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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.

Fairly Earned

Terri Reinhart

One day when my oldest child was 9, he started going through my hair, one strand at a time.  I informed the young simian that I was showered and clean, and the likelihood of finding fleas was slim.  He’d just have to have cereal for breakfast like his brother.  He persisted, however, and soon gave a shout of glee.  I felt a little sting and he held up his treasure:  one grey hair that he had pulled out from my head.  I grumbled at this, letting him know that all my grey hairs had been fairly earned and I intended to keep every one of them.  He should understand as he had helped me earn most of them.  

We earn our first grey hairs just by becoming parents.  Overnight, we are suddenly responsible for another human being, one who is tiny and vulnerable.  The future becomes much more real to us as we see our little ones grow, almost as we watch. 

There were some times, however, that I found it was better not to watch.

My children were tree climbers.  Our old cherry tree wasn’t a challenge so they would, more often, climb the oak trees in the park.  I didn’t think about it until one day, my oldest son called to me from what sounded like far, far away.  I looked around and didn’t see him.  Then he called again and I looked up.  There, near the top of what had to be the tallest tree I’ve ever seen in my life, was my son, swaying in the wind just a little, as he hung on to the branches. 

My son was proud of what he had done and wanted me to fully appreciate his accomplishment.  That I did.  I looked up, fighting vertigo that I had never experienced before, and let him know that he had gone as high as he could go.  Now, if he would please come down, it was time for lunch.  For a growing boy, food was even more enticing than the oak tree.  I watched as he came down, branch by branch, occasionally slipping for an instant before his foot caught hold.  Though I had been an avid tree climber as a child, from that moment on, I was afraid of heights.  This was the same day my son found and plucked one of my grey hairs.

It was true then, what my dad said when I asked him how parents know when it’s okay to let children go just a little bit farther by themselves.  He responded with a twinkle in his eye, “One day, you’ll find they’ve gone farther than you knew.”  He was right.  Not long after this, my sons came home from a bicycle ride and announced proudly that they had ridden all the way to the next town!  I shuddered, thinking of all the busy streets they had crossed, but with amazing self restraint, I managed to smile at them and just say, “That’s great!”  Then my mom stuff kicked in and I added, “You were careful, weren’t you?”  This elicited the required groans.

I’m a “be careful” mom.  It has never mattered how old the kids are, when they go out I have to tell them to be careful.  They are gracious about this, sometimes even taking time to thank me and let me know how reckless they would have been, had I not thought to give them this reminder. 

It’s their turn now.  My oldest son has a child of his own and it’s time for him to earn his first grey hairs.  I enjoy keeping track of his progress in this area.  I think it’s one of my duties as a grandma.  I take those duties seriously. 

I also take my other duties seriously.  I’m part of the “sandwich generation”, which means that between babysitting for our grandson and sitting with my parents, I rarely have time to eat more than just a sandwich.  I’ve also become the “be careful” daughter.  I have told my 85 year old dad, who was recently diagnosed with Parkinson's disease, when he needs to do big jobs, like climbing on to the roof to secure the swamp cooler for the winter, he is to call me and I will send my husband and sons to help.  When I said this, my dad smiled sweetly and promised to call. 

He also had a twinkle in his eye.  This means, of course, that the next time I called; he told me proudly that he got the ladder out the other day and climbed on to the roof to secure the swamp cooler for the winter.  With amazing self restraint, I managed to smile and say, “That’s great!”  Then my daughter stuff kicked in and I added, “You were careful, weren’t you?”

In a few years, my grandson will undoubtedly go through my hair and, after searching for awhile, he’ll give a shout of glee.  I’ll feel a little sting and learn that he’s just pulled out one of my last remaining strands of brown hair. 

Since it’s my grandson, I probably won’t even grumble.       

 



No Sugar Challenge - Final

Terri Reinhart

It’s taken me awhile to write this because our lives have been somewhat eventful for the last few weeks.  My thirty day no sugar challenge ended on February 6th.  I made it through easily.  It was no problem at all to stay away from sugar for that long.  I didn’t really even notice when the time was up and I continued to have peanut butter crackers or tamari roasted almonds for a midday snack instead of a handful of cookies.  Dessert time was no problem, either.  A nice juicy pear or a slice of cantaloupe was enough.  I was determined to stay away from sugar altogether, except for the occasional treat on Sundays, holidays, birthdays, or our favorite Saint’s day. 

Then our life became interesting. 

Whenever I’ve had to go to the hospital, I’ve given my husband enough warning that he can usually drive me there himself.  The one time I went in an ambulance, I was the one to call him and tell him not to worry.  Of course, what I actually told him was something like:  “I was in a car accident I’m fine it was my fault I didn’t see the other car stalled on the highway the police are coming and the highway workers are directing traffic they loaned me their phone I’m fine I’m standing in the middle of the highway my neck hurts I’m worried about the other people I’m fine I have to go the ambulance is coming please come to the hospital to pick me up no I don’t know which hospital just come don’t worry I’m fine.” 

See how considerate I am?

When Chris goes to the hospital, I follow an ambulance and he usually doesn’t know anything about it till he gets to the emergency room.  He doesn’t even give a thought to calling and warning me.  This time, I got the call from our son, Patrick.  Papa was on his way to the hospital after having a seizure.  Patrick actually called twice.  The first call came as I was standing in the tree pose in our yoga class, so I ignored it, embarrassed because I had forgotten to turn off my cell phone.  The second time the phone rang I left the group and answered it.  No one ever calls my cell phone just to chat.

Emergency rooms are funny places.  Despite the attention given to privacy laws, it is impossible not to hear what is going on around you in the ER.  We waited for the doctor to come then waited for a CT scan and then waited some more.  The lady in the exam area next to us was moaning and yelling for medication.  Another patient was singing, and yet another one was handcuffed and led down the hall by a nurse and a police officer.  I hadn’t eaten since breakfast and they wouldn’t allow Chris to eat until his tests came back okay.  We were hungry, tired, and a little grumpy.

Fortunately, everything did come back okay, except for the x-ray of Chris’ shoulder which showed a fracture of his collarbone.  They put a sling on his arm, told him not to drive, and we were sent home in time for a late dinner.  By then we were both ravenous and could have eaten just about anything.  Our wonderful neighbors brought us a chicken dinner complete with salad and cake.  It was the best dinner I’d ever had.  I ate lots of cake. 

Then I went to the store and filled Chris’ prescriptions, getting a candy bar for myself on the way.  I’d had a hard day, I told myself, and I need a reward.  When I got home and finally settled everyone in bed, I had just a tiny bit of ice cream with chocolate sauce. 

Chris is doing well. He won't be throwing out the opening pitch for the Rockies this year nor will he be attempting to climb Mt. Ypsilon or compete in the world championship jump rope competition.  He is doing well enough, however, to put his own socks on, and that’s nice.  I’m doing well, too.  I only ate one Oreo cookie today and had some hot chocolate and, just maybe I’ll have some ice cream, too.  I’m not overindulging.  We watched the movie, “Chocolat” last night.  If Juliette Binoche can eat all that chocolate and look that good, I’ll keep eating it, too.  In fact, everyone in the movie was happier, better looking, and emotionally healthier after eating chocolate. 

I’m definitely not giving up sugar completely.  It obviously wouldn’t be healthy.  Besides, we’re celebrating today.  Chris can now close the car door by himself.  It’s also St. Oswald’s feast day. Tomorrow is the feast of St. Ethelburt and the day after that is St. Walburga’s day…



Electromagnetic Interference and Medical Implants

Terri Reinhart

Dear Friends, 

Last year, Gary Olhoeft had DBS surgery to control his Parkinson's disease symtoms.  It has been a success for him and is controlling his symptoms without the severe side effects from the medication that had become worse than the disease for him. 

Gary is also a geophysicist and he has been able to invent ways to monitor the electromagnetic interference that can affect his DBS system.  The following YouTube videos are of a talk that Gary gave to EMR Policy Institute in December of 2009.  These Are good and important to watch even if you don't have any medical implants! 

Thank you Gary for sharing your knowledge with all of us! 

Terri

 

If you can't stand the heat, stay away from mom

Terri Reinhart

The Fantastic Four got it wrong.  The Human Torch should have been a woman - over 50.  I knew my hot flashes were intense but I didn't realize just how bad they had become till the kids pulled out the marshmallows and sticks.  No need for a campfire, they'll just find mom. 

After my hysterectomy, my doctor told me that if I didn't have any hot flashes in the first two months after the surgery, I probably wouldn't have them at all.  I was listening intently, as was my whole body.  My body often likes to play practical jokes on me.  It likes to make me do things that I don't have any intention of doing, like suddenly walking backwards or twisting up like a pretzel.  I should have known it wouldn't let an opportunity like this pass by.

Two months after my hysterectomy, I was celebrating, thrilled to know that I had made it through without any menopause symptoms at all.  None, that is, except for the ease at which I could cry while watching old British comedies or reading the back of cereal boxes.  All the while I was celebrating, however, my body was laughing in a most sinister way.  If you are over 50, you know that laugh from the old cartoons with Muttley the dog.  Had I not been celebrating, I might have remembered that the day was not over yet.  The two months would be over at midnight.  What a wonderful practical joke this would be!

At exactly 11:59 pm, my body suddenly burst into flame.  I now know what it feels like to spontaneously combust.  It was like having a fever for three days, all compacted into two minutes.  I threw the covers off me and started to gasp for air.  Within a few seconds, the cold air hit my sweaty body, bringing a chill that made me shiver uncontrollably.  I frantically pulled all the blankets around me, leaving my husband in the cold, and snuggled to warm up.  As soon as I was almost comfortable, it happened again.  My inner blowtorch reignited, forcing me to send the blankets flying off across the bed.  This was repeated many times.

The fact that my husband did not leave me right then convinced me that he really does love me.  

The next morning, I took a deep breath and decided that I was not going to let a few hot flashes get me down.  It's a natural process, I told myself, and so there must be some physiological benefit to them.  After all, fevers can be very beneficial in ridding the body of toxins.  Maybe hot flashes do this, too, sort of like "flash pasteurization". 

I wonder if it's also part of the natural process to want to bite your family.

My husband deserves a special award for somehow managing to survive in a household with three females - one going through puberty, one going through menopause, and one expecting a baby.  When he made the decision to retire in the middle of all this, the family should have given him a plaque proclaiming him "Masochist of the Year".  Who in their right mind would decide to stay home at a time when the clouds of hormones enveloping their dear ones were thicker than his pipe tobacco smoke? 

Hot flashes wouldn't be so bad if we could only control them.  Just think of the power we would wield if only we could say "Flame on!" or "Flame off!"  Not only would we save money on heating our house, we would also be assured that people would take us seriously, especially if they wanted to keep their eyebrows. 

It's been almost 8 months since the hot flashes started.  I'm okay.  For the most part, I've gotten used to them and only on rare occasions do I growl at my family.  They've learned when to stay away from me.  It's a lot, though.  It's not easy being female, what with menstrual cramps, childbirth, and menopause.  We've got it rough, but then, so do most superheroes.

Excuse me, I have to go.  The kids are getting out the marshmallows again.

 



Multiple Choice

Terri Reinhart

I don’t like multiple choice questions, unless it’s a math test.  If it’s a multiple choice math test, then I have a somewhat reasonable chance of maybe, possibly getting something right. 

In other areas, Multiple Choice just doesn’t cut it.  The other day, I was filling out an information sheet about my studio.  I was asked to define my Studio.  It was Multiple Choice and the possible answers were as follows:

a)  Business

b)  Entertainment and the arts

c)  Geography

d)  Technology

e)  Music

f)   Organization

How do I answer this?  My studio doesn’t fit neatly into any of these categories.  Sometimes the studio is for creating art; sometimes it is for creating music.  In the evenings, it provides a quiet get away for my son.  It’s also a place for my daughter to listen to old LPs while she draws.  It’s my sewing room and a quiet place to write or have a phone conversation.  I try to keep it organized but I don’t think that qualifies it to be an Organization.

The studio is a gentle place where friends join me to create art.  A lot of art and craft work does happen in the studio.  We’ve made brooms, baskets, books, more books, dolls, and elves, among other things.  Sometimes our focus is the work, sometimes it is an excuse to come and sit with a cup of tea and talk.  I have time to listen.

Wouldn’t it be nice if everything in our lives would fit into neat categories? 

I found myself thinking of this yesterday after yet another visit to one of those delightful medical professionals I see regularly.  The doctor looked at my hands.  He ordered an x-ray then explained that I have the beginnings of osteoarthritis in my hands, carpal tunnel syndrome, and something called “Trigger Finger”.  I will go for some occupational therapy but the doctor was honest with me.  He said that the pain may go away for brief periods but it will most likely always come back.  It seems I have overused my hands over the years. 

I was shocked!  I couldn’t believe that thirty years of knitting, sewing, woodworking, broom making, book binding, felting, doll making, and paper quilting, could possibly have taxed my hands to this point.  I mean, really.  I thought my hands were just being belligerent. I just needed to show them who’s boss. 

After repeated attempts at disciplining my hands and continuing with all my craft work, I now have to concede they just aren’t up to the task.  My hands complain loudly when I knit or handsew and my thumbs have learned how to “just say no”.  You wouldn’t believe how useful it is to have opposable thumbs that actually work.  I have to admit that my crafting days, at least the days of spending hours working on crafts and accomplishing a lot, are over. 

What do I do now?

a)  swear

b)  spend time, money, and energy trying to find a cure

c)  stop all craft work and spend my time watching soap operas

d)  figure out what I can still do and redefine who I am

Choice b) is out.  I don’t have the time, money or energy to put into trying all sorts of possible alternative therapies.  I been there, done that.  I ran choice c) by my family and they collapsed in giggles on the floor.  After years of watching their mother having a minimum of 5 projects going on at any one time, they know that I am unable to watch TV or movies unless I am sewing or knitting.  That leaves choices a) and d).  I think I’ll choose both. 

This might take awhile, choice d) that is.  Choice a) is easy, cheap, and good for when I’m in a tight spot. Swearing is madatory.  As for choice d), I suspect that I will be spending a good part of the rest of my life figuring out who I am and what I should be doing.  Come to think of it, isn’t this kind of what we all do, all the time? 

For now:

The Studio will still be open and I will still give workshops.  I have never liked the phrase, “those who can, do, and those who can’t, teach”.  This is an insult to teachers everywhere.  However, at this point, I can still teach what I can no longer do myself. 

Several friends and Chris have suggested that, perhaps, God or the universe or a higher power is trying to tell me that it’s time for me to focus on my writing.  This I will also do.  I can still tell stories and I can still write.

I can also still listen.  At my lowest point, on a day when it was hard to walk, hard to speak clearly, hard to breathe deeply, hard to find the words I wanted to say, I took comfort in knowing that there was one thing I could always do.  I can always be there for my friends.  I can always listen.

You’re welcome to come by anytime.  I’ll put the kettle on and we can have a cup of tea.

 

 



Consistently inconsistent

Terri Reinhart

Whenever I need advice, I always go to my good friend, Mike.  He's a wonderful listener and I can talk to him about anything.  No matter how complicated my problems, he always has something thoughtful to say.  He has a solution, too, for every one of my life challenges.  It's always the same.  He'll look at me intently, nod his head slowly and say, "I think you should watch a movie."  He's very serious and even offers to loan me one out of his collection.

Of course, in trying to find ways to live healthy, feel good, and develop all my life coping skills, I have also been listening carefully to the health professionals with whom I spend much of my leisure time.  They have plenty of advice for me.  I've learned, however, that it is rarely consistent.

After my daughter's birth, nearly 17 years ago, my doctor told me that I had lost a lot of blood and I should have plenty of red meat in my diet.  Just a few weeks later, this same doctor told me to stop eating red meat altogether.  It seems that my lab tests showed an increase in my cholesterol levels. 

My first neurologist was convinced that I had spinal stenosis and needed spine surgery.  The neurosurgeon did not agree and sent me back to the neurologist.  They played ping pong with me until I finally went to a different neurologist who diagnosed my Parkinson's disease. 

It's just as bad when you begin to look at all the articles about nutrition and healthy living.  Drinking lots and lots of water is good for you but drinking lots and lots of water can kill you.  Take Vitamin E because it's a powerful antioxidant, which is a good thing, but don't take too much.  It can kill you. Exercising is good, and running, so one article says, helps to prevent heart attacks, the common cold, cancer, and mild depression.  Yet another article states that running, over a period of time, will cause our organs to drop down, landing on our bladders and causing them to leak.

Considering all these inconsistencies, imagine how shocked I was when I found there was one thing all my health professionals agreed on.  I was even more amazed to realize where it was that I was failing.  I was not including time for the most important health activity of all: watching television.  Mike was right after all.

Come on…  I have a very busy life.  Between solving the cryptograms in the newspaper, baking chocolate chip cookies, and going out to coffee with my husband or friends, my schedule is packed solid.  So, when the dental hygienist asked if I had been flossing my teeth every day, I responded by telling her that I do what I can but I don't have much free time.  Her response?  "Do it while you're watching TV".  My doctor has told me that I need at least thirty minutes of aerobic exercising every day.  I threw up my hands and told the doctor that my day is booked, my week is booked, and my year is booked.  "No problem", said the doctor, "you can always exercise while you watch TV." 

My therapist suggests doing stretching exercises during sitcoms, my hairdresser tells me to rub conditioner and moisturizer all over my scalp, leaving it on while I watch my favorite hospital drama, and a local minister insists that commercial breaks are the perfect time to give thanks to God. 

I added up the time needed to do all the healthy activities that I had been neglecting.  All in all, I would have to spend at least 5 hours a day watching television, just to keep up.  I wasn't pleased but I was ready to admit that I had been horribly mistaken.  From now on, I will tend to my health.  Where's the TV guide?

Taking a deep breath, I humbly shared my new plan with my husband, who was reading the daily newspaper.  He smiled at me.  I knew he was proud of his wife.  He had married a woman who could admit her mistakes and carry on.  I waited for him to tell me how wonderful I was.  Instead, he handed me the newspaper and pointed to an article. 

The headline said, "Watching television can kill you."

 

Halfway there...

Terri Reinhart

Day 9 – I have to admit, I haven’t had any headaches since going off of sugar.  Damn.

Day 10 – They finished the cheesecake, right in front of me.  I am a third of the way through this experiment and have decided that Andrea and I will have to reward ourselves for a job well done after the thirty days are over.  We’ll go for cheesecake. I thought I would look up and find where to get the best cheesecake in Denver.  After cruising through a few cheesecake sites that, oddly enough, had nothing to do with food, I finally landed at Vollmer’s Bakery in Denver.  They specialize in cheesecake – the food kind.  They had photos and descriptions of all their varieties.  One of their cheesecakes had Bailey’s Irish Cream in it.   Another new rule:  Do not look at dessert websites.

Day 11 – I learned that holding my grandson is the best way to take my mind off of dessert.  The diet program is beginning to affect my family.  They have noticed that there are no homemade chocolate chip cookies in the house.  If I’m going to suffer, they may as well suffer, too.  They’re not suffering enough, though; they’re eating ice cream…with chocolate sauce.

Day 12 – Chris asked me to cut his hair today, which means that he’ll be wearing a hat for the next six weeks.  I did well on the program today.  The cookies were tempting, even if they were store bought.  One wouldn’t hurt, would it?  I had a tiny bit of Bailey’s tonight but that was for medicinal purposes.  Chris will vouch for me.  If you ask him, speak up.  His hat covers his ears.

Day 13 – I have lost three pounds.  I am in danger of losing my cuddliness.  Today may be a challenge as I will be at my parents’ house.  They have Oreo cookies.  They also have blueberry pie, an odd assortment of leftover Halloween candy, and hard mints to suck on when you have a sore throat.  The last time I had lunch there, I found exactly three things that I could eat:  Velveeta cheese, potato chips, and water. 

Day 14 – Didn’t sleep well last night.  I realized that every time I craved sugar yesterday, I drank a cup of tea.  Most of it was caffeine free, but I was still up and down several times to the bathroom.  I don't do that when I eat chocolate ice cream with Bailey's on it.   

Day 15 – Half way there.  I should be celebrating, but I don't have much energy today.  Perhaps I don't have enough sugar in my system.  Giving up sugar is probably not at all healthy for me. 

No Sugar Diary

Terri Reinhart

Rules:  No refined sugar, brown sugar, honey, maple syrup.  I won’t check labels on bread or other packaged foods that otherwise seem healthy enough.  I will give up cookies, cake, brownies, chocolate truffles, cherry pie, jelly, ice cream, Bailey’s Irish Cream, wine, and other sweets.  New rule:  Holidays and birthdays are free days.  One must honor the spirit of the day.

Day 1 – All is well.  I had a good breakfast with protein and didn’t miss sugar today.  I didn’t miss any of the sweets until after dinner.  Then the truffles and Bailey’s sounded so, so good!  I resisted temptation.  There is a little nagging doubt about this experiment.  Why would any sane person give up sugar during the coldest time of the year?  I will undoubtedly lose a few pounds.  Why should I want that?  One needs a few extra pounds in the winter to keep warm.  Everyone knows that.  I’m also a grandma now.  Grandmas should be cuddly.

Day 2 – Devouring an entire bag of cheese curls is not a good substitute for eating sweets.  It’s not the same at all, except for that funny tummy feeling after overindulging.  Starting tomorrow, no more cheese curls.  I made Patrick’s birthday cake.  I did not lick the spoon.  When a bit of the batter dropped on my finger, however, I did lick my finger without thinking.  Is this cheating?  I don’t think so.  I cleaned up all the other tiny spills without guilt.

Day 3 – Patrick’s birthday!  Hooray!  Today I can have my cake and eat it, too!  I’ll even have a little champagne (thanks Mike and Mark) to toast the birthday kid.  Holidays and birthdays must be free days.  I will immediately add this new rule to my list.  I have been good.  I didn’t have any sugar till after dinner. I did have champagne with dinner, chocolate cake and ice cream with chocolate sauce, a tiny bit of Bailey's, and ….I have to admit….a spoonful of chocolate frosting.  Tomorrow, I’ll be back to the plan.

Day 4 – I resisted the temptation to have leftover cherry crisp for breakfast.  That should give me extra credit points, shouldn’t it?  I also made fruit and nut balls.  These are healthy with a capital H.  They are made only of ground up almonds, sunflower seeds, dried unsweetened cherries, dried unsweetened apricots, dried unsweetened figs, dried unsweetened dates, unsweetened coconut, and cinnamon.  Of course, dried fruit doesn’t ever need any added sugar.  Dried fruit is full of natural fructose, natural potassium, natural fiber, and natural calories.  Substituting dried fruit for sugary treats is okay, as long as I’m not trying to lose weight and as long as I don’t overdo it.  Anything that is as high in fiber as dried fruit and nut balls is not something that tempts me to over indulge.

Day 5 – Teo’s christening was today.  That meant that there were many wonderful treats to be had:  truffles, cheesecake, cookies, cheesecake, honey roasted nuts, and did I mention cheesecake?  I was good…even though technically it was a celebration day and I should’ve had some cheesecake!

Day 6 – I’m getting used to this no sugar stuff.  I can do it.  I don’t even get tempted anymore except when I’m really stressed out…or irritated at something or someone.  As long as everyone does what I want, I’ll be fine.

Day 7 – A Rabbi was once invited to eat dinner at the home of a friend.  He was served a wonderful dinner but noticed that there was a fly floating in his soup.  He didn’t want to embarrass his host or seem ungrateful, so he ate all the soup, including the fly.  He didn’t even question whether the fly was kosher.   The moral of this story:   When one’s host offers you something to eat, one mustn’t refuse it just because it has sugar in it.  One might offend one’s host.

Day 8 – Someone….SOMEONE ate the leftover frosting from Patrick’s birthday cake.  How many more days on this blasted no sugar program??