Ikea Overload

We needed a new light fixture for our kitchen and had tried most of the stores in our area without finding what we wanted or could afford. Then we looked at the Ikea store website. Good selection, affordable, this looked like our best bet. We had heard a lot about this store and there was certainly a lot of excitement when it opened in Centennial, south of Denver.

I suggested we pack a lunch, some blankets, a flashlight, and a tent. I told the kids they would most likely be on their own for dinner. We also brought my mobility scooter, which was good. Walking continues to be my most challenging activity. For those of you who shop at Ikea often, you know how much walking is required. It was our first time. We had no idea what we were getting ourselves into. Chris drove. I told him where to go.

Twenty-two miles down the highway and around numerous twisting roads, we finally pulled into the huge parking garage belonging to Ikea.

Twenty feet inside the door, my remaining dopamine producing cells (DPC's) went on strike. They do this sometimes, usually when I need them the most. This time I was ready. I took some Sinemet. Though this medication usually slips in unnoticed and gets the work done, today it was no go. The DPC's were patrolling and the Sinemet was caught picking the lock. Today the DPC's were in no mood to allow a SCAB across the picket lines. 

Unfortunately, as most of us with Parkinson's know, there are times when the meds don't work. It's anyone's guess why this happens. Stress? Fatigue? Stores the size of small towns? DPC's are fickle, especially when there aren't enough of them. They decide when to work and when to tell me to take a hike – or not.

I was in trouble. I knew if I stayed on course, I was on my own. The tightness in my chest was not going to go away, my eyes would steadfastly refuse to blink, and I was at risk for falling asleep in the middle of the store. However, I did not come 22 miles to be thwarted by my own substantia nigra. After all, I had my husband AND my scooter with me.

All things considered, we did well. Having come for just one item, we made it out with less than ten. We found a nice light fixture for our kitchen, another light for over the sink, toilet brushes, a ceramic pot for Chris' Norfolk pine tree, and at least one more thing I can't remember. It took about three days to get from one end of the store to the other. Had I not brought the scooter, we'd still be there.

I think I need to go back. We forgot the light bulbs... and there was this cute little kitchen greenhouse, and candles, vases, pictures...

Better pack a lunch.

Worn Out - Coping with Fatigue

I am not relaxed. I'm beat. I'm exhausted. I'm flat worn out. I'm bushed, buggered, and running on fumes. My bones are weary and my muscles have gone... whatever the opposite of wibbly-wobbly is. The least unexpected noise propels me across the room. It's happened several times tonight. My son sneezed and, wham, I flew into the kitchen counter. My husband closed the cabinet door and, bam, I was suddenly holding myself up by my elbows on the dishwasher. In my case, saying I am relaxed would not be thinking positively, it would be denial.

It's not bad. I got out of cooking dinner and washing dishes.

Before I started having symptoms of Parkinson's, I remember reading about neuromuscular disorders in a medical book. There, right in the book, it talked about fatigue being a major challenge with any of these disorders. Ah, to be so naïve again! I assumed it meant the kind of cozy tired feeling you get after a busy day and not the heavy, aching feeling like when you have the flu and step out into traffic just as a steam roller is coming across your path. My other friends with Parkinson's and MS understand this well. A few others do, too, such as new parents, and teachers after the first week of school.

My docs gave me a drug (provigil) so I wouldn't get that feeling. As often happens, the drug didn't like me and I went off of it, figuring a couple cups of black tea in the morning would work almost as well. In the afternoon, I'd just take naps. Most of the time, this works just fine. Every now and then, when I least expect it, it doesn't. Oddly enough, it's when I am feeling exceptionally positive, that's when I will crash. When I'm feeling positive, I tend to do a lot. Unfortunately, it's hard to tell when doing is going to cross the line into overdoing.

I'm about to explore what might be a more wholistic way of dealing with this fatigue. The University of Colorado Health Sciences Center is conducting an acupuncture study for people with Parkinson's disease. The study is focused mainly on relieving fatigue. I just emailed the study coordinator for more information. I don't know yet whether I will qualify. The only part I'm concerned about is it's a blind study. Some participants will get placebo acupuncture. 

If I am accepted, and can come to terms with the phrase, placebo acupuncture, I'll report on what happens. In the meantime, I've had a chance to sit for awhile, rest, and have a little Bailey's.

I'm starting to feel … relaxed!

Update on Tuesday, August 7, 2012 at 9:26PM by Terri Reinhart

Honesty is the best policy, especially if what I say is in print for all to read and say, "Right, Terri. You didn't really do this, did you."  I'll admit it.  I did not follow through with the accupuncture study.  Somehow, I just couldn't get past the possibility of "placebo accupuncture".  On to plan B....

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.”