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Our Idea of Fun Is Sharing Moments Together

fun

“Fun” is an F-word that doesn’t have a strong history in our home. My partner and I are from the “nose to the grindstone, make it happen, pursue the American dream” generation. Oh, and we try to live up to the adage “Become the change you wish to see in the world.” We can be intense.

With all those noble ideals, we find that doing fun things is very difficult. We don’t know how people take fun vacations. We have never been successful at doing that. Sure, we want to have fun times in our retirement years, but through all the chronic illness time commitments, chasing that little F-word requires more tweaks in the wellness map.

To illustrate how we can’t accomplish the standard idea of fun, I share this story about our attempts at a honeymoon. The first one — the one usually planned by newlyweds — never happened because my wallet was stolen at the wedding reception. There’s no traveling without credit cards or identification. Four years later, we tried for a second honeymoon. During an idyllic trip to Maine, my wife developed a tremendous migraine — her first — so we cut the trip short.

Twenty years into our marriage, we tried to combine a job relocation/house-hunting expedition/vacation at my new job site in Reno, Nevada, with a stay at a casino. We had the heart-shaped velvet bed and all expenses were paid by the company, but our minds were on finding a rental unit quickly and coordinating a 1,500-mile relocation with the movers. It was the last time we used other people’s definitions of fun as our own.

Forty years post-nuptials, we were more successful in combining a trip to Arizona for a friend’s wedding with exploring the countryside and downtown Phoenix. There were no demands on our time other than dealing with chronic disease symptoms.

Changing behaviors that are so deeply ingrained in our lives is what tweaking the wellness map is all about, and it is never easy. We give ourselves permission to have fun and yet, at the same time, we must balance our plans with our ability to achieve it.

Once, we could be more spontaneous or at least show up for activities that had been on the calendar for weeks. Now, we tentatively agree to be somewhere, but roll with the day when it arrives. We wake up knowing that each day must be faced as it presents itself. If we just don’t have the energy or physical ability to meet that obligation, we change the date and try to not feel guilty.

It may seem strange to give ourselves permission to have fun, but we do this every day. If we listen only to that inner worker voice, then each day is just about the quest to accomplish something. “One more thing off the list!” my wife says, with as much glee as the Queen of Hearts in “Alice in Wonderland” ordering heads to be chopped off.

But there is a new voice now. We still wake every day asking ourselves (and each other), “What are we going to accomplish today?” But we know we must be flexible. Is this going to be a good day with enough energy to do what is on the schedule? We give ourselves permission to decline or reschedule activities based on how the day unfolds.

The new normal of traveling with a chronic disease requires a separate medication bag, pillows and a cover in the back seat of the car for those off periods, a cane for days when balance and coordination are a problem, a driving schedule that allows a more leisurely pace, and a calendar that tries not to make too many commitments in a week. We try to plan one meal at a restaurant to take a break from the drive, pull over more frequently at rest areas on the interstates, or make hotel accommodations for the night to rest before tackling the next day’s commitment. More tweaking of the wellness map.

Perhaps we really do have fun. It’s just different from how other folks define it. Playtime and time experiencing a lightness of being are both part of fun and adjusting to Parkinson’s, but so is creativity. Fun is gardening, walking our forest path, genealogy, writing, reading, organizing our mineral collection, watching a movie, and just being together to share the journey. We find our fun applying our talents to creative projects and shared moments together, and not letting chronic disease ruin the day.

How do you find fun in your life?

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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 Our Idea of Fun Is Sharing Moments Together 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.