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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: coping

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.

 

But it's just a headache!

Terri Reinhart

We didn't go to the doctor very often when we were growing up. Unless we needed stitches, a cast, or had strep throat, we pretty much made do with home remedies... or just simply waiting it out.

We didn't go to the doctor for the simple stuff like ear infections or childhood illnesses. An earache meant getting drops of warm vegetable oil in your sore ear. Mumps, measles, or chicken pox meant letting your siblings drink out of your glass so everyone would get sick at the same time. A headache? Lie down with a cold washcloth on your forehead. Rest. It will go away eventually. Stomach flu? Just try and get to the bathroom in time; when we could eat again, we got warm jello water. 

A few weeks ago, my dad was having some pain. "It's okay," he grimaced, "it'll go away in a minute. It always does." When we finally got him to the emergency room, we found out he was having a heart attack. He expected a heart attack would have been more painful and obvious. 

Somehow, I got the message that going to the doctor, the emergency room, or even being in bed sick for days meant I was being lazy. I don't think I was taught this, it was just something I picked up on my own.

In my 20's, I started having migraines. I didn't know they were migraines. They were headaches, albeit rather severe headaches.. that lasted 3 to 4 days. Who goes to the doctor because of headaches? Who stays home from work because of a headache? Still, over the years, I mentioned my headaches to the docs now and then. Some brushed it off, one suggested I take Ibuprofen every 4 hours - indefinitely. One told me I wasn't having migraines. I didn't find the docs very helpful; but then, I wasn't articulating my concerns very well, either. It was just a headache. 

I've learned a lot in recent years. Migraines may be an early indicator of Parkinson's disease. I've found out that a lot of people who have Dystonia have migraines. My three day migraine parties are not unusual. The nausea and sensitivity to light adds to the festivities.  Then, after the major headache is gone, along comes the Migraine Hangover. That's the day when your head isn't pounding anymore and you don't feel like throwing up; your head just sort of aches here and there, and your body feels like it's been rolled down a rocky hill, through a creek, and left overnight to dry.

Some people get an "aura" (seeing lights, smelling something, etc) that tells them a migraine is coming. I get cravings for certain foods, which I will never crave, ever again. Last week, I suddenly just had to have hash browns. I ate a lot of hash browns. I now hate hash browns.

The biggest thing I've learned is that headaches can be a big deal and docs actually take you seriously when you seriously ask for help managing them. There's medication, even some I can take, that will knock out a migraine in progress. Of course, there's the possibility of a "blow-back headache", and I can only safely take the medication so many times per month, but it's something.

I'm getting a little bit better at figuring out when to go to the doctor.. and.. there's no such thing as "just" a headache.

 

 

When getting enough rest can't happen

Terri Reinhart

Unrest - an award winning film about Chronic Fatigue Syndrome

It's the most challenging of all the challenges I go through with my Parkinson's/Dystonia brain and body. The twisting and even the dystonic storms are tolerable, mostly. I'm getting used to the slowness and heaviness of my physical body. Though the ease in which I can choke is disconcerting, I'm learning how to manage this. It's the exhaustion that gets to me.

It's this which helps me relate to the experience of people with Chronic Fatigue Syndrome. When I saw this description on a facebook post:

"When you are chronically ill, grief is a constant process. Lately, I've been doing better. My treatment regimen is working. I haven't truly crashed in months because I've charted every millimeter of my invisible fence. Within it, I am well enough to forget just how sick I truly am. When I forget, I get careless, and when I am careless, it all comes screaming back again."  ~Jennifer Brae

I read over it three times. Yes. Yes yes yes yes. This is what it is like. When it doesn't affect us 100% of the time, it's hard for other people to understand. "You look fine to me" "But you do all kinds of stuff" "You have Parkinson's? I would never have known". I don't get upset about people not understanding this. Heck, I don't understand it. I feel normal today so I get stuff done which I've been wanting to get done for weeks. I never know what will throw me off. What is too much? Where is my invisible fence?

Jennifer Brae has made an award winning film about Chronic Fatigue Syndrome. It will be showing in Denver on April 8, 2017. It is called Unrest. I'm getting ready to order my tickets now.

I still chuckle when I think of the person who advised me to never say I'm tired. That's too negative. I should say, "I'm relaxed". HA! When I'm relaxed, I'm not tired. When I'm tired, it means my body has decided to do things without consulting me; things like getting into a virtual bar fight and getting sucker punched over and over, trying to imitate the girl in the exorcist by seeing how far around my head will turn, and twisting up into the "I lost at Twister" pose.

We have to pay attention to our bodies. If I don't really and truly pay attention to the signals my body gives me to slow down, I will crash and be in bed for days. No, not relaxing tired; it's the kind of tired you get when you've got a bad case of true influenza, without the coughing or sore throat, but with headache, muscle aches, feeling shaky and weak, and heart starting to beat faster kind of tired.

There's a fine line between positive thinking and denial.

Yeah, I get it. There's also a fine line between being aware of our body and being self absorbed and overly anxious about every little twitch. Most of us went years without a clear diagnosis so being too self absorbed and anxious is understandable. It's mostly because we are or were trying so hard to understand what's happening to us.

I don't grieve a lot for the life I had before I had Parkinson's. In many ways, it's just gotten better and better. When I do grieve, it's because of the exhaustion. I want to have energy for my family. I want to have plenty of energy for our grandkids. I don't want to just be present, I want to be present and active as much as possible.

We're fostering a little Chihuahua/pug mix dog for Life is Better Rescue. Viv is the sweetest little dog and is fairly calm, most of the time. We discovered what happens when the door opens and she gets out. She took off so fast yesterday, I was scared we'd lose her. I get it, Viv. That's sort of what I do when I feel good and the door to my energy is open. I'm outta that invisible fence and off down the road before I stop to realize just how far I've gone. I've resorted to putting a leash on Viv if we're expecting people over. This way, if she makes a dash out the door, I may be able to step on the leash and prevent her from going too far.

Hopefully my family won't do the same to me! Maybe I shouldn't give them any ideas.

 

 

 

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.

 

The Way of the Tortoise

Terri Reinhart

Earlier this year... I came home from running errands for my parents and stopping for tea with a friend and looked through our little free library by our house. We enjoy seeing neighbors and other passersby stop and pick up books. Often, people leave books, too. This day, there were a number of new children's books, including The Tortoise and the Hare.

I've always loved the story of the tortoise and the hare. I identify with the tortoise. He might be slow, but he's determined and focused on where he is going. Yup. I'm the tortoise. Slow and steady. Someone who is dependable. 

Yup, that's me. 

I brought the book into the house with me and set it on the desk so I could read it to the grandkids. Then I put the kettle on, started fixing some lunch, went out to get the mail, chatted with our neighbor, remembered I needed to give them some eggs, went back in to the kettle, which was whistling loudly and sputtering, took the kettle off the stove and finished making my sandwich. I suddenly realized my neighbor was waiting at the door for her eggs. I dashed off with the eggs and an apology then returned to sit with my tea...and book.

Good old Tortoise kicks Hare's ass and wins the race while Hare is hopping here and there, stopping in the meadow to have coffee with his cousin Rabbit, taking a quick nap or two, and dashing over to the store to buy some lettuce and carrots for dinner. He's so busy, he forgets all about the race and, when he remembers, he's already far behind.

Wait a minute. I sound more like the hare. I don't want to be the hare. I'm the tortoise, right? No? Damn.

This spring... Medication change. It's a good change as it prevents the awful dystonic storms like the one that landed me in the Emergency room a few months ago. It's also hard to get used to. I feel heavy.. and slow, both physically and, to some degree, mentally. I can do one thing at a time. If I try to do more, I fail miserably, but I'm not too motivated to try. I feel as though I am carrying a heavy weight. I keep going all day, slowly. I get things done, slowly. If I want to say something, I have to think about it for a while first. I feel like I'm going crazy.

Um... I am the tortoise? Damn. 

I didn't realize how much I was enjoying being the hare. If it wasn't for the fact this medicine really works well without too many weird effects, I would talk to my doc and go off, but I know what I have to do:  learn the way of the tortoise.

Will the heavy slow effects of these meds lessen in time? Can I learn to be a successful tortoise and be the dependable wife/mom/friend I want to be? 

I've always believed that medications are the biggest challenge we face when we have a chronic disorder. If the odd, non-marketable effects weren't enough, there's the challenge of wondering who the heck we are.  Am I a tortoise or a hare? Am I an extrovert or an introvert? Am I happy and positive or depressed and negative? If I'm a tortoise, am I still me?

And the real question is: What is me, the real me, and what about me is just simply due to the chemical changes in my brain and the medications? 

It's not an easy question when you're at the mercy of medications that affect the brain. At one point, I read on a Parkinson's website about how impulse control disorder is a part of PD for many people. It's not. It's an effect of the drugs. Asking about DBS surgery, I admitted my fear of the surgery is due to the possible effects of personality changes and short term memory loss. I was told I was being unreasonable because short term memory loss and personality changes eventually would happen with Parkinson's anyway.

Huh? Even if this is a valid statement, and I don't believe it is, the concern remains. Why risk hurrying that along?

Methinks we're just prone to identity crises. We have had to give up jobs and change the way we live. Some lose their spouses who can't handle living with someone who has PD. Not all of our friends like to put up with us as our health and our meds change. WE don't always like to put up with ourselves as our health and our meds change. We all struggle with the question of who we are and what can we do that is meaningful. 

This last week, I received part of the answer, sort of, anyway. Regardless of anything else, we are the family our children and grandchildren and my parents can count on.  No matter what, I am still Mom, Grandma, daughter, wife. 

And Tortoise. Can't forget the tortoise. 

Pray for me? Let me think about it.

Terri Reinhart

I'm not embarrassed by my Parkinson's. I don't want sympathy because of it. I don't generally say much about it, but when an old classmate of mine was taken aback after I told her I was retired, I was suddenly self conscious. Not wanting her to think I had retired because I didn't want to work, I told her it wasn't my choice, I had left teaching after I was diagnosed with Parkinson's disease. 

She looked at me earnestly, put her hand on my arm, and said she was sorry. I was confused at first. Sorry I was retired? Oh. That's right. I have Parkinson's disease. She asked if she could pray for me. 

It was my turn to be taken aback. Not that I have anything against prayer. There is a lot I question about religion and spiritual matters, but holding an individual in warmth, interest, and love is not something I question. Whether or not there is a God listening in and acting on their prayers is secondary.

Regardless, I have not always been comfortable with the Christian idea of prayer. When our daughter did so well in the NICU after being born at 28 weeks gestation, a colleague told me she was sure Emma was doing well because so many people were praying for her. Something in me snapped. And... the little girl who died in the NICU the day before? Did she die because not enough people prayed? I know all the standard Christian responses to this and I still struggle with it.

For now, I have my own request. If anyone wishes to pray on my behalf because I have Parkinson's disease, please do not ask God to cure me. I do not want a miraculous, magical cure. You're welcome to ask God to nudge the researchers in the right direction for a scientific cure. A miraculous, magical cure would only affect me. That's not fair. If there is a cure to be had, it should be for everyone. I'm sort of a spiritual socialist.

I stumbled around before answering my old classmate. Yes, of course she could pray for me. I just wanted her to realize I see my Parkinson's as much as a gift as anything else. There are so many people I wouldn't have met, so many things I would never have been able to do, and so much I wouldn't have learned if it I didn't have Parkinson's. Those of you who read my blog know this already. I hope she will forward a message of gratitude with her prayer.

On the other hand, my husband has become an expert in the Heimlich maneuver. I'm not sure he looks at this as a gift, so... if anyone is listening up there, I could use a little help with the whole chew, swallow, breathe thing. 

(I'd even take the magical miracle cure for this one.)

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. 

Headology

Terri Reinhart

One of my favorite characters in Terry Pratchett's Discworld series is Granny Weatherwax. She is a witch who happens to work in a seemingly unmagical fashion, something she calls headology. In her opinion, witches don't need all that hocus pocus to light fires. All she had to do is throw the logs on the fire and glare at them until they burst into flame from pure embarrassment. 

Terry Pratchett.jpg

Terry Pratchett died last night after battling a rare form of early onset Alzheimer's disease. He was open about this battle, "The thing about Alzheimer's is there are few people who haven't been touched by the disease." I would imagine his openness was therapeutic for him in many ways, certainly much healthier than trying to keep it secret. Even so, any disease which causes such difficulties with memory and cognition, especially when it comes at a young age, is terrifying to most of us. 

A little closer to home, last week we lost a friend who had battled Parkinson's disease and dementia. Maria was 74 years old. We often were next to each other during our yoga classes and I enjoyed her gentle sense of humor. The last time I saw her, it was obvious her illness was progressing. She seemed distant as though her journey was already taking her away from the world most of us know. It didn't stop her from reaching out to me when I needed help.

Someone in the building had been fiddling with the PA system and there was a sudden electronic screech. Okay, breathe out. Admit it, you cringed when you read that, didn't you? It triggered my dystonia and I twisted up like a kindergarten pretzel (uh, a pretzel made and shaped by a 5 year old) and was unable to move. Maria took one look at me, smiled, and said, "I know just how you feel." Then she came and put her arms around me and held me. Whatever it was about this gesture of hers, my muscles immediately started to relax. Headology?

Awhile ago, I was asked to interview a neurologist and write something for my blog on Parkinson's Dementia. I hesitated. I cringed.. and then I agreed to do it. Then I never heard from this person again. In some ways, I was relieved. When I was diagosed with PD, I was finally told that my symptoms were real, there was a physical reason for them. It wasn't all in my head. It was nice to know my thinking was not going to be affected.

Then I remembered those dopamine producing cells which were dying off.. where? In my brain. I'm not sure it's possible to have any chronic illness which only affects us physically. Certainly it's not possible with PD, especially when we factor in all the medications for PD which affect... what? The brain. 

So, if the original interview doesn't happen, I'm going to write down my questions and go to my own neurologist and perhaps a few others I know in town. For Maria and for all those who have dementia as part of their Parkinson's diagnosis, it's worth researching this topic. 

And if Granny Weatherwax is available, anywhere, I'd love to interview her, too.