41.9 years old

So, When I stopped posting last I was celebrating my fortieth birthday.  As some may remember I was 39.9 years old for quite some time.  I think our minds trick us at certain ages.  We are reminded of our twenties and where we thought we would be at a certain age.  I had chapters set up in my book of life.  The chapter where I turned forty was not exactly what I was expecting.  As I looked through a journal I had been scribbling in, I found something that even surprised me.  I was happy at 40.  Yes, I had a disease that will more then likely cut my life span a bit, but hey I was feeling good, meds were working and I had a 14 year old son who was my biggest supporter, besides my  bra.                                               

Mornings are still the hardest time for me.  I still awake early to down my little yellow fellow and his friends, but it just doesn't seem to work as well as it once did.  So, for an hour or so, I may appear to have a bit of the jig going on.  I always think of it as my morning exercise.  My legs are the worst, so this gives me a very good excuse not to do laundry in the morning, as I have to avoid the stairs.  Other then an afternoon nap and being up most of the night, I am ok.

I had left my last post stating how my views on "the right to die" issue had changed.  There was one particular instance that this really hit home with me.  I would like to share with you a little story.  I had posted on facebook about my dear friend (email partner) I will call "Mary". 

Shortly after dx I of course got a degree from Google on Parkinson's.  While studying hard to get this degree, I stumbled upon a message board, forum call it what you may, full of people who were diagnosed before the age of 40.  I quickly began following Mary's posts, as she was very well informed and had been living with the Shit Pot Disease for five years.  Hers did seem to progress quickly, and this did scare the shit out of me.  She was a book of knowledge.  When my foot gave me problems, she had the answer.  When I had nearly bled to death trying to shave my legs, she was there with a remedy.  So, you get the picture.  She was very kind, and would email me daily or at the least every other day.  She was a stay at home mom of two college students. They lived out east and by the pictures she had sent, seemed to have the all American dream, well with the exception of hitting the Jig Jackpot at an early age. 

I had kept most of our conversations to myself, as I did many things at that point.  I woke one morning to realize I hadn't heard from her in a week.  I sent off a cute little email and nothing.  She had not posted on any boards and quite frankly I missed her.  Then I remembered she had spoken of a trip the family was taking.  I knew when she returned she would get in touch.  A month passed, and no word.  I emailed for almost two months before I got an email. 

This is where the story gets long, so you can bail now.  Late one evening I received an email from my long lost friend, or so I thought.  I was so excited, figured it would be a novel so I grabbed a drink, a pillow and began to read.  Mary was not the one writing this email, it was her husband.  The love of her life, had found my email address in her laptop.  He was quite to the point and told me Mary was gone.  She had taken her life two months earlier.  He had not had the nerve to look at her laptop until now and seen all the emails I had sent.  He explained went on to explain, that it was like every other morning, with the exception he had to go to the city for a meeting that day, and left early on the train.  Both kids were away at school, and in perfect Mary fashion, everything was done meticulously.  She fixed his breakfast, sent a snack and he was on his way.  She then changed all the linens on the beds, put dinner in the crockpot.  Finished every ounce of laundry, headed to the store to fill the fridge and cupboards.  When all of her tasks were completed she called the gas company and said she thought she had a gas leak.  When workers arrived, the door was open and Mary was on the couch.  She was already gone by the time the workers arrived.  Suicide by overdose.

So here is the hard part.  He was asking if she had given any hints as to why she would do this?  He needed answers and honestly I probably could have given him a few.  He said she was perfectly normal. Oh for fucks sake, she wasn't normal. She had been fighting a progressive disease that was moving at the pace of an Amtrak in her brain.  I so badly wanted to now ask him questions.  Like, so in the morning do you really think she just stands by the toaster as to not burn your waffles?  No, her legs are hurting and it's much easier to just stand there.  Did you ever notice she was always up before you?  She got up early as to get meds kicked in before you seen her.  Do you really think she didn't want to sleep in the same bed with you?  Of course she did, but the leg cramps would have awaken you as well, so she makes excuse to sleep in guest bedroom.  By chance did you ever notice that you don't have a glass jar in the house?  This is because carrying glass jars in the house make a huge mess if you happen to drop them, not to mention getting a grip on a jar to open is nearly impossible.  Were you surprised at how good her hair looked lately?  She had a friend come over every other day to fix it, as her hand had a hard time holding the brush, not to mention with the tremors she would have had a bee hive hair do.  One last question I really wanted to ask him....Did you ever try and talk about how she was doing?  Don't let that, "I am fine" fool you, she was aching inside.  She was scared to death of embarrassing her family.  Her daughters still young with bright futures and a handsome husband that deserved more then what she felt she could give him.

I simply sent an email back stating how sorry I was.  I didn't have the nerve to tell this heart broken, still madly in love with his wife that I understood why she did it.  Please, I don't want people reading more into this.  I am doing well, and this is not something that I see in my future.  I will tell you this, she had every right to do what she did.  I believe that a person deserves to die with dignity.  In the last year I have sat beside two of the bravest, most courageous people on this earth loose their battle.  It wasn't pretty, it wasn't fair, and it sure as fuck wasn't something I wanted to see.  I think of "Mary" often, I have only shared this story a few times.  It still hurts, although she wasn't a friend that I had drinks with, although we did joke about plastic cups and drinking only half a drink as we would probably spill a little.  We never had the opportunity to go shopping, or just sit together and talk.  I will forever be grateful for the months that she visited me via email.  The many times that I confided in her above all others, as she was feeling many of the same things. I guess I didn't realize to what depth her disease had gotten to.  I erased her email, as I was afraid on a drunken bad night I would be tempted to send one last email.  An email that would upset her husband. I just wanted her to know I understood.  I totally get it.

Well Today is a good day so far. 

I'm Back

                                                          

It has been almost two years and many emails since I updated this blog.  I thought about starting a new one, but that would mean explaining much of my rambling, as well as much of the background of when I was diagnosed. So, for anyone new reading dont' be lazy just scroll to the bottom and read some of the older posts.  I have been asked so many times, why I stopped updating.  Well, honestly I began to feel as though the disease was defining who I was, or who others seen me as.  In some crazy way backing off of this and keeping  much to myself, well besides my facebook posts, would help me mentally. 

Two years?  Wow, It will take a few posts to catch you all up on some of the fucked up crazy things that have gone on.  Oh, anyone new reading, If you are offended by and occasional F bomb, you should probably go back to facebook and read about every ones problems on there. Lets see, I have officially made it through what my, not so good looking or good speaking neurologist called "the honeymoon phase." My first thought was this was a milestone passed in the journey with this shit pot disease.  Yea, not so much.  In a nut shell, it means the first few years are easiest once meds kick in.  Many may remember my little yellow fellow, well he has had to have a few more meds added to help him work. 
                                           

Well, maybe the photo is a bit of an exaggeration, but some nights it feels like it.  I am having a lot of sleeping issues, not that I cant sleep, it just seems my clock is set to sleep during the day and be up all night.  As many other Parkys (someone who is fighting this shit pot disease some call Parkinson's) Fatigue is a huge issue.  What the hell, it's nasty out anyway right?

Instead of starting out with all the changes, I will remind you all of a few things.  I hate when people tell me "they just love Michael J Fox"  I would never walk up to an alcoholic and be like "I just loved Betty Ford".  I still will not under any circumstance try to play Jenga, I fucking hate to loose as I always seem to be the one to cut the game short.  As much as I admire this man
                                                      

I hate being compared to him.  I didn't stand on a huge square mat, surrounded by ropes and take repeated blows to the head.  I have been known to hit my head on the cupboard door from time to time, but I am pretty sure this did not cause my lack of dopamine.  What did cause it?  Sure as hell wish I knew.  One man stated that "genetics is the ammo but the environment pulls the trigger".  This could explain why the number of people being diagnosed before the age of 40 has risen by 25% in the last ten years.  There is one thing that my views have changed about over the last two years.  I will explain what changed my feelings on this when I update next time. Today has been a good day.
                                

Hello 40!!

It has been a crazy couple of weeks.  I have sat down, on more then one occasion to update this page and never seem to finish it.  It seems as though there is always something to do, somewhere to go, or something pressing on television that I just cant miss.  So where do I begin?

The little yellow pill, yes indeed it appears that this will remain part of my daily regimen.  I went back to SIU, and was evaluated after being off meds for thirty six hours.  Thirty six very long hours, I might add.  I have no idea how this well nourished girl ever made it through the day without those little power pills.  My overly handsome doctor explained to me that once we started the meds, it would be hard to function without them.  He was so very right.  Anyway, the neurologist in Springfield simply stated that the diagnosis was correct and that the meds that had been prescribed were correct and he could see no reason for me to come all the way down there, when the neurologist in Peoria was doing a fine job.  I explained to him that I had been sent to him by this fine doctor in Peoria and his response was simply "I can't give you another diagnosis if that's what you want."    He wrote a few notes and out the door he went.  I left that day feeling as though I wasn't a rare enough case for him.  I pictured him walking out and telling the nurse "yea, just another Parkinson's patient, Next."   On a good note, I have adjusted the little yellow pill a bit.  I take one extra pill a day, this really helps avoid the "down times".  I have had a really good week and according to some doctors, once you tweak the meds to suit you, they may be good for up to five years.

Yes indeed, I just celebrated the 19th anniversary of  my 21st birthday.  Turning forty really wasn't all that bad. In fact, it was a blast.  I will post pictures and tell you all about the best weekend a forty year old, well nourished  gal could have. 

Today has been a good day.

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.