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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: inspiration

Goldie Goes Dancing

Terri Reinhart

I took Emma to the thrift shop so she could look for some nice tops to wear to school. That's all we were going to do. However, Goldie decided to come along and look at clothes, too, and that's always a challenge. I see practical cotton tops to wear with jeans. Goldie sees sparkly shirts with sequins. Once I found a lovely pair of flats made out of dark gray wool. Goldie found a pair of metallic gold oxfords. We compromised and bought both pairs.

The gold shoes are for dancing.

My doctor keeps getting after me to exercise more. I don't blame her, because we all know how exercise can be more beneficial to us folks with Parkinson's than just about anything else. It's been a journey to find just the right kind of exercise I can (and will) do which has a group meeting at a time I can attend. 

I loved the Yoga for Parkinson's and Dance for Parkinson's classes and went to those for a long time. Then my days filled up with being a caregiver and grandma, and the classes had to go. It was good timing as I was ready for a new challenge. That's when I started with the Rocky Mountain Rainbeaus and fell in love with Square Dancing... and fell in love with the Rainbeaus.

One of the first party dances I attended had the theme, "Gaudy is Gorgeous". I found a sweater at a thrift shop which had been spray painted gold. It was perfect... perfectly gaudy. I wore it with my red and white striped pajama pants. One of my fellow dancers, Fritz, christened me, "Goldie Lamé", and Goldie has been a part of me ever since. My alter-ego is quite friendly and mostly harmless - unless I go shopping.

Last weekend, I went dancing. The event was hosted by The Wilde Bunch, our sister club in Albuquerque, New Mexico, and was my very first experience at one of these weekends. The gold shoes came along, too, and was admired by everyone. We danced. And danced. And danced... Friday night, all day Saturday, and Sunday morning were filled with music, dancing, and lots of laughter. We danced to the calls of Bill Eyler, Kris Jensen, Scott Amspoker, and Anne Uebelaker. We did traditional squares, hexagons, and a wonderful, but very challenging kaleidoscope dance. With Scott, we even did some line dancing. Zorba is my new earworm.

My neurologist will be very happy. 

Chris made me promise to pace myself. He didn't want me flat on my back all this week. I think I did fairly well, considering just how much dancing there was. I was in bed by 9 pm every night, not staying till the dancing ended at 10 and not going to play games till midnight. Still, by the end of the party on Sunday evening, my dystonia had started to kick in and it was a struggle to walk to the car. My friends helped me to the car and made sure I got up the stairs and into my room. Then they checked on me in the morning.

(Oh, if any of the other dancers saw me - I wasn't drunk. Really. I even have my certified, "I am not drunk" card in my wallet. No, it's not for sale. My gold shoes aren't either.)

This trip was a gift in so many ways. First of all, it literally was a gift. One person had to change her plans at the last moment and she donated her registration fee so someone else could come. I found out 3 days before we left for Albuquerque that I was going. (Jackie, Kelly, and all, you didn't know it, but that was 2 days after my birthday. What an amazing birthday gift!)

Lately I have experienced and witnessed so many acts of generosity:  A man in our Parkinson's and Dystonia Facebook group hand carves and gives away canes and walking sticks to any member of the group. Wonderbound Dance Company has open rehearsals in their warehouse building studio and invites anyone, including those who are homeless (they are very close to the homeless shelters) to come in, sit on their couches, and watch the rehearsals. An old friend and classmate of mine, Milton, donated one of his handcrafted mandolins to a Colorado band whose instruments were destroyed in a fire. 

At the end of the weekend, the Wilde Bunch donated $100 to the Ralph Lorier fund in our club to help those people who couldn't otherwise afford to dance. Ralph, a much loved member of the Rainbeaus, died from cancer earlier this year. I didn't know him well, but I remember sitting and talking with him one of the last times he came to dance. From what I do know, he lived a life of quiet and constant generosity. 

What an amazing way to start my new year! 

Me dancing and looking like I'm trying to figure out my right from my left. 

Me dancing and looking like I'm trying to figure out my right from my left. 

 

 

 

 

To the Dogs - who help us and love us

Terri Reinhart

Those who know us and those who read my other blog know we have gone to the dogs. To be more precise, we've gone to the chihuahuas, which is something I would not have ever, ever imagined. Considering the care giving tasks I've had to take on in the last few years, bottle feeding a litter of 4 chihuahua puppies was something I didn't need at all. And yet, we did it anyway and it's been incredibly therapeutic for all of us.

I never thought dressing chihuahuas in cute t-shirts would be part of my life. In fact, I'm sure I've scoffed at the idea more than once.

Dogs are our companions, work partners, and family pets. They are service animals, helping guide those who have limited or no vision, alerting hearing impaired people to alarms and doorbells, opening doors and turning on lights for people who use wheelchairs. Dogs are specially trained to alert people of seizures and calm someone with PTSD. There seems to be no end to what dogs can be trained to help us do.

Harpman, Hank, and the Spirit Guide

Then there are those who have natural talents. Hank the Cowdog is one of those dogs. He is the best buddy of Tom Kemper. Tom has Parkinson's disease. Hank catches frisbees. What happens between them is magical. Along with some friends, he has created a documentary about their relationship.

For the month of June, he's allowing us to watch it free. Here's his info:

Click on the link:   Harpman Hank and the Spirit Guide   This link takes you to the film's website. Click on the purchase button. At 'Checkout' you'll be prompted for the discount code. Enter: PREMIERE. You can follow the same instruction for both the movie and the soundtrack purchase. This promotion is valid through June 30, 2016.

When you receive your purchase receipt email, it will give you the password to see the movie on Vimeo. Do it. The soundtrack is beautiful. The story is delightful and inspiring. 

Hank the Cow Dog

Hank the Cow Dog

It's also a reminder that not all dogs have to be specially trained in order to be therapeutic for their owners. Granted, I'm incredibly impressed with the work being done with Great Danes as service dogs to people with Parkinson's. The Danes are tall enough and strong enough to brace themselves and help their owner regain their balance or stand up from a chair, among other things. The work of a trained service dog is invaluable to its owner. 

Our little chihuahuas are not nearly big enough to do that and they never will be, so what might they do as therapeutic dogs? If nothing else, they make me laugh and that's wonderful therapy.

A Magic Wand?

Terri Reinhart

As a first step, any ‘cure’ would have to stop the spread of the dysfunction in PD brains, so it would have to arrest progression. Brains do ‘heal’ through making new nerve cells and incorporating them into existing networks, but the healing process is slow. Potential ‘cures’ may include therapies that accelerate the healing processes, although it is likely that the first ‘cures’ would arrest progress and not reverse the disease or make symptoms go away entirely.
— Dr. Rohit Dhall

I have lost track of the number of ways I've been told my Parkinson's disease could be cured. The stories generally come from well meaning friends or friends of friends about someone they know, or someone a friend of theirs knows who was cured of their Parkinson's disease by taking a certain supplement, or drinking an herbal tea or following a special diet. Often people are offended when I don't jump to try the new sure-cure they've suggested. After all, so-and-so tried it and they've been symptom free ever since!

When we go to our doctors, we tend to expect them to have miracle cures, too. Antibiotics were, and still are, miracle drugs, even as we know more about the downside of overusing them. Sinemet (carbodopa/levadopa) is a miracle drug for Parkinson's which has allowed those of us with PD to function. We've come so far with modern medicine, we've become impatient. We really want a magic wand hey presto throw your crutches down and dance kind of cure.

I would be happy with this first step, described to me by Dr. Rohit Dhall. This is enough for me to know. It's exciting to think there may be a time when PD will not be progressive. Even if it's not in my lifetime and it's not totally cured, halting the progression of the disease would be amazing. Levadopa, after all, was a throw your crutches down and dance kind of cure for the time. When it was first given to Parkinsonian patients in 1961, people who were bedridden were suddenly able to walk and run and even jump. (History of Parkinson's Disease)

Dr. Rohit Dhall is the Director of Clinical Studies and Movement Disorders Specialist at the Parkinson's Institute and Clinical Center in Sunnyvale, California. He recently took 45 minutes of his time, precious time to a busy neurologist, to talk with me on the phone about the issues of Parkinson's Dementia and Parkinson's Psychosis. During our conversation, I asked some questions about a cure. The answer he gave, which I have quoted at the beginning of this article, was reassuring to me.

Perhaps because he wasn't promising a miracle, magical cure, it sounded like it might actually happen some day. 

A Room Filled with Love

Terri Reinhart

IMG112-2.jpg

The room was crowded with guests at the retirement party. In addition to her coworkers from the University, her family and friends showed up as well, some of them flying in from out of town just to come to the celebration. They all came to honor this remarkable woman. They also came because Bellverie really knows how to party.

Someone asked Bellverie Ross, Executive Assistant to the Dean of Students, Office of Student Affairs at the University of Colorado at Denver, what she was going to do now that she's retired. After all, she's worked for 36 years. The diminutive 71-year-old replied with a laugh, “I'm going back to work in a couple of months!” It's true, too. She'll return on a very limited basis to head the Senior Auditing program and a few other things.

I first met Bellverie two years ago when I was contemplating taking a college class or two. We spoke on the phone and in person. When she found out I had Parkinson's, she encouraged... no, she insisted I take classes now while I am still able to get around. One of her daughters has Multiple Sclerosis. She knows well how quickly one's abilities can change with a progressive disorder.

Since then, we've spoken together many times, Bellverie's warmth always filling the room. She told me she felt as though we had known each other all our lives, and she would always greet me with a hug. When she emailed me and asked me to come to her party, I was touched.

If I felt a little awkward entering the room and not knowing anyone except the guest of honor, it didn't last long. Bellverie greeted me with a hug and immediately took my hand and led me over to a seat next to her daughter. I saw this repeated over and over with other guests being led here and there to meet someone. I don't think she sat down to eat at all, she was far too busy.

When her colleagues spoke about her, it became obvious her warmth and love had affected many, many people. So had her indomitable energy. “Bellverie knows everyone and knows everything about everyone,” one of colleagues reported, “and most of us in this room are worried about what she'll write about us in her book.” He leaned down and said sweetly, “But you don't have any dirt on me, do you.” Bellverie sweetly smiled back and said, “Oh yes, I do!”

Another colleague related the story of her first day of work. She said Bellverie took her aside and told her, “Just listen to me and you'll do okay.” The woman said she did listen. “Everyone listens to Bellverie. You can't not listen.”

One of her friends led us all in singing, “Happy Retirement to you”, which Bellverie conducted enthusiastically. Another friend sang her tribute, beautifully, and brought us all to tears.

I sat among her friends at the table, women who had known Bellverie for many years. Some had worked along side her during the civil rights movement. One lovely woman, who had years before

started one of the first drama programs for minorities, described their friendship, “We are agape sisters. Do you know what that is? Unconditional love.”

I believe it. There was so much love and pure joy in that room, I am certain it overflowed into the rest of the building, eventually slipping through windows and doors like a fine mist and making the  passersby smile.

Later on, our petite guest of honor took the microphone to thank everyone for coming. “Always follow your dreams,” she told us. “Never give up on your dreams.”

Do you hear that? I hope so. Don't forget. Listen to Bellverie and you'll do okay.

 

To read more about Bellverie's history with the University of Colorado at Denver, read:

A Journey through History with Bellverie Ross

To learn more about the Senior Auditing Program at UCD, go here:

Senior Citizens Program

 

When Life hands You a box of Rotten Peaches

Terri Reinhart

Forget the lemons. We know what to do when life hands us lemons, and lemonade is just the not so creative beginning. There's lemons in furniture polish, cleaners, and laundry detergent. Honey-lemon tea can help soothe a sore throat, and socks soaked in lemon water and put on your feet can bring down a fever*. There are so many incredible uses for lemons. If life hands you lemons, that's cool.

But what do you do when life hands you a box of rotten peaches? Years ago, a friend told me this story:

At a time when dishonest peach salesmen roamed the country, a man bought a box of peaches from a roadside stand. When he got home and looked carefully in the box, he discovered that underneath the top layer of good fruit, everything else was rotten. You can't make peach cobbler or peach juice with rotten fruit. In fact, there's not much at all you can do with a whole box of rotten peaches. The peach pits are even poisonous.

What do you do when life hands you a box of rotten peaches?

The man was angry at first and went back to the roadside stand to complain, but when he arrived at the place, both the stand and the dishonest peach salesman were gone. What could he do?

What do you do when life hands you a box of rotten peaches?

The man walked home with his box. As he had paid a good price for the peaches, he didn't want to just throw it all away. After taking out the few good pieces of fruit, he took the rest to a place in his garden where nothing was growing. He dug some shallow trenches and buried the rotten peaches. He didn't just leave it at that. Over the next few years, he tended all of his garden, including the area where the peaches had been planted. When the first tiny seedlings appeared, he carefully weeded around them, keeping the soil moist. In the winter, he added mulch to protect the new trees from freezing.

It takes four years to go from peach seedling to peach harvest. That's a lot of patience.

I tend to get impatient when life hands me lemons. I spent many years dutifully trying to make lemonade, trying to cover up the sour taste by adding something sweet. Eventually I realized what a bitter aftertaste this had for me. For a long time after that, I simply complained about how sour the lemons were. It has taken a long time for me to learn all the other more creative things one can do with all those sour lemons. I still forget from time to time, but fortunately I have friends who gently remind me to shut up and stop complaining.

There are a lot of positive, inspirational quotes out there. I enjoy many of them, but this story is my favorite. It reminds me to have patience. It reminds me that thinking positively isn't enough and can, if not done properly, be a bit like adding sweetener to lemons. It's good, but not if I use it to cover up my challenges and pretend they aren't there. I need to remember to work positively with all the ups, downs, lemons, and rotten peaches in my life; and keep working, even when I don't necessarily feel positive.

It would be a lovely fairy tale ending if the dishonest peach seller came back and the man graciously gave him a box of good peaches. The thief may have even turned over a new leaf and become an honest man. Ah, but even good farmers are still human, and for all I know, he might have punched the salesman first, then given him a peach or two.

It's more likely the two never met again, for the story is true. I once knew this peach farmer, which makes this story just that much sweeter.

peach tree.jpg

Written in honor of all those friends to whom life has recently given large boxes of rotten peaches and all those who have tended their gardens faithfully for so many years.

 * http://www.steinerhealth.org/health/fever/   instructions for fever wrap