Short trip

Well, yesterday was supposed to be the unveiling of the new billboard.  I'm not sure why I felt the need to drive over there and see it.  I really don't know why I felt the need to go alone.  I had actually forgot that it was supposed to be up until about three o'clock.  I was trying to talk myself out of driving all the way over there, just to see something that I had already seen.  This may sound strange, but it was as if this may make it more real.  I know that sounds ridiculous considering I have sat and heard the same words from four medical professionals "There is no doubt in my mind, you have Parkinson's disease."  I have replayed each one of the doctors, time and again saying those words, yet somehow it just doesn't seem real at times.  Yes, my body knows that something is terribly wrong, but couldn't it be something else?  Something that can be treated?  Something that there is a cure for? 

The drive over there was actually quite nice.  I didn't have to be anywhere at any certain time, and really took time to look around a bit.  Well, until I realized I was driving like an old man in the left lane doing about 35 in a 55.  Ooops, sorry to the traffic I held up for about two miles, but there were things that I had never taken the time to notice.  I had just gotten on to Knoxville, now keep in mind I drove this rode for two years everyday, and came upon a building I had never seen.  I passed this building everyday for two years and never even knew it existed.  Then of course, I began to wonder if my whole life is like that.  Do we become so focused on certain things, that we loose sight of everything and everyone else?  This was a building people, a big fucking brick building that had been there for years and I had never noticed it. How many other things in life do we just ignore, turn a blind eye to, overlook, tune out or simply take no notice of?  I know I am rambling about a silly ass, fifty year old building, but I couldn't get over the fact that I had never noticed it before.  I made a vow to myself to start paying attention, not while driving, but in life.  Sounds corny, but how many things have we all let slip right by us because we are so self absorbed that we forget about others?

As I got closer to the location, it began raining harder.  My first thought was that I'd never get a good picture in the rain.  My second thought was that people would be staring at the well nourished girl standing in the rain to take a picture of a billboard.  I was determined to sit til the rain let up a bit, I had came this far to see a silly billboard, I wasn't turning back now.  I came up on the intersection and it was really busy.  I had to do a U turn to see it properly.  There it was, an advertisement for Carlos O'Kelly's.  Apparently the deadline was not met.  I would have to wait another day and burn some more 4 dollar a gallon gas to see myself blown up about 12 times my normal size.  It wasn't a wasted trip.  I had learned a few things on my little drive.  I am going to slow down, not that I have much of a choice anyway.  If I walk to fast my right foot gets a bit confused and I end up belly flopping, but really slow down and take time to notice small things. 

Small things like, brownies and apple cheesecake.  I couldn't justify burning all that gas and having nothing to show for it.  So, a few blocks south and I ended up here, at the Le Bakery.  Twelve dollars later, I headed home in the rain, thinking about small things, like a glass of milk to go with the cheesecake.

Today has been a good day.

Rainy days

Waking up to the smell of rain, listening to it hit the windows, the cool air, all of this made me want to stay in bed this morning.  I dearly love mornings when you are able to just lay around, no need to be anywhere at any certain time and everyone else in the house feels the same way.  I have written before that I started this blog as a way to always remember.  Dementia, as many of you are aware, is my biggest fear.  So, if one day I am unable to remember what a rainy day felt like when I was 39.9 years old, maybe this little blog will be just the thing to bring a bit of it back to me.  On a brighter note

The billboard is already to go.  It is set to be up on the 18th of April, I believe the intersection is Sheridan and Glen in Peoria.  I was overwhelmed with the comments on Face book.  Some of them actually brought me to tears.  People that I haven't seen in a good many years messaged me, friends and family reposted to their own status.  I tried to thank everyone, but it just doesn't seem enough.  I hope that those of you who sent a kind word, or reposted know how much that meant to me.  This is all about awareness, and honestly I feel as though it has done just that and hasn't even went up yet.  I am still a little nervous about what it will look like up, but it really doesn't matter.  People are learning of this shit pot of a disease, and that is what it is all about. 

I have been thinking of doing some type of fund raiser, to support Team Bohlander.  I have organized benefits and rides before, but was thinking of something different.  If you have any ideas, please shoot them to me.  It can be something small, or something on a larger scale as well.  I had someone offer some space at the Marigold festival, just not sure what to do.  Motorcycle rides always seem to go over well, and I'm sure I have a few people out there that would help with that.  Again, I appreciate all the kind words, and will update this later.  I am addicted to the Twilight series, and today is the day to get caught up.

Today has been a great day.

Awareness

Well, apparently Michael J Fox is not the only person that will be bringing awareness to this shit pot of a disease.  A month or so ago, I was approached by a local woman about appearing  in an ad for Parkinson's awareness.  She explained to me that her husband was living with Parkinson's and knowing this disease I quickly understood that she may not have Parkinson's, but she also lives with it everyday as well.  The energy and determination this woman has is unbelievable.  She is determined to make a difference.  How do you tell someone like this no?  Not that I didn't want to do it, but it just seemed a bit foreign to me.  I don't even like getting family pictures taken, let alone ending up on a billboard.  I agreed to help and didn't hear anything more about it until Friday.  I had a message on my desk to call Val, and I swear to you the first thing that went through my mind was, you should have started that diet.  They say that the camera adds pounds, how many do you think it adds when they blow you up to billboard size?  I was nervous to even return the call, but I did and I was correct.  I needed to meet with them on Monday for our pictures.

Monday morning arrived and I was planning on what to wear.  I was sure that Stacie and Clinton from TLC's "what not to wear"  would soon be arriving.  Seriously people, what does one wear when they are going to be blown up and placed on a fucking billboard?  I decided to play it safe with a white sweater, secretly hoping the background would be white and I might just blend in.  The photo session was quick and painless.  The people were very nice.  I don't want to tell to much about the billboard, but there is a little boy that will also be on it.  He is simply adorable.  I was told that his father also suffers from Parkinson's.  This got to me a little bit.  This little innocent child is going to be affected by this shit pot of a disease in so many ways.  Looking at this angelic child, I knew I had made the right decision. 

I have been told it will be up yet this month and that it will be at a pretty busy intersection in Peoria.  Maybe, this will be a tiny part of helping to find a cure.  Maybe, this will allow that beautiful little boy some quality time with his Dad.

Today has been a good day.

Nothing New

Well, I headed to Springfield this morning in hopes of getting some good news.  I still am not quite sure what I was hoping for, maybe in the back of my tiny mind I had visions of some well informed physician telling me that my diagnosis was wrong.  I was thinking on the way there and by the time I arrived I had done a pretty good job of convincing myself that it was totally possible the other four medical professionals could be mistaken.  I mean, I watch mystery diagnosis and some people go years being treated for an ailment, to find out later that the first diagnosis was wrong.  I know that is television and unfortunately this is real life, but come on it could happen.  Anyway, the hour trip was filled with anxiety of explaining this all to yet another doctor, but it really wasn't to bad. 

The first appointment was with a physicians assistant.  She seemed pretty nice.  She asked some pretty basic questions and then she said the ever dreaded word "exercise".  I have to tell you, this lady did not look like she was using her membership to local gym much.  She was quick to add that she knows how hard it is to get into a regular routine with exercising and hoped that I realized how much it would help me.  I appreciated her little pep talk, and I really am going to start, no really I am.  All of my vital signs (I guess that's what they are) blood pressure, temp, pulse, they were all really good.

For my next appointment a kind old fellow lead me to a room down the hall.  This room seemed like a play room for adults.  Seriously, everything in there looked like over sized tonka toys.  They had me stack blocks, I shit you not.  Here I am 39.9 years old and people are watching me stack blocks and move marbles to the designated areas. I was just really getting into all the block stacking when they explained we would move to the next station.  This station was walking on a treadmill, and I did pretty well.  I didn't fall or trip or roll off the side, so I felt as though I must have passed this little strolling test.  Then, are you ready for this?? I had to jump rope.  Now, this well nourished girl hasn't jumped rope since Wilson School and that was a good many years ago.  I began to laugh as I was trying my best not to fall, but those silly school yard songs were dancing in my head "Cinderella dressed in yellow",,Anyway, I finished up there and for my last meeting of the day, I was taken to yet another room to wait for the good doctor.

I had high hopes of getting another doctor as easy to look at   understand as my darling Morton med man, but that wasn't the case.  I can understand how he has been apart of so many trials and such, lets just say that I'm quite sure he could retire at any moment.  He seemed nice enough, but those fucking brain doctors are all so to the point.  After once again being looked over and answering a shit pot of questions, he explained that he didn't feel safe changing meds or doing anything different, as this was the first time he had seen me.  He explained a few things about Parkinson's and the dyskenisia that I suffer from, but that was about it.  Oh, yea and he said that he was quite sure the diagnosis that all the other pill pushing people had given me was correct.  We set another appointment for a few weeks from now.  He wants me to come after taking no meds for thirty six hours.  Hmm this should be fun.  So, that was my day.  Didn't learn much other then the fact that fat people can't jump rope and certainly not if there reflexes on one side are diminished.

Today was a good day.

Another doctor

Tomorrow morning I will be heading south to see yet another doctor.  This physician comes highly recommended by my primary neurologist.  Apparently,  Dr. Tony (neurologist) feels as though I could greatly benefit from spending some time with Dr. Elble, he is head of the neurology department at Southern Illinois University and has been studying movement disorders for over thirty years.  Of course, I had to do a little fact-finding of my own, and I must admit he seems to be at the top of his game.  According to my findings, he specializes in young on set Parkinson's, and heads many of the clinical trials dealing with this shit pot disease.  It certainly can't hurt to add one more to the list.

Most that know me are already aware that I have a medical degree from the University of Google.  Yes people, if it can be found by googling it, I have read it, probably twice.  When my Mom was diagnosed I would sit for hours, and try to find all the information that I could to help make her life easier.  When I was diagnosed it was as if I had never heard of the disease.  Everything that I read took on a whole new meaning.  I was no longer reading as the care giver, I was not trying to help someone else, I was on an mission to help myself and I was fucking scared to death.  Truth be told, I am still scared.  I wake up in the middle of the night and just lie there wondering what the future holds for me.  I have said it before, but the dementia is what freaks me out the most. I know that it could be years, if I even develop that, but it still scares the hell out of me. 

I have decided to go to this appointment alone.  I am sure you all know that my dear sister felt it be her obligation to go as well.  I appreciate the thought, I honestly do.  I just feel the need to do this one by myself.  I have a list of questions for the new brain doctor.  I have a feeling he is going to wish Dr Tony had kept me all to himself.  None the less, I am going to try to get answers to questions, until now I have been afraid to say out loud.  I think that I may need this hour long ride home to just regroup.  Take in all the info this medical guru hands me and spend this time with myself.  We shall see what tomorrow brings, hope it's all good news.

Today has been a good day.
 
  

Not much new

Well, it's been a few days since I have updated.  No particular reason why, other then there just hasn't been much to update.  It seems as we get older, that we become more predictable. Our day to day life, seems to become week to week.  Just like many other women out there raising a family, working, and taking care of a house you seem to loose a bit of yourself.  We tend to always put the needs of others in front of our own.  In my opinion, and it is just my opinion others may disagree, but when you decide to become a parent, from that moment on your life is no longer just yours.  Everything in my life seems to revolve around someone else and that is fine by me, or at least it was. 

When I was diagnosed, I don't think I really thought about how much my day to day life would change.  I certainly didn't realize how anal I was about things.  The medical side of this shit pot of a disease is not nearly disturbing to me as the mental aspect of the whole thing.  Trying to schedule things during my "good times" and just coming to the realization that everything does not have to be done now, and it doesn't have to be done by me has been a battle.  I know that I can be a bit of a control freak and trying to let that go is not easy.  Asking for help, or better yet admitting that you may need help is a struggle.  I guess I like having a predictable life and this whole Parkinson's shit has really got me feeling a bit unstable.  This is something that I can not control and that in itself pisses me off.  

Today has been a good day.