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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.

New York City - Pride Weekend in Rush Hour

Terri Reinhart

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There were Micky Mouses and Minnie Mouses all over the place. I was wondering what brought them all to Time’s Square, which shows beyond a doubt it was our first time there. I made the expected and perfectly understandable mistake of taking a photo of them. Just that fast, we were surrounded. They offered to pose with us for a photo. Sure, why not? What came next, I should have expected: “Tip? Tip? Tip?” over and over until each one of them has a dollar or two. I wasn’t sure what would have happened had I not been able to tip them. After that, I was very careful about taking photos.

New York City is …. interesting… especially in the area around Time’s Square and Broadway. It’s glitzy and greasy at the same time. It’s exciting, fast, crowded, loud, and not very gracious…and then someone does something gracious to remind us there are wonderful people everywhere. An older man noticed my daughter and I looking lost. He stopped and quietly took his time giving us directions and made sure we understood. As he walked away, I noticed the stiff gait and lack of arm swing. We may have been helped by someone else with Parkinson’s. To be fair, I don’t think people in New York are NOT gracious, they just seem to be in a hurry all the time.

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Going to the Pride Parade in New York City on the 50th Anniversary of Stonewall sounded so cool, and it was, sort of. A LOT of people where there for the parade. Nice to see so many people celebrating Pride and showing their support, but there were so many people that the city had closed off many streets and limited pedestrians to specific walkways. This meant walking down 5th Avenue was a little like trying to drive to and through the Lincoln tunnel on Friday at rush hour on a festival weekend. It was stop and go all the way.

We were often directed to places which were not accessible for my scooter. Several times, I needed help to lift the scooter on or off a curb. Who helped? Women! In each case, it was a woman who came to our rescue. Attempting to find a place to see was a lost cause for me, so I parked and told Emma to try to get as close as she could. I took out my knitting. Might as well make use of the time. The energy was so fun and positive and alive, I was okay with not seeing the parade. I heard it and felt the energy.

the horse sharing grain with the pigeons

the horse sharing grain with the pigeons

The day before the parade, we experienced a true NYC moment. Standing by the entrance to Central Park, a young man driving a horse and buggy made his way down the road followed by an impatient driver in an SUV who honked continuously at them. Once the horse and buggy were out of the way, but before the SUV driver could hit the gas pedal, a man stood right in front of the SUV and started lecturing the driver. I don’t know what was said, but judging by the gestures, it was lively.

The best moments are always those with people we know. On Friday evening, we square danced with a group which included several of our friends from Denver. Saturday, we were treated to a wonderful lunch at the home of my cousin Daniel and his family, and Saturday evening, we had dinner and explored the city with two of Emma’s friends from college.

Central Park is also beautiful and a wonderful gift of nature in the middle of all the concrete, steel, and glass. We saw fireflies in Central Park - and squirrels and pigeons. There are trees and grass and I remembered the scene from “The Fisher King” when Jeff Bridges and Robin Williams lay on the grass naked.

I’m glad to be back home and, if this doesn’t sound like the most enthusiastic review of the big city, it might be because I came home with an infected tooth. This, too, shall pass.

We learned a lot over the weekend, not the least of which was that we can successfully navigate the city. I’m not sure how soon I want to go back, but I think I will some day. We can do this!





I Believe You

Terri Reinhart

Really? I wanted to say. Are you sure you want to believe me? You don’t think I’m a hypochondriac who is looking for lots of pain medication, despite the fact I’ve rarely taken any and, when it’s suggested, I tend to panic?

Really? I wanted to say. You trust my assessment of my own body when I say a certain pain is not muscle pain? You trust me? You’re not going to insist I go for weeks of physical therapy to prove it’s not muscle pain?

Really? I wanted to say. You believe me when I say I am super sensitive to medications? You’re not going to insist that a particular drug is safe for me and either scoff at me when I refuse to try it (yes, I know your grandmother took it without problem. I am not your grandmother) or, if I do, look at me with your face turning pale while I’m having a severe reaction and say you didn’t know I was THAT sensitive?

Thank you.

Thank you for explaining what could be causing the pain I have (it’s not awful, just there, so nobody worry) and explaining to me what other symptoms I need to be aware of and when to come back in and get things checked.

Thank you for believing me.

***

I finally got through all the ins, outs, ups, downs, twists, and turns of getting medical insurance in a new state and I had my first appointment this morning. The clinic is 25 minutes from our house, which would have been nothing in Denver, but evokes wonder here. A friend had told me about the excellent care this clinic offers and, well, I don’t care about driving a little extra ways to have excellent care.

I don’t mind the drive, especially as it curves through the Holyoke Mountain Range. The mountains here are not nearly as spectacular as the Rockies, but these gentler mountains are far more accessible, especially to this 61 year old who didn’t like driving the steep mountain roads. Here, I feel like I’m almost living in the mountains. A 10 minute drive to the northwest and we’re in the Holyoke Range. A 10 minute walk to the west and we’re next to the Connecticut River. Looking out our 2nd floor window to the east, we have seen deer. Looking out our front window on trash day, we saw a groundhog.

I digress. I just picked up my prescription at our local Big Y grocery store - a typical big grocery like Safeway or King Soopers. I did not have to present my insurance card or explain how it would be covered even though I technically don’t have prescription drug coverage until July 1st. The pharmacy knew all that already. The cost was exactly was I was expecting.

I loved my neurologist in Denver, Dr. Lynsee Hudson Lang. She was another doctor who believed me. My PCP doc at Kaiser did not believe me and, at the end, was treating me as though I was somewhat senile and couldn’t be trusted to have any opinions on my own health. After this PCP left, I had one visit with another new doctor who was patronizing and insulting and…. well, you get the picture. I decided unless I was in an acute health crisis, there was no way I’d go back. Not a good place to be.

I believe our move to Massachusetts was really the right move for us, for many reasons.


Some Thoughts on Awareness Month

Terri Reinhart

One step out of the store and I knew I was in trouble. I had no idea where I had parked my car. I’m not really getting forgetful, I just had a lot on my mind. I had just come from talking with a social worker and, finally, was feeling reassured about my health insurance. Maybe all those Humpty Dumpty pieces will go back together again, after all.

At that moment, however, knowing this wasn’t helping me to find my car. As I stood there, looking puzzled, a man walked up and looked at me. Was it so obvious I was lost? I guess so. I confessed. I had forgotten where I’d parked. I felt silly, but the man just smiled and asked what kind of car it was. I blanked out completely. After a pause, I pointed to one closest to me and said, “It’s shaped like this one, but it’s dark red.” He nodded, glanced over and said, “That Nissan Rogue over there?” YES! That was it!

It wasn’t until he was walking away that I saw the telltale stiff walking, no arm swing, and tremor in his right hand. I’d had an encounter with another person with PD and neither of us were aware of it, at least not while we were talking together.

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I recently received a lovely honor for my blog. It is listed as one of the Top Ten Real Life Parkinson’s Blogs. What I love best is the description:

“Terri Reinhart’s blog, Studio Foxhoven, is far from ‘a blog about Parkinson’s disease’. Rather, it is a frank, honest, and often humorous journal of any and every aspect of her life that she deems worthy of writing about. It just so happens that some of those aspects are, in part, shaped by Parkinson’s, with which she was diagnosed in 2007. “ from My Therapy App blog .

Over the years, I find myself writing less about Parkinson’s and more about life. It works for me. It’s not so interesting to write just about my Parkinson’s anymore. My PD and I have gotten to know each other well enough, it’s old hat. There are a lot of new things in my life right now and I don’t want to limit myself in what I write. I’m grateful the award site appreciated my attitude, too.

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Have you ever heard of Sjögren’s Syndrome? Or Relapsing Polychondritis? Or Dandy-Walker Syndrome? How about Mast Cell Activation Disorder? Did you know April is also Sjögren’s Syndrome Awareness Month? These are rare disorders, but I happen to know someone with each of these challenges. I hope you are curious enough to look them up.

I know we need to spread awareness of Parkinson’s disease. We are somewhat privileged, though, and it’s important to remember we have some very big name people helping our cause: Michael J Fox, Billy Connolly, Alan Alda, Linda Ronstadt, Neal Diamond. .. to name a few. You might have heard about Sjögren’s Syndrome from tennis champion, Venus Williams, who also has this diagnosis. The other syndromes aren’t connected with anyone famous, so unless you’ve known someone personally with one of these, this is probably the first time you’ve heard about them.

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April is also National Mental Health Month, National Autism Awareness Month, Irritable Bowel Syndrome Awareness Month, Women’s Health Care Month, Stress Awareness Month … and many more like National Poetry Month, National Fair Housing Month, and National Soft Pretzel Month. It’s also National Humor Month.

With so many many things to be aware of, it’s difficult to see how anyone can remember them all. I’ve looked ahead to May and I’m overwhelmed already! May is almost here and brings with it National Correct Your Posture Month. National Stroke Awareness Month, and National Asparagus Month. There’s one nice one arriving: National Date your Mate Month. I’m putting it on the calendar.

It’s not May yet and there’s lots I need to be aware of this month…starting with Where Did I Park My Car. Is there anyone famous out there who has this challenge?





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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