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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.

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.



Our Own Fab Five at Work

Terri Reinhart

Like many people, I've been enjoying watching the new Queer Eye series on Netflix. And like, probably most of the people who watch the program, I fantasize about having the Fab Five come to our home and help us redecorate, cook, buy clothes, change our hairstyles, and give us a pep talk to get us revved up about our lives.

Reality check: 1) Getting accepted for a Queer Eye makeover would be kind of like winning the lottery. 2) Imagining what the guys would say about my sense of style is humbling. Maybe it's best to figure out how to do this on my own.

I'll admit, I don't want advice on clothes. Two pairs of jeans, two pairs of shorts, some t-shirts and other odds and ends and I'm good. I'm taking my fashion hints from my husband. Oh, and... no more skinny jeans. Been there, tried that. At my age and shape, they make me look like a lollipop. I wouldn't mind help with cooking, but if I'm honest, I really just want someone to cook for me.

puppy pathway.jpg

Our Fab Five this summer are the foster puppies. Above, you can see 4 of the 5 taking my crocs out to the garden. Obviously, crocs are not in style for me this year. Jeans are in style. Long pants in 90+ degree weather. When I rebel and wear shorts, they remind me with their needle sharp teeth and claws.

They help with the landscaping, too. So far, they've taken out three types of Sedum plants, a woodsorrel, my peppermint, and the ornamental grass. The plants they've decided to leave to grow in my garden are bindweed, crabgrass, lamb's quarters, and common mallow. Interior design consists of numerous dog beds, pens, and pee pads. Oh, and dog toys. My new hair style is carefree. 

Taking on the care of foster puppies on top of all my other responsibilities and on top of trying to take care of myself and manage my Parkinson's/Dystonia challenges doesn't make a lot of sense. I don't get enough sleep and it's a lot of work. There are days when I crave just a few hours without a puppy whining or a mess to clean up. Aside from being with our grandkids, this is the best retirement job I could imagine.

What the puppies are really, truly good at is giving us the opportunity to sit and play and just be loved. 


The Resilience and the Fragility of Life

Terri Reinhart

The young robin must have flown into our window. When we arrived home after errands, it was lying on its back, perfectly aligned on the arm of our porch swing as though it had just decided to take a nap. Though I knew it was dead, I sat and held it in my hands, marveling at its perfect beauty and almost willing it to open its eyes again. Of course it didn't and I buried it on the far side of our raspberry patch.

I'm tired. Two funerals in one week have left me and my family physically and emotionally exhausted. Being greeted by a dead robin was not among the list of things I could deal with right then. 

Life can seem, at times, to be oh, so fragile. A little bird still learning how to control its flight, hits the glass at just the right place, just the right angle, just the right speed. A young woman's doctor doesn't realize how severe her infection is. A teacher finds out he has cancer. A man with a heart of gold dies of a massive heart attack. 

All life is a gift.

I've cried and yelled and shook my fist at God many times these past weeks. How dare he let a 32-year-old woman die! How dare he strike good men with good hearts in the prime of their lives! (okay, I think retirement age is prime) And why the robin? I like robins. 

"All life is a gift and it owes us nothing. It doesn't owe us longevity. It doesn't owe us good health or wealth or happiness. It is pure gift." 

I don't know the source of this saying. When I heard it the first time, it sounded almost cold - too objective. The more I read it, I began to see the wisdom in these words. We had the gift of our niece, Dani, for 32 years. In our minds, it's not long enough, but we had 32 years of the gift of her life. Our students had the gift of Mike Baker's teaching, humor, and compassion for many years. I can't begin to tell you how many people were touched by the gift of Dean Stefan's humor and warmth and generosity. To the universe, the universal, the supreme Good: Thank you for the gift of these people in our lives.

After experiencing a time when life seems so fragile, it's good to also remember how resilient life can be. My dad will be 94 in September. He didn't do any of the right things to assure longevity - except for having longevity run in his family. Our friend, Carolyn Osborn is, at 72, one of the few remaining survivors from the era of polio and the iron lung. There have been times she almost left us, but somehow, miraculously, she has come back every time. We've raised orphaned puppies from day 5 weighing a few ounces to wriggling piles of love, puppy kisses, and leaping on our laps. Our grandchildren and our gardens are growing as quickly as the weeds.

And the other night I dreamt of a tree growing at the back of our raspberry patch. As it grew, white blossoms appeared. They didn't turn into flowers, but out of each one, there came a tiny, living bird.

And they started to sing.


In Fits and Starts - Getting things done the PD way

Terri Reinhart

I'm waiting for my next dopamine surge. 

We folks with Parkinson's disease know all about dopamine. We know what happens when we don't have enough and we know what happens when we have too much. We also know there isn't any such thing and having it perfectly balanced. So, when we want to get things done, we play the dopamine game, otherwise known as doing things in fits and starts. 

Wake-up! What kind of day is today? Is it the slow motion, not gonna accomplish much today sort of day or is it the ohmygodIfeelgoodtodayandIamgoingtogeteverythingdoneonmytodolist sort of day? Okay, in general we may tend to be more the tortoise or more the hare, but day to day is a different story. How our dopamine system is doing and how it will all work with the medications can result in a roller coaster ride between dopamine surges and dopamine crashes.

This is because a lot of things affect how our dopamine system works. It's not just the medications. If we don't sleep well or if we're under a lot of stress, the meds are not going to work as well and it's not going to be easy to stay motivated. Did something exciting happen? How much caffeine have we consumed? Sometimes we don't know what the heck is causing our dopamine levels to fluctuate more than the prices of gasoline. 

We do know what this means in a practical way. 

A dopamine crash is easier to understand. We know we're going to feel lousy some days. No energy. No motivation. We'd procrastinate if it didn't take too much work. It's the day when we say, "I have Parkinson's. You can cook." 

A dopamine surge is when we expect everyone to stay out of our way, thank you very much, because we're going to Get It Done. It's kind of like an adrenaline rush, but without the racing heartbeat. It's more of a racing brain: "I think I can I think I can I think I have a plan.... I think I can rewire the light in the bathroom and replace the medicine cabinet  - myself - and then build a patio  - today - now". I like projects anyway, but during a dopamine rush, I like BIG projects.


I suppose it would be better for us to pace ourselves. Working for a shorter time everyday would help us to avoid a few of the hills and dives of the roller coaster. If we'd pace ourselves really well, we'd get things done, maybe, and not wear ourselves out to the point where we crash. I think. 

On the other hand, a dopamine surge can be a lot of fun as well as being productive. I haven't gotten the patio done yet, but I'm pleased to say I rewired the light and put up two cabinets and a new towel rack in Emma's bathroom. It took three days, several trips to Habitat Restore, and a mad dash to the Ace Hardware store where, 20 minutes before closing time, a clerk found what I needed and gave me a crash course in what I needed to do. He made sure I remembered everything so I could repeat these instructions to my husband. Sigh. 

That was 5 days ago. I'm glad it's done because I used up all the energy I had stored up. We're having pot pies for dinner. I haven't accomplished much of anything today, but that's okay. I'll save my next project for my next dopamine surge.