fall, whether we have Parkinson’s or not. We all fail sometimes when trying to reach our goals. We can keep our dignity in this disability if we don’t allow others’ stares to increase our insecurities or our stuttering to fluster us. On the inside, we are the same person, even if the outside appears to have changed.

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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 Living with Dignity and Parkinson’s Disease appeared first on Parkinson’s News Today.

I’m a Better Listener Because of Parkinson’s

listener

I’ve always liked attending different events, such as movies or concerts, or having lunch or coffee with friends. But I don’t get out to socialize much anymore. It’s not that I can’t or don’t want to. I merely am hesitant and for one reason or another usually talk myself out of it. 

You do that when you have Parkinson’s disease (PD). You feel like you’re constantly yelling because your voice is no longer heard. Skirting older people with canes and walkers while trying to balance a plate of food takes skill when balance is a struggle. And then there’s the work of trying to keep up with a conversation. Before you can organize your thoughts to respond, the people around you have changed topics 12 times. So you listen.

I committed

A couple of weeks ago, I decided to accept an invitation to dinner at the park where we live. My neighbor asked if I was attending because she needed a ride to the clubhouse, and I said yes.

The festivities started at 5 p.m., but the invitation said 4. Frustration spread among the neighbors who gathered for their free evening meal, as they were mostly over 70 and used to eating at 4 p.m. Their graciousness began to dissipate and was overtaken by grumbling and complaining.

I turned my attention to the front, where boxes of various sizes were stacked atop one another and wrapped with bright, colored paper and festive ribbons and bows. Santa and Mrs. Claus sat by the Christmas tree in the corner waiting for a photo-op with children who might come, of which none had yet.

Dinner is served

A Christmas caroler and country soloist began to tune his guitar. He readied himself for the audience to chew in rhythm to the tunes of “O Christmas Tree,” “The Little Drummer Boy,” “Hark! The Herald Angels Sing,” and more. But people gobbled their food and mumbled about not wanting to sing at the same time, so the music stopped. We were left to chatter between bites. I listened attentively to the woman next to me, as no one else seemed to be paying attention.

We were nearing the end of our meal when the country boy drew us back to singing carols. Another woman across from me sang with gusto, loud and strong. Her vibrato was much like mine, thanks to PD, and was made up of short bleats like an old, tired sheep. That’s the sound of your tremor, showing up in your vibrato. 

The evening was coming to a close, and the raffle had yet to occur. Winners were chosen (everyone but me and one other person), and attendees opened candies, cookies, and beef sticks. Then people began to leave, taking their leftovers and prizes home.

Reflecting on the night

When I arrived home, I thought about my evening. I realized that I have a greater tendency to withdraw now, for reasons that are justified or imagined. But I also realized that I am happy to listen and observe. I honestly enjoy myself.

Why am I OK to merely listen and observe? My voice doesn’t carry enough to be heard anymore. Combine that with the fact that most of my neighbors need hearing aids they forget to turn on, and I better be content with listening and observing!

I may find that PD makes me less talkative, and I may find it harder to keep up with conversations, but that’s OK with me. My neighbors often want someone who will listen, and PD enables me to be a better listener. And that’s a good thing.

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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 I’m a Better Listener Because of Parkinson’s appeared first on Parkinson’s News Today.

Exploring the Relationship Between Parkinson’s and PTSD

PTSD

I was out gathering flowers, peach tulips, and blue orchids. It was a beautiful sun-kissed day. I wondered where I would discover new blooms in the garden.

Out of nowhere, a chasm opened beneath my feet, and I plummeted into unknown depths. Jagged rocks and outcrops tore at me and bruised every part of me. Mind you, this was a virtual game experience. I wasn’t really falling. But it still took a toll.

Days with Parkinson’s disease (PD) are like this. It’s sunny. I stop to smell the roses, have positive expectations, and then something inflames my PD symptoms. Like falling into that virtual chasm, I have to stop what I’m doing and go in a different direction. I call it “PD forcing,” and it is happening more often these days.

A doctor once told me, “All Vietnam vets have PTSD.” A generalization. However, military veterans with post-traumatic stress disorder (PTSD) or a traumatic brain injury have more than double the risk of rapid eye movement sleep behavior disorder (RBD), which is a risk factor for PD. RBD can precede classic PD symptoms by years. Researchers at the VA Portland Health Care System and Oregon Health and Science University plan to explore the incidence of PD among veterans with RBD.

Additionally, people with PTSD have an elevated risk of developing PD later in life. Further studies may clarify the relationship between PTSD and PD and the efficacy of prompt intervention for PTSD.

To some extent, I think that PTSD can be brought on or exacerbated by PD symptoms. The symptoms and progression of PTSD and PD are also very similar. For example, symptoms of PTSD include irritability and angry outbursts with little or no provocation, verbal or physical aggression toward people or objects when frustrations or challenges become “up close and personal,” reckless or self-destructive behavior, hypervigilance, exaggerated startle response, problems with concentration, and sleep disturbances.

Living with the ever-increasing and debilitating progression of PD can be traumatic. Coping through a variety of escape modes and old habits no longer works. Trauma doesn’t just come from military combat. It can come from combat with a chronic disease. The PD thief keeps coming back, stealing another skill or capability — unexpected, unwanted, and unforgettable. I never know where the next chasm will open beneath my feet.

Until now, I didn’t think that PTSD fit my experiences. The PD thief, however, continues to be a source of trauma and is just as powerful as my military experiences in Vietnam.

I could hear my suffering more clearly while I worked on physical healing. I’ve made progress with anger, but every day I’m afraid of being traumatized again. I’ve retreated into a cocoon: a lounge chair and a sedentary life.

A sedentary life is a dangerous one, but I needed time to heal. When I finally ventured into the world, I didn’t feel safe because of PTSD, PD, and vision loss. Interaction with the world results in a regular stream of, “You can’t do this anymore.” It is often overwhelming, and it is happening more often these days.

I know it’s time to leave my cocoon of safety. I know the world is not always painted with the dark palette of the PD thief. The sun still sends her shimmering fairies to dance on the lake ripples. Trees still whisper melodies in harmony with the wind.

Yes, it is hard to motivate myself to move and engage after being sedentary for months. But my gardens will bloom again, and so will I. Like chartreuse bulbs bursting through the soil, signs of wellness are showing up in my life: healed injuries, greater appetite, months spent retraining my eyes to see differently, less pain, and a significant decrease in the duration of vertigo.

I focused on healing while I was sedentary, but now it is time for me to leave the chair.

Moving out of a sedentary life isn’t easy, but the wellness map helps. There is nothing good about a prolonged sedentary life. It is time to get up and show up for the next destination on the map. As we enter the new year, it is time for me to beat back the PD thief and his sidekick, PTSD.

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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 Relationship Between Parkinson’s and PTSD appeared first on Parkinson’s News Today.

Deep Brain Stimulation: Time for a Tuneup

tuneup

My sister, Dad, and I waited in the doctor’s office before Christmas for his deep brain stimulation (DBS) appointment. Dad underwent DBS last fall, and it’s time for a “tuneup,” as he likes to call them. I imagine his doctor with a wrench in her hand, manipulating Dad’s brain like a mechanic fixes a car.

If she works on the suspension on the left side, maybe it’ll change the tremors in his left foot. And it does. His doctor punches the instructions into her computer and my dad’s foot stops shaking. It’s an immediate change. We don’t have to wait for medications to kick in or his body to adjust.

His medication dosage is about the same. He experiments to see if a half-dose is enough to keep him going. He thinks it is; his doctor doesn’t.

While we’re in the office, I try to mediate. His doctor — my dad calls her “The General” — tells him that he needs to take his medications regularly and as prescribed. Dad’s face sinks because he has been clinging to the hope that he can reduce them. She explains that patients don’t develop a tolerance to Sinemet (carbidopa/levodopa), but as Parkinson’s disease progresses, a higher dosage is needed. She reassures him that an increase in dosage won’t cause adverse effects. Dad is in it for the long-run, and he hopes that if he plays his cards right, his symptoms will ease later in his life. But his quality of life is suffering now because he is undermedicating.

Sometimes having a window into someone’s life can be heart-wrenching. While I’m looking through the glass panes of my dad’s mind, I realize that he is determined to fight Parkinson’s for as long as he can. And I’m proud of him for being so determined. I know that you can’t give someone the desire to put Parkinson’s in its place, but I also worry that undermedicating is compromising his quality of life.

What has changed?

Dad tells me that he has noticed some subtle changes since the surgery. His eyes are dull with disappointment as he shares that he had hoped for more improvements. He didn’t have a honeymoon period like others do despite his longing for a week without symptoms. This grueling disease has been chasing my Dad since 2013, and he was comforted by the idea of a break. Everything short of a cure is a little heartbreaking. But he does admit to the positive changes, including the following:

  • Parkinson’s patients can experience a strong urge to urinate frequently. Since his surgery, the urge has disappeared.
  • He decided to undergo DBS because his dyskinesia can be debilitating. But since the surgery, the worst of it is gone.
  • His hair is so thick that he jokes about having a ponytail, like the one he had during his youth.

He tells me that his freezing has gotten worse. I observe him walking and notice that he freezes for longer. But he only freezes when he’s trying to navigate a choppy situation — like our Christmas presents all over the floor. It’s as if fear paralyzes him. He worries about stepping on something. But when his path is a straight shot, he zooms away. I wonder if managing our fears can affect freezing.

Sweet relief

I felt a brief sense of relief upon seeing my dad at Christmas. He is 20 pounds heavier than he was before the surgery. He seems to be in good spirits. It’s like a victory among bouts of tremendous loss. It feels as if the surgery has provided us with a deep breath of air after going without it for a long time.

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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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I Have Parkinson’s, but I Won’t Let It Have the Best of Me

best

I’m unsure about how I feel today, but I am certain it’s not me. I am not at my best.

Tired and weary, I am running this race against time. I hope I am running it well. We all believed, at one point or another, that we had a limitless supply of time. We couldn’t wait to grow up. And while we were daydreaming about getting older — and hopefully wiser — those who had reached adulthood wished to be young again. None of us — young or old — ever dreamt of having a sidekick called Parkinson’s disease. Some “thing” that would insist on stealing the show, taking our inexhaustible dreams and infinite wishes, leaving us exhausted and apathetic.

Dreams and wishes

During sleepless nights, I can be tired and weary. I often wonder what it would be like to be young again. The young before the young-onset Parkinson’s disease stepped into stride alongside me, somewhere during my first 30 years of life. The days when I dreamed of being all that I could be while feeling something pulling me in another direction.

Thief of time

Chronic diseases can rob us of time. They can plunder our lives and steal our hopes and dreams. They can ruin our relationships, but we aid and abet them by becoming antisocial and stepping away for unsubstantiated reasons. 

We think that we don’t speak loudly enough for others to hear us, so we take one step away. 

We are convinced others don’t want to spend time with us, so we take another step away. 

Our canes and walkers remind us that we have slowed down — and so we take yet another step away, thinking that others wouldn’t want to walk at the back of the lines with us. 

We are invited to lunch with friends but refuse the invitation, believing that we will burden others when we require help with cutting our food. 

Another step. Few become many. We now feel friendless. But are we justified in our belief? Perhaps. But from personal experience, I know that we can force those steps ourselves.

Fighting back

I can say, “I have Parkinson’s, but it doesn’t have me,” but the truth is that sometimes it really does have me.

It’s gotten a hold of my zip, my perk, and my drive. It often gives me “tired” instead. And it takes that thing we call time. 

It takes time to muster up the energy to fight back. But somehow, somewhere deep inside, I find the zip, the perk, and the drive, and I take back the “me” that was missing. I push through another day of having Parkinson’s, but I don’t let it get the best of me.

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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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Mission Impossible: Getting Dressed

clothes, dressing

“Your mission, should you choose to accept it … This tape will self-destruct in 10 seconds.” Mission: Impossible (TV series).

What is my problem?

At times, putting on my clothes in the morning can be an impossible mission. This is one of the unseen symptoms that some people with Parkinson’s may deal with on a daily basis. Although it is merely a nuisance at this point, feeling like a 4-year-old learning how to dress gets a little old after a while.

Since this is one of the more absurd Parkinson’s symptoms with which I am afflicted, I have to laugh at myself. I had a chuckle at a photo of me trying to put on a sports bra.

Pulling the garment over my head causes me to get “stuck” sometimes, so I bought a sports bra with a front closure. Well, that was not such a good solution. After much difficulty, I finally found the openings to slip my arms through. However, once I had accomplished that, I couldn’t fasten the front zipper and hook. I am now back to the “pull over my head style,” and hope I don’t get stuck for too long.

Columnist photo; Dressing, clothes
Struggling. (Photo by Lisa Bjelland)

It’s not just sports bras …

On more than one occasion, I have put my pants on backward or my sweater on inside out. It takes me forever to get dressed in the first place. Now when I don’t dress properly, I have to take the garment off and start all over again — adding another five minutes to the process. Sometimes it takes me almost 15 minutes just to get dressed in the morning.

Somedays I look at one of my shawl-collar cardigans and can’t figure out how to put it on or hang it up. Sometimes, my Parkinson’s symptoms of bradykinesia and loss of cognitive skills team up to thwart my efforts. When this happens, getting dressed can take me over 10 minutes, frustrate the heck out of me, and require my entire focus. Something I have done in less than a minute for over 60 years without a second thought can now overwhelm me.

I try to exercise every morning, so most days I wear tights or spandex leggings. These do not go on easily, and inevitably, my left foot freezes and gets stuck. Forget about it when I have to take them off to use the bathroom. It feels like I am trying to remove shrink-wrap from a package with no scissors to cut it, and I end up tripping over my own feet in a hurry to get to the bathroom in time. No more waiting for the last minute. Now, I must plan when to use the bathroom so that I allow myself enough time to peel off the tights.

One time I put my underwear on inside out, and when I told my friend who also has Parkinson’s, she laughed and said when that happens to her she leaves them that way. I am getting to that point now.

dressing, clothes
Stuck in a sports bra. (Photo by Lisa Bjelland)

What can I do about it?

For people with Parkinson’s, activities of daily living can become very frustrating. Here is a list of helpful tips that have eased my stress levels so that I don’t self-destruct when I am getting dressed. Keeping a sense of humor helps, too. 😊

So if you see me with my shirt on inside out and my pants on backward, you don’t need to comment. However, know that I am probably not having a good day.

To adapt a Heidi Rader quote: “I am a Parkinson’s warrior. I fight an ugly war inside my body every single day. I may not win this battle, but I will not go down without a fight!” 

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

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A Word for the New Year

best

A huge part of bringing in the new year is buying a new calendar, a new journal, a copy of the book you have vowed to read, or a working scale — one that tips in your favor and not against it when counting those unwanted pounds.

The first days of a new year are filled with good intentions, great ideas, and go-get-’em goals. We tend to get excited about changing things, only to disappoint ourselves by not meeting those well-intentioned goals. 

I think keeping resolutions is more difficult for a person with a chronic disease. Each day is so unpredictable. When you open your eyes in the morning, you aren’t sure whether today will be harder, the same, or better than yesterday. Some days envelop all three states of mind.

It’s easier to keep one resolution than 101. While you may feel ambitious, one resolution is more realistic.

Failure

For a person with a Type A personality, making a list of resolutions is natural. But having Parkinson’s disease and being a Type A personality may be a recipe for failure. We want to make our list and check it off twice. We want all our ducks in a row when New Year’s Day rolls around so we can start out a champion. But by Day Four, we are tearing up our list and giving up — the ritual of years gone by.

One word

Several years ago, I heard about someone who chose one word that encapsulated the essence of what they wanted to change in their life instead of making resolutions. Not an easy word like “loving” — something more specific, more individualistic. Something like patience, forgiveness, or perseverance.

How often do we feel like giving up? What we need at that moment is the persistence and determination to keep moving forward. Perseverance.

Patience

And how often do we become impatient with our caregivers, or our caregivers with us? We often hear that patience is a virtue. It is a quality for which we should want to strive. We should practice patience whenever and however we are able. “To strive for the ability to accept trouble or suffering without getting angry or upset,” as Webster’s dictionary says. I would alter that by changing “getting angry or upset” to “staying angry or upset.” Patience can be endurance in a difficult situation, or showing self-restraint toward someone who is driving you crazy.

Forgiveness

We should also strive to practice forgiveness. Pardon others for the wrong they have done. Not because they deserve it, but because it is good for our health. It is healing. It promotes healthier relationships, improves mental health, creates less stress, lowers blood pressure, creates fewer  symptoms of depression, improves heart health and self-esteem, and builds a stronger immune system. With those advantages, who wouldn’t want to forgive?

Maybe in 2020 we should nix the list and find that one quality — that one word — to concentrate on for the year. Instead of making a list of 101 things we want to change but won’t, let’s choose one and accomplish much despite having Parkinson’s 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.

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What I Learned from Attending a Parkinson’s Symposium

symposium

I recently attended a symposium titled “Shaping the Future” at the University of Delaware. The event, organized by the Johns Hopkins Udall Center, was patient-oriented, so rather than their peers, the expert speakers were addressing people with Parkinson’s.

Looking around the room, I noticed that the audience included people of various ages and degrees of progression. However, we all had one thing in common: hope for a brighter future. I came prepared with my iPad, ready to learn and take notes for this column.

Presentations covered a wide range of subjects, including gut models, cognitive and psychiatric aspects, disease-modifying versus symptomatic therapy, nutrition, pathophysiology, biomarkers, and genetic mutations.

The highlights

  • Biomarkers are like dominoes — a “cascade” leads to cell death. Remove a domino and stop the process. This video explains the concept.
  • You may have heard of alpha-synuclein. I learned that it’s a “bad protein” and potential biomarker when “misfolded” in the development of Parkinson’s.
  • The impact of depression on quality of life in those with Parkinson’s is almost twice the impact of motor impairments.
  • Protein and L-dopa compete for the same receptor in the digestive tract to get into the blood and the brain.
  • Exercise can be a disease-modifying therapy. This presentation looked at a 2017 study that used the Unified Parkinson’s Disease Rating Scale. It found that Parkinson’s patients who exercised at high intensity three times a week for six months had no progression compared with a moderate exercise group whose disease worsened by 1.5 points and a no-exercise group who had a three-point decline.

These are my takeaways from the symposium. If you’d like to explore further, the slide presentations are available here.

Symposiums may not be for everyone; the content can be clinical and hard to understand. However, we should be encouraged by and grateful for the fantastic researchers who are working on finding new treatments and a cure for this disease.

Above all, we should be hopeful that their collective efforts may identify the “dominoes.”

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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 from Zero to 60 in 4 Months

anger

Boom!

A cannon shot shakes the windows of the house. No, it’s not terrorists showing up in rural New England. It’s just winter. We have a steel roof. When the temperature is just right, the snow slides off the roof with the force of a cannonball and hits the ground with just as much noise.

Every winter, I’ve been out helping to clear the snow. But not this year. The ruin of stagnation has forced me to practically abandon any physical activity while I healed. Slow progress was made as I increased exercise each day from zero to 60 minutes. It is very slow healing. I am not used to the slow pace, and that nags at me, like a child wanting to get to the next carnival ride.

Neo interrupts my thinking: “Well, it’s been four months. What have you accomplished over all that time?” I can always count on Neo to hit me with a direct shot, without a warning over the bow. (Neo is my brain’s neocortex, which I’ve mentioned in previous columns.)

“I have tried to push harder and go faster to make this healing happen,” I reply. “It’s not helping. The old way of using the fierce ‘push harder’ is not working. I have used anger to motivate myself, to push myself harder, so that I can accomplish more. But no longer. The anger now adds stress experienced in a raw and unfiltered manner. I can no longer afford to do things the old way if I’m looking for genuine wellness.”

“Sounds like you want to get rid of anger. That’s a tall order,” Neo points out, puffing his chest. “There are many good reasons for keeping anger in your back pocket and pulling it out when needed.”

I take a deep breath, and with unusual calmness, say: “I don’t think I can get rid of it. I think it’s a part of who I am. But I do think I have misused and abused the energy of the calling behind anger. For me, the injustice connected to suffering and the objectification of others inflame me. I have used this fire to fuel my motivation, to continue the good fight.”

Neo retorts, “Yeah, man. Help the good guys and kill the bad guys — anger is good for that.”

I shake my head. “There is an attacking edge to anger, but it is not an absolute quality of anger. Rather, it is a self-imposed one. I willingly choose to attack with anger. It is unnecessary for wellness, and I see this attacking edge as harmful to my search for healing. I need to remove this self-imposed attack quality and embrace a transformed anger,” I say.

Turning his head slightly in a gesture of acknowledgment, Neo says, “Peace on earth and goodwill to all. I get it. But anger is also good for helping to get a point across. Get attention.”

“Not always, Neo. Powerful ideas have enough of a spark in them to kindle awakening in the hearts of all who can listen. All the fire of anger does is obscure the discovery of that spark. While healing, I need that spark, I need what’s behind that spark, and using anger to incite just gets in the way.”

As I walk over to the kitchen to cut up zucchini (there’s always too much zucchini in New England), I can see Neo crinkling as he wrestles with his thoughts about anger. As if a lightbulb had been illuminated over him, Neo blurts, “Sometimes I just want to blow off some steam. Anger is a good way of doing that.”

I respond, “Whenever I’m in one of those venting moods, I also have this internal dialogue that is filled with negative statements about people, life, and past events. It’s inner dialogue that points fingers at ‘he said this,’ ‘she did that,’ ‘not fair that this happened to me,’ and ‘I want this to go away.’ The venting is filled with a lot of energy, and somewhat of a rush can go with it. In the past, it may have helped. But now the emotional intensity of this venting is no longer healthy for me. And it can hurt people around me.”

I take a sip of holiday cider and continue. “There is a different way to look at how to use the energy behind anger, the energy of perceived injustice. It is a way of taking that energy and focusing it solely on solutions — not on people, not on personal injury, not on personal feelings. Every problem is a solution waiting to happen. It is shifting the focus of the energy toward constructive change, and in doing so, it changes the nature and quality of anger.”

Neo has been tapping lightly on the table for the last 30 seconds, and now he jumps in. “You will need that anger if your life is threatened or the lives of your children or grandchildren are threatened. You’ll need that anger energy then for sure.”

Taking a deep breath after a lengthy pause, I say, “Most of us are not faced with actual life-threatening situations. There are places in the world where such threats are real, and in those situations people need to act in a way that preserves both life and humanity. But for most of us, it is the perceived threat or illusions of threat that enter our lives. Remove the illusions and you remove the need for anger to function in this manner. Anger is reframed, transformed.”

Neo nods. “So the gift of forgiveness, tolerance, and patience is in keeping with the holiday season. It’s a good gift for yourself and for others. And a good New Year’s resolution!”

This is an example of reframing, a powerful tool to help facilitate positive change. Anger will no longer motivate me to push harder and faster. Let it go! It’s OK if it took four months to go from zero to 60.

How can the holidays be a time for practicing reframing and letting go for you? 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 Going from Zero to 60 in 4 Months appeared first on Parkinson’s News Today.