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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.

Grandparenting with Parkinson’s Disease: Part 2

grandchildren

Sherri Journeying Through

Second in a series. Read part one here.

In my last column, I shared about grandparenting with Parkinson’s disease. Today, I will give you concrete ways to have a blast with your grandkids (or young kids) without losing your mind or your strength because of Parkinson’s.

Children love to bake and cook. Make or find an apron they can get messy in and make cookies. This is one activity all my grandchildren love doing with their grandpa and me. It will be messy, but what’s more important? A clean kitchen or freshly baked cookies made with your grandchild?

Children love to garden. Have some child-size garden tools available for your little helper. You might as well get the normal size because they’re going to want to use yours anyhow! A hand shovel, a small watering can, and a short rake are good for starters. (The small, plastic leaf rakes for hard-to-reach places are good child-sized rakes.) My grandson uses every tool I use, so be ready to teach and supervise.

Kids love art projects. I have a child-sized art easel I purchased at IKEA for $15 a few years ago. It is a perfect size and has lasted outside on the deck for over eight years. Use fingerprint paint and then you don’t have to worry about staining clothes or the deck or floor. Use a kitchen apron for added protection.

Visit the Dollar Store and thrift shops with your new best friends. Crayons, silly string, construction paper, sidewalk chalk, and other crafty items await you at a bargain price. I have gotten small pom-poms and small, square foam pieces at the Dollar Store, and they have lasted two years for make-do snowball type wars inside the house. They’ve also become the rocks for the dump truck and more. Total cost: $2.

My grandson loves to play with balls. A bag of balloons is great for make-do volleyballs for inside the house. He also loves silly string and, surprisingly, it’s not a pain to clean up. That, however, is for outside.

Every kid loves sandboxes, but so do the neighbor’s cats. I put a small, round (about 36” in diameter) black plastic pond form I bought at the neighborhood garden shop on the back deck (where the sand stays dry) for a sandbox. Before my grandson goes home, we pile all the outside toys in it and then there’s no room for cats.

I bought a roll of brown grocery type paper at the Dollar Store and unrolled it flat onto the deck. I took an old cookie tray (you could use throw-away foil ones), put different colors of finger paint in it and placed it at one end of the paper and let him put his bare feet in it and walk around on the paper. We framed part of it as a gift for mom and dad, and let mom use the rest for wrapping paper.

Look for other grandmas who watch their grandchildren and get to know them, even meet them at the park one day. The mall playgrounds, indoor play areas, parks, and more are good places to meet new friends for the both of you. Malls are also good places to take the little one to walk early in the morning before the crowds begin.

If you have cleaning to do, why not let the kids help? While I cleaned the toilet one day, I gave my grandson a plastic spray bottle with water in it and a sponge, and sitting inside of it, he “cleaned” the tub.

There are so many other things you could do that are easy on you. Some things to keep in mind if you know you’re going to have a child over for the day:

  • Don’t use up your energy today if you know you’ll be watching them tomorrow.
  • They are most important, so learn to leave the housework. It will still be there. They may not be, and they won’t stay little very long.
  • Carry your phone everywhere you go when they are with you (and when they aren’t) in case you need help. I called my husband last summer to get us from the park down the street because I knew I wasn’t going to make it home.

Do you have any suggestions on grandparenting with Parkinson’s disease you might share?

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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 Grandparenting with Parkinson’s Disease: Part 2 appeared first on Parkinson’s News Today.

Source: Parkinson's News Today