Magic

“And above all, watch with glittering eyes the whole world around you

because the greatest secrets

are always hidden in the most unlikely places.

Those who don't believe in magic will never find it.”

Roald Dahl

Thirty-five years ago, I broke up with a boyfriend and decided I wasn't going to have any relationships for at least a couple of years. I was only 20 years old, after all, and had a lot I wanted to do. The next day, I met a quiet, handsome, older man (he was 24) named Chris Reinhart. We'll celebrate our 34th wedding anniversary in May.

I believe in magic love.

Two weeks ago, when we started looking at our house and deciding where to paint, one wall stood out with its ugly, dirty, yellowish color and pencil scribblings. This wall definitely would not be painted. It's our sacred growing wall, telling the stories of our children in graphite lines, scrawled names and dates.

About ten inches from the floor, the name written for the marking is Isabel Gosling, 6/16/02.

Almost even with our daughter, there's another line. The name written by it is familiar to our family. Lisa was our daughter's imaginary friend for years before, “you know how it is, Mom. Sometimes imaginary friend's moms just want them to come back home”. But before Lisa went home, she left her height mark on our growing wall.

I had an imaginary friend when I was younger, too. Her name was Linda. Where do these friends come from? I don't know, but I believe they are real.

I believe in magic friends.

Once, when traveling, I was introduced to a wonderful woman named Bella. She immediately came over and embraced me, then stepped back, looked away for a moment, and chuckled. Turning back to me, she said, “You brought someone with you, in spirit.” I replied, “Yes!” When I returned, I told a friend about this. He looked at me very seriously and said, “It was me”. I smiled, because I knew.

I believe in magic people.

We watched our donkey make friends with a fox and play in our yard together. Later, when the kits were born, the fox and his wife brought them out to meet the donkey. We watched from the window.

I believe in magic animals.

We heard Chris' mother's last words, wrapped them up in our love and sorrow, and gave them to the rest of the family.

I believe in magic moments.

Our paychecks nearly always carried us through from one month to the next. When they didn't, my father would loan me a novel, telling me I had to read it. As we walked out the door, he would grin and say, “don't lose the bookmark”... a $20 bill.

I believe in magic fathers.

Being diagnosed with Parkinson's disease means I can stay at home, write, do art, cook, dance, do yoga, see friends, take classes, and take naps whenever I want to.

I believe in magic gifts even when they come in crazy wrapping.

The puppy only peed in the house once today, my husband danced with me, and our son has a job interview on Friday.

I definitely believe in magic.

 “The world is full of magic things, patiently waiting for our senses to grow sharper.”

 W. B. Yeats

On the town - Terri's first and probably only Society Column

The night I received the invitation to dance at the Dazzle and Delight Gala to benefit the Parkinson's Association of the Rockies, I went to sleep with I Could Have Danced All Night going through my head. What fun! I felt like Cinderella, Eliza Dolittle, and Angelina Ballerina, only older. Not in my wildest dreams would I have ever imagined going to this fancy gala in evening dress and actually dancing on stage in front of people. Not ... in... my ... wildest ... dreams...

The next morning, I awoke with Beatle's songs going through my head. It was a medly of Sure to Fall, Help, and Hold me tight. What had I gotten myself into?

For better or worse, I was committed, and couldn't have refused anyway. How could I say no to having Brandon (Private) Freeman as a dance partner? Private dances with Ballet Nouveau and is one of our Parkinson's dance teachers. It really wouldn't matter what I did on stage, everyone would be watching Private. We practiced a few times and by the night of the Gala, we were ready.

It was worth it! It was worth getting dressed in fancy clothes, worth talking my husband into wearing a nice suit, dress pants, and tie instead of his usual evening wear of sweat pants and t-shirt, and worth wrestling for 20 minutes trying to put on nylons with control top panties. This last one almost did me in. I slid off the bed several times and looked like a contortionist before accomplishing the seemingly impossible task. I blame my Parkinson's.

Our daughter took photos of us and fussed with my hair a little. Then, looking us over, she finally gave her approval, and we left for the Ritz Carlton Hotel in downtown Denver.

It was beyond elegant. We walked in the front doors, greeted by no less than 4 doormen and another man who made sure we knew where we were going. When we arrived on our floor, we checked in and perused the silent auction items while being offered hors d'oeuvres and wine. There were many lovely auction donations; the beautiful water color painting by Carolyn Zeiger was my favorite.

I stopped in the restroom before going into the dining room, you know, to powder my nose and stuff? Wow. Wow. The bathroom was bigger than my last hotel room. They had real cloth towels to dry your hands; tiny ones rolled up and stacked in a basket. There was marble everywhere and even a place to sit by a mirror and... powder your nose. I took a photo.

Cheryl Seifert, director of the Parkinson's Association of the Rockies gave a lovely talk about their work and told us of all the wonderful donors who had contributed to the evening.  We are lucky here in the Denver area.  If you're going to have Parkinson's, Denver is a great place to be.  There is so much support and such a great community. Thank you Cheryl!

The highlight of the evening was when Sue Feingold's son spoke about her experience with Parkinson's disease and how much the Parkinson's Association of the Rockies had helped her and their family. I remember Sue so well from our dance classes. She had a lot of trouble with walking and balance, and very little facial expression. This did not stop her from taking part fully in the class with a delightful sense of humor. The twinkle in her eyes more than made up for any other lack of expression. Sue passed away in May and we will miss her sparkle!

Live auctions are always fun, especially with an auctioneer who is really enjoying himself.  Add to that, a cow walking onstage and a delightful game of heads or tails, and it made for an interesting evening.

The dinner was fabulous. The dance went well, too. At least I can say, I didn't fall and I think I sort of looked like I knew what I was doing. It was about two minutes long and we were accompanied by the wonderful Parkinson's choir, The Tremble Clefs. After the dance, I learned that Private was just as nervous as I was. His boss had accompanied him and so, we had Dawn Faye, co-director of Ballet Nouveau, watching us dance. Dawn is a beautiful woman who reminds me of Audrey Hepburn. She complimented me on my dancing, mentioning my posture, in particular. I blame.. I mean, credit Paul and Carolyn Zeiger, my yoga teachers, for that.

I actually had it easy. If I missed a step or two, no one would have even blinked. I can always blame my Parkinson's.

Death by Parkinson's

Every time I go into see my neurologist, she asks me if I've thought about having DBS surgery. I roll my eyes and let her know my thoughts are the same. It's still brain surgery and I'm not ready for brain surgery. At this, she will remind me of the limitations of my medication and say, “You are young, you know. I'll be treating you for the next forty years.”

I thought about this when I read, once again, an obituary which said the deceased had died of Parkinson's disease. Whenever I read this, I yell out loud to all the people in the newspaper, deceased or not, to inform them, “YOU DON'T DIE OF PARKINSON'S, YOU DIE WITH PARKINSON'S!” This is what I've been told, anyway. What's up? Am I wrong?

Time to go to the experts.

The Parkinson's Disease Foundation says this:

Q: I just found out a friend has PD. I don't want to ask him this question, but what is the long-term prognosis? Is it fatal? (anonymous)

        A: Parkinson's disease is not fatal.

http://www.pdf.org/en/pins_res_center/question/342 (read the entire answer!!)

It's disconcerting, to say the least, to see Parkinson's disease listed as the cause of death. This seems to be a widely held belief. One can even look on the internet and find lists of people who have died of Parkinson's. There's a list of celebrities and a list of politicians. There's even a list of chess players who died of this disease.

Wow.

I wonder if chess players are more at risk for developing Parkinson's?

Admittedly, complications of Parkinson's can cause problems which can shorten one's life. Most of the complications are similar to getting old. If we can't move as much, we're more susceptible to things like pneumonia and heart disease. Choking is a danger. There are undoubtedly other complications, but I'll leave them for now. I don't let myself go down that road very often.

I'm not trying to discount these dangers. I've had the Heimlich maneuver done on me four times. From this, I've learned to not eat meat or salads when my medications are wearing off. I've also learned not to get angry and go on a rant about something or someone while I'm eating meat. That's what happened the first time I choked and it had nothing to do with Parkinson's.

There are many other complications of life which can cause death. Remember what Bilbo says, “It's a dangerous business, Frodo, walking out your front door.” If we go about thinking of all the possible ways our lives can be shortened, we won't go very far at all. And, of course, we know staying home and doing nothing isn't conducive to a long life, either. I don't really think about this much at all, not anymore, and not until I read one more article listing death by Parkinson's.

Out of curiosity, I had a look at one of the websites with its list of PD victims. The site is “The Political Graveyard” and contains many different types of lists. I looked at their list of politicians who died of Parkinson's disease. I was pleased to note how much information is included in each entry, including the exact age of the person in years and days.

I was even more pleased to see the average age of the victims. Most were in their mid to upper 80's. The one in his 60's actually died of a heart attack and had Progressive Supernuclear Palsy, not Parkinson's. Then there is Milward Lee Simpson, from Cody, Wyoming, who died of Parkinson's disease at age 95 years, 210 days. If PD is what took his life, it sure took its time about it!  

I'm going along with my doctor, though not necessarily with her suggestion of brain surgery. I'm going to assume she'll be treating me for the next 40 years. That will make me 94 years, 360 days old... and counting.

I realize, of course, this might not happen. Who knows whether my doctor will still be around in forty years.

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.