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

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.

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.

If I was a car, my husband would have traded me in by now

Today is the official last day of the year. Everything, even the planet, is a year older. Time is taking its toll on our household. During 2012, our washing machine went out on us twice, our dishwasher gave up completely, everything needs to be painted, and my doctor tells me I need my electrical works rewired.

If I was a car, my husband would have traded me in by now. Let's face it, would anyone keep a car around if the shock absorbers were shot, the heating and air conditioning came on by themselves, often getting mixed up as to which was which, and the transmission had gone haywire? It's not as if we get rid of cars when the ashtrays get dirty, but there comes a point.

Our old Toyota had a sticky valve in the carburator. When it stalled, I immediately turned on the hazard lights and popped open the hood. Our son, John (age 10), got out, took off the air cleaner and stuck a pencil into the valve to keep it open while I restarted the car. Then he put everything together and jumped back in. We kept that car going like that for a long, long time.

Another old Toyota had problems with the ignition. If we took the key out, we had no assurance we could get it back in and turn it. We had the same problem with the door lock. No problem. We simply drove the car and left it unlocked with the key in the ignition where ever we went. Either we got lucky, or it was actually stolen many times, driven around the block and returned.

Our Ford van had a lot of miles on it, but we still kept it – until the transmission went out. At first, I would put it in first gear and rev up the engine for several seconds before suddenly it would kick in and jerk forward. Gradually it gave up and refused to go anywhere. By that time, it had over 200,000 miles.

And me? I have to warm up my engine a lot longer these days. It takes at least a couple cups of tea with caffeine. Of course, there's always the chance of flooding the engine. Then we're delayed while I make several trips to the bathroom. Once my engine is running, I try putting myself in gear; however, the transmission is faulty and I often end up going backwards or sideways.

I tend to veer toward the right, which ordinarily means the tires need to be rotated. As I don't have tires, I just keep veering. I think it's my electrical system. At least my mechanic, I mean my doctor says so. She has decided it would be best to get a system in place so I could be hotwired. This would be the DBS or “Drive Better with Science” system. It is run by the “Darn Battery System” which would be implanted in my chest, turning it into a “Durable Boxy Square” 3^rd breast.

The fact that the real name is “Deep Brain Stimulation” doesn't help me in the heebie jeebie department. That I've talked to many people who've had this done and speak very highly of it, doesn't really help, either. I'm not ready to do the complete overhaul. For now, I'll make do with the jalopy veering and stalling and crashing.

The crashing has been happening a lot more lately. I won't make any comments on my exterior shape, except it would be worse if I hadn't added larger bumpers in recent years. I admit, from time to time, I worry a little. It's a pain to put up with a beat up old car. Will my husband continue to put up with a beat up old wife?

Not to worry, he says. I'm an old classic and he's sentimental about old classics.

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.