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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.

Caressed by Calmness: An Extended Well-being Moment

calmness

Wow! That was intense. I was just sitting in the “pause between” with no expectation beyond a quiet mind, allowing the moment to bloom. Suddenly, the moment transformed into this encompassing sense of being caressed by calmness. Even more surprising, the calm stayed with me for part of the day, and it came with the near absence of pain.

The experience was not that long — minutes, not hours — but long enough for me to recognize it was an extended well-being moment. During the daily routine of morning self-care and household chores, the memory of it stayed with me. I thought my Parkinson’s had taken this from me. It’s been many years since the last time I felt such radiant calmness.

Weeks after calmness caressed me, I became emotionally upset after a rough stretch, during which I experienced multiple stressful events back to back. Having the option to revisit the calmness during these trying weeks would have been very nice, but nothing I tried led me back to those calm moments. I asked myself, “You had this soothing experience — so what? What good is it if you can’t get back there?”

The extended well-being moment left behind bits and pieces of memory that were fading with time. Just two weeks after the experience, any attempts to rekindle the memory lacked the clarity and healing power of the original experience. Therein was the problem: I couldn’t easily return to revisit, nor could I recreate it in memory, so what good was this experience?

The benefit is found in understanding the possibility that the experience represents. Within that possibility are the tweaks for my wellness map.

There are many benefits to regular meditative practice. The Journal of the American Medical Association, citing the key points of a randomized clinical trial, states, “Mindfulness yoga appeared to be an effective and safe treatment option for patients with mild-to-moderate Parkinson disease for stress and symptom management; further investigation is warranted to establish its long-term effect and compliance.”

A 2015 clinical trial of the effects of mindfulness-based intervention on Parkinson’s patients, reported in the journal Parkinson’s Disease, asked participants to actively observe sensations in their bodies. The results indicate that mindfulness training may empower the individual to strengthen internal resources for coping with chronic disease, and restore some degree of self-determination in the experience of living with Parkinson’s.

The calmness experience left me with a strong reminder of what is possible if I practice meditation more consistently. During early stages of meditation, perceptions start to increase, including the perception of pain. If I can continue the meditative process, I can quiet it down using the technique of the pause between.

I do not want old habits to pull me in. If I cannot sweep away the habitual patterns of thought and action, the calmness becomes a more and more distant memory. I must bring calmness into play as part of my daily conscious thought.

The radiant calmness experience helped me by putting a clear, obvious road sign at the fork on my wellness map. The sign reads, “Calmness this way.” This radiant calmness changed me by smoothing out the rough edges. It comes with tools that are useful against the weeds of unrest: patience, tolerance, and compassion.

The answer to the question, “So what happens if I let go?” is found in holding on to the possibility of change, and then moving in that direction every day. Then, life’s problems can be perceived with less of an emotional burden. Every day brings pain from Parkinson’s, but is also an opportunity to practice calmness despite the discomfort.

I remain deeply moved by the reminder that I once lived closer to this radiant calmness. Maybe, at one time, we all did.

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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 Caressed by Calmness: An Extended Well-being Moment appeared first on Parkinson’s News Today.

Meditation and Parkinson’s Disease: Looking for Lightness of Being

meditation

Living with Parkinson’s disease is a struggle against the loss of both motor and cognitive functions. One must invest effort into an action plan that reduces the impact of the disease — a rehab plan. This effort is daily (sometimes hourly) and can be exhausting.

Living with PD is like carrying a large backpack of rocks. It is at times a crushing burden that can overwhelm. Balance needs to be established in my life so that the work I do in fighting the disease does not consume me. I must spend time looking for lightness of being to balance out the heavy PD burden. I do this through a regular practice of meditation.

There are many ways to practice meditation: sitting and listening to calming music, sitting and gazing at a fireplace, practicing tai chi, or exercising with rhythmic breathing. These practices seek to help one enter the quiet mind. It is within the quiet mind that one experiences lightness of being. Meditation helps relieve stress and focus attention — both of which are of benefit to those with PD. There are books providing instructions on how to do this, but none deal directly with PD.

Practicing meditation with PD presents some unique challenges. The meditation practice starts with calming the body, and this is the first obstacle PD complicates. Repetitive motor activities like cycling, tai chi, or gardening are helpful when combined with focused breathwork.

Focused breathwork is diaphragm breathing in which you focus your full attention on the breath. Guided meditation, either from a teacher, in person, or from a recording, can help with this process of shifting attention. This shifting of attention is the second obstacle PD complicates.

Once past the first two obstacles, you should feel a little more relaxed. This relaxed state is the path leading to the door into the quiet mind, but I am prevented from going down that path by a third obstacle.

This third obstacle is heightened emotions and difficulty in regulating them. I have written about how PD heightens the impulse signals to the brain. During the meditation process, the signal-to-noise ratio changes, meaning that as one practices quieting the mind, the noise goes down and the signals connected to emotion appear louder.

The quiet mind is a mental state that silences the noise of the world, the body, and the self while at the same time maintaining a sense of peace and safety. It is something I practiced for decades and then lost touch with over the last seven years while battling PD. As my life has become stable, I am now returning to the practice and finding it much more difficult. I feel like a novice struggling with all the obstacles I used to walk around with ease. This third obstacle does impede my looking for lightness of being.

As I have helped patients to find a place of peace and safety, together we would often experience loud emotions. These are emotions connected to things we feel (consciously or subconsciously) that need attention. They are like boulders in the path, looking like obstacles blocking the way forward to the quiet mind. But one can learn to walk around them.

Most of the folks I worked with would have several boulders to walk around and needed multiple sessions to learn how to walk around them. As I write this, I remember the tender patience I should offer to myself.

Once past the boulders of emotion, you then arrive at the doorstep of the quiet mind. PD has made looking for lightness of being much more difficult for me, but not impossible. I have memories, and recently have felt glimpses of peace and deep calmness.

Seeking lightness of being ties into my New Year’s resolution. For me to quiet down the old tapes (emotional boulders in the path), I need to have a new mental state to go to. I can’t just remove the tapes and leave a void, because that void will be quickly filled back in with the old mental habits. Looking for lightness of being will be a lifetime adventure.

What ways do you practice meditation, and how have you found it to be helpful?

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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 Meditation and Parkinson’s Disease: Looking for Lightness of Being appeared first on Parkinson’s News Today.

What Is Helping Me the Most in My Parkinson’s Battle?

helping, battle

No two Parkinson’s disease patients are alike

I am slowly coming to realize that each diagnosis of Parkinson’s disease (PD) is unique. PD patients suffer different symptoms and different rates of disease progression. Some remedies work for some, and not for others.

In many cases, those of us with PD are left to our own devices. Doctors can only suggest options for us. As for medications, in the end, we must listen to our bodies very carefully to determine what will and what won’t work. The ultimate goal is to find the right “cocktail” of drugs so that PD symptoms are masked and there are few or manageable side effects. Sadly, my experience has been that changes in medications and dosages have not given me aha! moments where I can see a significant reduction in symptoms. If there are any improvements, they are extremely subtle.

Is it the weather?

Many of my fellow PD sufferers have shared their struggles with the appearance of a possible new symptom or worsening of existing symptoms. Is it something we ate? Or do we chalk it up to a bad PD day? Could it be fluctuations in barometric pressure or is it part of the normal aging process? Is our disease progressing or have we taken our medications at the wrong times? Should we have eaten more food or had more water with our pills? Did we get enough sleep or are we too stressed? The list goes on and on. With PD, there is so much uncertainty. It is very difficult to determine what is helping my symptoms or slowing the disease progression, and what is not.

What do I think has helped me the most?

I leave no stone unturned in my efforts to combat this disease, especially when it comes to exercise and movement alternatives.

In September 2017, I started Rock Steady Boxing twice a week.

Boxing has been one of the most effective tools in my arsenal for fighting PD. It has given me the confidence to feel like the athlete I once was. Boxing helps me improve my stamina, speed, and strength, and the participants (everyone in the class has PD) offer great support and camaraderie. As I set out on my one-hour commute to Rock Steady Boxing class twice a week and put on my hand wraps and gloves, I truly feel like a warrior getting ready for battle.

helping
(Photo by Michael Heller)

Boxing and movement, in general, have helped me the most in my daily struggles with this disease. In no particular order, I also credit the following with helping me in my war against PD:

  • Physical therapy once a week (for balance)
  • Massage once or twice a week (for stiffness and rigidity)
  • Yoga two times per week and meditation for 20 minutes up to five times per week (to train me to be in the moment, and not focus on the prognosis of this disease)
  • Attitude adjustment (accepting that I have this disease and counting my blessings)
  • Sinemet (carbidopa-levodopa), medication to relieve internal tremors

Treating PD appears to be all about finding the right combination of some or all of the following components:

  • Exercise
  • Diet
  • Supplements
  • Prescription medications

A formula for one PD patient may not work for another PD patient, and the plan must continuously be tweaked. As difficult as it is, we must reduce our stress levels. I believe both good and bad stress exacerbate our symptoms.

In a future column, I will share some of my experiences with the Rock Steady Boxing classes.

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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 What Is Helping Me the Most in My Parkinson’s Battle? appeared first on Parkinson’s News Today.

Source: Parkinson's News Today