Advice

Well at the urging of my neurologist and a new found friend, I'll tell you about her later, I made an appointment with my general physician for a physical.  Now, I have seen my share of medical professionals in the last two months, but they have all been to diagnose, discuss and ponder my new found friend Mr. Parkinson's.  I have not had a complete physical since before Parker was born.  So, the time had come for this well nourished, 39.9 year old girl to go get checked out.  High blood pressure, diabetes, and cancer all run on both sides of my family.  Apparently, people after being diagnosed with an illness such as Parkinson's tend to forget about the other things that can begin to change as we age.  Yes, I am going to be forty really soon, and I'm overweight   well nourished, and well, there are a whole lot of things in my life that need attention.  So, this morning I headed out to see my very handsome and very young doctor.  I realize that you are supposed to have someones permission to post their picture on the Internet, Aren't you?  Anyway, my dapper Doctor is now like the face of Methodist, seriously he's all over the hospital and in the little brochures.  This is for good reason, as I said he is very easy to sit and talk with.  So here he is

Let me tell you he is just as nice as he is gorgeous.   He was the third doctor to give me the great news about being a Parkie.  We sat in his office that day and talked like old friends.  Today was no different.  He came in and asked how everything was going, looked through the neurologists notes, and then explained some of the tests that he wanted to run.  He never once mentioned the fact that maybe I could stand to loose a pound or two.  I think he was being nice or figured I was the one hauling around all this extra weight, and I should be smart enough to realize it wasn't healthy.  All in all, it was a good visit.  In his opinion, I am relatively healthy, with the exception of the whole movement disorder thing.  I did ask him if Parkinson's was considered a disease or a disorder?  He asked me what I preferred we call it.  Disorder does not sound nearly as scary as a disease, so that is what we decided we would refer to it as.  I am suffering from a disorder, not a disease.  That makes me feel better already. 

Today has been a good day

I see dumb people

Today has been a day unlike any other I have experienced in my 39.9 years.  Morning started out just fine.  Dropped Parker off to catch the bus, yes I took him to the bus stop that is two whole blocks away.  I then stopped at the gas station, picked up my morning paper and soda and as I was walking out I noticed a man staring at me.  I gave him a half ass wave and he started walking over to me.  This didn't alarm me, as he was at least eighty years old and I had a good forty twenty pounds on him.  He asked me if he could ask me a personal question..  I said to the seasoned beau "ask the question, if it's to personal I will get in my car and leave."    It takes the old  fellow a few seconds and he says "do you have the same problem as Muhammad Ali?"   Wow, he was pretty observant.  I answered politely with a " why yes I do."   Then the old fucker starts telling me how Joe Frazier thought God was punishing the great prized fighter.  Apparently the old nosy ass had remembered at one point Joe Frazier had stated that because Ali would boast that he was the greatest and by changing his name that he was being punished by the big guy upstairs.  I listened to him ramble on for a few minutes and then excused myself.  It didn't take me long to try to find out if the old geezer was correct in his quotes.  Turns out he was.    

Joe Frazier Says God Responsible for Muhammad Ali’s Parkinson’s

Now, the second brainless person I had the pleasure of dealing with was one of the nurses from my neurologists office.  Remember the MRI, you know the test last week that nearly killed me, well not really but I felt like it for a while, anyway the result were back.  She begins by saying "apparently someone had a hard time with the MRI". I quickly interrupted the inane woman and said " There was no apparently about it and that person was me."  She half assed giggled and that pissed me off.  She goes on to say that fortunately the MRI was within normal ranges and she thought that the doctor would probably order more testing.  Now, a person who has Parkinsons' disease normally will have an MRI within normal range, so I asked her what other tests?  I promise you her answer was "well tests that will help us to determine what is causing the symptoms."  What symptoms, have they came out with a new test in the last week for Parkinson's?  I was confused at this point and ask her, "well don't most PWP (people with Parkinson's) have normal MRI's?"    At this point I could hear papers shuffling, and then there was this lingering silence.  I almost felt as though this was a prank call because her next question was "is this Holli?"  For fuck sake,   uhh yes this is Holli and would you like to start this conversation over, because I am really fucking confused? 

She does her best to apologize, but it was to late for all of that shit.  Just give me the facts lady!!  Turns out all of my tests were normal, once again confirming that indeed I have hit the jig jackpot.  I think from now on I will start each conversation like they do at AA.  Hello my name is Holli and I have Parkinson's and now according to Joe Frazier I should probably try to figure out what God is punishing me for?  Really, are people that dumb???

Today has been a good day.  Despite dumb people.

Just another Sunday

Well, my alarm sounded at precisely 3:30 this morning.  This was allowing thirty minutes for meds to kick in and the other hour to get myself ready, Parker up, load the car and  be on the road at 5.  The first part of our morning was perfect. Well , besides the fact that I am not accustomed to driving in the dark, as this well nourished girl is usually home way before the sun sets.  We were off to one of Parkers last regular season bowling tournaments.  He would be bowling at a familiar house (that's bowling lingo for the establishment that you are bowling at) anyway,  it's an easy drive and the first half hour I spent thinking about the people we would be seeing.  We have a group of friends at every tournament and I hadn't seen most of them since before Thanksgiving.  Needless to say a few things in my life have changed.  I was a little concerned and even considered not taking my meds for fear of the jig kicking in full force.  It is tight quarters at the youth events and constant twitch or tremor was not going to go unnoticed.  I forged ahead and figured it would all work out and it did.  I'm quite sure that some noticed my shimmy shimmy shake, but they were all kind enough to talk behind my back, so all was good.  Let me back up, on the way there we stopped at Denny's in Normal.  Lets just say I may have figured out why they call it the Grand Slam breakfast.

The end result looked something like this.  It all started when a group of about twenty late teens, early twenty somethings were attempting to leave this fine establishment after what I am assuming was a great night out.  They all seemed very happy, until one of the girls throws a glass at another girls head.  I must tell you she missed her calling, because that was a 90mph fast glass if I ever seen one. The full glass nails the oblivious, weave wearing woman directly in the head.  This is when the rest of the clan got involved. It looked like something from a movie.  There were men fighting women, men fighting men and the two girls that started the whole thing are in the parking lot rolling outside the window.  I heard the call go into 911, and at this point I was a bit nervous.  The uneasy feeling was soon replaced with hysterical laughter.  One woman apparently lost her shirt in all of this and was wandering aimlessly in the parking lot.  By the way, she evidently lost her jacket as well, because the only thing she was sporting was skin tight pair of jeans. I quickly turned to my fourteen year old who was going to be told to look the other way, but it was to late. His face let me know, he was laughing at the same thing that I had just witnessed.  The police soon arrived and the sun had came up, we ate our breakfast and enjoyed the live version of cops. 

A good day bowling in Joliet was over shadowed by a great episode of cops, live from Normal, Illinois. 

Today has been a good day.

Control freak

Thank God for the Internet. No--really I am not sure how much books would have cost me to begin learning about this shit pot of a  disease. I guess- - well I know, I am a bit of a control freak. Learning all I can about this fucked up disease makes me feel a bit more in control. I have been this way my whole life. When most kids were picking teams I was figuring out new better rules for the game. Not that they needed to be changed it was just,  I like things my way. So this is why so many times in life I struggle. Oh, the old saying when life gives you lemons you must make lemonade. Yea, well fuck all that. I want to change the recipe. I need one person squeezing the lemons--one person measuring the sugar-- one person to stir and I'll decide what we do with the final product.  I would say this makes me sound a bit controlling.  But, doesn't life make us all a  that way?  Can we really just sit around and wait for others to decide which direction our life will take?  Someone has to be steering this ride of life.  I have been steering for a very long time, and now it feels as though my Volkswagen to the future is set on auto pilot and I have no control.

Please note the over the top Volkswagen above,  I may not be able to control everything but if  my journey ahead is going to be a shitty one, I am travelling in style.  This is going to be my new approach at things.  I am going to accept the things I can not change. I can not change the fact that I have hit the Jig Jackpot.  My body at times is going to have a mind all it's own and that's how it is.  I have to accept the fact that this isn't a game that I can change the rules on.  I am simply put, a pawn in the game of life.   Just  to set the record straight here, I am not giving in.  I will not lose.  I am just adjusting what I consider a win.

Just give me the facts

Shortly after I was diagnosed,  I was obsessed with reading other PWP's (people with Parkinson's) blogs.  I was so curious about other peoples daily lives.  How they felt when they woke up, what the meds made them feel like,  how long they had this shit pot of a disease and  what did they tell their families.  I must have started to read at least three hundred before I was left with the question,, are all of these people doctors?  Seriously, most of the blogs I came across were all about statistics and medicines that were all foreign to me.   I appreciate the fact that these people were gracious enough to take time out of their busy schedules to post, but where the hell are the real people?  The people that are going crazy because they haven't pooped in four days?  Where are the people that are freaked out because the dreams they have are so fucking vivid that they awake from a dead sleep in a panic?  How about the women that are seriously pissed off because they sweat so bad at night there hair is stuck to the pillow from all the hairspray they didn't get out the night before?  Ok, maybe that last one is me, but it happens.  Now, I must admit I have found a few that I can totally relate to.  They speak more about feelings, and less about the numbers surrounding the disease.  To them, I say thank you.  For my pocket pal of facts about Parkinson's, I am appreciative.  Every time I experience something I begin to wonder if it's normal or normal for someone with Parkinson's.  Some people may think that this makes me look stupid. Why would a forty thirty nine year old women feel the need to use the word poop?  The simple fact is, that's me.  I have questions.  I want to be able to ask simple questions to people my own age, that are going through the same thing.  Truth of it is, I have an old persons disease.  There I said it.  Only ten percent of people with this shit bag of a disease are diagnosed under forty.  I know  others out there and I pray I find some soon.   It would be great to be able to sit and ask simple questions to someone that really understands. 

Well, today is a new day.  I was wide awake at 5:30 to meet up with the little yellow fellow.  For those of you that are new to my blog, the little yellow fellow is what I have named my pills.  The pills that at one time through me into a  panic attack after reading the side effects.  I am one of the lucky ones, I have had no problems at all, except for fatigue.  I have touched this subject before, but I really need to act on it.  I have read all the articles about  fatigue and every article has the same happy ending, exercising will give you energy.  I seem to find the energy to get up and cook dinner or at ten o'clock at night I can muscle up the energy to get a snack.  This leads me to second problem, I love to eat.  I don't consider myself picky per say.  I like what I like.  Most of the likes involve an overwhelming amount of carbs.  This love and the fact that I shudder at the thought of exercising has left me with a "well nourished" body.  A well nourished body that is almost forty and now shakes like a quarter operated bed at times. 

I do not consider myself a rookie at this weight loss gig.  I have over the years lost hundreds of pounds, and that is no exaggeration.  I think my first crash diet took place between my junior and senior year in high school.  I lost about forty pounds and must admit felt really good about myself.  It didn't take long to get a new boyfriend and start college that the pounds came flying back home and they brought about ten friends with them.  That is the way my weightless has always been.  There are times when I try to convince myself that I am ok with being over weight.  I would give myself the "oh you are perfect the way you are" speech.  That is bull shit.  I have seen all of those women on Oprah telling their stories of loving the fact that they are large.  I would go for broke and say that if they had the choice, they would be sporting a Tyra Banks figure as well.  Tyra as in the skinny Tyra, we all seen the cover of the Enquirer where she was looking a bit hefty as well.  I guess it comes down to will power.   I am at the point in my life where it isn't about wearing a size 2, but being able to button my own pants.  Keeping my body as healthy as I can.

I seriously love this woman.  She is real.  She has lost and gained as much as I have over the years.  She stated in an interview that at her age it's all about getting thin for her and her children.  She wants to be healthy.  I am right there with her.  SO,  I am off to take Parker to work out.  I  may even go for a little walk.  I can't change the disease, but I can change the person dealing with it.
Today has been a good day.

Patient of the month

This is pretty much how my day began.  Well, my knees are not quite that large compared to my legs and just for the record they were perfectly shaven.  I went to the Kid Rock concert last night, couldn't take the chance of getting back stage with whiskered legs.   This appointment had been scheduled for a few weeks. Therefore, I had plenty of time to worry my little mind about it.  I had even jokingly said, "can't wait for them to say hold perfectly still."   The torture chamber was scheduled to begin at 7:30.  At 7:45 I was informed that I needed a pregnancy test, I am only assuming this is routine and not because I look so well nourished.  Me being Polly prepared had emptied my bladder not once, but twice prior to my appointment.  Approximately one gallon of water and two separate trips to the little girls room, I had just enough for the kind lady to perform her test.  I will spare you all the details of the first trip, let me just say that my shimmy shimmy, shake made it rather difficult to hit that tiny cup and I now know why there is hand sanitizer everywhere in a hospital.  Needless to say, the test was negative and I was cleared for take off.  Well, sort of.  The ever dreaded question was then asked  "are you going to be able to hold still for thirty minutes?"  Ok, are you fucking kidding me?  I am here for tremors on my entire right side at this point, and you think I can just shut it off?  I am not some cheap ass vibrator that just quits when my batteries run low.  A phone call to the lovely Neurologist and one small pill later, I was tired enough and was then prepared for battle.  They started with an exquisite little bootie that covered my hair and placed a pillow under my legs.  Next they strapped my right leg to the table, placed tiny pillows on each side of my head and lastly a strap across my forehead and I was ready to enter the tube of terror.  The thirty minutes actually flew by, oh did I mention earplugs?  Oh yes, I looked pretty chic at this point.  They then rolled me out and put in an IV.  They said the next part would last only five minutes and I would be free.  Well, the gallon of liquid I ingested earlier had now filled my bladder and I now felt as though I was carrying a watermelon inside me.  In the chute I went and it hit me. 

I was sick.  I had this feeling before, but it was usually after a fun filled Saturday night.  At this point I am flat on my back and my head is strapped to the table.  There was no stopping the inevitable, I was going to loose it.  I yelled that I was going to be sick and at this point I am assuming the little MRI man called for back up.  They were quick to release my head and roll me on my side.  I felt like one of the pumpkins that all the inside had fallen out of.    

I was quite embarrassed and scared at this point.  By the look on the technicians face this was not how he had planned his morning either.  He then said to me "let me go see if we got all the pictures we need."  I was quite spirited when I explained to him that indeed he had all the pictures he was getting and now would be a good time to let this well nourished girl get cleaned up.  I left the hospital a short time later.  I don't think I will be getting any patient of the month award. 
Today has not been the best.