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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Category: coping

Learning How to Grow Older

Terri Reinhart

As I watch my parents get older, there are so many things I think about. In fact, there are so many things, I have to keep lists. Most of this is purely practical: the paperwork I need to get done so they can move to their assisted living apartment, what they will need to bring with them, what are all those things they can't take with them and what will be do with them. That's a long enough list to last a few months right there. 

For better or for worse, we can't be only practical when it comes to our parents aging. There's a whole range of emotions and memories, as well. There's also some dirty laundry to deal with, even if it's just in my own mind, and it has to be sorted, cleaned, and hung out on the line to dry. 

It's also made me look at how I want to be as I get older. Do we have a choice?

It's debatable how much of our health is due to our lifestyle choices and how much is due to luck, karma, and good genes. Eating healthy and exercising is good, but then my grandmother ate lots of rich desserts and she lived to be 97.  My choice, my ideal, would be to live a full life and be able to say at the end, as my mother-in-law did, "It's been fun, hasn't it!"

What I've learned this summer is I don't ever want to resent being a year older. I'm not going to buy into the youth obsessed culture. I don't want to pretend I'm still 35. I'm not. I don't want to dye my hair or hesitate when someone asks my age. Why would I? Being 57 is cool! Each time in our life is unique and I'm enjoying my life right now.

Don't tell me I'm 57 years young. We wouldn't tell a child he is 10 years young. I'm getting older, not younger. All of me is getting older. I don't have the physical body of a teenager or young adult and, thankfully, I don't have the mind of a teenager, either. I wouldn't want it. A lot of work goes into learning and developing as an adult, and the work never stops. 

I don't want to fear getting older. I don't even want to fear getting very old. Many people don't make it that far. I'm not afraid of nursing homes. I worked in one. There's also the example of our former neighbor who, at the age of 92, met a lovely old lady in the nursing home where they both lived. They spent their days holding hands and talking to each other. No one else understood what they were saying, but they enjoyed every moment. I'd like that. If the other person was my husband getting very old with me, it would be even cooler.

The only thing that scares me about dementia and Alzheimer's is the possibility of becoming mean to people I care about. Even then, I know it's a phase which sometimes, but not always, accompanies these diseases and inevitably will disappear in the fog of memory loss. The memory loss doesn't worry me nearly as much. The heart often remembers, even if the brain doesn't. At least I believe this is true.

Ah, if I wasn't in the middle of taking care of my elderly parents, I wouldn't be spending time thinking of what it would be like to turn 85 or 90 years old. I've still got a long ways to go and I'm far too busy being 57 and spending time with my favorite 60 year old, 33 year old, 32 year old, 30 year old, 21 year old, 4 year old, 3 year old, and 1 year old.... not to mention my 85 and 90 year old parents.... and all those friends in between... to dwell on.. well, anything at the moment. 

So I'll just leave you with a few good quotes from some amazing women:

Aging is not lost youth, but a new stage of opportunity and strength.
— Betty Friedan
At 20, we worry what others think of us. At 40, we don’t care what they think of us. At 60, we discover they haven’t been thinking of us at all.
— Ann Landers
The great thing about getting older is you don’t lose all the other ages you’ve been.
— Madeleine L'Engle
I’m a person who gets better with practice. Getting older is awesome because you get more practice.
— Zooey Deschanel

                                                                                                        


Canes, Trains, and No Automobiles

Terri Reinhart

I've known it for a long time.  Someday, someone would be telling me to give up my car keys.  I just didn't expect it this soon.  I also didn't expect the news to come from our mechanic.  As bad as this sounds, I'm really lucky.  I wasn't asked to give up my license, just this particular car.  The first mechanic's verdict was, "How attached are you to this vehicle?"  The second mechanic described our car with a string of obscenities.  

Fortunately, we still have Chris' truck and selling the old car for junk helped offset the cost of getting the truck in good repair.  We are now a one pick-up truck family.  I'm opting for a bus pass.

I've been riding the bus all year to go to my classes at the University downtown, and I've really enjoyed it.  The drivers with RTD bus service in Denver have been incredibly friendly and helpful, even when I ride my mobility scooter onto the bus and take up 4 places while paying only half the fare.  I was surprised at first.  Are the drivers always this nice?  So far!

What's great about riding the bus, besides not having to look for a parking space on campus, is how incredibly independent I feel as I get off at 16th street mall, downtown.  Especially if I have my scooter, I feel I can go anywhere and do anything.  On campus, it's nice to be able to go faster than the students who are walking.  I haven't run anyone down yet, but I have had a couple of students get out of my way, quickly.  I know they were just being polite.

Lately, I've been using my walker instead, as my scooter needs new batteries.  Those will have to wait awhile.  Until then, I have to admit, the walker is a huge help.  It wasn't easy convincing myself to use it and sometimes I manage to fool myself into thinking I don't need it.  I tried using a cane when I first had trouble walking.  Canes are cooler than walkers.  I have several.   The purple flowered cane works the best, but the ones I really like are the carved ebony canes, one from Sudan and one from Juba. Unfortunately, a cane will often trip me up.  

It's those pliés.  My legs still seem to think it's a good idea to practice dancing at odd times.  Nothing I say will convince them to at least inform me when they decide to do this, so the walker is a good idea.  My only challenge with the walker is in the classroom building.  With nice smooooth tile floors and long hallways, it's oh, so tempting to run a little and jump on for a ride.  

This is not tempting on the sidewalk, especially in the older neighborhoods.  Those sidewalks are not designed with older people in mind, especially those older people whose bladders don't like to be jarred suddenly.  

Back on the bus, I am treated as a very important passenger.  I get to ride the lift up the steps and I can sit up front.  If I have the scooter and another scooter or wheelchair rider is there, we spend the whole ride comparing our vehicles as though they were a couple of sport's cars.  We've immediately become comrades.  My regular bus drivers know me by now and they know where I get off.  

I haven't ridden the light rail in Denver yet, but I took my scooter to Chicago last fall.  Frontier Airlines staff were exceptionally nice and I was able to ride all the way to the gate.  Once in Chicago, we took the buses and trains.  I love the trains in Chicago.  They are rather old, though.  Riding with the scooter meant letting the station attendant know I'd need a ramp.  He or she would go get it, a heavy metal platform, and, when the train arrived, would place it down so I could board safely.  Then the attendant would phone ahead to where I was to get off and alert the attendant there to be ready with the ramp.  

At this point, I still have my driver's license and I can still drive.  When the time comes for me to give up driving completely, I want to smile and say, "Sure!", because I know I won't be giving up my independence.  

In fact, as soon as I have new scooter batteries, I won't miss the car at all.

Denver from the Auraria Campus

Denver from the Auraria Campus

Of Goals and Resolutions

Terri Reinhart

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

Terri Reinhart

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.

 

Regular Exercise and Parkinson's

Terri Reinhart

When I told the parents in my kindergarten class that I would not return to teach the following year because I had been diagnosed with Parkinson’s disease, I felt compelled to let them know that there were some positive aspects of this diagnosis.

 

These included:

 

1. Now I have something to blame things on. Every time I am a little spacey, uncoordinated, forgetful, or downright weird, I can just blame it on the Parkinson’s. It’s not me.

 

2. Now I have something in common with Michael J. Fox.

             and.....

 

3. No one will ever, ever expect me to run a marathon.

 

There were other reasons, too, why I looked at this diagnosis as being very positive. For one thing, my doctor had not been sure at first that this was Parkinson’s. Leave it to me to be just a little bit different and more complicated. I try hard. I went through several neurological evaluations and the doctor talked with me about a number of possibilities, including Huntington’s and a strange disorder which she referred to as “Wild Frenchman from Maine Syndrome”.

 

I almost wished I would be diagnosed with that last one. I think I would have had a different reaction when I told my family and friends. Tell others that you have Parkinson’s and the response is usually the same. “Oh, I’m so sorry.” This comes with a pat on the arm and a sad smile. Not that I minded, it’s just that I didn’t really know what to do with that. But just think of what would have happened if I'd told my family and friends that I was diagnosed with “Wild Frenchman from Maine Syndrome”. They'd be too busy laughing to feel sorry for me.  That I could handle. 

 

The possibility of Huntington’s was not something I wanted to contemplate.

 

When the doctor finally told me that she was 95% sure that I had idiopathic Parkinson’s disease, she had a big smile on her face and said, “Let’s hope it’s that!” We practically danced out of the room.

 

The reason that the doctor was so thrilled was because Parkinson’s is the most treatable of the neuromuscular disorders. The medications are impressive in how quickly they can make you feel like a normal person. And now, many researchers are saying that exercise can be one of the best treatments for Parkinson's, perhaps even better and more effective than medications and even surgery for keeping you moving. Walking, biking, dancing, and yes, even running marathons are considered to be GOOD for you.

 

Provided, of course, that you actually do it.

 

I was involved in an exercise study for 16 months. During this time, I rode my exercise bicycle for 30 to 40 minutes every day. I was stretching and even did some exercises with weights. And I recorded every exercise session. Once a month, along with the other members of our group, I met with the physical therapist who made sure we sticking to the program. We had to show our exercise logs to the therapist. I did well! Then the study was suddenly over.

 

It’s been about six months now since it ended and I have not exercised regularly since then. When I recently had to check in with the rehab doctor, I was gently scolded and urged to begin exercising again. Actually, when I think about it, she wasn’t really that gentle about it. She wanted to know what my barriers to exercising were. I said it was time. Life gets busy and it’s hard to have time to exercise.

 

Make the time, she said.

 

I had just about caved in and decided that I would have no other choice than to get on the bicycle again when something remarkable happened. A friend of mine told me about another exercise study that had taken place. This one showed, amazingly, that doing craft work, SUCH AS KNITTING, had the same health benefits as aerobic exercising! Wow. If this is the case, and I have no reason in the world to doubt this person (not to mention the fact that I have no desire to doubt her), then I can tell my doctor that I am exercising regularly. In fact, I am exercising about two hours per day!

 

Now, I know there will be a few people who will just have to go on the internet to see if this is really true. If you find out, let me know.  However, even if there are those who refute this information, I’m sure it’s just a matter of needing more research. For this, I’d be happy to be a guinea pig.

 

I’ve got plenty of knitting to do.

New Year's Resolution - busted already

Terri Reinhart

I blew it already. I had such high hopes of keeping this year’s resolution ALL year, without slipping. These resolutions are important. We really should be good role models for our children, shouldn’t we? And, of course, I foolishly thought that this would be an easy resolution to keep. I am finding that the art and skill of dawdling is taking a lot more attention than I had imagined.

 

Sadly to say, I found myself multi-tasking yesterday. I was riding my exercise bicycle, watching a movie, and knitting at the same time. Lounging in the dentist’s chair later in the day, I also had my knitting on my lap and managed to get about 10 rows done while the dentist did whatever he was doing in my mouth. When it came time to make dinner in the evening, there I was, making out my to-do list for the next day, scheduling an appointment over the phone, stirring the rice, adding broth to the chicken, and, naturally, I had my knitting on my lap, too. My mind was racing. What will I donate to our school auction? How on earth am I going to get all my sewing done on time? Did I just put cinnamon on the chicken?

 

What I can’t figure out, is why some people seem to think that multi-tasking is a good thing. They even brag about their ability to multi-task as though this is the absolute proof of their superior intelligence.

 

Who even invented that word? What does is really mean? I suspect that it means something like, “doing many things badly at the same time.” Moms everywhere, and dads, have a great deal of experience in doing many things at once, though not by choice. Some of us even become relatively good at it. I remember the days when my children were young and I would be holding a baby in one arm, nursing, and buttering toast with the other hand, all the while I was watching my toddler and trying to discourage him from climbing into the dishwasher. I could do almost anything one handed, even break eggs. Sure, I had to pull all the little bits of shell out afterwards, but hey, I could do it!

 

I also remember the day when I was so proud of everything I had accomplished. Two little ones, clean and fed and playing happily on the kitchen floor while I worked to clean up the kitchen and prepare dinner. I busily went back and forth between stirring the sauce on the stove, wiping down the counters, cutting up vegetables for a salad, and singing along with the latest children’s music playing on our old stereo. It was the perfect picture of domestic life.

 

Then the phone rang and someone knocked on the door at the same time. I quickly answered the phone and asked the person on the other end to hold on a moment. I answered the door to a neighbor wanting to borrow a couple of eggs. I invited her in and picked up the phone again, stirring the sauce slightly and turning on the oven to heat it up.

 

I had just turned down the opportunity to have a family portrait taken and receive a free 8 x 10 glossy photo, when my neighbor yelped and grabbed my sleeve. Smoke was pouring out from underneath the stove and little flames were beginning to appear. What the.....????

 

I dropped the phone and opened the broiler drawer that was underneath the stove and found that my son had decided that this drawer made a perfect bed for his stuffed bear. As soon as I had turned on the oven, we had fried bear. Fortunately, there was just a tiny corner of the bear that was actually flaming and I was able to pick it up with tongs and put it in the sink, turn on the water, and douse the flames quickly. By then, I could smell the sauce burning, the kids had managed to knock over the cutting board, and the vegetables were scattered on the floor. I could hear someone on the phone loudly shouting HELLO?! My neighbor had taken her eggs and run. I briefly considered returning the bear to the broiler and serving it for dinner.

 

I looked forward to the day when the kids would be old enough that I could go back to work. My goal was to have a job that didn’t require doing more than one thing at a time. So, what did I do? I taught kindergarten. But at the very least, I did have a 45 minute break every day.

 

Now that I am retired, I am determined to take life more slowly. A couple of years ago, my oldest son gave me a wonderful book, titled, In Praise of Slowness, Challenging the Cult of Speed, by Carl Honore, which describes the origins, intent, and benefits of the “slow movement”. It talks about how our culture has become dependent on clocks, how we schedule our lives and try to fit in as much as possible. Even our children’s play time is scheduled into “play dates” and we hurry to get them from play to music lessons to school to dinner to bed. It also tells how we can change this attitude towards life and time. I like the idea of a slow movement. What could be better? In the spirit of the book, I began reading, and two years later, I’m still on chapter two.

 

One of my favorite bits in the book, so far, is when the author talks with a Buddhist teacher about these subjects of time, living by the clock, and scheduling our lives. Nearing the end of their conversation, the Buddhist teacher suddenly looks at his watch and, very sheepishly excuses himself. He had an appointment to keep and would have to hurry to get there.

 

Like I said, dawdling takes much more attention than I realized. Going slow is an attitude change, even when life throws everything at you at once. It’s about having a balance, I suppose. I only know that if I’m not careful, I’m going to start multi-tasking again.

 

And that would never do.

 

New Year's Resolution

Terri Reinhart

dawdle \dȯ-dəl\ verb

 

I have finally, after much thought, decided what my New Year’s resolution will be. I know, I know...it’s already past the middle of January and resolutions are supposed to be made on the first, right? But, really, there’s no sense in hurrying this, you know. A New Year’s resolution needs to be chosen very carefully. It should be practical enough that you will have some motivation for keeping it and yet also show that you are one of those people who strive to take life seriously and make the world a better place just because you are serious about it.

 

My New Year’s resolution is to dawdle.

 

The word, “dawdle”, has several meanings in the dictionary, but the one I like the best is: “to take one’s time, proceed slowly, linger”. I like this and I take it very seriously. Taking one’s time is important. I know that our society seems to think that faster is better and multitasking is an important job skill, but I suspect there are jobs that would benefit from taking one’s time and proceeding slowly. Jobs like Secretary of State, Brain Surgeon, and the Mechanic who works on the big city trucks and snowplows are a few that come to mind immediately.

 

This definition is, of course, different from the other definition of dawdling, which is: "that which my daughter does every morning before school."

 

I can think of no better time to “proceed slowly” than when one is considering the possibility of having brain surgery. That was my conclusion, anyway, after some months of evaluations, tests, and fretting over whether or not this would be the best thing for me to do. My husband and I weighed the possible benefits against the possible side effects. We spoke to the surgeon, watched the information video, and did our own research. I spoke to a number of people who had already had the surgery as well as people who are on the waiting list.

 

Everyone I talked to who has had the Deep Brain Stimulation surgery, without exception, has said that it was very positive and they are glad they had it done. Any hurdles they had to go through were definitely worth the time and effort it took to get over them. Every one of these people said that their lives were better now than before the surgery. So why am I dawdling?

 

There are a number of reasons.

 

I should probably wait till I am through menopause.  Having surgery done now could confuse things.  If I start acting a little weird, no one will know what to blame it on.

 

But the biggest reason is that I still get along well, most of the time. I can take care of myself. I can walk, get up and down stairs, in and out of the car, and drive by myself. I can still type, write, and bore my family with stories. I can talk, sing, and shout at my kids. I am not depressed or anxious about my future.

 

When one person at a support group meeting, with the best of intentions, told me that I needed to have a more positive attitude and look at the glass as half full, I was a bit bewildered. I can’t honestly describe my glass as being half full. It isn’t. But it's not half empty, either.  It’s overflowing! I have said it over and over. My life today, despite my Parkinson’s, and perhaps even to some degree because of my Parkinson’s, has never been better. I feel happier and healthier than I have ever felt before.

 

Why mess with that?!

 

So I’ll wait. My kids are glad because they have just gotten used to the daily comedy routine of watching mom flailing with knives in the kitchen, walking backwards while swearing, and occasionally falling to the floor. My husband is glad to not have to worry about the possible risks connected with having any sort of brain surgery. My friends are glad because they won’t have to listen to me fretting over this decision, at least for now.

 

And I’ll keep my resolution. I’ll find as many ways as I can to take my time. I’ll go slowly with my housework and try to honestly enjoy it. I’ll savor my art projects and not give myself unrealistic deadlines. And I’ll linger with my friends and take time to enjoy each of them as well.

 

This is serious business.

 

“When you do finally get time to yourself – dawdle!”

~advice given to me in 1998 by an expert mom.