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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

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.

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.

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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.

 

Wisdom and Strength and Love Shall Grow

Terri Reinhart

Having a sympathetic young police officer NOT give me a speeding ticket is one of the perks of being an elder, but being an elder also means learning how to let go. We have to let go of bits of ourselves, what we used to do, who we used to be. With any progressive neurological disorder, letting go starts a lot sooner.  What happens when we get to the point where there are things we can't do anymore? 

Okay. Stop right here. I know what you're thinking. I've heard it before, many times. Please don't send me the quotes and memes saying, "Stay positive! Don't ever say you can't do something!"  I don't want to see the videos of 99-year-olds riding skateboards, climbing mountains, or running marathons or the videos of 99-year-olds with Parkinson's riding skateboards, climbing mountains, and running marathons. I get the point. If they can do it, so can I.

Right.  

The message in these memes and videos? Running marathons = awesome, walking with a walker = not cool.   Climbing mountains = awesome, needing help to climb stairs = not cool. Riding on a skateboard = awesome, riding a mobility scooter* = not cool. If we must have Parkinson's or if we must get old, be like the awesome ones. I know it's all meant to be inspiring, but too often it's discouraging. Nope. I obviously can't be awesome because, try as I might, I'm not going to climb mountains or run marathons or ride skateboards.

Stop again. Breathe out. All those memes and videos? Hit the delete button.

Now, a reality check. Giving up the awesomeness of climbing mountains, running marathons and skateboarding isn't difficult for me. I don't do those anyway and, if I'm truly honest, I don't want to. It's when I have to give up things I love to do, that's my true test.  

Because of fatigue issues, I've had to give up a few things - working full time or  even part time, volunteering regularly, doing more than one major activity per day and not more than three per week. I've been very lucky. What I've had to give up, I've been able to replace with other activities like naps...and, well, other things... like naps.. and... Okay, instead of felting intricate pictures and figures, I'm knitting little animals for my grandchildren.  I can join my husband on his daily walks if I adapt and use my cool scooter*. I can, occasionally, be in a clinical study and once in awhile, I even get paid for it.

We all respond differently when we are faced with chronic health challenges and the challenge of growing older. Some will choose to not go gentle into that good night, but will, as Dylan Thomas' poem advises, rage, rage against the dying of the light. Some will pretend their challenges don't exist and try to pass as a younger person in perfect health. Some will be convinced their challenges will go away if they are just positive enough. Some will climb mountains and ride skateboards till the day they die. 

I don't want to spend the rest of my life raging or feeling guilty because I'm not climbing mountains.

My mentor is Dr. Paul Zeiger, engineer, scientist, university professor, yoga teacher, poet, and PWP (person with Parkinson's). He says we are given many opportunities to reconfigure our lives according to the resources we have available to us. He knows. He and his wife, Carolyn, have had to do this time after time. Paul says that growing old is the most difficult work a person will ever do. For some of us, a marathon is also known as getting through each day.

There is a verse which is said by the first and second graders at the Waldorf school at the end of each day. It allows the children to put their academic work aside, let it rest.

All my doing now has ended.
What I have learned shall rest.
When I have done my very best,
wisdom and strength and love shall grow
and I will bless all those I know.

We tend to identify ourselves by what we do and when we lose the ability to do something, it can be like losing a part of ourselves. We have to reconfigure ourselves and find out what this new.... or older body can still do. If we get stuck trying to hold on to who we were once upon a time, we're not leaving room to discover who we are now. The time for doing some things may have ended, but we can let them rest and trust in what we have learned from our doing.

We have to grieve and maybe even rage a little. But what if we take Paul's advice? What if we could let go of those lost parts of ourselves and let them  go gentle into the good night? If Paul and Carolyn's lives are an example, we know if we can let go and let those things rest, our lives are not empty, but will include wisdom, strength, love, and the capacity to bless those around us.

Skateboarding is optional.

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*My mobility scooter IS cool. Some 12 year old boys told me so. It is a TravelScoot, the best little scooter ever. Thank you, Roger, again and again, for blessing me with this gift and the bigger gift of a connection with our family in Luxembourg.

 

 

 

A Journey through my Dad's Heart

Terri Reinhart

It was a wonderful privilege for my sister and I to sit in on Dad's echocardiogram this morning. An echo cardiogram is an ultrasound of the heart and is often done after someone has had a heart attack. Ever since Dad's mild heart attack on Good Friday, he's been concerned and curious about what the doctor will find. 

We sat down and watched as the technician put the leads on his chest and turned off the light to start the test. Gray, fuzzy images came on the screen. That was Dad's heart? I kept trying to understand what I was seeing. The darkness started to make me sleepy. Dad's arteries, valves, the atria, the ventricles; all were fading in out in grays, whites, blacks. Half asleep, pictures started forming from his heart images on the screen.

It was like seeing pictures in the clouds. What was that? It looked like a small gray man playing a clarinet. Funny... Dad played clarinet. A three leaf clover? An elf playing piano? A hippo eating biscuits? An exotic dancer? 

"Hey," said my sister, "was the dancer upside-down?"

Uh, yeah. I'm not sure whether to be relieved or worried that we both saw an upside-down exotic dancer in Dad's heart. We were both pretty sleepy. 

After the test, the technician was quiet for a minute and said, "Well, if he was a lot younger, the doctor would see all sorts of problems, but probably, he'll want to see your dad in a year." This was not surprising. Will he still be here in a year? I know there's a lot wrong with Dad's heart. I also know there's nothing wrong with his heart.

That's because there's a lot more to see as we take this journey through my father's heart:

such as a small sheet of paper with the names of all four of us kids and a space to mark when we came home from an evening out with friends. Theoretically, this was to make it easier for Dad to get some sleep and be assured he would know who is home. He still got up to check.. every time one of us walked in the door.

A paperback book with a $20 bill stuck inside, handed to one of us whenever we needed a little cash, with the words, "don't lose the bookmark" said quietly.

A brown paper bag containing peanut butter and butter sandwiches, which meant Dad had surprised one of us by making lunch for us.

His heart is a little sloppy now and it's getting crowded in the veins. If anyone ever grumbled about our house being sloppy or crowded, Dad would laugh and say, "you should've see the house I grew up in!"

There are stories and stories and stories - about his time in Africa, his time on board ship during World War II, about his imaginary friends, Mr. Brown and Andy, and about attempting to play his clarinet with false teeth.

And there is our mother. They've been married 62 years and he's been in love with her the whole time. Even through the most challenging time of their marriage, when side effects to her prescription drugs caused psychosis, Dad would say, "I just want to live one day longer than Mom, so I can take care of her." 

Dad and I share a few things. We've both been diagnosed with Parkinson's disease. Because of this, we've been able to have our DNA testing done through 23 and Me. I perused our reports to see what we have in common and found: we share 49.9% of our DNA, we both consume a lot of caffeine, we're both light sleepers (hmm), we both have dark eyes and detached earlobes, and we both have straight dark hair.

It doesn't say anything about our hearts, but regardless of how it's working now, I hope I inherited a heart like his; even if it comes with an upside-down exotic dancer, clarinet playing guy, hippo, piano, and three leaf clover.

 

Parkinson's, Eating, and Cyborgs

Terri Reinhart

It's amazing how much we do during the day without thinking about it. Actually, it's a good thing we don't have to think about everything we do every day. If we did, we wouldn't have time for anything else. We'd need an entire crew to manage everything.

Captain:  Body - Report.

Data:  Heart - Currently at 74 beats per minute. Adjusting for emotional fluctuations and exercise levels, we should see an average of 69.327 beats per minute over the next 24 hrs. Blood pressure holding steady at 104 over 62. Lungs - respiration in the normal range.

Worf: Weapon systems operational, but only when startled. There seems to be some electrical malfunction. The limbs aren't receiving the proper signals. This indicates a weakness. Captain, are you sure this body is worth maintaining?

Captain: For now, yes. As long as critical operations hold, it's the only body we have until the 27th century. We need to keep it running. LaForge, what about the climate control?

Geordi:  There's something going on with the heating system; too many fluctuations. I'll see if I can make some adjustments.

I thought I was up on all the crazy symptoms of Parkinson's. I know we have to actually THINK about things like blinking, swinging our arms while walking, not looking and sounding like we are drunk when our meds wear off. I never thought I'd have to think about swallowing. 

I've been feeling sorry for myself since my neurologist and speech therapist agreed that I cannot eat unless there is someone close by who can do the Heimlich maneuver. This is when I learned about one more thing I do without thinking about it: eat. No more grabbing a few toasted almonds when I go through the kitchen. No meals when I'm alone. Makes me grumpy.

Scotty:  She canna take any more, Captain. She's gonna blow!

Until I remember some of my fellow Never Give Up Warriors who go through Gastroparesis. This is when one's stomach becomes paralyzed. I would try and explain, but I'd rather let Meg tell you herself. Meg Bernard is "Small Girl with Parkinson's".

In honour of Feeding tube awareness week, I'm reposting the story of when I got my feeding tube. I have moved on in my journey and now eat intravenously 'with my heart'; but my GJ tube is still a huge part of my world as I use the J portion for medication and the G portion to drain my stomach (yes, it's as nasty as it sounds). My central line, my GJ tube and my DBS are my miracles...AND they qualify me for the elite status of "Cyborg". You can't beat that!

                 It’s my Tube-iversary ~ Memories

DECEMBER 5, 2015 / MEG BERNARD

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

To read the entire article.... which you should... click here.

As much publicity Parkinson's has received because of celebrities such as Michael J Fox and Mohammed Ali, we still often get asked the question, "Parkinson's? That's the one where you shake, right?" Ah, if only that was all it did, most of us would say; not that shaking all the time is a walk in the park. I've been fortunate. While my biggest challenges are dystonic storms and choking, I can still eat and drink. Gastroparesis is one of those possibilities we don't hear about.  And Meg is an inspiration to all of us, even those of us who aren't Cyborgs... yet. It's all about being alive and ready to keep learning and discovering.

Captain: Now, do you have course and speed laid in?

Wesley:  Yes, sir, they are.

Captain: Very well, Mr. Crusher. Engage

 

 

  

 

Harmony and Dissonance

Terri Reinhart

"Wolcum be ye that are here. Wolcum alle and make good cheer, Wolcum alle another yere, Wolcum Yole, Wolcum!"

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The music which always gets me in the Christmas spirit is "A Ceremony of Carols" by Benjamin Britten. It might seem an odd choice; though beautiful, it's not exactly the light, cheery music we hear in the stores or on the radio. Part of the reason it speaks to me is because our choir performed this work when I was a senior in high school. The concert came during a snow storm right before Christmas break. A professional harpist performed with us. Walking out of the school in the falling snow after the concert, the music was still very much alive in my whole being. It was magical!

Britten's use of dissonance, varying rhythms, overlapping voices, and key changes make this a challenging work for a choir. From the reverent procession in Latin to the bright "Wolcum Yole!" in middle English, to the gentle lullabies then a plunge into the dark with "This Little Babe" , to the song of praise in "Spring Carol" to the energy and urgency of "Deo Gracias", we are carried on powerful waves of emotion and beauty through these carols. It's exhausting.

This is not surprising when we learn Benjamin Britten wrote the music for "A Ceremony of Carols" while on board ship, a month long voyage crossing the Atlantic from North America to England in March of 1942. He was with his partner, Peter Pears, a well known tenor. They were personal as well as professional partners. This was also right in the middle of World War II and the sea wasn't the safest place to be, nor was England as bombs were falling on their cities. 

For the celebration of Christmas, peace on earth, goodwill toward men, Britten included both the harmony and dissonance which was the world around him. This is just right. Jesus wasn't born into a world of peace and goodwill, but into this struggling, imperfect one.

This little babe so few days old has come to rifle Satan's fold...

Dissonance occurs in music when two notes which are discordant are sung or played at the same time; a major or minor 2nd is the easiest example. It's the sound of tension and our minds want to resolve the tension by coming back to the harmony of a 3rd interval. The dissonance itself is not pleasant to listen to and only can achieve beauty by the context and harmony which is around it. 

Listen closely to the music and we can hear the dissonance in Benjamin Britten's world. We hear the joy as well, but the tension is never far away. It is interesting he was inspired by poems of Robert Southwell, a Catholic priest who was executed in England in 1595 for treason; being a Catholic priest in England for more than 40 days was a crime punished by death in those days. Perhaps Britten, being a gay man in the 1940's, understood Fr. Southwell's devotion and the danger he had to accept.

There's dissonance in our world again. Of course, there always is, but right now there seems to be more than ever. We don't know what to expect, but we dare not ignore what is happening, even if listening to the news sounds like fingernails on a chalkboard. We have elected a president who has publicly made fun of disabled people, constantly and consistently puts women down, is backed by the KKK and Russia, prefers to communicate through Twitter, isn't interested in hearing security reports, among many other seriously concerning behaviors. We dare not ignore the racist comments made by the man who has been his closest adviser. We dare not ignore it when people feel empowered to harass others because of the color of their skin, their nationality, religion, or sexual/gender identity. 

We must dare to stand up to this new administration and refuse to allow a Muslim registry. We must encourage our state and local leaders to refuse to be a part of this.

There are people organizing. We don't need to do this alone. It's not one hero we need, but an entire chorus of voices. To be one voice in a chorus is to (to quote a friend) feel very small in a very big way. It's the acknowledgement that we are, and need to be, a community.

We need courage, but we also need joy. The darkest poem in this work ends with:

"If thou wilt foil thy foes with joy, then flit not from this heavenly boy"

The way a child expresses reverence is through joy. There is no other way. Whether we are expressing our reverence to God, to the earth, our home, to our families, or to life itself, to express this through joy is to give a crushing blow to those who want us to live in fear. These carols, even when the music is tense and the words speak of struggle, are filled with joy. Think of the struggle which was going on at the time Fr. Southwell wrote the poem and when Benjamin Britten wrote the music. At the end, the "Deo Gracias" is an urgent call to be thankful, but with a wonderful twist: 

"Adam lay ibounden, bounden in a bond; four thousand winter thought he not to long.

And all was for an appil, an appil that he tok, as clerkes finden written in their book.

Ne had the appil take ben, the appil take ben, 

Ne hadde never our lady a ben hevene quene.

Blessed be the time that appil take was, therefore we moun singen,

Deo Gracias!"

How thankful we should be that we are human... imperfect as we are. To stand with our fellow human beings, especially those whom our society has repeatedly tried to squash (marginalize seems much to sanitary a word) and those who need our support, and helping each other to find joy, this I believe is the work we are called to do.

Deo Gracias!

Here are the carols, sung by the Copenhagen Boys' Choir and conducted by Benjamin Britten. Each song is relatively short, the entire work is about 20 minutes. Thank you to the Internet Archive for the recording and lyrics to Benjamin Britten's beautiful music and for making this available to share with others. 

 

 


 

 

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.