Neither Fish, nor Fowl, nor Good Red Herring - the trials and triumphs of having a unique medical diagnosis

A civilized society is one which tolerates eccentricity to the point of doubtful sanity.
~ Robert Frost 

A funny thing happened when we got back from Chicago. The very next day, fresh from two weeks of relaxing at Ronnie's house*, I had an appointment with my study doc, a neurologist specializing in movement disorders. I'm taking part in one of her clinical studies.

This was a major visit and included a thorough neurological evaluation. I tapped my fingers and toes, made circles in the air, walked up and down the hallway, and answered questions in the cognitive part of the test. I am never thrilled when the cognitve section comes up. They have a habit of asking ridiculous questions. I mean, come on, are we really supposed to be able to count backwards from 100, subtracting 7's? When, in life, will I need this skill? Is it important to be able to look at a list of 10 totally random, unconnected words, and then recite them back without looking at the list?

I've never yet failed the test. You're probably expecting me to say, “until now”, but that's not the case. This time, not only did I not fail the test, I ACED it! There could be several explanations for this. Maybe this was an easier version of the test. Maybe I really am intelligent. Maybe I was just calmer than usual.

It's a funny thing with a lot of these neuro muscular disorders. Stress makes everything go haywire and then the meds don't work and I move like one of the monsters in a B horror movie. This effect is talked about a lot. We all know what stress does to us. What isn't talked about is the opposite. What happens if you have an extended time that is completely calm and non-stressful?

I realize this rarely happens to anyone. Maybe this is why no one mentions it. It happened to me. Ronnie's house, despite being there with our daughter, who was recovering from surgery, was surprisingly non-stressful. There were all those nooks and crannies where we could sit and read or watch a movie; and of course, there were desserts everywhere we looked. I couldn't live this way all the time. I'd be terribly bored and terribly overweight. For a couple of weeks, however, it was nice.

So I rested, relaxed, and came back to ace my neuro exam. This prompted my doctor to question my diagnosis. I'm serious. After being diagnosed for over 5 years, suddenly my doctor says maybe I don't have Parkinson's. Now, don't get me wrong. I wasn't cured suddenly. I was just looking better and performing better than I should; especially in the cognitive region. The old grey matter was functioning admirably. What was my doctor thinking? We talked for awhile and I came home and immediately got onto the internet to research something called “Dopamine Responsive Dystonia”.

The other day, I went back to Kaiser and I discussed my research with my regular neurologist, Dr. Lindsee Hudson.  She is great. We often spend at least half the visit laughing at one thing or another. This time was no exception.

“From what I read,” I informed her, “it seems I either have Early Onset Parkinson's Disease with Dystonia that responds well to Dopamine or Late Onset Dopamine Responsive Dystonia with Parkinsonisms.”

“You got that right,” she replied. She went on to say that they are treated the same way. If, and this is a big if, I wanted to, and had an extra $7,000 to get a DATscan done, we might be able to determine exactly what this is.

Okay, I don't have the money to spend on a DATscan, and I'm not sure I would do it, even if I could. Why? Dr. Hudson understood immediately. She had thought of the same reasons before I even brought them up.

1. There is a large community out there for people with Parkinson's disease (PD) with lots of classes and support. There isn't anything like that for people with Dopamine Responsive Dystonia (DRD).

2. In the PD community, I am considered young. In the DRD community, I'm considered ancient. DRD usually hits in childhood, late teens are considered to be old.

3. I definitely have parkinsonisms. One website maintained that late onset DRD was really a sign of early onset PD. I'm not sure there's enough understood about either disorder to know what is what.

4. Even within the community of people with Dystonia, DRD is rare. According to my doctor, I'd be a community of one.

I'll stick with the diagnosis of Parkinson's, but there's something cool about this. I don't fit easily into any category. Not really. I don't follow the typical pattern of Parkinson's and I'm too old to fit nicely into the DRD group.

I'm unique. My husband didn't bat an eye. He said he'd known this for years. My son just said, “Weird”. I thought he meant the whole situation. Seems he meant me.

I don't know what this means for my future, not really. My doctor is optomistic. She says I must have some sort of unique variation. Maybe something in between the two disorders, who knows? She says, whatever it is, it seems to be a good variation. I'm doing better than I should be doing at this point and I don't seem to be effected cognitively at all. I thanked her for not doing a cognitive test that day. Having rushed to get to the appointment and hitting every single red light on the way, I wasn't exactly in my non-stress mode.

In fact, I was feeling a little more like one of those monsters from the old horror movies.

Uniquely weird.

*Ronald McDonald House... We're on first name basis now.

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.

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.

CAFFEINATED!

(With apologies to the late Gene Amole, former columnist for the Rocky Mt. News, and his Idea Fairy.)

The jitters were still affecting me last night after having that cup of coffee at 9:00 am. I know, at 7:30 pm, it should have worn off long ago, but it hadn't, which was why I was still enthusiastic and excited, and why I was looking through business papers and paying bills, planning my next step for the business, and writing with long run-on sentences with lots of commas, regardless of whether they are needed, or not. The only problem was that it was hard to focus; which is why it took me awhile to notice the fairy that was sitting on top of my computer screen, looking down onto my work. I decided to be polite.

Me: Who the hell are you and where did you come from?

Fairy: I'm the Opinion Fairy. I've been watching you for awhile and thought I'd come and tell you what I think of your work.

Me: Isn't that supposed to be Idea Fairy?

Opinion Fairy: That's my cousin. She's nice. Now, are you going to tell me? What are you so excited about?

Me: I made it through the meeting with my vocational/rehab counselor and it went well, in fact, it went even better than I expected, especially as he started by telling me what I hadn't done that I was supposed to be doing, and which papers I hadn't turned in.

O.F.: You're doing it again.

Me: What?

O.F.: Speaking in long run-on sentences.

Me: But I'm excited! Just listen. I blew him away with my promo video and how clear I was with what I wanted to do with my business and how much I had sold already and my connections with wholesalers and authors, and how practical I am.

O.F.: You don't sound practical now. You sound manic. What's going on?

Me: I had a cup of coffee this morning. I said that already.

O.F.: This morning? Come on. I drink coffee every morning and it doesn't do that to me.

Me: But I don't drink coffee.

O.F.: You just said you did.

Me: I was invited over to have coffee with someone this morning and it was, like, coffee. Usually when I go out for coffee, I have tea.

O.F.: It'll take me awhile to work that one out. So, you had coffee this time.

Me: Yeah. She poured a cup of coffee and handed it to me. I thought, “I'm an adult. Adults drink coffee. I can do this.”

O.F.: You've never had coffee before this morning?

Me: Of course I've had coffee! Thirty-two years ago, we went on a road trip through the midwest, in August, and we left at night so we wouldn't have to drive through the heat. I drank a half cup of coffee with lots of milk and sugar in it, just so I could stay awake.

O.F.: Meaning, of course, that there must have been a whole tablespoon of actual Java in there?

Me: Yeah. Something like that. I have weird reactions to things. My family still gives me a hard time for getting tipsy from drinking an O'Doul's. Don't worry about me. I'm okay now. It's starting to wear off. I'm calm. I'm calm.

O.F.: Calm!? You're like a chipmonk that's just gotten off a roller coaster, a hummingbird on speed, a person with Parkinson' disease who's forgotten her medication.

Me: Okay, now that's getting personal. I'll have you know I've taken all my meds today.

O.F.: If this is calm, what were you like earlier?

Me: Well, when I got home from my visit, my husband had to take me for a walk.

O.F.: A walk is good.

Me: Yeah, except I was walking backwards...

O.F.: Backwards...?

Me: ...and sideways.

The Opinion Fairy raised one eyebrow. She wasn't going to comment on that one. I was impressed. I've always wanted to be able to raise just one eyebrow.

O.F.: I'm glad you made it through. Now, can we get on with your writing? It's just that, I've got another gig tonight and I shouldn't be late.

Me: Someone more important than me, I suppose.

O.F.: That's classified information; and don't feel sorry for yourself. Now, I see you've got several ideas for articles written down there.

Me: Leave it to me to get an Opinion Fairy. Okay, I've narrowed it down to three – “choosing the right kind of pillow”, “the benefits of an afternoon nap”, or “sleep-a-thon raises money for Parkinson's research”.

O.F.: Sounds like you need another cup of coffee. I'll tell you what. There's another idea here that's worth exploring. “The benefits of low dose medical marijuana for Parkinson's patients”. I'm sure a lot of people would be interested in that.

Me: That's a good idea. Of course, that means I'll be coming out of the closet and admitting that I use it. There's still a stigma to that, you know, even if you just use it now and then. People don't realize that you don't have to get high or stoned. If used as a medicine, it's a medicine.

O.F.: Yeah, and it controls your startle reflex, takes the edge off your dystonia, and can knock out a migraine. People just need to be educated about it, you know that. It even has fewer side effects of any other drug you take for your Parkinson's.

Me: Including coffee. You have been watching me, haven't you?! I suppose you'll want to get credit for the idea?

O.F.: No, no. You'd better leave me out of it.

Me: Why? You don't trust my writing?

O.F.: Well, it's just that, if you tell people that a fairy helped you to write an article about medical marijuana, they might not take you seriously. At least, that's my opinion.

I sighed and admitted that she was probably right.