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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.

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.




Keeping Time - all night long

Terri Reinhart

We have no shortage of clocks in our house. There are digital clocks on the oven, the microwave, the coffee maker. There’s a large wall clock over the table. And, if by chance, we miss seeing any of those, there’s a large wall clock in the dining room that chimes every half hour.

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It’s a very impressive way to feel the time passing as we have two more chiming wall clocks that announce every half hour as well; one is in Chris’ study and one is in the basement. One of the three, we brought from Colorado. The other two were left here by the owner. They all work, but they are pendulum clocks. These delightful, wonderful machines are a little finicky. They must be wound, but not over wound. They must be perfectly level. There’s a tiny mechanism to turn to make sure the clock is going at the right speed.

They all work. One is on time. One tends to run fast. One tends to run slow. This is handy if we don’t happen to hear the first clock. Or the second. Or notice all the clocks in the kitchen. When all else fails, and our cell phone battery is dead, the third clock chimes in, just on time…. or a little behind time. It’s trying hard. In just the right spot in the house, like our bedroom, one can hear all three.

Which is all to say I couldn’t sleep last night, but I knew what time it was. When the clock chimed once, I knew it was… uh… 12:30? 1:00? 1:30? Midnight was glorious with 36 chimes: 12 at 5 minutes till, 12 at the hour, and another 12 at 3 minutes past. I heard the 2 o’clock chimes, the 2:30, the 3:00, the 3:30… At 5 o’clock, I gave up and got up. I try to make myself stay in bed until 6, but it doesn’t always work.

It’s 6 o’clock now and I’ve been up for an hour. Even then, I missed the Parkinson’s Insomnia Club meeting. I think it started at 3:00. I’ve never made it to the meetings, sleep or no sleep, so I don’t know what they talk about. Mostly I’m not really fit for human company at 3 am, so I lie awake coming up with story ideas, which I tend to forget as soon as I get up. It’s a pity, because I suspect they are really good stories, mostly because they keep me entertained for hours.

It’s 6 o’clock again. I’ve been up for an hour and 5 minutes. The furnace just came on with it’s ritual bangs and clatters. It’s raining outside, too, and the birds are singing. Who can sleep with all this noise?

And…. it’s 6 o’clock again. The last of the 18 chimes have chimed. It really is morning.

Time for tea!

Morning Musings

Terri Reinhart

My pen is on the table next to a few cards and envelopes. My goal - no, not just a goal, but a New Year’s, New Life resolution - is to hand write letters to my friends and family in Colorado and elsewhere across the country from where we are now. The letters will be heartfelt, funny, informative, and mostly, interested in whatever is happening in the lives of each of these people who are so dear to me. The plan is to set aside an hour a day to write letters.

A month after we moved in, my pen is still on the table next to the cards and envelopes. I have hand written one short note and sent it. Reality check. Am I being lazy or was my expectation unrealistic?

The population of Colorado is estimated at 5.76 million. The area of Colorado is 104,194 sq miles. The population of Massachusetts is estimated at 6.93 million. The area of Massachusetts is 10,554 sq miles. With over a million more people in a tenth of the area, it would seem like we’d be on top of each other out here. Why does it feel less crowded?

We still haven’t unpacked all the boxes. I’m starting to collect things to give away… again.

Knitting is a pretty big deal out here. There’s a huge yarn shop just 15 minutes away and there are three knitting groups in our small town. This is one of the most exciting thing I’ve found so far!

Our little town is also big on recycling. Trash pickup is every other week and, if we need to, we can take the trash to the landfill in town. Our landfill in in town and has various sheds to collect things for recycling. How easy is it to just put the trash cans on the curb every week and see it disappear? We have the privilege of seeing exactly where the trash goes and how it piles up until it becomes “Mt. Trashmore”, according to the natives.

Our neighbor says to make sure our trash is not just sitting out in trash bags - ever. We not only have squirrels who would like nothing more than to feast on whatever odds and ends they find after chewing a hole in the bag, there are also opossums and ground hogs. Chris saw deer down the block twice this week. I’ve heard beautiful bird calls and songs.

We’re settling in, but we also miss Colorado. I knew I would miss my friends, family, and neighbors. I didn’t realize how much I’d miss all my favorite stores. It sounds silly. I’ve found a few really cool second hand shops and flea markets here. What am I missing?

The adrenaline rush which carried us through the move has worn off. My Parkinson’s and dystonia has gone into overdrive these days. I’m back to doing no more than one activity per day. Unless it’s a nap. I have plenty of stamina for several naps per day. It’s hitting all of us and we’re all … tired.

And I still feel scattered as if, in the move, all the pieces of our lives were thrown up in the air and scattered around our house, the garage, the sheds, the land. We haven’t gotten all of Humpty Dumpty together again. Letter writing will have to wait until I can focus a bit more.

Would you mind if I phone now and then?

A Curious New England House

Terri Reinhart

Curious. That’s one word to describe our new old house. In this context, the synonyms are peculiar, bizarre, irregular, perplexing, and mystifying.. among others. Lewis Carroll’s “Alice in Wonderland” could have been written in a house like ours.

Nothing is level, especially not the floor. Bookshelves and cabinets have to be shimmed up in order to stand up and be reasonably stable. We found some old pieces of molding in the attic which work well for this and provide the extra 3/4 to 1” of height necessary when accounting for the difference in the floor 12 inches from the wall. We’re not only figuring out where things fit and look best, but where they can stand without looking like they’ll tumble over when someone sneezes.

We still have dozens of boxes of books waiting patiently for a place on a bookshelf.

Coming from a mid-century ranch house on ground level, the first floor here feels like we’re already upstairs. We find ourselves getting a bit disoriented. Where are we now? first floor or second? (Hint - first floor has piles of unopened boxes, second floor has more beds) The kitchen is at least twice the size of our old one, so why do we bump into each other? The reasonable explanation is that we can’t find where we put anything. My explanation is we are so used to being in a small kitchen and we can’t function if we’re not bumping into each other.

And there are those other spaces… the attic has some old knob and tube wiring still in place. We have a call into an electrician to see what it will cost to have it taken out. It freaked me out at first because we’ve been told about the fire risk by the insurance company who also told us about the higher premium that goes along with it. We know it will be expensive to take out, but we’re determined to get it done. Then we can put some insulation up there. It was oddly comforting to know that virtually all the houses in the neighborhood have this issue.

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There are these doors in this pointed corner of the hall.

There are electrical outlets near the ceiling and a light switch near the floor.

And the basement… all basements in this area take in some water when it rains, or when it thinks about raining, or when the washing machine is going. We are approximately 78 feet above sea level. We are approximately 2 inches above the water table (or so it seems). The previous owner was attempting to put a mother-in-law apartment in the basement. We can only surmise he did not like his mother-in-law. It’s a nice space for storage - as long as everything is kept off the floor!

The steps are steep.I do not need a fitness program. We are up and down countless times each day. If need be, we could live completely and totally on the first floor, but what fun is that? Listening to the wind on the second floor sounds like ghosts are coming to visit.

Maybe the ghosts can help us figure out what to do with the books.







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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Notes from the Road

Terri Reinhart

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If you have a flat tire on the highway, Iowa is the place to do it. From what I hear, Iowa is filled with Good Guys who are never happier than when they are rescuing drivers in distress. Being rescued by an Iowa Good Guy is much easier than trying to explain to the AAA dispatcher where exactly you are.

I-80 is not Route 66. Route 66 is about novels and legends and TV shows from the 60’s. I-80 is about corn fields and playing “Name that Road Kill”. It’s all beautiful, in its own way, it just doesn’t change… for days.

Rest stops, once you get to Ohio, turn into Service Stops. These are high class rest stops where you can not only use the bathroom and buy something from a vending machine, you can also have lunch and do a little shopping, all in a building almost as nice as Cherry Creek Mall - at least it seems so after traveling for several days. Ahh, Nebraska, Iowa, and the rest of the states along I-80 could use some of these.

There are also “Text Stops”, basically small parking areas with decent phone reception.

We stayed at AirBnb homes for the first nights after we left home. The last two nights, however, we stayed in hotels. We paid a little extra to have the dogs with us, but then, we got a good free breakfast in the morning. This made traveling much easier.

If I ever run an AirBnb, I will make sure there is breakfast food available. I haven’t figured out why every AirBnb doesn’t do this. BnB = bread and breakfast, doesn’t it? Some of the homes had neat amenities (means cool stuff) like a pool table, a jacuzzi, exercise machines, a backyard grill and patio. Not one had any food available for guests for breakfast. Not that we expected a big meal fixed for us, but hey, some cold cereal and milk? Maybe a toaster and some bread and butter?

We brought two of our adult kids along. This has been great except I think Patrick’s getting the short end of the stick when it comes to beds. Places would list beds: 1 queen, 1 full, and 1 couch. Patrick would offer to take the couch. Fine.

We gave away about half our possessions, though it may not seem like it when the two pods arrive on Monday. The previous owner to this house left a whole bunch of stuff here. For the most part, it’s really cool! There’s a beautiful dining room set with a large china closet (big enough for all our fine dishes and Chris’ pipes), a glider rocker and footstool, a bookcase, a coffee table with storage drawers that’s bigger than our closet, a large TV cabinet, two wall clocks, a picture of the beach and a lighthouse, plants and plant stands, artificial plants (several), a queen sized bed, two pellet stoves, a recliner, a small chest freezer, a grill, a snowblower, a lawn mower, many keys that don’t seem to fit anything, two ironing boards, and a cement mixer.

We’ve really appreciated the bed and the dining room set. We also love the glider rocker. I’m sure we’ll appreciate some of the rest of the stuff, too, but not all. When the pods arrive, we’ll have to decide what stays with the house and what goes into the next giveaway.

Update on Monday… We now have internet, though some of the wires will have to be updated before we can do too much. There seems to be a lot of reversals in the way things were wired. We definitely need an electrician out soon anyway. There’s still some knob and tube wiring in the attic that must come out. We also had locks re-keyed, opened bank accounts, and started emptying the pods. One pod won’t open. The driver tried and tried, felt all around to see if something had fallen against the door, and finally suggested we cut the door open. Uh, I want some confirmation on that one. In writing, please.

As we wait to hear how to open the blasted pod - the one where our bed is stowed, we have been moving furniture and boxes and more furniture and more boxes. Thank goodness Patrick came along to help. I’m quite impressed with his ability to lift large boxes of books. We have a lot of them. We still have a little to empty out of the first pod and lots of boxes need to be emptied and places found for the contents.

I suspect we’ll keep busy enough indoors tomorrow while it snows. We’ll have plenty of books to read.

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Sailing into the Future

Terri Reinhart

A leap of faith? a calculated risk? or an impulsive act of naivete?

For the sake of sounding more mature, we’ll pretend this wasn’t an impulsive act of naivete. Someone recently asked a question on r/Parkinsons (on Reddit) regarding the move they were about to make. What do you look for in a Parkinson’s friendly home? They got a lot of very good answers. None of which we followed as we chose our next home. We’ll have stairs all over the place. I say my incentive to staying in shape is having a 3rd floor writing nook in the attic. My family may have to outfit me with cushions and a helmet for sliding (bumping) down the stairs on my bottom, if I don’t stay in shape.

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First we need to get there. The furniture and most of our belongings were packed into moving PODs by the wonderful crew from Angelica Village. The rest of the stuff: what we absolutely needed on the trip as well as the odd things that didn’t get put on the POD for some reason and, while we could have left them behind, we really didn’t want to. This included some papers I didn’t get around to shredding, down blankets (in case we run into another arctic blast), dog beds and dog toys (not to mention the two dogs), a violin, a ukulele, a dulcimer, and a hand carved replica of the Mayflower.

Something would have to give or we wouldn’t have room for us.

I set it on the bird bath while looking for any way at all to fit it in with everything else in the car. In the end, Chris held it on his lap all the way to our AirBnb across town. We are in town a few more nights to tie up loose ends and see as much of the extended family as we can. Once we arrived at our temporary home, we unloaded everything and repacked, this time a little more efficiently. We’ll see how it works when Patrick puts his things in, but for now, the Mayflower is wedged between duffle bags, its sails high above the seat.

The dogs are nervous about being in the car and nervous about the AirBnb. We didn’t sleep well the first night. It didn’t help that the lawyer in Massachusetts (each party has to have a lawyer to close in MA) couldn’t find the POA paper I overnighted to her a week ago. Could I do it again? I swore a lot, then found a place where we could get the form printed from my email, then to the bank to get it notorized.

Fifteen minutes after spending $38 to overnight the form once again, I got the message. Yup, they found it. This is when frustration turned to ludicrousy and there was nothing left to do but laugh.

Our mortgage in Wheat Ridge is paid in full. The money for the new house is safe and sound just where it’s supposed to be and ready for the closing on Monday via POA. When we arrive, we’ll simply pick up the keys from our realtor or the lawyer. It seems so easy!

It took a village to sell this house. We can only look back at amazement at how so many people rallied to our cause. The seller in Massachusetts took the house off the market for 90 days to give us time to sell. Our neighbor, Deb, let us use her house as our landing place whenever we had showings or inspections. My old high school classmate, Marianne, came one day with food and window washing supplies. She washed our windows for us. My sister-in-law, Steph, swept the porch cleaner than it had ever been. Our realtor, Paddy, was oh, so patient. Her son, Mac, came over to look at our computer after the inspector fried it. Paddy’s husband, Kevin, arranged for the sewer to be cleaned. Uncle Doug came to our rescue the last week, and the Angelica Village crew came out and filled pods twice.

Joanne, our neighbor, brought us freshly baked biscotti for the trip and numerous people have offered to let us stay with them when we come back to visit. We will come back to visit, too. When one friend asked if all our treasures were packed and ready to go, I couldn’t help but realize how many treasures we are leaving behind. Friends and family will make sure we never forget our root here in Colorado.

In other words, we were reminded of how deep and how wide our roots go here in Colorado. It’s hard to leave. At times, leaving feels like a betrayal of our community who has loved us and supported us, often when we didn’t realize how much we needed their support. How can we leave our community? We had sad goodbyes this week. Tomorrow morning, bright and early, we start on our way across the country to our new home in Massachusetts. Our ship sets sail!

We’re going on an adventure. The Mayflower is going back home.

Don't Look Under the Bed

Terri Reinhart

The house isn’t officially on the market yet, but we have two showings scheduled for tomorrow morning. Crunch time. We’ve been cleaning and cleaning and cleaning and … we’re about ready to collapse. Time to compromise. So…

To prospective buyers:

Be prepared to be amazed.

We took out most of the furniture so you can see the house better. It’s all in the garage, but you don’t really need to see the garage. Just imagine that instead of boxes and furniture, your cars are parked there. The bathrooms are clean. The kitchen is clean, even the counter tops. The plethora of stuff which usually goes along with actually living in a house has disappeared… mostly.

It’s supposed to look like nobody lives here, but anyone could.

So, please, don’t look under the beds. Don’t inspect the closets TOO closely. Don’t open the washing machine. At least our cars will be parked somewhere else when you come. Otherwise I’d have to say, don’t look in the car windows, not even a glance.

There are still three people living in this house. Don’t worry. We’ve vacated temporarily so you can see it and imagine living here. Two of us inhabitants are over 60 and the third is finishing up her last week of her last semester of college. The over 60 company (two’s company) are tired. It’s not easy going through 27 years of accumulated books, furniture, old toys from our children, new toys from our grandchildren, old school drawings, grandchildren drawings, photographs, projects, projects that failed but I couldn’t bear to throw out, Halloween costumes, yard sale purchases which were just too cute to pass up, etc. The almost ready to graduate college student has two more science experiments to finish.

We’ve almost done it. We’ve given away lots. There’s a bunch of stuff put together to be recycled. The other stuff is organized (mostly), packed (mostly), and stacked neatly (somewhat) in the garage and the studio. The rest is little stuff, odd stuff, things we can’t throw away, but what do we do with them and they don’t organize well or don’t fit into the boxes. 27 years of living doesn’t always fit neatly into boxes. This is why we’re exhausted.

So… promise us… don’t peek. If you do see something that is not exactly approved “staging” for showing a house, don’t tell on us. There are clothes in the dressers and the closets, dirty dishes in the dishwasher, food in the pantry, and mud in the mudroom. We really do use our toilets and wash up at the sinks. The dogs track in leaves and mud. The kitten forgot where the litter box was today.

A little bit of our 27 year stay in this place of brick and mortar and dust bunnies is showing through the cracks. Be prepared to be amazed.

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