About Me

 

Terri Reinhart spent 18 years teaching kindergarten at the Denver Waldorf School. She now enjoys spending time making brooms, felting, knitting, bookbinding, painting, and filling up the house with various craft supplies. She is probably the only woman who has ever asked her husband for 50 pounds of broomcorn for her birthday. She also enjoys writing because, as she says, “It helps me to process all the crazy wonderful things in life without screaming or hitting anything.”

Her husband, Chris, is very patient.

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A humorous look at one person's journey with Parkinson's 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.

If you enjoy my writings, please share them with others! If you are a business or would like me to repost an article or other information from your website, please see the following page for my criteria for sharing other material:  Submissions.

Terri

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Entries in parkinson's (21)

Sunday
May062012

Life Coach - Quarterly Report

The corner of the paper was sticking out from under a stack of books. I wouldn't have noticed it, except a burst of energy had prompted me to start my spring cleaning. I pulled it out and unfolded it, so I would know whether or not it could be thrown away. It read as follows:

Life Coach Report 

First Quarter, 2012

Coach: Marshmallow “Mo” Fairy             

 Client: Terri Reinhart

  First Quarter Assessment

Exercise

Goal: 30 minutes of yoga/morning, 30 minutes of walking/day

Assessment: HAH! Client was up early exactly 4 days and those were not consecutive. Client did not do her yoga exercises as agreed upon. She did better with walking but only because her husband insisted she walk with him.

Household

Goal: Declutter, get rid of unnecessary papers, clothes, and other odds and ends. Keep house clean.

Assessment: Client started out well and the amount of unnecessary papers has decreased significantly, the last of the papers have been piled up in the workroom, next to the rather dusty exercise bicycle for the last two months.

Challenge: Client still has the tendency to stop at thrift shops and yard sales.

Nutrition

Goal: Eliminate sugar for 30 days, then keep sugar intake at a minimum, using desserts as payment for Life Coach.

Assessment: Not even worth discussing. Until Client is ready to make a serious change for the better, her Coach will be garnishing her supply of chocolate as payment for services rendered. This is only fair, as the Client has often forgotten to pay her Coach.

Weight

Goal: At or below present weight

Assessment: Achieved. Probably coincidental rather than from diligent work. Must have something to do with involuntary muscle movements.

Health

Goal: Keep Parkinson's medications at a minimum by living healthy lifestyle

Assessment: Client has kept medications to a minimum simply by refusing to increase them. Coach is unsure as to how this will affect Client's health goal.

Personal

Goal: Be consciously grateful for all that life brings, whether blessings or challenges.

Assessment: My Client must assess this one on her own. She appears happy, but she might be hitting the Bailey's.

Summary: Though my client has made some positive steps toward meeting her goals, she still has a long ways to go. 

Recommendations: Client should reassess her goals and rewrite them, if the original goals were unrealistic. Client should not forget to pay her Coach. Paying in advance will show the Life Coach that her Client is serious about her work. Giving her Coach a raise in pay would also be beneficial.  

I put the paper down. I had read enough.  

 “MO!” I called, “GET OVER HERE NOW!” 

I hadn't seen Mo, my Opinion Fairy and Life Coach, for some time. There had been a lot happening in our lives, and I figured Mo had gotten bored with me. I hadn't worried; until now. I called two or three times before there was a response. Then I heard a fluttering of wings. “Odd,” I thought, “Mo's usually so quiet. I've never heard her wings flutter.” Perhaps it wasn't the fairy after all, but a small bird?

No. It was Mo. She seemed to be having trouble staying airborn for very long. When she came into close range, the reason became obvious. I think she had been garnishing my chocolate a little too freely.

I couldn't help myself. I started to giggle. “I think I'll start calling you Marshmallow.”

Mo snorted. 

I can't wait to hear this story! 

(….to be continued)

 

Monday
Mar052012

Stepping Out

Plié [plee-AY] verb. Bent, bending. A bending of the knee or knees in dancing. 

I'm still enjoying dance. It agrees with my body. In fact, my body is enjoying dancing so much it has decided to practice steps whether I intend to or not. Lately it's the plié. That's when you bend your knees slightly. The movement is supposed to be done gracefully, but that's not always what happens. It would help if my knees would inform my brain when a practice session is about to begin. Instead, they plié without my permission and chaos ensues, at least for the moment.

When something like this happens, I'm never sure what to make of it. Is it just a temporary fad or have my legs decided on a permanent dance career? Whatever it is, I find myself doing a modified traveling waltz step as I go along: down, up, up, down, up, up; plié, step, step, plié, step, step. After a while, it's not too bad. I can get into it.

This, however, caused great consternation among the security personnel at Denver International Airport last week when my daughter, Emma, and I flew to Chicago. When we travel, I bring my walker along. I don't use it all the time, but traveling is stressful. Stress + Parkinson's = Total Klutz Time, or TKT. When I am in TKT mode, a walker is necessary so other travelers are warned to keep their distance.

The trouble, of course, is the security folks have to go over the walker to make sure I'm not sneaking in weapons of mass destruction in the front basket or the tubing. Their first question to me was, “Can you walk for a short distance without your walker?” Of course I can. I do it all the time, but to make them feel better, I walked as close as I could to the actual scanner before giving it up. Then I was on my own for the next 20 feet. No problem.

I walked through the scanner, lifted my arms in the required manner, and walked out, without a hitch. Emma had to go through twice. She has now learned to not wear jackets with sparkly metallic thread. It confuses everything. I gave her my best patient look. She rolled her eyes.

Once out of the scanner, I went to find the plastic bin with my shoes and other belongings. That's when someone behind me dropped their bin on the metal table.

Grand plié.

Not expecting my knees to bend, I grabbed onto the table. Then the security people took notice and asked me if I was okay. I assured them I was fine, then continued on my way, making another grand plié with every step. Security guards were asking me if I was okay, at the same time I was attempting to communicate to my legs that now was not the time to practice dance moves. Though I continued to assure the security guards I was fine and this was normal, I don't think they believed me. Before I knew what was happening, they had gathered up all my belongings and were escorting me to an area labeled, SECURITY – DO NOT ENTER.

After a moment of panic, I realized they were simply giving me an area where I could fumble around as long as I'd like without bumping into anyone else. They were actually quite nice after that. Maybe they felt guilty for taking away my walker, especially now it had been inspected and no weapons of mass destruction had been found. They even called for an electric cart to drive us down to our departure gate.

Once our flight was ready, we were allowed to board first, giving us first dibs on the overhead storage space. This is when I decided I make a good traveling partner. I briefly considered making this into a career; after all, I have always wanted to see the world. I could advertise: Bring me with you on your next trip and go to the head of the line!

Ah, but airplanes aren't as comfortable as they used to be. Instead of the nice wide seats and acres of leg room I remember from 20 years ago, airplanes are now more like air born Greyhound buses, packed like sardines. That first flight was a bumpy one. There were tornadoes somewhere below us wrecking havoc in Illinois. I turned green and wondered if I should dare move just enough to find the barf bag in case I needed it. Fortunately the trip home was nice and smooth.

Regardless of this, we had fun! I enjoy traveling enough to put up with crowded flights, narrow aisles, and little leg room. Though our trip was for medical appointments, and we were only there overnight, we were still able to see a little bit of the city from the elevated train which we took back to Midway Airport. It was incredible and lovely and it felt like we were flying; only we were much more comfortable. Chicago is beautiful when seen from the train. Hopefully we can see it from the ground some day.

I would go again in a heartbeat; which is good because we're going again next month. We have most of our plans made. Emma will have surgery at Shrine Hospital and we will most likely stay at Ronald McDonald House. Chris will come along with me and stay as long as Emma is in the hospital. Then he'll return home and the two of us girls will stay for another week or so.

I just have a little more preparation to do and I'll be completely ready. I want to learn a few different dance steps before we go, something my legs can practice without causing panic attacks in the people around me.

Sashay anyone?

Sashay [să-shā] verb, informal. 1. to walk or proceed in a casual manner 2. to strut or flounce 3. a journey taken for pleasure

Sounds good to me.

 

Sunday
Jan082012

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.

 

Friday
Nov252011

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.

 

Thursday
Oct272011

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.”