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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: parkinson's disease

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.

And Now for Something a Little Different

Terri Reinhart

I was standing at the beginning of the trail, looking down the long and winding road. This was a number of years ago and I was teaching kindergarten. One of my colleagues loved taking the children for long hikes in the mountains and I tagged along. Once there, I knew I was in for a challenge. Walking is not my forte. But before I knew it, one of the dads was standing beside me, waiting. “I want to hold your hand”, he informed me. I knew that he didn’t have any romantic intentions. He would just be there if I fell. I did alright, with a little help from my friend, until we came to a hill. I slipped a little and thought to myself, “Please, hold me tight! Don’t let me down!” Another parent held on to my other arm and the three of us made it down the hill together. “I’m glad you’ve really got a hold on me!” I said. “I thought I was sure to fall.”

We also went to the Berry Patch Farm every year to pick raspberries and strawberries. It is a large farm and by noon, I felt as though I had been walking through strawberry fields forever.

Two summers ago, I decided to go to the Renaissance Festival with my family. I should have known better. After walking here, there, and everywhere, I wondered out loud whether they would sell me a ticket to ride in one of the horse drawn wagons. That was a big mistake. My daughter began chanting “Bring out your dead. Bring out your dead.” I informed her that I was not yet dead.

Some days, it’s all too much.

It’s getting better, partly due to the leg braces that were suggested by my physical therapist. But I’ve learned something else, too. Music can be magical in helping me to move. Usually, my speed is that of a geriatric turtle, but if I am listening to music that is rhythmic, my legs tend to follow along. If the music is faster, my walking will be, too. The therapist suggested listening to music with headphones, but then I tend to not pay enough attention to what I am doing and I walk into walls. I f I’m going to walk into walls, I’d rather slow down. So I try to just sing quietly to myself.

The only problem is, I can’t think of any songs.

(my apologies to the Beatles, Monty Python, and Mark Gordon)


For Crying Out Loud!

Terri Reinhart

6/8/2008

My disability benefits were recently approved. In record time, too, as they were approved in less than a month from the time I applied. That’s not supposed to happen! I was told that I’d undoubtedly be denied at first, then I’d have to employ a lawyer, then it could take up to two years to be approved. But that didn’t happen. They saw my records and decided I was disabled enough to not be able to work. They approved this even before seeing the letter from my doctor.

Then it hit me. Was I really that bad?

I rebelled. I cleaned the garage and moved furniture. I gathered trash and another large pile of old things to give away. I pushed myself all day. And then I was flat on my back, exhausted, and couldn’t move for a couple of days. I cried.

It’s embarrassing how easily I can cry. I cried at the end of Star Trek: The Wrath of Khan. I mean, geez, Spock saves everyone’s life and now he’s dying and there’s that emotional scene where he’s talking to Captain Kirk and no one can do anything to save him. I cried. And I was really grateful that I was alone. And it was much worse whenever I was pregnant. Then I could watch slapstick comedy and tear up. It didn’t take much. I don’t mind crying, actually. If I am sad, it’s a wonderful release and I feel so much better afterwards. Often I can solve problems more quickly after a good cry, too. I rarely can stop tears from coming if they’re going to come, but I will also admit something else. I would really prefer not to cry in front of other people.

Crying in public is not cool. People react. They pat your arm and say something sweet and comforting. They offer you a drink of water and generally do everything in their power to get you to STOP crying. They think you’re upset about something. And maybe you are. Usually, I’m just pissed off that I happen to be crying in public – again. Then the pats on the arm and the sweet words aren’t much help. I rather swear. Or maybe hit something.

If you cry in front of your doctor, you are generally offered drugs, which is fine if you really want drugs. It’s even legal.

It seems to me that since crying is something that humans have done for thousands of years, there must be some purpose to it. And if there is a purpose to crying, why should we be embarrassed or try to hold it back?

I was curious enough about this that I did some research. I wanted to find out if there are any physiological benefits to crying. My research was thorough and complete. I looked it up on Google. I found two articles (you’ll find many more, I just read two), one by Charles Downey and the other by Dr. Kevin Keough. In the first article, I learned that crying in public was considered normal until the Industrial Revolution. At that point, we suddenly needed diligent, focused workers, not emotional ones. Crying became a solitary activity. Before that, even our heroes cried! Odysseus cries in nearly every chapter of Homer’s Iliad.

Dr. Keough talks about the chemistry of tears. It’s amazing!! When we cry out of sadness or frustration, our tears actually contain stress toxins and stress hormones that would otherwise be affecting us physiologically in a negative way. In fact, it is those stress hormones that attack the parts of the brain that are responsible for mood disorders. Crying helps to get rid of those nasty buggers so that our brains can feel safe. And it was even found that the tears that come when one cuts up onions are not the same as the tears that come when we are sad. It’s those tears from sadness that are so healing. Holding back our tears, on the other hand, is not at all healthy.

My mentor teacher always asserted that crying helps prevent head colds. I believe this is so because I have had only one head cold in the last six years. Every time I get the sniffles, I hope that something will make me sad. I don’t like head colds. So far it has worked very well.

After a good cry, there is something else I need. The pat on the arm is fine. The sweet comforting words are also okay. But what I really want at that point is for someone to say something totally off the wall and make me laugh!

Another wonderful release, laughter is like the rainbow after the rain.

People who keep stiff upper lips find that it's damn hard to smile. ” Judith Guest