Choices, Choices....

May 15, 2008

Years ago, while teaching kindergarten, I caught a couple of the boys eating iris blossoms on the playground. A frantic call was made to the Poison Control Center and I found out that iris blossoms were not on the list of dangerously poisonous plants. I was asked to watch them, however, as there really wasn’t much information listed about the effects of consuming this particular flower. Not many people would consider doing this. In fact, probably the only people who have ever experimented with the wild notion of eating irises would be five year old boys who wanted to make purple spit. I passed that bit of information on to Poison Control and for the next few minutes, I couldn’t make out anything they said. Maybe it was a bad connection.

I thought of this story not long ago when I was prescribed a new medication. Among the side effects was that it “turns all your bodily fluids orange”. COOL! If only I had that medicine all those years ago, I could have been the coolest kindergarten teacher on the planet – the one with orange spit.

My doctor is extremely good at explaining medications and their side effects. This is good because my body tends to be just sensitive enough that if there are side effects, I’ll have them. It’s nice to have at least a little bit of warning. And if they are not explained to me in a healthy way, I tend to freak out. That happened a while back with a (now former) nurse practitioner who prescribed a drug that, when I read the literature, I found had a possible side effect of “falling asleep without warning while doing routine daily activities, such as driving.” As I was then driving 17 miles on the freeway each way to work, I called and talked with the nurse practitioner. She tried to reassure me by saying, “Don’t worry, if it happens once, we’ll take you off of it.” I told her that if it happened once, it probably wouldn’t be an issue. After that, I went through my neurologist whenever I needed to ask about medications.

My neurologist, by the way, is a lovely woman who listens to me and respects me as a person. She is obviously very intelligent, articulate, and I am sure she is one of the top doctors in her field and deserves a raise. If I have DBS brain surgery in the future, she’s the one I will trust. She also reads these articles. Did I mention how intelligent she is?

So, at my last visit, I was prescribed a couple of new medications and my doctor very carefully went over all the side effects with me. “Oh, and it can cause compulsive behaviors, so if you experience anything like that, please let me know and we’ll adjust your dose.” She went on to say that while it sounds humorous, she knew of patients who had spent all of their savings on shopping sprees while on this drug. The compulsive behaviors could include compulsive gambling, shopping, or even sexual behavior. She also said that some people try to direct this compulsiveness into a particular area, such as crafts. They might work on their crafts to the point where they forget to feed their family.

Oh boy.

Of course, if that last one is how this manifests with me, I’m okay. My family wouldn’t notice. I’ve been doing that for years. But it made me wonder. Could I possibly direct compulsive behavior in a way that it would be beneficial for me? What would I choose?

I’m afraid that gambling and shopping are out. We definitely can’t afford that. I will give all my credit cards to my husband and also have him change the passwords on my internet accounts so I cannot click and spend.

Compulsive sexual behavior is also out. That would be way too complicated and way too much work.

My kids would probably prefer that I become a compulsive baker and spend hours every day baking cookies and cakes. The only problem is that compulsive baking would lead to compulsive eating which would ultimately lead to the need for buying bigger clothes which would lead to compulsive shopping which is out already. Sorry kids.

My husband might suggest that I become compulsive about cleaning. This actually sounds good and if I could pull it off, that might be the way to go. I’m not sure that we can direct compulsive behaviors to something that is totally against our nature, but it’s worth a try. If nothing else, I would be busy for months. The thought that someday MY house could be sparkling clean and neat with no piles of papers anywhere and nothing out of place…? I’m sorry. I’m just having a hard time even imagining that one.

Perhaps I’ll try compulsive gardening. It wouldn’t matter how many vegetables we eat and that would save us money in the long run. And I would love to see neat rows of plants with no weeds growing in the pathways. I would also have our lawn and flower beds perfectly manicured. This sounds good. I’ll have to let you know how it goes.

Oh, and we have a large bed of iris that desperately needs attention, too.

Miracle Cures

4/29/08

I was shopping the other day at my favorite natural foods store. We do our best to eat good healthy natural food, of course, all the time. And with the exception of the occasional burger from the fast food restaurant, milkshakes, anything that is chocolate and mmmmm… those jalapeno bites from Arby’s with the red sauce that looks like transmission fluid, I do pretty well. As with everything in life, it is nice to have a balance.

I meandered down one aisle, looking closely at everything and feeling pretty good. I was doing the good mom thing and buying natural organic food. Then I went around a corner and was immediately accosted by an older woman (okay, she was maybe a little bit older than me) offering me samples. Would I like a sample? I asked what the samples were but before she answered, she looked at me closely and asked, “Are you in pain?”

“Uh, no, I’m just moving slowly.”

“But are you in pain?”

Okay, now I figure it’s easier to just explain it right out than to risk any more inquiries. “No, I’m not in pain. I have Parkinson’s disease. I just move slowly.” How could I have known what would happen next?

“Did you know that this is the number one diet supplement for Parkinson’s?” She began. And she went on and on about her product, about which she was obviously very passionate. I learned an awful lot! And after several minutes I was quite ready to believe that it stops pain, cures the common cold, helps hair to grow, makes our bones strong, stops the moodiness of menopause, and helps prevent global warming. She had me hooked. It is fun to listen to anyone who is enthusiastic but a fanatic can be irresistible! It’s very possible that I would have even bought some of her miracle supplement, except for one thing. She was just a little too confident and suggested that I try the sample, walk around the store for ten minutes and then come back to let her know how much better I felt. I had the picture in my mind of the crippled child throwing away his crutches and wondered if I’d rip off my leg braces and dance through the aisles of the store. But no, ten minutes after taking the supplement, I felt no different than I had before. Well, that’s not entirely true. My legs were aching and my speed was approaching that of a geriatric turtle. I was too embarrassed to go back.

Once home, the more reasonable parts of my brain kicked in. How many miracle supplements, remedies, and therapies had I been presented with in the last ten years? I’m actually not knocking them at all. I believe very strongly in natural, wholistic medicine and have often consulted with doctors who practice wholistic medicine. There are so many different products out there that I am more than happy to allow my doctor do the recommending for me. He’s also an M.D. so I know he’ll understand my prescription medicines and how things might interact, too. Letting him be the expert makes less work for me and is ultimately less expensive. As with any medicines, what works for one person doesn’t always work for others. Even at best, it can take time to find what’s right. When we do find something that works well for us, it’s tempting for us to become the fanatical salesperson telling others about our wonderful miracle cure-all.

Here are my magic remedies:

1. Hot baths. I am a firm believer that there is nothing that isn’t helped by a hot bath. If need be, you can even take three or four in a day. The only side effect is wrinkly fingers and toes.

2. Naps. I’m up to two a day. When my body says go to sleep, I say “Sure, why not.”

3. P.G. Wodehouse. Having my husband read passages out of Wodehouse’s novels can be nearly as good as the meds. But it has to be my husband reading them! It’s not just the words, you see. It’s his presentation. As I said before, an enthusiast is fun to listen to, a fanatic is irresistible!

4. Chocolate. This is best when shared with my 14 year old daughter.

5. Late night conversations and scrabble games with my son.

6. Going out to the coffee shop with my good friend. I’m not going to divulge his name. I don’t want him to be suddenly deluged with invitations for coffee. He’s hyper enough as it is. But he makes me laugh and even if I forget to take my meds, I will be symptom free for a couple of hours.

7. Diet pop. I know, those who promote natural healthy foods will say that diet pop is poison. But in reasonable doses and shared with a dear friend, there is therapeutic value.

8. And last but not least, those jalapeno bites from Arby’s. Don’t forget the transmission fluid.

I’ll tell you what. Try one of these remedies. Walk around for ten minutes and then come back and let me know how much better you feel.

Late Bloomer

April 18, 2008

I had a disturbing wake-up call today. I went out to do my gardening. I was determined to get the potatoes planted earlier this year to take as much advantage of our growing season as possible. Over the last two years, gardening has been a wonderful therapy for me. I would go out and pick weeds for an hour or more. Granted, if I did heavier work, like shoveling, raking, cutting up the old branches with the saw and bundling them up, or something like that, I knew that I would be worthless later in the day. But, I figured, I could either do the work and feel useless later in the day or not do the work and feel useless all day. I wasn’t going to stop.

I’m still not going to stop gardening, however, it was disturbing to find that I could only turn over about five shovelfuls of soil before having to sit down and rest. After a few minutes, I forced myself to continue on with the work, leaning on my shovel as I walked over to the potatoes. I finished my work between rest stops and, though it took much more time and effort than it ever had before, I was still pleased that I could do it myself. I’m not so useless after all.

It did make me think of the future, though, something I try not to do too much. If gardening is this much harder today, what will it be like next spring? Damn.

At least I can swear about it now!

Through no fault of my own, I didn’t learn how to swear until much later in life. It’s not that I have anything against swearing, it was just not something I was exposed to while I was growing up and when I was, it was like being exposed to a foreign language. I just didn’t get it.

I am sure that at some point my parents knew how to swear. My father was in the Navy during WWII on a small ship in the North Pacific. Swearing certainly must have been a requirement. My mother grew up on a farm. The youngest of ten children, she had five older brothers. What would the chances be of her NOT hearing the more colorful words in our language? But regardless of this, I don’t think I ever heard a swear word uttered in our house. I certainly didn’t learn to swear at St. Anthony’s Catholic school, where I spent my first five years of elementary school.

This can be a bit of a handicap if you find yourself in a sticky situation. Granted, if you are around small children, corporate business associates, clergy (including Catholic school nuns), your grandmother, or anyone else who might be mortally offended by the slightest off color language, you would be prudent to stick with gosh darn golly gee whiz fiddlesticks, and such. But I am alone in my garden, leaning on my shovel, not a young child in sight. Considering how young we were when we married and started our family, and that I worked in early childhood education for most of my adult life, this is the first time I’ve actually had the freedom to not worry about what I say. And I can tell you, gosh darn golly gee whiz fiddlesticks just doesn’t cut it when I allow myself to look too far into my future.

I let loose with a string of obscenities that would have made my male friends proud.

It is interesting to note that, while being an early childhood education teacher prevented me from using certain language, it’s not as if I didn’t hear it. I think I even learned a few new words from the children. Most of them are very innocent, however, and when a young child came to me on the play yard and tattled that another child had said the “F” word to him, I was suddenly wary. I turned to the child and said, “Which F word did he say?” The child looked at me cautiously and whispered in his quietest voice, “He said shut up.” Mr. Baker, who teaches woodwork to the grade school children, lets the students know that he doesn’t tolerate foul language. And the foulest words, in his opinion, are the words, “I can’t”.

Back in the garden, it was strangely uplifting to be able to get angry and yell, not worrying what I said or who might hear me. The earthworms didn’t seem to mind at all and our rabbits didn’t even blush. One of the foxes turned and looked at me suspiciously but I’m used to that. He does it all the time whether I am swearing or singing. Come to think of it, he really looks at me suspiciously when I sing. I’m not that bad, am I?

I don’t know how things will be for me in a year. The only certainty is that it won’t become easier with time. But I still plan to garden. I’m not going to PLAN on what I will NOT be able to do. It’s inevitable that I will look into the future from time to time. It’s not the wisest thing to do but I know that it’s only natural. At those times, I will need to arm myself with all my life coping skills. Swearing is required.

The only foul words I don’t want to ever use are, “I can’t.”

“I Meant To Do That" and other Life Coping Skills

April 8, 2008

I’ve been quite proud of myself lately. I’m pleased with how I’m handling life and all its ups and downs. I have a good attitude, I tell myself. I don’t wallow in self pity, I try to look at the positives, and I laugh a lot. With family and friends like mine, I truly have no excuse for doing anything else. When life hands me a lemon, I make lemonade and all that stuff. So if I am so good at handling life and all its bumps and bruises, it stands to reason that others might be interested in how I accomplish this monumental task. “How do you stay so positive?” one might ask.

I think the answer is that I love life and everything in it! I try to enjoy every day and accept the bad with the good with grace and good humor. I always have good days. I love everything about this world -except lima beans. And waiting in line at the bank, or… or driving 12 miles to the doctor’s office to find out that they had cancelled my appointment! Geez, I hate that! Man…and then having to drive straight to school and “hang out” till my daughter was ready to come home because there really wasn’t enough time to drive back across town to our house, and not wanting to see anyone on the way because I was just so pissed off that I knew I’d burst into tears if I even looked at someone I knew.

I just had an awful day. Horrible and nasty from start to finish. Okay, well, nobody died and nothing caught on fire. The kids are safe and the sun still rose this morning. AND I DON’T EVEN CARE!! MY DAY WAS AWFUL, DAMMIT!

I handled everything in my usual calm, cheerful way.

After my missed appointment, I drove to the school, determined that I would make the most of the day by working on my wooden spoon in the woodwork room. The teacher is gracious enough to allow me the time and materials to do some simple projects. I think he wants the students to see just how much THEY know in comparison. I think it works. On my way, I stopped to say hello to a friend. I wasn’t really in shape to be seen by normal human beings, but this being a good friend; he didn’t take one look at me and run in the other direction. He calmly listened to my rant about my day and then looked at me suspiciously, “You’re pissed off at someone so you’re going to make a wooden spoon. Not something I’d think of, myself.”

My woodworking was cut short as I realized that I had forgotten to bring my medication and I began to have a Parkinson's moment. My left hand was now curling into my chest, my right side was collapsing on me over and over, and my right arm (with carving knife in hand) thought it would be best to fly upwards each time I collapsed, in a feeble attempt to help me maintain my balance. Knowing that this "moment" would last till I got home and took my meds, I felt it would be safer to put the knife down and quietly back out of the room.

We arrived home finally, and I listened to my phone messages. Our phone doesn’t beep or blink or do any of those annoying things that tell you that there’s a message waiting. And there it was: the message from my doctor that my appointment had been cancelled. They had called promptly at 8:30 am, while I was taking my daughter to school. Now, the only one I could be pissed off with was me. It didn’t help me regain my humor.

I made it through the evening. We had leftovers for dinner and I decided that my daughter would have to deal with her homework on her own. I secluded myself in my workroom and began to sew my books together. After I finished the third book, I started to feel better. At least I had accomplished something in my day. And when the green thread broke before I was finished sewing and I couldn’t find any color besides pink to finish, I told myself, “I meant to do that.”

That’s what the 6 year old boys always say. After spending 18 years teaching kindergarten, I know it’s always the same. They do something totally insane, like climb to the top of the swing set and then jump down. No matter how they land, SOMETHING is going to hurt. With eyes watering and jaw set, they rub their knees, get up slowly, cradle their broken arm, look me in the eye and say, “I meant to do that.” There was something magical about this. Somehow, it made everything okay. This is what they WANTED to do and if something got a little hurt in the process, well, those things happened. Rub the knees, get up, sniffle a bit and run to play. (Unless their arm is really broken.)

Tomorrow I will go back to the doctor for my appointment. And I will remember to check my messages. I will stay away from lima beans and I won’t go to the bank. And if by chance, they cancel my doctor’s appointment and I don’t get the message, I will drive out there, give everyone my greetings and then visit the new thrift store that opened up across the street. And if anyone asks, I’ll just look them in the eye and say, “I meant to do that.”

Bumping into Life

10/10/07

When I was diagnosed with Parkinson’s disease last year, I had to face the fact that my future was uncertain. But, then again, everyone’s future is uncertain. I mean, it is uncharted territory, after all. We haven’t been there, yet. There isn’t anyone who can say with certainty what they will be doing a year from now. We like to think that we have control over our lives but we really don’t have as much control as we think we should. I learned that lesson every time I was pregnant. When it was time for the baby to come, it was going to come whether I was ready or not. I remember when our first son was born. I was so excited to be in labor, I could hardly contain myself! Our first child was about to be born, I was going to be a real mom, and everything was going to be wonderful and we would live happily ever after!

Then the baby came and HE decided when I was going to sleep and when I was going to wake up. He also decided how often I was going to eat. He had preferences, too, about which foods I ate and would respond with several hours of colic if I ate something that he didn’t like. Control over my own life? Hah!

When I found I was in labor with our second son, my thoughts were a bit different. How could I be in labor? This baby wasn’t supposed to come for another THREE WEEKS! I needed those three weeks. I didn’t have anything ready. Couldn’t I go home and come back in a few days? Nope. Sorry. The body has taken over. You no longer have any control over it. And when I finally did get to go home, there were two little beings telling me when I could eat and when I could sleep and otherwise demanding my attention and bossing me around.

I did finally learn how to balance caring for my family and having some time for myself. Occasionally, I even saw my husband when we weren’t just passing each other in the kitchen. He graciously introduced himself to me and reminded me that he was the one who was snoring in bed when I came in at night. By the time our sons were 9 and 11, we must have been able to see each other a little more often because it was just about then that we discovered, to our amazement, that we were expecting another child!

When our daughter was on her way, I thought I was ready for anything. And then she decided to come 12 weeks early. Between hospital stays, doctor’s visits, therapies, and long nights, it took years before I felt that I was even remotely in control of my life. I can’t imagine how she felt. She didn’t even get to boss me around like her brothers did. At least not till she was a little older!

So, maybe what really concerns me about Parkinson’s is that my future isn’t as uncertain as all that. Parkinson’s is progressive and, as much as I am doing to make sure I can be upright as long as possible, there is the possibility that I may one day require much more help in just being able to live day to day. If that happens, I want others to know NOW how I want to be treated. I’m not taking any chances, you see. Though experience has taught me that it’s not very realistic, I still want to feel that I have some control over my life. Will I ever learn?

So…

If I ever need others to take care of me, I want people around me who will allow me to live a normal life.

This means:

· Friends and family who will get me out of the house and into the world, even if I am grumpy about it.

· Friends who will pour me a glass of wine and help me drink it, even if I’m not supposed to have it.

· Friends who will tell me bullshit stories and make me laugh.

· Friends who will make me cry.

· Friends and family who won’t mind if I tell the same stories more than once.

· Gossip. If there is a juicy story, I will want to hear it.

· Adult stories. I don’t ever want to be talked to as a child. Politics, religion - don’t stick with “safe” subjects!! I want to always have an opinion. You can even swear, if you need to.

· Friends who will get mad at me from time to time. And who will take it if I get mad at them.

· Friends who will tell me if I’m out of line.

· I want my friends and family to tell me what is going on in their lives, even if it’s painful. Don’t keep things from me so I don’t worry. You are my family and my friends and I have every right to worry about you.

· Friends and family who will hold my hand or put an arm around my shoulder.

· At least one friend who is not afraid to kiss me on the lips, even if I drool.

· Someone who will sing with me, no matter how I sound.

Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It’s energizing and it keeps the brain working.

I don’t want to be wrapped in cotton wool. Being safe doesn’t mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don’t ever want to be too protected. I want to be able to struggle – physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway?!

I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don’t worry. The marks you see on me?

They’re just love bruises.