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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 Tag: yoga

Pain Management without Pain Medication

Terri Reinhart

"Are you sure you don't want me to prescribe some pain medication?” The emergency room doctor looked at me in disbelief. I doubt he often has people refuse this offer.

I was in the hospital last Friday afternoon with severe neck and face pain. It doesn't seem to be anything serious, more than likely a combination of my dystonia, being at the dentist for a check-up, and perhaps a type of migraine that hits in the area of the carotid artery, right behind the ear. There's nothing to do now, but wait to see if it goes away or gets worse, and manage the pain.

I'm a medication wimp. Side effects are me. It's not only medications, either. I envy people who can drink a couple glasses of wine without feeling ill or smoke a joint and get that nice, “ooh, life is good..” sort of feeling. I have a tiny bit of medical marijuana and I get that, “ooh, the room is spinning and I feel like throwing up..” sort of feeling. Prescription meds aren't much better. Past experience with pain meds have led me to expect one of three different responses:

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  1. I will puke my guts out until I am severely dehydrated and end up in the E.R., in much worse pain.

  2. My pain will go away, but my breathing is depressed. I'll lie on the couch, not able to move or speak, or sleep, while my breathing becomes shallower and shallower till finally I stop breathing altogether for 30 seconds or so. That's when I suddenly gasp for air in a panic and the process starts all over again...over and over and over.

  3. Once in awhile I get lucky and it works, without causing any puking or breathing problems. I will only try this if I'm at the hospital and being monitored. Otherwise, it's not worth the risk

This means I've had plenty of times when I've had to practice pain management without any medications at all. After this last episode, a friend asked if I would share some of the techniques which have worked for me. I don't guarantee they will work for anyone else. Everyone's systems are unique and there isn't an easy answer, but this is what I do:

For chronic pain and to prevent acute episodes:

  1. Drink water. Unless I'm puking my guts out, I try and drink as much as I can. Being dehydrated makes pain worse.

  2. Yoga. My dystonia can twist me into positions that are not normal for the human body. If I'm already twisting into weird positions consciously, my body doesn't rebel as much with the dystonia.

  3. Exercise. Walking is difficult for me, but dancing is delightful. If I'm sitting and working on my computer, I get up and stretch often.

  4. Laughter. For me, this means being with real people, family and friends, chatting, telling jokes, sharing funny stories, and laughing at my challenges. It also means writing funny stories and sharing them in this journal, and coercing family and friends into reading them.

  5. Massage therapy. Whenever I can afford it. When I can't afford it, I hope to see the “free 5 minute chair massage” sign at the Farmer's market.

  6. Balance. Get out of the house. Do housework. Rest. Don't plan more than I can comfortably do without becoming fatigued. Say no when I need to say no.

Okay, I'll admit it. The last one is impossible for me. I've tried. Well... okay...honestly? I haven't tried. My philosophy has been, “If I do this now, I'll be useless later, but if I don't do this now, I'll feel useless all day.” This attitude can be somewhat good for my soul, but the physical body eventually just has to rebel. When it does, I end up exhausted and with acute pain in some form or another. One challenge is, I don't know how much activity will cause me to become exhausted. It varies.

Techniques for managing acute pain:

  1. Stay away from screens – TV, computer, cell phone, e-reader. When I am not feeling well, looking at screens will make me tense up. My neck and back will become stiff, my dystonia kicks in, and my vision gets blurry. No screens. (As I love to write, this is hard for me, too.)

  2. Drink water and hot tea. Drinking hot liquids helps keep the digestion going. For me, that's essential to pain management.

  3. No sweets and no heavy meals. I stay away from sugar and too many carbs. Overeating, if I have any pain at all, will make me feel very ill.

  4. Hot baths. This is one of the most effective ways for me to relax.

  5. Rest. Rest. Rest. Sleep if possible.

When the pain gets really bad:

  1. Lightly stroking the skin. A massage therapist taught me this and it is how I got through a Cesearean birth without pain medications. Any place will work, it doesn't have to be done where the pain is located. It works better if you don't go in circles (don't ask me why) but just random designs. It also works if someone else does this for me. Some people cannot tolerate this gentle touch, but for most of us, it's a simple way of releasing endorphins to help with pain.

  2. Focus. This is hard to explain and I couldn't find anything written about it. This is what I've developed for myself. More than likely, someone will write to tell me what it is called; I doubt I invented anything new. I'll try to explain...

Lying down, covered warmly, I start with breathing. In yoga, I learned how to breathe in deeply and breathe out, emptying my lungs as completely as I can. It helps to count. Whatever number you count to as you breathe in, add several more numbers to your outbreath, making sure your outbreath is longer than your inbreath. This helps to calm the nervous system. No, I don't have a scientific study to back this up, but I do have a wonky nervous system that agrees with it.

As I breathe, I start to calm myself. Now, where others might tell me to go to a happy place and not think about my pain, I do just the opposite. To do this effectively, I need to know where the pain is coming from. The more I know about the exact process that's going on, the better it works.

When I know where the pain is coming from, I focus on the pain as objectively as possible. I still feel the pain, but I don't feel the panic that often comes with pain and I don't feel the need to take it away. I just contain it. I mentally let it be in whatever part of my body is hurting, and I try to allow the rest of my body to feel okay, unaffected by the pain.

It doesn't work all the time. I toss and turn and try to get comfortable. Often, though, it is when the pain is at its worst that this technique works the best for me.

Make sure you talk to your doctors about any pain you are having. They can tell if the pain you are describing is something which needs to be checked out at the office or emergency room. Then, of course, if you're not as sensitive as I am, the doc may prescribe pain medication. Take it, zone out (at home), and file this list away for another time.

Ooh, life is good!

Of Goals and Resolutions

Terri Reinhart

I opened one eye, not that I had a choice. My eyelid was being pulled open by Mo, my Life Coach and Opinion Fairy, who had taken the job of motivating me to exercise and meditate my way to better health in 2012. As irritating as it was to have a small someone attempting to wake me up in this way, something that hadn't happened since my children were young, I had to admire her. Motivating me was not going to be an easy job. Over the Christmas holidays, I had gotten used to sleeping in and being just a little bit lazy. It wasn't the safest job, either, considering I had almost swatted her away a moment ago.

Mo: “Actually, you missed me by several inches, and just a little bit lazy? You haven't gotten up before 7 since the holidays started.”

Me: “Which is why, dear Mo, they are the holidays. It's the proper time to relax.”

I opened my eyes at this point and saw that Mo was dressed in sweats and wearing a tiny whistle around her neck. It didn't look right so I blinked a couple of times to make sure I was really awake. When I looked at her again, she was still in the same outfit.

Me: “What's going on with the sweats? Are you my life coach or my personal fitness trainer?”

Mo: “Both, dearie. Today we're going to talk about New Year's Resolutions.”

Me: “We already did, remember?”

Mo: “Yeah, I know. They're nice resolutions but a little too touchy-feely. Now you need to balance those out with some practical goals. That's it. We'll call them your goals for the New Year instead of more resolutions. Your first goal is to get up earlier.”

Me, yawning: “So you're deciding for me? What time is it, anyway?”

Mo: “5:30.”

Me: “Five-thirty? Are you nuts? I have it on good authority that not even God gets up at 5:30 am.”

Mo: “Your authority being a 5 year old kindergartener.”

Me: “A very wise 5 year old.”

Mo: “Okay, we'll negotiate that later. What goals have you set for this year?”

Me: “Can't this wait till I'm more awake?”

At this, Mo flew over to my left ear and blew her whistle loudly. She has good reflexes. I didn't mean for my arms to fly up and bat at her; they did it on their own. It's called “involuntary muscle movements”, a part of Parkinson's disease with which, as my husband will testify, I have a lot of experience. I was awake. I turned to look at my husband, who was still sleeping soundly. He didn't seem the least bit disturbed by our conversation.

Mo: “That's because he can't hear us, of course. Don't ask me to explain. It's a fairy thing.”

Me: “Okay, okay. I'm awake now. Goals. We're talking about something with goals.”

Mo stamped her foot. She was getting impatient. “Your goals! My goal is to get you to make YOUR goals and stick to them. Do I have to blow my whistle again?”

Me: “I'm getting up.”

Mo: “That's better. Now, into the living room for some yoga.”

I slowly made my way into the living room, after a brief stop in the bathroom. I'm not stupid enough to attempt yoga with a full bladder. I sat on the edge of the chair and closed my eyes. I started by paying attention to my breathing and sitting with my spine straight. After a moment or so, I heard soft music in the background. It was peaceful and I relaxed. I went into some leg stretches and torso twists. Getting down on the floor, I rocked back and forth with dolphin pose and then did a few cat and cow poses. Standing again, I did a few arm raises and forward bends, then proceeded to a warrior pose. I ended with a few more leg stretches from the chair again and then sat in my chair for a few minutes in quiet. It wasn't exactly Savasana, but it would do.

I opened my eyes. There was Mo, playing a tiny flute.

Mo, quietly: “Now, isn't that a nice way to start the day?”

Me: “Yeah! Thanks for the music. It was really lovely.”

Mo: “Now, we have a few more minutes till I'm off duty. How about those goals? Have you thought about them at all?”

I had thought about them. My daughter has challenged me to go off of refined sugar for the next month. We're doing this one together, starting tomorrow. I made sure to have an extra chocolate truffle tonight to tide me over. Our cleaning and clearing out job is nearly finished. I'm proud of that! When it's done, there will be no more clutter and no piles of papers or anything else, anywhere. My husband has helped with that one. All the old papers went into the fire pit and he spent a nice crisp day burning our old documents. I think we burned out the motor in our shredder.

Mo: “Sounds good. Anything more?”

Me: “Now I need to figure out how to balance my time. How to get in those daily naps, enough exercise, my volunteer work, my craft work, and still have time to spend with my friends.” 

Mo: “It's a good thing we've got all year to work on it. I'll earn my pay, which, by the way, could be some of those sweets that you're giving up. I'll expect a truffle or two tonight.”

She flew up in the air suddenly and said something very unfairy-like. It seems my arms had taken off on their own again. It was just another involuntary muscle movement. I swear it was.

Mo will get two truffles tonight.  She's earned them.

 

Life Coach

Terri Reinhart

She was back. Sitting on my computer in a lotus position, arms gently outstretched, palms turned upward on her knees, the Opinion Fairy looked to be meditating. Her eyes were closed. I don't think she knew I was there until I started typing. She opened up one eye briefly, pretending not to notice me. For the next few minutes I left her alone and went on with my work. After that, I'm afraid I succumbed to temptation.

Me: “Hey, Opinion Fairy, you want to get your shoulders down a little. Don't shrug them. And don't over arch your back, either.” I put my fingertips on her shoulders and gave a little push downward. She glared at me.

O. F.: “I'm here to teach you how to meditate, not get pointers on my yoga positions,” she said grumpily. “I read your last article. It sounded like you could use some help.”

Me: “Yeah, well, I'm doing okay now. I even had an appointment with a therapist. One session and I'm cured.”

O.F.: “From what I heard, your therapist was pregnant and went into labor early and had to cancel all her appointments.”

Me: “Uh huh, and I feel oh, so much better because I didn't have to see her.”

O.F.: “So, what's the plan from here? Did you reschedule?”

Me: “No, I didn't reschedule. You know Kaiser. The next available appointment would probably be sometime in 2020. I've got plans, though. I'm planning on doing at least some yoga everyday, taking long walks with my husband, slowing down a little, and finding every way I can to keep my balance, physically and emotionally, without any more medication.”

O.F.: “Wow. That's impressive. Do you think you can do it? After all, your typical way of keeping your balance seems to be to swing from one extreme to another.”

Me: “Yeah, well, part of that was the medications. That's exactly why I want to go a more wholistic route this time.”

O.F.: “I'll tell you what. You could use a coach and I could use a job. I could keep you on task and teach you how to relax, live in the present, that sort of thing.”

Me: “Hmm, I'll think about that. How would I pay you? And what happened to your other gig?”

O.F.: “Some people don't appreciate other opinions, that's all. As for my pay, for an old kindergarten teacher, you don't remember your fairy stories very well, do you. Leave some food out for me. I'm partial to sweets. Don't give me clothes, though, or I'm out of a job.”

Me: “Sweets. I think I can handle that. You're hired. Oh, and, if we're to be working together, I need to know your name. I don't want to have to call you Opinion Fairy or O.F. all the time.”

O.F.: “You can call me Mo.”

Me: “Mo? That's a funny name for a fairy. Is it short for something?”

The fairy mumbled something that I couldn't hear. I looked at her and raised my eyebrows. I haven't mastered the art of raising just one eyebrow yet, but I'm working on it.

O.F. (or Mo as I must now call her): “It's short for Marshmallow, okay? A 4-year-old named me. A little girl who was eating marshmallows with sticky fingers saw me wake up. She picked me up before I knew what was happening. She named me Marshmallow and it stuck.”

Me: “The name or the marshmallow?”

Mo: “Very funny. Uh.. both actually. It took weeks to get it all off. I am glad you're going to hire me because I've found some sweets you've been stashing away and decided to take my first paycheck in advance.”

She reached into a small bag and pulled out a candy.

Me: “Uh, Mo, I think you'd better be a little careful about those candies. They're not just ordinary sweets, you know. That's my medical marijuana candy. They aren't very strong, but then, you're not very big. Take it in tiny, tiny amounts and then wait. Otherwise you can get too much without knowing it.”

Mo: “What do you mean? They taste okay.”

Me: “How much have you had? You know, I hadn't noticed it before, but your wings are starting to droop.”

Mo: “Really?”

She stood up and quickly turned her head over her shoulder to look at her wings. Immediately she turned a particular shade of moss green and put her hands up to hold her head still.

Mo: “Ooh, I feel a little dizzy. I think I'd better lie down before I fly home.”

Me: "You'll stay here tonight, Mo.  Friends don't let friends fly when they're stoned."

I got out a shoebox and folded up one of my soft wool sweaters into a sleeping bag. Carefully, I lifted the little fairy into the box and covered her up snugly. I carried the box into the living room and put it next to our houseplants. I wanted Mo to feel at home. I went back to the kitchen and found a few dried cranberries, a date, and some sunflower seeds. I put them in a dish beside the box. I whispered “goodnight” to her but she was already asleep.

Mo will be fine. She'll sleep well tonight and wake up in the morning feeling refreshed and hungry. I'm looking forward to her help. Who knows? She might even learn a few things from me.

 

Another Walk in the Park or Parkour for Parkies

Terri Reinhart

Sometimes the timing is just right.  I am starting another exercise study for people with Parkinson’s disease.  This time, the goal is to learn about treadmill walking and the effect it has on keeping us Parkies folks in shape.  My goal is to learn to walk better.  As I said, the timing is just right.  Just after this study ends, I will be walking in our first ever school walk-a-thon, to help raise money for professional development.  I signed up to walk three whole laps.  Each lap is three quarters of a mile and that adds up to… let me see, that adds up to…

Okay, math has never been my strong area, but I know it must be at least twenty miles.  Dr. Barbara, PT, PhD, Dean and Professor of the School of Physical Therapy at Regis University, said they’d get me in shape.  With all those credentials after her name, I’m willing to believe anything she says. 

The first step was an evaluation of my current walking skills and balance skills.  Of course, they also have to throw in that annoying cognitive element; something called a “mini-mental” exam.  Fortunately, they warned me about it this time.   Who expects intellectual questions from a physical therapy evaluation?  I mean, really.  Where in my life has it been important to know how to count down from one hundred by subtracting sevens? 

Participating in studies is an interesting experience.  It’s much different from any other medical appointments.  First of all, they are happy to see me.  Secondly, they are on time.  I’ve never had to wait for my appointment when I am in a study.  Usually, there is a kind student waiting to escort me directly to the exam room/physical therapy room/lab.  There are often numerous students involved and they treat me as though I am one of their teachers, hanging on my every word and offering me a chair and refreshments if I look the least bit tired.  They know that I am a volunteer and I’m not getting paid to help them out.  I know that I’m getting therapy and not having to pay for it.  It works for everyone.

I did well on the balance part.  Dr. Barbara blames my yoga class for that.  The walking part was interesting.  There was an area taped off on the floor which was to be my walking path.  I was given instructions to walk forward, backward, fast, slow, normal pace, and with my eyes closed.  Each time I walked down the hall, I was timed so they could see just how slow I am.  If all these challenges weren’t enough, before one pass, they put a large cardboard box in my path.  They wanted to watch me get over the obstacle.

Now, lately I’ve become addicted to watching parkour.  Specifically, I’ve been watching “Jump City Seattle”, a program where four teams are competing with a combination of parkour, freerunning, and acrobatics.  Parkour, in its purest form, is the art of moving quickly and efficiently, using the most direct route over and around obstacles, and it’s NOT competitive.  Freerunning includes all those showy moves like doing a triple flip in the air when you jump off of a twenty foot high building onto the concrete below.  I like to watch this for several reasons.  The first reason is because one of our former students, Dylan Baker, is on the show.  The second reason is because I can’t move that well.  It’s amazing to see what the human being is capable of doing.  Thirdly, if I can’t get to sleep at night, watching a Jump City episode is sure to tire me out. 

Of course, if that was MY kid up there, jumping off of buildings and running across narrow steel girders three stories above the street with no safety net, there is no way I could watch. 

Back to the therapy evaluation, I eyed the pathway carefully, sizing up the obstacle.  I briefly considered the possibility of doing a superman flip over the box, ending with a dive roll.  I realized, however, that the goal was efficiency and safety, not showy moves, and I settled for a rather clumsy step over the box instead.  This is called “Parkour for Parkies”.

On Wednesday, I will begin my training on the treadmill.  We’ll see how it goes!  By May 7th, I should be ready to do my laps for the walk-a-thon.  I have a few donations already.  If anyone feels moved to support my effort, please visit our walk-a-thon page at the Reinhart Family Pledge page.  We hope to meet our goal for fundraising for our teachers.  We’ve also had one friend who is pledging a donation for another cause.  That’s cool, too.  Wherever the donations go, they will encourage me to walk that extra lap.  If I slow down to a crawl and think about quitting, bribes for the benefit of the school should help.  I’m open to other bribes, too, like chocolate.

I’ve decided to go with the true spirit of parkour as well.  I’m going for efficiency, not flash.  I promise I won’t do any flips and I’m not planning on competing against anyone.

I can do this.  I will have had six weeks of training and Dr. Barbara says I’ll be in shape.  I might not even need bribes, either; unless it’s chocolate.  I might even walk a fourth lap for chocolate.

 

Donations may go to:

The Denver Waldorf School

The Boudha Shack Village

Videos about Parkour and Freerunning

Tempest TV

Team Rogue