Do Not Panic

Christmas Eve brought me a very surprising gift.  I received two tickets to see one of my favorite people, Kid Rock.  I should say I love Kid Country, I love his new stuff.  When I received the gracious gift, I could not have been happier.  Fast forward just two short months.  The once eager and ready to rock out, for the first time in twenty years, is now panicked at the thought of the stairs and the crowd.  Let me rephrase that, I am not scared of the crowd, or the stairs.  I am worried about being able to make it up the stairs and even more frightened of coming down the stairs.  I keep picturing groves of people moving at  a fast pace, and being stuck in the middle.   Once I get to my seat I know I'll be fine.  I will need to take my meds before I go, this will make it much easier to walk.  On the flip side, they will also get my jig going.  My older sister is going to be my cohort for the evening.  At least, I will be with someone that understands my limitations and I won't have to try to explain anything to her.  We are meeting friends before for dinner and cocktails.  So if you are lucky enough to be seeing  the Kid tonight as well, and see some thirty something crazy women in the upper bowl dancing before the show starts,  give me a shout.  We are going to make this a great night and I refuse to get panicked about things out of my control.  If the stairs do get the best of me, I hope this guy is standing at the bottom.

Notice the hands,  he is waiting at the bottom for this well nourished girl.  

Tonight will be a good night.

The weather today has been less then desirable.  The rain is cold, what snow we had is gone, and well everything just looks dirty.  I wanted to curl up and watch a good movie.  Now, I pay good money on a monthly basis for about 500 channels.  I would have to immediately eliminate about fifty for the simple fact that they are in Spanish and as much as I love a good enchilada, I have never learned a word of Spanish.  Eliminate another hundred news channels and fifty more weather channels, despite what some people in my house think, these are not channels.  So, I am at roughly three hundred channels and nothing to watch.  I decided to head to the only video store in our town.  Why is we have almost forty thousand people in this town and we have one video store?  Anyway, I remembered that my darling teenage son still had a game in the basement that was rented over Christmas break.  I didn't even try to do the math on this, but I knew it was a whole bunch.  I wanted a movie and I had no choice but to think up the best story I could and hope that the person waiting on me had a game hiding son at home as well. 

Before I went, I decided I may have to may a quick get away.  I could picture all the employees staring as I tried to find the perfect movie.  I was sure they would all be laughing hysterically at the stores largest fine holder.  I looked up a few movies.  The one that came to mind was relatively new and the main character had Parkinson's.  I was wanting a "feel good" type of movie, so I checked out some of the reviews.                                                                   
This is what some viewers had posted

"One particular scene in the movie was wrenching to watch -- at least for me: Maggie expresses to Jamie the painful fact that she will necessarily need and depend on him far more than he would ever need and depend on her.
One of the hardest things about having PD is knowing that – unless there are major breakthroughs soon - -   as the disease progresses we may not be able to take care of ourselves. Maggie may need help with buttons now. Eventually she may need help with walking, eating, and getting in and out of bed.
Maggie also says something like, “I had things to do and places to see!”

I read that last comment about a thousand times, seriously, I couldn't stop reading the same thing over and over.  I had things to do and places to see.  That is some heavy shit right there.  Now, I haven't even seen the movie and I am already analyzing things from it.  What did she mean by that?  Was she no longer going to be able to do those things?  Was she not going to be able to go to the places she wanted to go?   She appears to be young by her photo on the cover. I had read where she had early signs of this shit ass disease, why was she feeling this way?  Maybe she is so unsure of the future, that she fears she will never do the things that she as a little girl dreamed of.  I am feeling this girls pain from one line.  Just the other night I was watching Dog the Bounty Hunter,  yea yea, I know how lame is that?  None the less, I was watching as they drove past some of the most beautiful beaches I have ever seen.  I have always wanted to go to Hawaii.  The beaches, the sun, the fancy fruit drinks with umbrellas.  I know that I am able to do anything right now, but what about ten years from now.  In ten years I will be fifty.  Fifty in my book of life is supposed to be enjoyable, more financially secure, able to travel without the worry of children or schedules.  What will I be like at fifty?

I'm hoping to find myself driving along the shoreline with these licence plates.  I didn't rent the movie, hell can you imagine how long this fucking post would have been.  I have to stop thinking so much, period.  I have to remember to live for today.  I know in my heart, that one day I will be burning up priceline.com for the best rates to the big island.  I may not be wearing a bikini, remember I am a well nourished girl.  I may be the old lady in the water that all the kid like, because I shake real good, and makes kick ass waves.  I will get there.  So I will leave you with a few things I have learned
Popular Hawaiian Words and Phrases!
January - ‘Iaunuali (ee-ya-oo new-ahlee)           The month I will go
A`ole pilikia= No problem                              because when I get there, no problems
`O wai kou inoa? What is your name?      In case Andy Garcia is there (make sure it's him)
Mahalo E Ke Akua No Keia La = Thanks be to God for this day             (in case Andy is there)
pololi   =   hungry                                             Hey, gotta stay well nourished

Today has been a good day.     Aloha

Am I sick?

Today I stopped by a friends store to sit and chat a bit.  She is the type of friend that I may not see everyday or even  talk to daily, but the type of friend every girl needs.  One person that you know will never pass judgement on you, or make you feel less then adequate when you fail miserably at something.  She is in fact the friend that  will be the first to laugh with you and even at you sometimes.  I feel as though we both share our sense of humor with the average twelve year old, and this allows us to find the silliest things quite humorous. Anyway, as I was walked in I noticed a familiar face.  She seen me right away and before I was able to say hello, she looked at me and said "are you sick?"  At this point I wanted to dive behind the counter and be guarded by my trusty side kick.  Did I look sick?  I didn't feel sick.  I know I may walk a bit slow, but I really do no picture myself as "sick".  I simply replied "no, I'm alright".  There was some small talk and she left.  The sound of the door closing was my cue to ask my confidant, what kind of question was that?  I could tell by the look on her face that it was uncomfortable for her as well.  I asked her, Do I look sick?   For the first time I really felt as though she wasn't being totally honest with me.  She stumbled around and made some comment about, maybe this lady had heard something or thought my leg was hurt.  I didn't push the question any further, maybe I was afraid of the answer, but it really has been stuck in my head all day.  Do I look sick? Am I sick?  How in the hell do you answer a question like that?  I know the saying "there are no stupid questions."  what the fuck ever.  

I have Parkinson's and so do the people you see here.  We are not "sick".  Parkinson's definition is this
Parkinson's disease is a disorder of the brain that leads to shaking (tremors) and difficulty with walking, movement, and coordination.  We have a disorder.  I don't think any of the people including myself look sick.  Hell, I have spoken with many PD patients who don't feel sick.  I guess, I have figured out my answer to the question of the day.  I have a disorder.  A movement disorder to be exact.  Yes it is called Parkinson's Disease, but I would prefer it to be called a disorder.  It doesn't sound nearly as scary to me and the outcome of a disorder sounds better to me then a disease.  I really shouldn't be so hard on the skinny, little, no mannered,  nice lady.  She may have been sincere in her question.  Maybe she just caught me off guard.  I guess this a lesson learned for me as well.  I will try to restrain from asking such a personal question of someone I rarely see and barely know.  I will keep those for my fun loving, goofy acting, and amiable friend. 

Oh Cock, I forgot to say who my friend was.  hehe
Today has been a  good day.

I'm well nourished

Well not much to report today.  Meds are working pretty well.  I seem to no longer need a clock to tell me when it's time to meet up with the little yellow fellow.  I have about one hour of the funk feeling and then it's time to get my jig on.  I did learn one thing today.  I had to go to the Neurologist's office to pick up some paperwork.  I was reading through some of the notes that he had written.  Thirty nine year old female Parkinson's patient stuck out first.  Yea, Yea, Yea, what the fuck ever.   Then there it was.  His exactly comment was " she appears to be well nourished"  What the hell does that mean?   He appeared to be of Indian decent, but did I mention that?  I realize that this is doctors term, for appearing healthy.  But well nourished?  Like I haven't missed any meals lately, well nourished?   This made me chuckle, I wanted to see what well nourished looked like, and this is one of the first pics that came up.

Today has been a good and educating day.

My helpful handbook

My helpful litttle handbook has once again helped me.  With all of the sleeping issues lately, I should rephrase that to sleeping issues at night, I decided to start reading.  I couldn't have been more than a couple pages into my new loves book, when I could barely see the page.  My eyes began to burn something terrible and it was almost as if I was seeing double.  I put the book down, gave my eyes a good rubbing and after a few minutes they began to burn worse.  Guess I should have removed my daily eye makeup before I started rubbing them like a dog with a flea.

  After removing the make up and giving them a rest, I decided to once again become familiar with Michael and his take on this whole fucked up disease.  It  took a bout 2 pages for the familiar burning and now watering eyes to fail me yet again.  My first thought was that of my knee high socks, my boot that I love so dearly, and now a great pair of glasses.  My eyesight has always been perfect, but I am knocking on the forty year old door. Throw in the fact that other then frequenting the world wide web, my reading had been very limited these past ten years. 

Well according to my pocket pal, Dolce and Gabbana may need to find a new model.  This is common in Parkinsons patients. This is what I found

"Parkinson's disease can cause extreme fatigue. Fatigue can cause blurred vision, dry eyes, watery eyes, and double vision. The medications prescribed to treat the condition may also play a part. The general tremors and moving impairments associated with the disease can lead to difficulty moving the eyes and judging distance. "  Simple solution...start blinking.  Apparently, it is harder to control your eyes, therefore we are so focused on that aspect that we don't blink.  It suggested that in between paragraphs, take a deep breath and blink a few times.  I gave it a shot.  I'm still not sure what the deep breath does, but the blinking allowed me an hour of enjoyable reading.  Who would have thought of such a simple soulution?  I don't see any two thousand paged novels in my future.  I'm afraid I would hyperventilate from all the deep breathing, but I am able to read for quite some time now, without looking like an ad for visine. 

I am sure that the day will come, that I encounter a problem that even my pocket pal will be stumped, but it's not today.
Today has been a pretty good day.

Learning, learning, and more learning

Have you ever woken up and just not seemed yourself?  Now keep in mind,  I had already had my morning meeting with the little yellow fellow,  and gave him plenty of time to complete one simple task.   Twenty minutes is the usual  amount of time it takes to kick in.  Apparently, this isn't going to be the case all of the time.  Forty five minutes after ingesting the first of five pills for the day, I began to loosen up. It's rather hard to explain to someone how it feels without the meds.  One of the doctors had told me, that once I started taking them, it would be hard to live without.  I agree.  Once I stood up, I felt really light headed.  I didn't fear passing out, it was more like a really bad hangover.  When I sat back down it began to feel better.  I did this whole up and down things probably ten times, before being able to function.

This book above has become a handy companion.  It is just what it says, questions and answers about Parkinson's.  It helped me this morning.  Apparently what was happening to me was that my blood pressure was dropping when I stood up.  Because of gravity, your blood tends to pool in the veins of your legs when you stand up. Your body responds to this pooling by increasing your heart rate and squeezing or constricting the blood vessels to send the blood to your brain and other vital organs. If you have orthostatic hypotension, something interferes with your body's response. Instead of increasing, your blood pressure falls 20 or more points when you stand up or when you sit up after lying down.
 Now,  I was very appreciative for my little hand guide to life for letting me in on this little tid bit of information.  I wasn't happy to read, that a simple solution to this is to wear support socks.  For fuck sake, I'm not even forty yet, and I need support socks?  Is anyone out there not familiar with these lovely little things?  Well, here's a picture for you.

Aren't those about the sexiest things you have ever seen?  I didn't want any of my friends to get jealous, but just so you know, I have an over the top black and blue boot that goes on my right foot as well.  Oh yea, I am rocking that post op boot.  I have visions of dressing these darling things up with the cutest little skirt I have had hanging in my closet for months. 

What, you don't think they come in other colors?  Oh, your worried about the heels.  Yes indeed, I would probably have to sport this with a cute pair of  flats.  Do you think Sarah has a problem with her blood pressure as well?
My pocket pal also gave me these suggestions.

 * Don't sit with your legs crossed.
* Stand up slowly after you have been sitting.
* Sit up slowly after you have been lying down, and sit on the side of the bed for a few minutes before standing to let your body adjust to the new position.
* Use blocks to raise the head of your bed about 10 to 20 degrees.

Well, the first one is not really a problem.  The stiffness is my right leg would never allow it to cross the left.
Second, stand up slowly?  Really, The last time I jumped up, I did a bellyflop on the floor of the hospital.
Third,  again jumping out of bed hasn't been a problem, and sitting there for a few, well that's a given.
Fourth,  I am not putting cinder blocks on my new bedroom floor.  I worked way to hard on that.
I did find where you can get risers for your bed.  They look something like this

Now that I could live with.  I keep picturing all the dogs sliding to the end of the bed. It would probably be wise to get accustomed to flannel sheets, I don't think satin sheets are in my near future.  Thanks to my little book, today has been an ok day.

Here in central Illinois you never know what the weather will be like in February or any month as far as that goes. I can remember many times Halloween costumes being ruined by a big parka and boots. Thanksgiving day spent digging out the grandparents so we can deliver dinner to them. Christmas day playing outside and others spent in to spare our souls from the frigid weather. 4th of July parties hanging out  indoors because of the chill in the air and others so hot you couldn't get out of the pool.  I watched my son play basketball outside today and remembered a few weeks ago we had gotten 14 inches of snow.  How is it things can change so quickly?  I know everyone has heard the old saying " your life can change in a second."   Maybe the first person to say that had suffered some split second tragedy.  Maybe, they had lost someone close to them.  Then again, maybe they lost a bit of their self. 

I remember the first doctor that looked at me and said "I think you have Parkinson's."  I really don't think it bothered me much.  It was like when your a kid, and your parent grounds you for a month.  Yea, I will be out of the house in two days.  Then the second doctor comes in and in a mono tone type of voice says "I must agree with that, you have all the signs of young onset Parkinson's disease."  Ok, now this one hit a little harder.  Like when your a teenager and your Dad grabs your car keys.  He waves them in front of you and then throws them up in the air and as soon as he starts to catch them says "I will be holding on to these for a while."  Just as the keys hit his hand you can feel it in your gut, he means business.   Now the third doctor was like your parents when you had to tell them you were no longer attending the college courses that they had so graciously paid for.  The look of disappointment hurt really bad.  That is how my really cute, really nice, totally sweet doctor looked at me. He was disappointed.  I think that he knew, I was hunting for another diagnosis.  Did I say he smelled good as well?  He did, and his dark hair with those blue eyes,  the same eyes that closed so ever slowly as he said those terrible words ----Parkinson's!   My life will be forever changed.   It really didn't hit me until a day or so later in the hallway of the hospital.  I was standing alone, yet all three of those doctors seemed to be with me.  That was the second my life changed.  I had lost a bit of myself.  The self that I had pictured at say, eighty was different now. This is how I saw myself

Maybe not the Harry Carey glasses, but the lively woman she is.  Now as hard as I try, I can't picture myself old.  I think maybe I'm afraid of the future now.  Like there is something in my brain that wont turn on. Like a door has been shut because what lies behind it may be to frightening for me to handle.  Then again, maybe my brain is having a hard time adjusting to all of this new knowledge I have have obtained.  Is there an overload on your brain?  Say, if I were to forget my locker combination from seventh grade, maybe I could empty up a little space in there and be able to think about the future more.  I just looked at the picture above again, to be honest this is how I had always seen myself.

Hands that had worked hard for years.  Hair covered because it looks like shit.  Think about it for a minute.  The only person I would let do my hair is older then I am, I would venture to say she's no longer at the Depot.  But I am standing strong and saying what's on my mind.  That is the old lady I want to be. Guess it is true that life and weather both change daily.  I can deal with the weather, I will simply throw on a sweater.  Is there a sweater for life?  A coat of sort to shield me from what life is going to throw at me. 
Today has been a good day.

The Neurologist

Last night was pretty much like the nights before.  I was wide awake at midnight.  There was an upside to this.  I watched a couple of really old movies on cable and found out which face book friends also seem to be ready to go at midnight.  I tried to read for a while, but mostly I sat there and thought.  The next day I was going to be seeing yet another doctor.  This doctor was a neurologist who came highly recommended by my hot little doctor in Morton.  I did some reading on what to expect, yet I still began to feel anxious.  You remember the night before a first date.  You pretty much know what is going to happen, but still those butterflies are there. My butterflies must have been the size of an eagle last night.    I fell asleep around one and was up at five to begin my day.  I'm sure you realize, I was going to have a partner on my journey to the brain doctor.  Again, she was determined to be there.  I finally realized if I didn't let her ride with me, she would just follow me.   I picked my older sister up at nine and we were on our way.

The office appeared bigger then I remembered.  We had taken my mother into this same office three years ago.  At that time, I was the one going for moral support.  Today, well let's just say, things are different when your the one getting ready to show your ass off , because a certain sister didn't bother to tell me the back of my gown was wide open.  Oh yea, there I was walking around the office.  On my tip toes, on my heels, turning, bending, you name it I did it.  I must admit, I remember her saying as she was helping me get my gown on "do you want me to tie the back?"  I didn't  see a need for it, at that point.  I'm sure as she sat on her little chair in her little corner she was secretly busting a gut.  I, on the other hand was to busy trying to do, what felt like a field sobriety test.  By the way, if the occasion ever occurred that Johnny Law does make me do one, I would fail epically.  The neurologist and his trusty side kick checked me over once and then a second time.  At that point he sat down, rolled his chair to the middle of the room.  He was positioned perfectly in the middle of  Dede and I.  I had to laugh, it was as if when he gave his diagnosis he in no way wanted to get cornered by either of us.  It was what we both expected.  First diagnosis Parkinson's.  He did say that he wanted to do two more blood tests and then was shipping me off to yet another specialist in Springfield. He was sending me to his mentor, as he put it.  I think the doctor I need is this man.

Dr. Gregory House.  If I have any more of those crazy vivid dreams in my future and Andy Garcia is unavailable for the show. I would welcome House with open arms.  That's another funny story.  As Dede and I were listening to the good doctor speak, he began talking about copper exposure and as a last ditch kind of effort he wanted to test me for that.  So I asked him "you mean Wilson's disease?"  He looked strangely at me and said "yes".   As soon as we got outside Dede was like "how the fuck did you know about Wilson's disease?"   Duhhh  I watch House.  See there is an upside to being sleep deprived and watching House reruns at two in the morning.  All in all, it was a good visit.  The diagnosis didn't change, and I got pushed off onto yet another poor soul, but everyone I have been to seems genuinely concerned. 

Next visit I am taking someone who has my back though.
Today has been a good day.  A bit breezy but good.

A little TMI

Please let me start by asking you, how well do we know each other?  Now, another question.  Do you feel the need to know me a whole lot better?  If the answer to the second question is no, then you need to go back to facebook or some flowery, smell good kind of blog.  When I started this blog is was to remember things, say 20 years from now.  That would be the time dementia should start to settle into my perfect little world.  Hope I can remember my password, I should probably jot that down somewhere.  Well, I have been getting a ton of feedback from this silly little journal.  I actually got a letter in the mail today,,,why wouldn't they have emailed me?  I have no idea.  Obviously,  if they read the blog they have a computer.  Just sayin.  The letter stated that they had been creeping on my facebook and read the blog.  They wanted me to know that they found it very informative and thought it may help others someday.  So, if that is really the case, I need to let it all out.  I know your probably thinking that I have been.  Well there are many little things that your not going to see, if we meet up at the local market.  That is if I have the energy to get there. 

I have already spoken about the whole foot deal.  By the way,  big thank you to Pekin Prescription Lab.  You are all the best.  My right foot thanks you very much.  I no longer walk like Herman Munster in the mornings.  The hand tremors, yea they pretty much suck, but it doesn't hurt.  What does hurt, is my stomach.  Here is where the TMI, will begin. Don't blame you, if you haul ass about now.

If I was David Letterman and had a top ten, this would be in the top five.  It is unbearable.  Now before you all flood my inbox with the home remedies, believe me I have tried it all.  This isn't something new to me.  I have been dealing with this for quite some time.  However, I did not know what the cause was.  Apparently I am not alone in this shitty (you had to know that was coming) symptom.  I am beginning a few new things in my diet.  Exercise is supposed to help this as well.  I will keep you all posted.  I am sure you are all looking forward to that.  Another top ten for you is fatigue.  I would have to say this is the most annoying.  I am tired all the time.  Well, except at midnight.  Apparently I am like a 2 month old, and have my days and nights mixed up.  All day I feel as though I could fall asleep at any given moment.

This picture is not far off of how I feel many times a day.  I have read page after page on fatigue and how to remedy that situation.  Again, that nasty word exercise comes into play.  I am really going to have to give it a shot.  Hope I have the energy to get home from exercising if it helps my first little problem.  I keep mentioning reading all of these pages, I am sure you realize I am reading all of these from the comforts of my office.  Reading seems to make me tired.  I began to think, maybe I need a book.  Start reading about ten and hopefully find myself having one of my terribly vivid dreams by midnight.  Dreams, that is another thing.  Have you ever had a dream where you wake up in a panic?  This has become a nightly thing for me as well.  Now, if Andy Garcia was in these dreams, and I woke up with my heart racing that would be a good thing.   Being chased by a man without a face as he is stealing things from around my pool is another. 

I headed off to the local library in search of the most boring book, in hopes of being bored into sleep time.  I found myself staring at a book. Think back a few posts, to where I said  "it drives me crazy when people find out you have Parkinson's and assume you like Michael J Fox".  To me that is like people walking up to you when you are over weight and saying "I just love Oprah".   Well, there he was.  Michael was staring at me from all the self help books, looking at me like a twelve year old boy who had seen boobs for the first time.  He looked so sweet so innocent.  I wanted to reach out to him, but do I really want to read about someone else going through this shit?   Honestly, I am trying hard enough to deal with my own problems.  Maybe, just maybe I would just read the back.  I was hooked, yep that's right.  I just may love Michael as well.

Look at that face, could you not have grabbed him and taken him home?  See what I mean about the picture.  I bet the photographer for this shot was showing him nasty little 40 something boobs to get a grin like that.  I apologize to all you Fox lovers out there.  I have always said, that what he does for awareness is amazing.  I am beginning to think that he is amazing.  I will let you know more tomorrow.  Oh,  in case you weren't put off by all the poop issues and the boob comments,  I have wonderful news coming soon about a toilet lift in my near future.  Just think, I am not even forty yet.  What will they bring me?  Canes, walkers, and a padded helmet.  Maybe, but not today or tomorrow.   

Today has been a good day.

Good Friends

Today I had the pleasure of running into an old friend.  When I say old, what I mean is we have been friends since first grade.  I can still remember the day I met her.  She had the cool mom, they type of mom that traveled all the way to Peoria to get that certain Strawberry Shortcake lunch box.  Please, don't get me wrong here, I have been blessed with a wonderful mom.   I just didn't have the type of mom that drove to Peoria.  Peoria was foreign land to me, until I got my license.  Anyway,  the lunch box.  I really needed that lunch box and even as a 6 year old, I was ready to bargain shop her ass.  I offered everything I had.  The newest Holly Hobbie purse, a Scooby Doo folder, and even my beloved  Evel Knievel crash car.

I will admit, I hated the purse and a folder for this overly amazing lunch box?  When I offered up Evel, I just knew that would be the trade of the decade.  Kind of like Albert Pujols coming to the Cubs, for say---a hot headed, over paid set up man.  Just like that trade, she wanted nothing to do with my handsome jumpsuited man.  What she wanted was my best friend.  I gladly gave him up.  I knew she would grow tired of him anyway and now in my possession was the most amazing lunch box ever.  That is how our friendship began.  We remained friends well into our teens.  She moved away our junior year in high school.  I learned today, that 6 months after moving to Oklahoma she had a baby girl.  This baby girl, who I have never had the pleasure of meeting is now twenty four and a mother herself.  A mother going through a nightmare.  You see, the extra cool mother I spoke of earlier, the one willing to travel to foreign grounds for the most perfect lunch box ever, had not been able to have children.  My bargain buddy, had been adopted.  This was never of any importance until her Granddaughter was born with a rare genetic disorder.  They had come back to the big city of Pekin to meet her biological mother and hopefully get some answers to some pretty important questions.    Well, you know me and this really made me start thinking.  Obviously, by this long drawn out post, I was thinking about my childhood.  More importantly, I began to wonder if something from my childhood could have lead to my shimmy, shimmy, shake.

   My Aunt called me shortly after diagnosis.  She had learned that chlordane had been linked to Parkinson's.
This is what I found on my little hp full of knowledge.  "Chlordane, a family of compounds used as insecticides from 1950 to their ban in 1975, was used both to treat crops such as corn, soybeans and vegetables and to treat termite infestations in homes."   My Aunt had stated that she knew for a fact, that our families had used this within our homes.  I live in the "family house".  This house has been in the Miller family for more that 60 years.  Believe me when I say, if it happened in this house, my Aunt knows about it.   As I was reading through the endless pages on the web, it became clear to me.  I may never know why I hit the jig jackpot, but this could very well be part of it. 

I am not quite sure how this post went from kick ass lunch boxes, to killer chlordane.   I guess that is just how my tiny mind works.  It was a great memory though.  I may not have discovered the cause of my shimmy shake, but I may have discovered where my bargain shopping started.  Here it is, isn't she beautiful?

Today has been a good day.

Valentines Day

Valentines Day.  The international day of love.   yea, yea, yea   I've never been a fan of Valentine's Day. For me it's way too much of a card-company holiday, where people are extraordinarily nice to each other for that day, and spend lots of money for overpriced items that are commercialized, but this day did make me begin to think.  As I stood at the local drug store looking for a card, for that special someone, one that isn't to serious, one that isn't to childish, one that just says "hey glad your in my life"  What I really wanted was to find a card that says "hey, I appreciate you".   A card that would put it all out there.  I'm sorry this shit is happening.  I know you didn't sign up for this. I hate asking for help. I don't know how bad this will get.  I never want to be a burden.  A card that says, Happy Valentines Day...I'm scared as well.   I heard the fear in Doug's voice the day I told him what the Doctors had said.  He was no foreigner to this disease.  His uncle fought this beast for over 25 years.  My mother is fighting the good fight as well.  He was well aware of what it meant.

  Now, any couple that have been together as long as we have, has faced a few rocky patches.  Sometimes, those rocky patches felt like mountains under our feet.  We don't agree on everything.  As a matter of fact, we don't agree on a lot of things.  We do agree to disagree and I guess that works for us.  I feel sorry for him sometimes lately.  I see the way he is changing.  He is doing more around the house, and doesn't complain at all.  He is quick to help carry in groceries and load laundry down the stairs.   He is there, and that means so much.  Neither of us know what lies in our future.  Hell, for that matter no one knows what's in their future.  I must say mine is a bit brighter with him in it.  Maybe it's valentines day bringing all of this on, or maybe it's because he wants to start reading my blog and this will get me brownie points.  But, when you are handed these cards in life and you have someone willing to play the same shitty hand it sure makes it easier to look the dealer dead in the eye and say  "I am all in."

  Today is a good day.

Priorities

I heard an interesting comment the other day.  More money was spent last year trying to get the FDA to approve a "pink pill" for ladies, then was spent on Parkinson's and Alzheimer's combined.  Now this little pink pill, for those of you who don't know what I am speaking of,  is Viagra for the female gender.  I tried to find the exact dollar amounts but was not able to come up with any.  I am sure that this research is ran by a man.  A man who probably spends 14 hours a day at work, does nothing around the house, and comes home to shower and eat dinner that was prepared by his wife.  Now, this wife also works full time and takes care of 2.5 children.  She comes home to laundry, housework, running the children to their activities, and finishes up her 14 hour day by preparing dinner for her hard working man.   I would like to talk to Larry the lab man sometime and explain to him, a few things that would take away the need for that little romance making pill and allow him to work on more important things.  Like finding the fucking cure to this shit pot of a disease.  In the United States, at least 500000 people are believed to suffer from Parkinson's disease.  I would venture to say they are a bit more uncomfortable then a man who is frustrated that his partner is tired or has a headache.  I would explain to Larry that maybe if he helped out around the house more his wife wouldn't be tired.  If he figured out what those big white machines in the basement were for and learned to use them, to give everyone clean clothes, that maybe her head would feel much better.  

I personally find a man with dish pan hands sexy as hell.  This all made me start thinking about priorities.  In my life things have changed.  For years, I have been the last one to sit down to dinner.  I always found it more important to clean up the dinner mess then to sit and talk over dinner with the people that mean the most to me.  Now, the pots are on the stove and the counter resembles something from a kitchen nightmare episode, but I am eating dinner with my family.  I no longer miss out on a chance to watch a movie with my son, because I need to rearrange the cupboards.  I have put dusting second on my list to a good game of tennis.  If my bed isn't made in the morning, well I guess the dogs can snuggle together under the covers.  People have been telling me for years that I fret to much about the little things.  These same people are probably going to be leaving my house covered in dog hair, and making comments about how dirty my floors are.  That is becoming ok with me.  I am beginning to prioritize things in my life.  Sure wish Larry the lab man and all his money hungry stock holders would do the same. 

               Maybe Larry could change the headline on this paper.  Maybe, someday it will read
                                             CURE FOUND FOR PARKINSONS

Today has been a good day.

Another first

So my morning was relatively good, considering I slept for almost 14 hours.  I was extremely tired when I got home from work yesterday.  Those little yellow fellows may make moving easier but they make staying awake hard as hell sometimes.  I layed down for a power nap and the next thing I knew it was eight o'clock.  It had been eight hours since I had taken my meds and my body was telling me, I needed them.  I have been taking them at meal times and it has not seemed to bother my stomach.  So, last night I had a great excuse to have to eat a bowl of cereal and a piece of cake and, Ok I'm going to embarrass myself.  Lets just say I made sure my little belly wasn't empty when the jig medicine hit it.  I then went back to bed feeling like a bloated toad and didn't move til 6 this morning.

I had a nine o'clock appointment to see my dear friend for a much needed hair cut.  Now, this had me a bit worried.  As I have said before, the meds make you squirm a bit and I had visions of me moving and SNIP no bangs.  Anyone who knows me, will tell you I am a bit anal when it comes to my hair.  I don't have the body for designer jeans or really cute tank tops.  I do however, have a great stylist who has grown accustomed to my hair and that makes a big girl smile, even on a bad day.  While I was sitting there, trying my best to keep the shimmy shake at a minimum, I began to think about appearances and what others think.  Now you can sit and say " I don't care what others think."  To a certain extent, I think we all care how others perceive us. In America, $20 billion is spent annually on cosmetics.   I would be willing to bet, the average woman doesn't spend 10 minutes a day to make herself feel better, by applying these beauty aids.  We spend this time so that while we are strolling the aile's at walmart we look good.  Because, we all know the first time we make a mad dash to the store at 6 in the morning for toilet paper, your ex will also be there.  He will be buying something cool like sunscreen or some over priced sport drink.  Who would want to chance that encounter with morning eyes and bad hair?

Somethings can't be hidden, even by the best of foundation or concealer.  Your fake eyelashes may look wonderful, but if your in a wheel chair that is what people will see.  You can have the very best of spray tans and if your using a walker, that is what the focus will be on.  You can have a great new hairstyle and rock it pretty well, but your shaking hand is what will get looked at first. It's human nature and I'm not blaming anyone here.  We are all guilty, including myself.  It's not a good feeling to be different.  It is however, a good feeling to be surrounded by people that make you feel as though it doesn't matter.  People are going to stare and children are going to ask questions.  I will keep thinking of unusual comments to make as people look at me funny.  I was paying the bill at IHOP this morning, when I dropped my wallet.  I got nervous trying to pick it up and we all know the jig is on when I get nervous.  I so badly wanted to turn to the man behind me and say "careful with the coffee here, not sure what they put in it this morning". Today has been a good day.  

The face of Parkinsons

Picture this billboard with 4 people on it.  An older man, a middle aged man, a thirty something woman and a baby.  The three adults would all have captions below them reading " I have Parkinson's".  The baby would be holding a tulip (the symbol for Parkinson's) with the caption "I have hope".   This apparently will be coming to a town near you in the future.  I received a phone call from a very nice woman tonight, asking if I would consider being that thirty something lady.  She said we have to get the word out about this horrible disease and want you to put a face with it.  Well my first thought was,  I know how big a billboard is and just how big is that going to make me look?  My second thought was,  Do I really want to be seen in that way?   She was a very sweet lady who is on a mission to find a cure.  Her husband was diagnosed years ago and she has taken every step with him.  If this woman,who has never had to physically feel the pain that comes with Parkinson's is this passionate about helping others, how could I tell her no?  We spoke for about an hour.  She explained how different every Parkinson's patient was, yet we couldn't get over the similarity I had with her husband.  But a billboard???  Seriously,  My face on a billboard.  Ohh what have I gotten myself into?

I keep having these visions of my face ending up on something like this.  Like an episode of a bad sitcom. You agree to one thing and you walk out one morning and BAM there you are.  Someone messed up the design and your face is advertising for something else.  I know silly, but seriously that is how my mind works.   Maybe they want me to look younger, you know attract a younger crowd.  I could give them a picture of when I was 30.  Hell, who am I kidding I didn't look any better then.  So, in a few months if your driving down RT 29 and see my smiling face,  give me a call if  I have any 1-800 numbers below me.  Otherwise think of Parkinson's.  Think that maybe, just maybe we will get a cure.  Today has been a better day.

Things that go thump in the waiting room

If this shirt would have found its way to my closet, it would have been what I chose to wear today.  Please, if you are offended by F bombs or complete negativity, please check back tomorrow for a feel good post.  This is not one of those kind of days.  I did however, have success in finding the proper foot apparel for sleeping.  It is rather simple actually but the sole is hard and flat and the top has velcro strips which allows me to tighten it over the top of my foot. This may be the only thing that was positive about the entire day.

Now, I know everyday is not going to begin with birds chirping and rays of sunshine beaming in the windows, but I honestly felt as though there was a black fog over my bed this morning.  I have learned a thing or two about making my mornings easier.  I now set my alarm for thirty minutes before I need to get up.  When the alarm sounds, I take my first little yellow fellow before my feet hit the floor.  This  thirty minutes allows me to actually walk to the shower, rather then feeling as though I am dragging half my body beside me. Well, this works wonders if you remember to set your alarm.  I did however manage to get out the door in time for work.   Things were a bit slow at work this morning, which was probably a good thing.  I just wasn't feeling great.  I took a few minutes to look at a few websites about this wonderful disease I have and everything  I came across let me know what I was feeling was normal.  Well, normal for a Parkinsons patient. 

Anyway, this afternoon I headed to the hospital to be with my uncle.  He was having a procedure done, and I was waiting in a room with about 15 other people.  I was told someone would come and get me when it was complete.  As I sat there, I happened to look up to see them pushing him down the hall.  I jumped up to  follow, when my right leg thought it was still time to sit a bit.  The next thing I know I have done almost a perfect belly flop, minus the water of course.  Now this was fucking embarrassing. 

I could feel everyone staring and heard someone say "that poor thing".  I jumped up grabbed my things and shuffled out as quickly as I could.  The hallway seemed miles long.  I could hear that woman's voice in my head again "that poor thing".   I had to stop and compose myself  before I seen anyone.   At that moment something entered my head that I never wanted to think.  WHY ME?   Is this the way things are going to be?   I didn't like that woman's pity, but I was beginning to feel it for myself.   I just couldn't help it, I lost it., right there in a dingy colored hallway that smelled like ass. I stood  sobbing like someone who had just seen there prom date leaving with the prom queen.  I don't think I will ever forget how I felt at that particular moment.  It hit me, hard.  These are the fucking cards I have been dealt.  In this game you get no other cards and folding isn't an option.  Sorry, this has not been a good day.