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My Parkinson's Journey

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

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

Filtering by Category: living in the moment

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. 

 

Make your house fair

Terri Reinhart

...as you are able. I'm glad the song continues with this line. I'm still in the process of simplifying and clearing out everything I don't use, can't use anymore, or just simply don't need. It feels so good to do this, I will have to be careful so I don't give away things I need. Simplifying can become addicting. 

The challenging part of taking on a challenge like simplifying my life while managing a challenging health disorder is the challenge of having enough energy to do something more challenging than just simply making it through the day. Then there's the challenge of trying to pace myself so I can do challenging things without crashing and without getting totally pissed off because I can't do as many things as I used to do and everything I do is just a little more challenging than it used to be.

Today is the first Sunday of Advent. I haven't even finished writing down my Thanksgiving thoughts. 

When our children were younger, I would have made an advent calendar. I would have stayed up half the night to get it all done so it was ready in the morning. We would have also made our wreath, which was only difficult because we didn't get our tree so early and had to scramble for greens. These last few years, I've forgotten about the wreath until it came time to light the candle at dinner. Tonight, I hastily found a votive candle and holder so we could celebrate the beginning of Advent. We lit the candle, but forgot to say the verse. 

Though my spiritual beliefs have gone on a wild roller coaster ride over the last ten years or so, the traditions are still important to me. The days are getting shorter. It's time to be more introspective. Time to acknowledge the cycles of the earth and what they can teach us. The first light of Advent is the light of the stones, stones that live in seashells and crystals and bones. It's time to be thankfully aware of the basics: the ground we stand on, the bones which hold up our physical bodies, the foundation and bricks that hold up our house. 

Another basic part of our foundation we can find in a classic Advent hymn, written in 1928 by Eleanor Farjeon: 

"People look east, the time is near for the crowning of the year! Make your house fair as you are able, trim the hearth and set the table. People look east and sing today, love the guest is on its way."

Part of our foundation as human beings are other human beings. Certainly our family is our real foundation, hopefully a strong one. But the song tells us to look out from our homes. Get your house ready and make sure you have food to share. Who is our guest? As a Catholic school student when I was very young, I learned the guest is Jesus, of course. As a young adult I learned the only way to see Jesus was to see his divine light in every person.

Okay, so this is enough of a challenge for the first week. Nothing too difficult. Just get my house cleaned and tidied, make sure to have enough food on hand so if any of you decide to stop by, I can fix you a cup of tea and a snack, and make sure I am centered enough to see the divine light in everyone I meet. 

Back to tidying... as a former Catholic school kid, I have a few interesting challenges when it comes to cleaning. Even after all these years, I still have prayer books, prayer cards, an old scapular, some broken rosaries and, what I think belonged to my uncle, a wooden crucifix that is broken with Jesus' metal body tied on with string. Throwing anything such as these in the trash or even recycling them makes my inner Catholic school kid shudder. We learned (really) that if we did anything to harm the Jesus statue, we would be harming Jesus. I'm thinking of putting all these things in a basket and leaving them at the church door.

I'm sure those old superstitious beliefs are not taught to Catholic children anymore, so I don't feel bad about clearing my house and my psyche of such oddments. In my house and in my beliefs, it's time to get back to basics. It's all I have energy for, anyway.

The first light of Advent is the light of the stones.

 

Regular Exercise and Parkinson's

Terri Reinhart

When I told the parents in my kindergarten class that I would not return to teach the following year because I had been diagnosed with Parkinson’s disease, I felt compelled to let them know that there were some positive aspects of this diagnosis.

 

These included:

 

1. Now I have something to blame things on. Every time I am a little spacey, uncoordinated, forgetful, or downright weird, I can just blame it on the Parkinson’s. It’s not me.

 

2. Now I have something in common with Michael J. Fox.

             and.....

 

3. No one will ever, ever expect me to run a marathon.

 

There were other reasons, too, why I looked at this diagnosis as being very positive. For one thing, my doctor had not been sure at first that this was Parkinson’s. Leave it to me to be just a little bit different and more complicated. I try hard. I went through several neurological evaluations and the doctor talked with me about a number of possibilities, including Huntington’s and a strange disorder which she referred to as “Wild Frenchman from Maine Syndrome”.

 

I almost wished I would be diagnosed with that last one. I think I would have had a different reaction when I told my family and friends. Tell others that you have Parkinson’s and the response is usually the same. “Oh, I’m so sorry.” This comes with a pat on the arm and a sad smile. Not that I minded, it’s just that I didn’t really know what to do with that. But just think of what would have happened if I'd told my family and friends that I was diagnosed with “Wild Frenchman from Maine Syndrome”. They'd be too busy laughing to feel sorry for me.  That I could handle. 

 

The possibility of Huntington’s was not something I wanted to contemplate.

 

When the doctor finally told me that she was 95% sure that I had idiopathic Parkinson’s disease, she had a big smile on her face and said, “Let’s hope it’s that!” We practically danced out of the room.

 

The reason that the doctor was so thrilled was because Parkinson’s is the most treatable of the neuromuscular disorders. The medications are impressive in how quickly they can make you feel like a normal person. And now, many researchers are saying that exercise can be one of the best treatments for Parkinson's, perhaps even better and more effective than medications and even surgery for keeping you moving. Walking, biking, dancing, and yes, even running marathons are considered to be GOOD for you.

 

Provided, of course, that you actually do it.

 

I was involved in an exercise study for 16 months. During this time, I rode my exercise bicycle for 30 to 40 minutes every day. I was stretching and even did some exercises with weights. And I recorded every exercise session. Once a month, along with the other members of our group, I met with the physical therapist who made sure we sticking to the program. We had to show our exercise logs to the therapist. I did well! Then the study was suddenly over.

 

It’s been about six months now since it ended and I have not exercised regularly since then. When I recently had to check in with the rehab doctor, I was gently scolded and urged to begin exercising again. Actually, when I think about it, she wasn’t really that gentle about it. She wanted to know what my barriers to exercising were. I said it was time. Life gets busy and it’s hard to have time to exercise.

 

Make the time, she said.

 

I had just about caved in and decided that I would have no other choice than to get on the bicycle again when something remarkable happened. A friend of mine told me about another exercise study that had taken place. This one showed, amazingly, that doing craft work, SUCH AS KNITTING, had the same health benefits as aerobic exercising! Wow. If this is the case, and I have no reason in the world to doubt this person (not to mention the fact that I have no desire to doubt her), then I can tell my doctor that I am exercising regularly. In fact, I am exercising about two hours per day!

 

Now, I know there will be a few people who will just have to go on the internet to see if this is really true. If you find out, let me know.  However, even if there are those who refute this information, I’m sure it’s just a matter of needing more research. For this, I’d be happy to be a guinea pig.

 

I’ve got plenty of knitting to do.

New Year's Resolution - busted already

Terri Reinhart

I blew it already. I had such high hopes of keeping this year’s resolution ALL year, without slipping. These resolutions are important. We really should be good role models for our children, shouldn’t we? And, of course, I foolishly thought that this would be an easy resolution to keep. I am finding that the art and skill of dawdling is taking a lot more attention than I had imagined.

 

Sadly to say, I found myself multi-tasking yesterday. I was riding my exercise bicycle, watching a movie, and knitting at the same time. Lounging in the dentist’s chair later in the day, I also had my knitting on my lap and managed to get about 10 rows done while the dentist did whatever he was doing in my mouth. When it came time to make dinner in the evening, there I was, making out my to-do list for the next day, scheduling an appointment over the phone, stirring the rice, adding broth to the chicken, and, naturally, I had my knitting on my lap, too. My mind was racing. What will I donate to our school auction? How on earth am I going to get all my sewing done on time? Did I just put cinnamon on the chicken?

 

What I can’t figure out, is why some people seem to think that multi-tasking is a good thing. They even brag about their ability to multi-task as though this is the absolute proof of their superior intelligence.

 

Who even invented that word? What does is really mean? I suspect that it means something like, “doing many things badly at the same time.” Moms everywhere, and dads, have a great deal of experience in doing many things at once, though not by choice. Some of us even become relatively good at it. I remember the days when my children were young and I would be holding a baby in one arm, nursing, and buttering toast with the other hand, all the while I was watching my toddler and trying to discourage him from climbing into the dishwasher. I could do almost anything one handed, even break eggs. Sure, I had to pull all the little bits of shell out afterwards, but hey, I could do it!

 

I also remember the day when I was so proud of everything I had accomplished. Two little ones, clean and fed and playing happily on the kitchen floor while I worked to clean up the kitchen and prepare dinner. I busily went back and forth between stirring the sauce on the stove, wiping down the counters, cutting up vegetables for a salad, and singing along with the latest children’s music playing on our old stereo. It was the perfect picture of domestic life.

 

Then the phone rang and someone knocked on the door at the same time. I quickly answered the phone and asked the person on the other end to hold on a moment. I answered the door to a neighbor wanting to borrow a couple of eggs. I invited her in and picked up the phone again, stirring the sauce slightly and turning on the oven to heat it up.

 

I had just turned down the opportunity to have a family portrait taken and receive a free 8 x 10 glossy photo, when my neighbor yelped and grabbed my sleeve. Smoke was pouring out from underneath the stove and little flames were beginning to appear. What the.....????

 

I dropped the phone and opened the broiler drawer that was underneath the stove and found that my son had decided that this drawer made a perfect bed for his stuffed bear. As soon as I had turned on the oven, we had fried bear. Fortunately, there was just a tiny corner of the bear that was actually flaming and I was able to pick it up with tongs and put it in the sink, turn on the water, and douse the flames quickly. By then, I could smell the sauce burning, the kids had managed to knock over the cutting board, and the vegetables were scattered on the floor. I could hear someone on the phone loudly shouting HELLO?! My neighbor had taken her eggs and run. I briefly considered returning the bear to the broiler and serving it for dinner.

 

I looked forward to the day when the kids would be old enough that I could go back to work. My goal was to have a job that didn’t require doing more than one thing at a time. So, what did I do? I taught kindergarten. But at the very least, I did have a 45 minute break every day.

 

Now that I am retired, I am determined to take life more slowly. A couple of years ago, my oldest son gave me a wonderful book, titled, In Praise of Slowness, Challenging the Cult of Speed, by Carl Honore, which describes the origins, intent, and benefits of the “slow movement”. It talks about how our culture has become dependent on clocks, how we schedule our lives and try to fit in as much as possible. Even our children’s play time is scheduled into “play dates” and we hurry to get them from play to music lessons to school to dinner to bed. It also tells how we can change this attitude towards life and time. I like the idea of a slow movement. What could be better? In the spirit of the book, I began reading, and two years later, I’m still on chapter two.

 

One of my favorite bits in the book, so far, is when the author talks with a Buddhist teacher about these subjects of time, living by the clock, and scheduling our lives. Nearing the end of their conversation, the Buddhist teacher suddenly looks at his watch and, very sheepishly excuses himself. He had an appointment to keep and would have to hurry to get there.

 

Like I said, dawdling takes much more attention than I realized. Going slow is an attitude change, even when life throws everything at you at once. It’s about having a balance, I suppose. I only know that if I’m not careful, I’m going to start multi-tasking again.

 

And that would never do.

 

New Year's Resolution

Terri Reinhart

dawdle \dȯ-dəl\ verb

 

I have finally, after much thought, decided what my New Year’s resolution will be. I know, I know...it’s already past the middle of January and resolutions are supposed to be made on the first, right? But, really, there’s no sense in hurrying this, you know. A New Year’s resolution needs to be chosen very carefully. It should be practical enough that you will have some motivation for keeping it and yet also show that you are one of those people who strive to take life seriously and make the world a better place just because you are serious about it.

 

My New Year’s resolution is to dawdle.

 

The word, “dawdle”, has several meanings in the dictionary, but the one I like the best is: “to take one’s time, proceed slowly, linger”. I like this and I take it very seriously. Taking one’s time is important. I know that our society seems to think that faster is better and multitasking is an important job skill, but I suspect there are jobs that would benefit from taking one’s time and proceeding slowly. Jobs like Secretary of State, Brain Surgeon, and the Mechanic who works on the big city trucks and snowplows are a few that come to mind immediately.

 

This definition is, of course, different from the other definition of dawdling, which is: "that which my daughter does every morning before school."

 

I can think of no better time to “proceed slowly” than when one is considering the possibility of having brain surgery. That was my conclusion, anyway, after some months of evaluations, tests, and fretting over whether or not this would be the best thing for me to do. My husband and I weighed the possible benefits against the possible side effects. We spoke to the surgeon, watched the information video, and did our own research. I spoke to a number of people who had already had the surgery as well as people who are on the waiting list.

 

Everyone I talked to who has had the Deep Brain Stimulation surgery, without exception, has said that it was very positive and they are glad they had it done. Any hurdles they had to go through were definitely worth the time and effort it took to get over them. Every one of these people said that their lives were better now than before the surgery. So why am I dawdling?

 

There are a number of reasons.

 

I should probably wait till I am through menopause.  Having surgery done now could confuse things.  If I start acting a little weird, no one will know what to blame it on.

 

But the biggest reason is that I still get along well, most of the time. I can take care of myself. I can walk, get up and down stairs, in and out of the car, and drive by myself. I can still type, write, and bore my family with stories. I can talk, sing, and shout at my kids. I am not depressed or anxious about my future.

 

When one person at a support group meeting, with the best of intentions, told me that I needed to have a more positive attitude and look at the glass as half full, I was a bit bewildered. I can’t honestly describe my glass as being half full. It isn’t. But it's not half empty, either.  It’s overflowing! I have said it over and over. My life today, despite my Parkinson’s, and perhaps even to some degree because of my Parkinson’s, has never been better. I feel happier and healthier than I have ever felt before.

 

Why mess with that?!

 

So I’ll wait. My kids are glad because they have just gotten used to the daily comedy routine of watching mom flailing with knives in the kitchen, walking backwards while swearing, and occasionally falling to the floor. My husband is glad to not have to worry about the possible risks connected with having any sort of brain surgery. My friends are glad because they won’t have to listen to me fretting over this decision, at least for now.

 

And I’ll keep my resolution. I’ll find as many ways as I can to take my time. I’ll go slowly with my housework and try to honestly enjoy it. I’ll savor my art projects and not give myself unrealistic deadlines. And I’ll linger with my friends and take time to enjoy each of them as well.

 

This is serious business.

 

“When you do finally get time to yourself – dawdle!”

~advice given to me in 1998 by an expert mom.

 

 

In Good Times and In Bad

Terri Reinhart

7/10/08

My oldest son called a week ago with the wonderful news that he and his fiancé were married – last March! We were delighted! We adore his wife and feel that she became a part of our family from the first moment when she arrived in Denver. We weren’t particularly surprised that they were married as they had talked about this possibility with us early in March. Being married solves some logistical issues about things such as health insurance. Planning a wedding was not practical at this time either. They were both finishing their master’s theses.

It’s easy to get married in Colorado now. Just fill in the form at the proper city office, show your ID and pay $10.00 for the marriage license. No Court Justice, minister, or priest is needed. A couple can “solemnize” their own marriage or have someone who is special to them be the person to solemnize their marriage. Personally, I think this is lovely!

It made me think of our wedding. Chris and I were married on May 5, 1979, in a little church in Buffalo Creek, Colorado. It was a very simple wedding and everyone said it was beautiful. I’ll take their word for it. One of my favorite memories was that so much of the wedding itself ended up being wedding gifts from friends. The cake was provided by a friend who loved to bake. My sister made my dress. Another friend made banners to hang in the church. I went to purchase a wedding cross for the top of the cake and the owners of the store, who knew our family well, wrapped it up and gave it to us at no charge. Even our honeymoon was a wedding present! We stayed in a tree house in Deer Creek Canyon that was built by our friend, Fr. Roger Mollison, the man who introduced us and, when we were engaged, laughingly told everyone that we were going to “commit” matrimony. This gift was a mixed blessing, however, as it snowed just three days after our wedding.

We also wrote our own vows. Looking back on them now, I realize that they really weren’t all that different from the traditional vows. We included the classic “in sickness and in health, in good times and in bad”, etc. I think that was required.

These are good vows, of course, but somewhat vague. I mean, what constitutes good times or bad times? What kind of sickness are we talking about? Did we realize that we were signing up for things like being thrown up on by small children at all hours of the night? And, of course, Chris didn’t know that that he was signing up to have a wife with Parkinson’s disease. I think if we had to write vows today, I’d add a few things. To be fair and protect the innocent (me), I will make these a bit more generic and add a few suggestions that I’ve received from friends. If you see any resemblance to your own story, it could be you.

Do you take me to be your lawfully wedded husband/wife, to have and to hold, to love and to cherish even when:

~I haven't had much sleep and haven't had the chance to shower for days?

~the house is filled with children's toys, dirty laundry, and a layer of dust that could serve as insullation?

~there is wet, dyed wool hanging in the bathroom shower, making the entire house smell like wet dog and turning the bathtub a lovely shade of purple?

~the house smells like a brewery and sounds like a rumbly tummy because there is homebrew beer fermenting in the dining room?

~the keys are locked in the car and you come all the way across town to the rescue, only to find out that the car window had been open the whole time?

~quality time together means eating at the hospital cafeteria while our child is in surgery, making valentines for our child’s kindergarten class, or watching a Little League baseball game?

~I forget to take my meds and suddenly look like a marionette with an out of control puppeteer? Or can’t get out of bed without help?

~there have been car parts or bicycle parts or plumbing parts on the living room floor for the last two weeks?

~dinner is the “chef’s surprise” and should be labeled “Eat at your own risk.”?

It’s probably good that the vows we make are a bit vague. I certainly wouldn’t have wanted to know too much about what would happen or could happen. The one thing that we do know is that when we make those vows, it’s not “all about me” anymore. It’s all about WE. And it’s really not about the easy times. It’s about those times when we stumble and fall. It is when we need our partner to help us up or we need to help our partner up, even when we don’t especially feel like doing it.

Do we still promise to love and cherish each other at those times? Would we still make those vows, knowing now what it is that we’ve signed up for?

I do.