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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Category: family

Balancing Between Worlds

Terri Reinhart

A funny thing happened on my way back from Colorado.

Emma and I had gone to visit my mom, see Patrick and Tamara, see friends, and dance. It was a lot to accomplish in 4 days. I was excited to see everyone, but we were just beginning to feel settled in Massachusetts and it felt too soon to go back. The roots we were trying to establish in our new home were too fragile, but as I had promised to come back regularly to check up on Mom, we really needed to go.

The first thing we noticed, flying in to Denver International Airport, were the trees - or lack thereof. Yes, this was eastern Colorado - flat, dry, and you can see for miles across the plains. Ha! I said to myself. I didn’t miss the dryness or the flatness or the lack of trees. We’re getting spoiled, I said to myself. We’ve got trees and rivers and hills.

We rode the train into Denver to Union Station. Greeting our friend, Marie, who came to meet us, we walked out and I savored the city. There’s nothing like Union Station and downtown Denver! Marie drove us to Deb’s house where we were staying, stopping first at King Soopers so we could pick up a few things. A familiar store! I knew where things were! At Deb’s, we had dinner and peeked out her front window to see our old house.

We visited with Mom, met the lovely young couple who bought our house, visited our favorite thrift shops, and danced on Friday and Saturday evenings with our Denver square dance club. It was a perfect way to see so many good friends. I think we were among the last to leave the building Saturday evening. We also got to help my brother-in-law and his wife celebrate their 40th wedding anniversary!

I felt it starting then. Those roots were trying hard to plant themselves in Colorado again. This wouldn’t do at all.

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I noticed the heavier traffic, the line at the bank where I deposited Mom’s check, the car that honked its horn when I, with a rare New England reflex, stopped and waited as soon as the pedestrian put one foot in the crosswalk. Our new home has some nice benefits, I told myself firmly. Coming back from dance on Saturday night, about 10:30, the traffic was stop and go. Looking down over the viaduct, it was solid cars on I-25 stretching in both directions as far as we could see. HA!

As we flew back home, I tried to think about all the good things waiting for us in Massachusetts: trees, water, our big old Victorian house with big old heating bills. Stop that, I told myself, the energy audit is next week. It’ll get better. We were coming back to good neighbors, maple syrup country….We were leaving behind our friends, family…. We’ll be back, we’ll be back. Remember the awful traffic…the long lines…

When we talked about it later, Emma said it best. This time we were consciously letting go of our old house, neighborhood, and city. It wasn’t harder than when we left the first time, it was just different. This time we knew we’d be going back and we would need to consciously allow our roots to develop in Massachusetts. It’s not something that happens overnight. Better be patient.

We also came back to Chris and our two dogs. Our family. And two days after we got back, we took off again, this time to Maine to see John and Coco and the grandkids. We all went, even the dogs. Coming back yesterday, the trip was just long enough to make us relieved and grateful to see the sign for our town. It would be good to get back and sleep in our own beds. One place isn’t better than the other. We’ve been grateful for good neighbors in Colorado and Massachusetts. We’ve got family in Colorado and New England. We can be travelers and explorers. We can have adventures.

Five minutes after we arrived at the house, our neighbor was at the door with a plate of cookies to welcome us home. HOME! No more traveling for a little while. We’ve had enough adventures for the moment. If anyone asks, we’ll just tell them we’re letting our roots grow.




Treasures

Terri Reinhart

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The table was almost full tonight at dinner. Our daughter-in-law, Coco, stayed home to get some much needed time to herself. She sent me a photo of her walk along the river with their dog. The rest of the family had converged on our new old gentle house in South Hadley Falls. Coco’s day was quiet and peaceful. Our day was delightfully raucous and filled with adventure.

The grandkids had to explore the house.

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The went up to the attic first thing. As they had driven up and parked at the house, one of the kids exclaimed, “You didn’t tell us they lived in a 3 story house!” They have an attic in their house, but this house just looks really tall. After running around in circles in the one semi-finished attic room, they explored the basement, then the first and second floor.

Then they discovered the playhouse. We now know the playhouse was built by Ralph, husband of Tammy, whose names were carved into the chimney in the attic in 1990. Ralph was a carpenter and the little playhouse is sturdy. It even has its own attic. What could be more exciting to our grandkids than to explore the attic in a playhouse!

Lucien was the first to go up, lifted up by his Papa. Whoa… there were all kinds of things up there. By the time they were done exploring, they had found two boxes filled with old dusty Playmobil castle sets and pirate sets with almost all the pieces there and all in good condition, a skateboard, a snowboard, a razor scooter, and an original Kettcar pedal go-cart. Oh, and a nerf gun. How could I forget the nerf gun.

All this kept them occupied until lunch. Then we took off and explored the neighborhood. We found a library (closed till Monday) and a park (closed till May). We found lots of snow with crusty ice which was almost as good as ice skating, which is to say it was just as slippery and we each fell at least once. We also found the Falls.

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At home, the kids were out on the front sidewalk with the Kettcar. Our neighbor, Richard, came over with some sleds for them, explaining that his grandchildren are skiing now, so they’re not into sledding anymore.

It was a day of treasures for everyone. Patrick and Tamara explored the city. Emma had a lovely visit and lunch with Morgan, her classmate from elementary school. John was able to treasure some time with the children all playing happily with no tears or fighting.

And with everyone here, our new house really feels like our home. That’s the best treasure of all!

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A Journey through my Dad's Heart

Terri Reinhart

It was a wonderful privilege for my sister and I to sit in on Dad's echocardiogram this morning. An echo cardiogram is an ultrasound of the heart and is often done after someone has had a heart attack. Ever since Dad's mild heart attack on Good Friday, he's been concerned and curious about what the doctor will find. 

We sat down and watched as the technician put the leads on his chest and turned off the light to start the test. Gray, fuzzy images came on the screen. That was Dad's heart? I kept trying to understand what I was seeing. The darkness started to make me sleepy. Dad's arteries, valves, the atria, the ventricles; all were fading in out in grays, whites, blacks. Half asleep, pictures started forming from his heart images on the screen.

It was like seeing pictures in the clouds. What was that? It looked like a small gray man playing a clarinet. Funny... Dad played clarinet. A three leaf clover? An elf playing piano? A hippo eating biscuits? An exotic dancer? 

"Hey," said my sister, "was the dancer upside-down?"

Uh, yeah. I'm not sure whether to be relieved or worried that we both saw an upside-down exotic dancer in Dad's heart. We were both pretty sleepy. 

After the test, the technician was quiet for a minute and said, "Well, if he was a lot younger, the doctor would see all sorts of problems, but probably, he'll want to see your dad in a year." This was not surprising. Will he still be here in a year? I know there's a lot wrong with Dad's heart. I also know there's nothing wrong with his heart.

That's because there's a lot more to see as we take this journey through my father's heart:

such as a small sheet of paper with the names of all four of us kids and a space to mark when we came home from an evening out with friends. Theoretically, this was to make it easier for Dad to get some sleep and be assured he would know who is home. He still got up to check.. every time one of us walked in the door.

A paperback book with a $20 bill stuck inside, handed to one of us whenever we needed a little cash, with the words, "don't lose the bookmark" said quietly.

A brown paper bag containing peanut butter and butter sandwiches, which meant Dad had surprised one of us by making lunch for us.

His heart is a little sloppy now and it's getting crowded in the veins. If anyone ever grumbled about our house being sloppy or crowded, Dad would laugh and say, "you should've see the house I grew up in!"

There are stories and stories and stories - about his time in Africa, his time on board ship during World War II, about his imaginary friends, Mr. Brown and Andy, and about attempting to play his clarinet with false teeth.

And there is our mother. They've been married 62 years and he's been in love with her the whole time. Even through the most challenging time of their marriage, when side effects to her prescription drugs caused psychosis, Dad would say, "I just want to live one day longer than Mom, so I can take care of her." 

Dad and I share a few things. We've both been diagnosed with Parkinson's disease. Because of this, we've been able to have our DNA testing done through 23 and Me. I perused our reports to see what we have in common and found: we share 49.9% of our DNA, we both consume a lot of caffeine, we're both light sleepers (hmm), we both have dark eyes and detached earlobes, and we both have straight dark hair.

It doesn't say anything about our hearts, but regardless of how it's working now, I hope I inherited a heart like his; even if it comes with an upside-down exotic dancer, clarinet playing guy, hippo, piano, and three leaf clover.

 

Brunch for a Bunch or Growing up with the Reinhart's

Terri Reinhart

A couple of girls in my high school class were arguing one day about who is included in one's immediate family. One insisted on only including your parents and siblings. The other just laughed. No, she said, your immediate family includes your grandparents, aunts, uncles, and all your cousins, and everyone comes to every family gathering.

My mother-in-law, Natalie, was even more inclusive. Family gatherings included all of the above plus a few neighbors, several of her teacher friends, friends of her children, and maybe a family or two from the school where she taught.

I think I fell in love with my in-laws as quickly as I fell in love with my husband. Chris was smart. He took me to meet his family very soon after we met. It was a Saturday or Sunday evening and everyone had come home for dinner. I learned, over the next few months, Chris and his 5 siblings were free to invite friends for dinner and they frequently did.

Natalie loved to cook. She had been a nutritionist in the army during WWII, stationed in England. She was used to cooking for hungry crowds. This was good, because during the next year, three of her children married, including Chris and I. As our families grew, the family gatherings grew, too. Before long, all of us were married and bringing our children along. You'd think with 6 children and their spouses and 18 grandchildren, this would be enough immediate family for anyone, but Natalie found people endlessly interesting and there would often be someone new to meet, in addition to a few old friends, colleagues, and neighbors. If anything, the gatherings became larger and included more people as the years went by.

Natalie passed away in November of 2006, five years after her husband, Paul. Chris and I visited her the day before she had the seizure from which she never awoke. She dozed on and off, but whenever she was awake, she asked about everyone in our family. Just before we left, she woke up to say goodbye. Looking up at us with bright eyes and an even brighter smile, she said, “It's been fun, hasn't it!” On the way home, Chris told me he felt she was speaking more of her life than of the moment.  It wasn't until later, we learned these had been her last words.

We still get together, but not as much. Natalie was the matriarch and truly, I believe people came together to be with her. She left us with memories of warm meals, large family gatherings which never felt crowded, and a gentle sense of humor which occasionally included novelty eyeglasses (with eyeballs on springs) and an umbrella hat.

She also left her recipes, organized in cardboard boxes, some typed, some handwritten, and some with the unmistakable purplish blue print of the school mimeograph machine. On the recipes, she kept a diary of sorts; notes on doubling the recipes and how much was left over, who came to each gathering, and how they set up the tables and chairs. Our son, John, took some of these recipes and created a lovely recipe book, which is available online.  Take a look!  He included copies of some of the original recipes, notes and all:

Easter Brunch and a Bunch More

Now, our own family is growing. Our third grandchild is due to arrive any day now. Just having our kids and grandkids together makes for a full house. Lately, however, both Chris and I have been missing the large Reinhart family gatherings and this year, we invited everyone we could think of to join us for Easter. It was wonderful!

We plan to continue this tradition, though I would never try to take Natalie's place. That would be silly. For one thing, those would be big googly-eyed glasses to fill.

clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties

clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties