Living Well - Getting the body in gear

Q. What's the best kind of exercise?

A. The one you will actually do.

(from the Davis Phinney Victory Summit Symposium)

Last week, I had my regular appointment with my neurologist. She asked me a lot of questions about how I was taking care of myself. What was I doing for physical exercise? What was I doing to exercise my brain? And was I getting out into the community and being with people?

In other words, what was I doing to exercise my body, mind, and soul. I'll tackle the first one today. One thing at a time.

I was happy to tell her I was continuing with yoga and dance. I know I could also use more aerobic exercising, but at least I'm doing something regularly. She emphasized the need to do stretching exercises to keep limber. I get it. Keeping limber won't prevent dystonia, it just makes it less painful when it happens.

Yoga or dance, aren't just exercises for my body, they also challenge my thinking. I have to remember things like right and left, forward and backward, grapevine... which foot do I start on? Oops, sorry. We're going the other way? Oookaay. Dancing is also a social art.

When I was first diagnosed, we bought a recumbent exercise bicycle. It's a wonderful idea. I can ride for 30 minutes while watching a movie or listening to an audio book. I can program the bicycle to whatever difficulty level I want, and the little screen alsways tells me I have done a

Great Job! 

After we bought it, I was religious about my bicycling. Every day I upped the time slightly and in those first months, I never missed a day. I still ride it at least three times a year.

When I qualified for Medicare, I also qualified for another program: SILVER SNEAKERS! This is a great program which allows free access to the recreation center. I can use the treadmill and other exercise machines, play basketball or raquetball, and use the pool. I prefer the lazy river walking followed by a nice soak in the hot pool. Again, when I first got in the program, I went several times each week. When I go back again, I'll probably have to ask directions to the pool.

Exercise studies are also a good motivation to get physically active. There have been any number of exercise studies for people with Parkinson's in our area. It's like having a free personal trainer for anywhere from six to twelve weeks. I was just called last night about another study. This was a backwards walking treadmill study. Talk about playing to my strengths! I walk backwards well, whether I want to or not. I signed up quickly

I signed up for this study, but after thinking about it, I called back and declined. I am doing enough now. The last time I over extended myself, I ended up exhausted for weeks. Being exhausted for weeks means I fall – a lot. Too much is too much.

The best advice I've received is from Paul Zeiger, my yoga teacher. He constantly reminds us how we can turn any and every daily living activity into exercise. Before getting up in the morning, I can do simple stretching exercises in bed. When I am sitting, I can sit up straight, doing a mountain pose from the waist up. Working in the kitchen? I can still watch my posture, practice shifting my weight from one foot to another, and even balance on one foot, a modified tree pose. Before getting up in the morning, I can do simple stretching exercises in bed.

Having our grandchildren visit provides unlimited opportunities to exercise.

My posture has improved dramatically from before I was diagnosed, or rather, from before I started in yoga class. My overall coordination has improved since starting dance class. Another yoga teacher, Carol Fisher, insists we can still move gracefully, no matter how old we are, even if we have Parkinson's disease.

That's motivation.

Of Goals and Resolutions

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

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.

Savasana

It was at the end of our yoga class a couple of weeks ago. Everyone in the room was relaxing in our favorite pose: Savasana. After our workout, it's wonderful to just lie still for awhile. It's an important time, too, according to our teacher, Paul Zeiger. This is when our body has a chance to process all the work we've just done. Our class is good at this. After a couple of minutes, at least one person was snoring. My attempt to relax wasn't going so well. By the time Paul had turned off the lights, I could feel my left hand start to curl up. By the time he turned the lights on again, I had turned into a human pretzel. Both of my arms were curled tightly against my chest, my feet were curling and cramping, and my legs were crossed. I couldn't move.

Literally, savasana means “corpse pose”. I was in “rigor mortis” pose.

This has been happening more often than I'd like. To be honest, I would prefer it not to happen at all, but my body stopped listening to my preferences when I was a teenager and wanted long, thick, wavy hair and larger breasts. It certainly isn't listening to me now that Medicare has stopped paying for two of my medications. When I hit the prescription drug gap, it was like hitting a brick wall. I explored my options but couldn't afford them. I decided to slowly go off these drugs completely. What's the use of taking them at all if I can only have them half the year?

There were two immediate consequences of going off the meds. I lost 8 pounds in the first three weeks and, as certain behavior tendencies started to drop away, I realized that the effects of these drugs did more than help with my Parkinson's. I was no longer stopping at Safeway and picking up chocolate eclairs to eat in the car and baking cookies and pies every week. Of course, the physical symptoms the meds had controlled also started up again with a vengeance. My mood wasn't so good, either. I was starting to feel depressed.

I decided to look at the connections between Parkinson's medications and their effect on mood and behavior. Not enough Dopamine in your system and the communication between the brain and the muscles breaks down. It can also cause depression, over and above the normal depressing feeling of having the communication system fail and your limbs refusing to take orders. I have to consciously think about things that I used to do without thinking, like blinking my eyes. Then again, a little too much Dopamine in your system and you're at risk for obsessive/compulsive/impulsive behavior and dyskinesias; in other words, not having total control over your thoughts and actions.

This has made me think a lot about who I am. It's a little like the game of peek-a-boo that I play with our grandson. “Where's Mattheus?” I say, looking around the room. When our eyes meet, he starts to giggle. “There he is!” I exclaim as he runs into my arms for a hug. Lately, I've been trying to look through all the complex chemical and electroneurological reactions that control our personalities and moods and wondering, “Where am I? Where is Terri in all of this?” It's a strange game of peek-a-boo and I'm trying to catch a glimpse of myself.

Am I the manic-depressive wife who alternates between working non-stop on my craft projects and then crashing for several days at a time? Am I a needy person who, at times, depends too much on my friends? Am I the neglectful daughter who should be taking better care of my parents? Am I trying so hard to control my physical body that I end up trying to control everything and everybody in my life? Am I an awful person? Do I need more dopamine? 

In the midst of this self-flaggelation, there were three friends of mine who stepped up, out of the blue, to let me know that I had been a role model to them. None of them knew what I was going through. They were each from a different part of the country, too, and didn't know each other. It was humbling. My first reaction was to feel ashamed. Why would anyone choose me as a role model; especially now? Each one, however, had gone into some detail as to why they chose me. I could't argue back. I was forced to conclude that I must not be all bad.

It's terribly humbling to have to take a good, hard look at myself and embrace both the good and the "needs improvement" parts of me, those aspects that I find hard to love. Yes I am all those people I described and probably more as well; which is to say, I am human and fallible and complicated.  Knowing this is one thing, believing in myself is quite another altogether.

The experience in my yoga class the other week was a good exercise. Lying on the floor, all twisted up, I didn't want to disturb anyone else. I didn't say anything and wasn't noticed till the lights came on. I knew exactly when my teacher saw me when I heard him say, “Hmm.” He found it interesting. He finds everything interesting.  He came to help and that alerted Chris to what was going on.  The good exercise part of this was that, until Chris came to my rescue and helped me to gradually straighten my twisted arms and legs, I managed somehow, even in pretzel form with my feet painfully cramped, to find that inner quiet and peace. It's an experience I'll never forget. 

I was able to say to myself, “Here, I am.”

Another Walk in the Park or Parkour for Parkies

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 7^th, 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