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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.

Notes from the Road

Terri Reinhart


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.


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.


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.


In Search of a Gentle House

Terri Reinhart

There were about 20 cars lined up behind the black Mustang which was, for some odd reason, going 10 miles under the speed limit. Granted, it was getting dark and the MA 202 snaked its way through the hills around the Pioneer Valley. If one didn’t know the road well, the 45 mph limit seemed dangerously fast, but it was a Mustang, for goodness sake. Mustangs don’t go 10 miles UNDER the speed limit! Who was driving it, anyway? Some old grandmother?

We got back home a week ago after spending one week in Brunswick, Maine and another week in Massachusetts. Brunswick is now home to the Reinhart 2.0 clan, including our son, daughter-in-law, and three grandchildren. Thanksgiving in an old New England house when it’s snowing outside and the name tags by our places at the table say G1 and G2, is postcard perfect. Coco, our daughter-in-law, is a fabulous cook. I got to make pies with the kids. We also went bowling, sledding, and traipsed around through the snow by their school. We didn’t want to leave!

The plan, however, was to spend the next week in Massachusetts looking at towns and houses and finding out where we wanted to be. The first hitch in the plan was due to poor planning. Who would have thought the Brunswick rent-a-car place would run out of vehicles? Our only option was to go to Yarmouth and rent the last car available: a very sporty black Mustang.


We finally arrived at our destination: the Alexandra Dawson 1797 house in Hadley, happy to be out of a car which was not really made for normal people to fit into without practicing human origami. After we shook out the mountain and valley folds, we went in and met our hosts. Andy and Marcie are delightful and we thoroughly enjoyed our stay in their lovely home. The houses on their block are all very old and the grassy area in the middle of the neighborhood was the original Village Commons.

The next day we were shown around Springfield and South Hadley by a nice real estate agent, who showed us a number of houses for sale. It’s amazing to see what’s out there. There was a house with a custom built European sauna in the basement. One house had a bathtub in the corner of the master bedroom. One was adorable, but in a location which was super isolated.

One house was just perfect: in the perfect neighborhood, in perfect condition with a perfectly maintained yard, with a perfect master bedroom with perfect closets. Maybe it was a little too perfect for us. It was in a more upscale neighborhood and there was plenty of space between houses. You could live there for ages without ever having to meet your neighbors.

Then we saw a small Victorian house with a big front porch and a walk in attic. Secret stairways behind doors, nooks and crannies, outside sheds. Though the kitchen had been remodeled and was lovely, there were enough oddities to let us know this was certainly not a perfect house. We realized we weren’t looking for a perfect house. We were looking for a gentle house. After meeting the next door neighbor and another neighbor who was out walking her dog, we were convinced. It sounds like a place where people get to know each other. This was where we wanted to live.

We made an offer. Offer has been accepted. Now, to sell our Colorado house quickly!


G'night Dad, Sweet Dreams

Terri Reinhart

Dad passed away just before midnight on Monday, November 5th. Days before, he had told me, “You know, 93 is right on the brink, but 94? You might as well pack your bags.” He didn’t feel “peachy keen” anymore, though he still often said he did. He confessed to me one day that he felt like “horse doo-doo”, strong words for my dad who never complained. He had been diagnosed with pneumonia a few days before. He also said, “This is a funny thing. Either I’ll get over this or I’ll just go.” I asked if he’d decided which he’d do and he kind of chuckled and shook his head no. “But at least Mom is taken care of and all the funeral plans are made.” He said this very matter of fact.

When Dad couldn’t walk anymore, my sister and I took turns to stay with them. The facility staff does not do transfers or help with toileting. After Cathy left, I just moved in with them to help out. Oddly enough, though he was clearly getting weaker and weaker, his vital signs remained normal and the palliative care nurse didn’t feel he was necessarily ready for inpatient hospice. So, as a way to get him some help and evaluate further, they recommended having Dad go for a “medical respite” at a nursing home in town. He was transported Monday evening. I followed and stayed with him until 9 that evening. We called Mom from his room and he told her that I had gotten him settled into the hotel.

Before I left, he asked if I’d be there first thing in the morning. I certainly was. The call came right before midnight. Dad’s stay at respite care had lasted about 7 hours. I truly believe Dad’s leaving for the respite care gave him the permission and the space he needed to leave. I feel very much at peace with his passing.

I’m glad Cathy was able to come out one more time last weekend, and that our brothers, Tom and Dave, had been out very recently, too. True to Dad, he waited until everyone had gone home. I’m sure he didn’t want to upset their visits. And up until the last, he was trying to feed us all, offering us the desserts that came with his meals – heck, he offered us his meals, too, and a bottle of Ensure, if we wanted one!

From Dad, I inherited my organizational ability. I have his old desk, which he built, and it’s just as cluttered as it was when it sat in his office.

He taught me many things, but he didn’t teach me how to cook or how to eat healthy foods. His Christmas eve chili was made with an institution size can of pinto beans. When we got our brown bag lunches mixed up one day, I opened mine to a sandwich with peanut butter 1/2 inch thick and margarine 1/2 inch thick. Up until the last, he still was convinced that my favorite foods were pickled beets and Velveeta cheese. .. and Oreo cookies. He never forgot the Oreo cookies!

Dad taught me to not take life too seriously, to make friends where ever I go, to greet people in their own language whenever possible. He had the rare capacity to love unconditionally without loving blindly. He showed us, by his example, that getting old didn’t mean ignoring the world around you. He kept up with the news from around the world, especially his beloved Africa. He joined in with protests against the Gulf War and the news cameras liked to zoom in on the old guy who walked with a cane who was out there protesting. He took care of people, always offering them whatever he thought they might need.

He was my dad, and in the last ten years, my confidante and my ally. I will miss him terribly.

Time to Uproot

Terri Reinhart

Who leaves Colorado to retire in New England?

Normal people retire to someplace like New Mexico, Arizona, Florida, or even Mexico. Normal people go someplace warm.

We obviously have a warped idea of what is normal.

Our kids responded calmly.

John and Coco: How about moving to Maine?

Patrick and Tamara: We’re in! We’re coming with you!

Emma: Uh, what? I thought we were just TALKING about moving.

It’s sort of a now or never adventure. After discovering the consequences of having property values skyrocket, including increased property taxes and insurance, we realized we needed to make some long term plans. We needed to find a way to cut down on expenses, earn more money each month, or take advantage of the market and sell our house. The last option would leave us with enough profit to buy a house outright someplace where houses are not quite so expensive.

After talking with Paddy, our Realtor, it all started to feel a little bit too real. Yes, she feels it is doable. Yes, it’s good timing. Now, pack up, clear out things we need to get rid of, make the house look as though no one lives there, but anyone could.

I had to slow down, just a little. I wanted something to feel normal amidst all this transition. I said yes to fostering a newborn orphan kitten. Obviously, I have a warped idea of what is normal.

It’s taking some time, but I’m warming to the reality of this move. The IDEA is loads of fun, but turning it into reality is daunting. Chris, meanwhile, is packing. All three of us have become addicted to, looking at houses for sale in such faraway places as Northampton, Massachusetts. When I get panicky, I do crazy things like find out how far our favorite ‘houses for sale’ are from Costco. When I learned that Elizabeth Warren has an office in Springfield, MA, her office became another security point as in… Look at this house, it’s only 8 minutes from Elizabeth Warren’s office!

We’re not putting the house on the market until after the holidays. Until then, we look through the houses for sale, towns we might want to live in, and we learn.

I’ve learned that a coffee shop marked on the map in Massachusetts is usually Dunkin’ Donuts.

I’ve also learned that baby kittens are not the same as baby puppies. Though she is 5 weeks old now, I’m still cheering on any and all pooping. That will change eventually, I know. Most people don’t realize puppies and kittens cannot go on their own in the first weeks. Curly the kitty climbs up the mesh sides of the port-a-crib and mews when she gets stuck at the top. I am guessing we have maybe another few days or a week before she can escape and we have to abandon the crib. At least she’s figured out how to use the litter box.

We’re lucky. Maybe we’re getting priced out of Denver, but we still have choices. We have equity in our house. We can move and have more financial freedom. We should be able to travel more. We’ll certainly come back to Denver often. What it boiled down to is this choice: we can either plug away and figure out how to stretch and barely make it here or we can have a grand adventure.

We’re in our 60’s. If we’re going to have a grand adventure, better do it now!

Two More Days to Endorse Nominees for Wego Health Awards

Terri Reinhart

First things first. I am not asking you to endorse my nomination. You can if you'd like, but that's not at all the point of this article. If you're reading this, you're probably already familiar with my blog. I want you to see all the other wonderful blogs and podcasts that are out there in the world. I want you to meet more patient leaders who advocate in many ways. So, endorse if you'd like, but find at least one person you hadn't known previously and endorse them first.

CLICK HERE to see the list of nominees for WEGO Health Awards. Here you will find blogs, podcasts, patient leaders, collaborators; people who share through websites, twitter, facebook, instagram, and youtube. Their focus is on wellness, illness, coping, advocacy, survival with physical challenges and mental health challenges, and caregiving. Just about any health subject you can imagine is represented here, along with information by and/or about the author, blogger, advocate, etc. 

Find a nominee who has few or no endorsements. Look at they do. See how many "best kept secrets" are out there. Three of the winners are chosen simply by how many endorsements they receive. Two are chosen by the WEGO panel. I'm glad everyone gets a chance to win this way. The popularity contest may have merit - if you have thousands of followers, then you must be communicating something which has been helpful to many people - but not having followers doesn't mean you aren't making a difference, it just means not many people know about you.

We're down to two more days to endorse patient leaders. Hopefully the information about the nominees will stay up on the website after the contest is over. The real winners in this contest are all of us. This is a wonderful way to find the gems hidden all over the internet.


Terri Reinhart

Two pieces of news came to me the other day, almost at the same time. The first was news we all heard: Alan Alda came out publicly to say he had been diagnosed with Parkinson's disease 3 years ago. As he was diagnosed quite early, before the classic symptoms of PD had begun, he is still just beginning this journey. Not long after reading this, I received a message to say Kate Kelsall had passed away on Sunday, July 29, ending her journey with Parkinson's disease.


Ask anyone who knew Kate and the first thing you'll probably hear is "She was a force to be reckoned with". Kate took the Parkinson's community by storm. She had DBS surgery and, with Valerie Graham, was a patient liaison for patients having DBS and they started the Bionic Brigade support group. She talked Paul and Carolyn Zeiger into starting a support group for caregivers. She danced, played accordion, went to the World Parkinson Congress in Montreal, won a channel 7 Everyday Hero Award with Valerie, among many, many other things, and... she wrote a blog.

In her very first entry, dated September 27, 2006, Kate talked about being approved for long term disability benefits, thus confirming what she knew already: Parkinson's disease is "chronic, permanent, progressive, and incurable". She had hoped she would be the 2nd miracle which Pope John Paul II needed for his sainthood application or at least the "DBS or PD poster child". In the last paragraph, she makes a sobering observation: The letter further stated: “In no event, will benefits be payable beyond October 1, 2015.” Oh well, perhaps I won’t have to worry about it. I doubted if I’d even be around with advanced PD in 2015 or as Nora Ephron described it her latest book, "I Feel Bad about My Neck" as “dancing around the D word.” 

Kate talked about her DBS surgery, dancing, her challenges with speech, her frustrations and her victories. She listed resources, talked about various forms of exercise, and discussed ways to make our lives better. She interviewed others and encouraged guest bloggers to allow her to publish their writing. She was the first person to publish my articles. I'm not even sure how she found out about my writing. 

She also wrote about death. She didn't even "dance around the D word". Kate talked about the death of her mother: "We fear that our Mom who suffers from Lewy Body Dementia (LBD) will either choke to death or starve to death." and "Aspiration pneumonia, a leading cause of death with Parkinson’s patients, often develops as a complication of mealtime swallowing problems, leading to the inhalation of food and drink."  She answered one reader's question on October 16, 2007 with: "Frankly, my greatest worry is when and how I am going to die. The only blog posting that I started but didn’t finish was about dying with or from PD."

I argued with Kate about this. We got together a few times and we corresponded a lot through email. She told me she certainly wasn't going to live to be 80 years old and that she'd probably die of aspiration pneumonia. I insisted that we don't die from PD, but with PD. She smiled. She was sure she was right. We argued amiably about a few other things, too, like whether one could drive with dystonia and the proper length for blog posts. This one would already be too long in her opinion.

It's humbling to realize now, but Kate was right. When she died of aspiration pneumonia, 21 years after she was diagnosed, she was 67 years old. Parkinson's disease not withstanding, she barreled her way through life, always working to provide support and resources for people to make their lives better. It's really hard to imagine any Parkinson's function without her.

Well, Kate, take a little breather then, wherever you are, keep on being the force you were here on earth. Sing! Talk and yell and shout and dance! You've finally left your PD behind for good.