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.

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.

Awareness month

Well, it's the last day of March.  I am quite sure that I'm not alone when I say that I am ready for some warm weather.  As I sat at the dog park tonight, I began to think.  First of all people,  pick up after your four legged children, because I don't enjoy stepping in it, even in these ugly ass shoes. Secondly, April will be different for me this year.  Yes, yes, it will mark my fortieth birthday, but it is also Parkinson Awareness Month.  This is something that I certainly didn't plan on being aware of, or I should say that I didn't plan on thinking of this shit pot of a disease effecting me on a personal level.  My mother was diagnosed two years ago, and this may sound selfish, but it really didn't hit me until I was diagnosed.  I thought that I would answer a few of the questions people have asked me about the disorder, remember I don't like to call it a disease.  Kind of my little part in making others aware.

1.  Aren't you to young to have Parkinson's?    I have touched on this before, but no I'm not.  Ten percent of all people diagnosed are under the age of 40. 

2.  Does it hurt?   This makes me laugh.  This disorder effects every person different.  There are symptoms that are not real pleasant.  The rigidity, which many suffer from, can be quite painful.  When your on a down, or between doses of medicine, it can be quite hard to get around.  My right side is the worst, so my right elbow, and knee become very hard to move. The muscles feel very tight almost as if they are cramping, but the twitching or tremors that others see does not hurt.

3.  Did it happen over night?  No, not for me at least.  I have had symptoms for years.  The tremor in my right hand became obvious to others over night.  One day it was in my ring and pinkie finger and mainly when I was going to sleep that I would tremor, then one morning it was my entire hand.  Doctors dated other symptoms as far back as ten years ago.

4.  Could you have prevented it?   Researchers have not identified the exact cause of the disease and therefore without this information, preventing it is impossible. Most however, do believe that Parkinson's disease is caused by a combination of a genetic predisposition and environmental factors.

5.  How bad will it get?  The progression of the disease is not the same for everyone. Some individuals suffer milder forms of Parkinson's than do others and not everyone experiences all of the same symptoms or the same severity of symptoms.

6.  Could this be fatal?  I swear to you someone asked me this shortly after diagnosis, I was shocked.     Parkinson's has not been proven to be fatal although patients with it do have special health concerns. The disease may wreak havoc with the respiratory system, which could lead to pneumonia.  My doctor said to me that Parkinson's will not kill you , but you will die with it.

7.  Can you stop the tremors?  Yes, for a few minutes you can.  Think of tightening your stomach muscles, you can do this for a few minutes then you have to let it out.  It is almost a relief to stop trying.  Tremors are the same way.  If  i concentrate really hard they will stop.  It is impossible to do this for a long period of time.

8.  Does it effect you mentally?   The public often unfairly perceives Parkinson's patients as being stupid, rude or miserable. The reasons cited is that as the disease progresses, sufferers develop more and more problems in their ability to communicate with others. Problems with speech, swallowing, drooling, and jerky facial and body movements cause patients to be unfairly labeled. Some people unaware of a persons condition wrongly believe that person to be inebriated when they talk with slurred speech.

These are the questions that come to mind.  I know there are others, but these are definitely the top eight.  I hope that maybe by answering some of these that people will have a better understanding of the disorder.  Bottom line is that it sucks.  OH OH, I forgot a question.  

DON'T YOU JUST LOVE MICHAEL J FOX?   Yea, he's a great guy

Today has been a good day.
                                                                                                                                             

Medical Alert

So, what do you think about my new name tag?  I think it would be simply adorable with the right shoes, of course they need to be flat and have some top support. I do believe my flip flop days are behind me, along with long leisurely walks in the park.  That is, if I was the type of person that enjoyed long leisurely walks in the park.  This is something that I have been putting off for quite some time, I need to get my ass out of the house and exercise.  I know it will only make me feel better, but at this moment I feel quite content in my little office in my little house doing as little as possible. Hopefully warmer weather will bring some inspiration with it as well.  My handsome doctor was quite happy with an eight pound weight loss in  two weeks.  I explained to him that I had joined a fitness club and was running five miles a day.  The look of admiration soon faded as I then told him that this sinus infection that had moved in, and had left me with no appetite, but I was quite sure that the eight pounds would soon return. 

Some days it is rather hard to get around.  It feels as though your walking on rocks.  These seem to be the days that Mr Pakinsons is a little more noticeable.  These would also be the days that people tend to say the most irritating things.  I have visions of letting people know how I really feel sometimes.  To the woman who so lovingly explained to me that she was so happy that I was smart enough to realize things could be so much worse.  Yea, of course they could, but this is no walk in the fucking park either.  I try to stay positive, I do, but the fact that I have been given a diagnosis of an incurable neurodegenerative disease that will shred every ounce of dignity that I have, before taking my memory with it, leaves a person some what bitter and the fact that I can no longer wear cute shoes really pisses me off.  I know there are going to be days that I am angry and days that I will feel sorry for myself.  I just hope that days don't turn into weeks.  I need to embrace the good days, even if I have to wear ugly ass shoes.

Today has been a good day.

Proud Mama

Apparently, the fatigue I have been experiencing was not just a wonderful side effect of my little yellow fellow. You all remember the doctor that I adore, well not so much anymore.  He had the nerve to tell me that not only did I have a whopper of a sinus infection going on, but I tested positive for the walking pneumonia virus.  I had to listen to the little lecture about compromised immune system and listening to my body.  Yea, yea, yea,  just give me the prescription and I'll listen to my well nourished ass on the way home.  One of the meds I take is a slow release form of sinemet (my power steering flood).  I take this at bedtime and it's supposed to make the mornings a bit easier.  I personaly think they need to check the recipe on that one, because mornings have really sucked as of lately. I am still getting my morning meds in atleast a half hour before I even try to get out of bed, but even then it's been hard.  It seems as though it takes a couple of doses before I actually feel as though I'm not walking in sand.  The last few days I have taken it upon myself to up the dose, or actually to take the meds closer together and my legs are thanking me.  The antibiotics have also kicked in, allowing me to once again use my nose to breathe.  Now, if I can figure out a way to tell the gorgeous doctor over in Morton that I'm going to need my yellow fellows refilled earlier, because my degree from google allowed me to adjust my own meds, Iwill be just fine. 

If your a friend on facebook, you know by all the posts, that Parker and I headed to Joliet for a weekend of bowling.  We originally planned on leaving Friday morning, since mornings have been so pleasant for me, we took off Thursday night.  This would allow me a few more hours to get primed for the day ahead.  This is one spur of the moment decisions that I didn't later regret.  We had a great morning and it was followed up by a great afternoon at Town and Country Lanes.  Parker left Friday in sixth place and we were both very pleased.  A few hours of shopping and some dinner and we were off to the Bates nice motel.  This was a mighty fine establishment, let me tell you.  The only upside, was that we parked right outside our room, this allowed me to establish a quick get away, if need be.  Saturday morning we needed to be at the Lanes by 7 am.  That meant out the door at 6.  This well nourished girl raised a son that likes breakfast almost as she does.  I set my alarm for 4 am, this gave me a half hour of snoozes, half an hour for my meds to kick in and an hour to pack and get ready.  It does pay to be anal about schedules, we were out the door at 5:59.

This is how our day ended.  A third place medal.  We both thought it was second place, until we realized some creeper young man bowled out his ass the last game to drift in front of Parker in the standings. I could not have been more proud.  For nine games my little bambino averaged 198.6.  Not bad, not bad at all. 

When I started this blog, I had hopes of using it to reflect on things.  Dimentia is something that occurs in the later stages of Parkinson's.  This could be something that I have to deal with at some point.  It may be forty years from now and it may be sooner.  I pray that when I read this years from now, that I can remember how I felt when they called Parkers name in the closing ceremony.  I pray that I remember that my son was one of the few kids that raised is right hand up to his heart as they played the national anthem.  These are the things that I want to keep with me forever. 

Today has been a good day.

It's been a day

I thought that I had come to grips with this whole shit pot packed disease.  I really thought that I had a handle on the fact that YES, I now live in a body that can not be controlled all the time.  I thought that I was handling the whole jig jackpot quite well.  Then bam, one fucking question throws this well nourished girl to the edge.  It was a simple question, asked by a simple minded person.  "Did you have a stroke?"  I know, I stood there for a minute, I really could not believe she just asked me that.  I simply said "me, why?"  she goes on to explain that her and a friend had noticed my shaking, and the fact that I walked different. What the fuck ever. I just replied with, "didn't know it was that noticeable, thanks for asking.  I have Parkinson's."   Why I let this bother me so much, I have no fucking clue. She probably meant no harm, but isn't that quite rude?  Maybe if we were friends and not acquaintances and maybe if we were alone and not surrounded by people. Maybe, if I thought she really cared, and it wasn't for the sake of gossip.  Maybe, on a different day it wouldn't bother me.  Today was not the day.    Guess I need to start using that line   Hello my name is Holli and I have Parkinson's.  Not a fucking stroke!!!!!

Today has been a day.

Same school same feeling

Tonight I entered Broadmoor Junior High School through the same doors I had entered twenty six years earlier.  The school really hasn't changed much, besides the fact that it seems a bit smaller now. We were there to attend one of  Parkers last sports banquets as a junior high student.  I spent a good deal of my day processing the fact that very soon, my son would be a high school student.  As the time grew closer, I began to worry about who I may see.  Just walking down the hall, or passing in the parking lot, the jig  would probably go unnoticed.  If by chance, I was seated next to you, it was sure to draw some attention.  Other then the fact one could end up with an elbow in the side, just the utter movement would probably make the ordinary person a bit nervous.  I felt like a teenager going to school for the first day again.

In the spring of 1984, our class of mighty Warriors were told that our final year of junior high would be at a new school.  Budget cuts had lead the district to close, in my opinion a landmark of the city. A year when every teenage girl dreamed of being Molly Ringwald and meeting the perfect boy, I was being thrown into the Bruin den.  The summer leading up to my eighth grade year, I had all but protested the fact that I wasn't going to that school.  Many of my friends were being shipped across town to Edison, whcih was no better, but I had no intention of replacing the yellow and blue school colors with green and white.  I was lucky, my best friend was also being forced to call herself a Bruin and we did rest a bit better knowing we had each other.  I slept very little the day before heading off to unknown territory.  Would the other kids accept us?  Would they feel as though we were invading there domain?  Would they simply greet us with smiles and act as though we had always been there? 

You would have thought we were going to meet our love of the 80's, Rick Springfield.  We were so nervous that first day, much like tonight.  As I walked on to the sidewalk tonight, those same feelings came back to me. A part of me searched for my best friend, where was she when I needed her again?   Twenty six years later, I was once again hoping for acceptance.  Hoping that noone noticed anything new.  Much like 1984, I walked with my head held high, of course I walked a bit slower, and instead of leaning on my friend, I felt comfort of my family around me.  I watched as they praised my only son for working so hard, and to that gave him the most improved player of the year.  I could not have been more proud, well unless he had gotten to wear blue and yellow and call himself a Washington Warrior.  To be honest, that school was good to me so many years ago,and again tonight.  There are going to be many firsts for me.  This fucking disease seems to have taken a little bit of me.  I am holding on tight, to everything else.  It is not going to get me

Today has been a good day.

Yes it can happen to young people

Last night a local family put on an amazing event to raise money for Parkinson's research.  I was surprised by the people that came to show their support. I had posted this on Face Book a time or two, and there were fliers around town.  This family had really put a lot of time and love into this event, but one person in particular touched me like no other.  "Touched me like no other" that sounded funny.  I will rephrase that, one person that showed up had driven an hour and a half to get there.  I had not seen Becky in a very long time and when I seen her, I asked  "do you know the family?"  She had a weird look on her face and she said "I'm here for you girl."  She went on to explain that she did not know that Parkinson's could effect young people.  She had spoken with one of her coworkers and they had told her about an NBA player they knew, fighting the shit pot disease as well.  When she seen the post on FB, she then began to read this silly blog and she wanted to show her support.  I truly hope that she reads this post, and knows how much it meant to me that she would take three hours of traveling time to come to the benefit.  I apologize for not getting to visit with her more, and one of these days, this well nourished girl is heading to the Quad Cities to see her. 

If there was one thing I heard over and over again last night, it was "You're how old?".  Mostly this came from people I didn't know.  Obviously, people who know me, pretty much know how old I am.  There were several people that started out the conversation that way.  This inevitably lead to the fact that they had no idea Parkinson's effected young  fairly young people.  In really simple terms, ten percent of all people diagnosed with PD, are forty or younger. Approximately 50,000 new cases of Parkinson’s Disease are diagnosed each year in the United States alone. So, I'm no math wizard but that means, I am far from alone in this battle.  I guess, I really shouldn't be so surprised that people aren't familiar with the disease disorder.  Why in the hell would you waste precious time reading up on something like that?  When my Mom was diagnosed a few years ago, I did my best to learn about it.  I knew the symptoms, the drugs used, the importance of exercise, but you read things differently when they pertain to you.  Things that worry me about this fucked up disorder, would not necessarily cross the mind of someone thirty years older.  Not to many seventy year old people worry about their teenage sons friends asking questions.  Well, unless your  Rod Stewart and continue to have babies in your sixties. I was glad to be able to "educate" a few people on the fact that it indeed does happen to youngens.  Unfortunately, I was educated on the fact that many young people with this shit pot of a disease prefer to be on the down low about it.

PWP (people with Parkinson's) may share symptoms and some of the fears that come along with the diagnosis, but depending on your age it effects us very differently.  I would love to talk to someone my own age that is suffering with this as well.  So many nights I lay in bed and wonder if the things I think about are normal and do others feel the same way?  I have the best friends and family in the world, but it's just not the same. I would compare it to girl talk.  Some things you only talk to your girl friends about.  Some things only another PWP would understand.

Today has been a good day.

Glad I didn't know

Recently a question was asked of me and I can't stop thinking about it.  I guess, I should start by explaining a bit.  At one of my many doctors appointments, they had me to try and remember any doctor I may had seen and for what, in the last fifteen years.  To be honest, it wasn't real tough.  I wont bore you with the details of them all, but the majority could be related to Parkinson's.  So, have I had this shit pot of a disease disorder that long?  It is quite possible, so that leads me to the question.  Would you have had children, knowing you had hit the jig jackpot?  This question keeps running through my head over and over.  Not actually trying to find and answer, but because I feel so blessed, not to have known.  I am so fucking glad that fifteen years ago, Parkinson's was not even a disease that I was remotely familiar with.  I would have had to analyze every aspect of it.  Would I  physically be capable of caring for an infant?  Would I mentally be able to raise a small child?  How fast will this disease progress, and on and on. If indeed, I had this disorder fifteen years ago, I thank God for not letting me know. 

This young man is my heart and soul and I can not imagine a day in my life without him.  Instead of feeling angry at the fact that my well nourished ass is having a hard time walking, I feel blessed to have my son walking beside me.  Instead of feeling uptight about the shimmy shake I have acquired, I feel loved when my son is there to lend a hand.  Instead of wondering what I would have done, I celebrate what I have done.  I believe that there is a reason that I am one of the few people my age living with this godawful disease, but I also know that there is a reason that I didn't know until now.  Many nights I have gone to bed feeling cheated, so to speak.  Feeling that life isn't quite fair some times, but not tonight.  Tonight, I am feeling so blessed that I didn't know earlier in life.  My life could have been so very, very different.  For that alone I am thankful.

Today has been a good day.

The future

I have heard time and again, people saying "just take it one day at a time."  I usually hear this shortly after someone is asking how I'm doing.  When I tell that I'm doing well, or that I am just fine, they always seem to end our conversation by stating  "well, you hang in there, take it one day at a time".  That is one of the most fucked up things, because I can't just take it one day at a time.  Everyday I have to remind myself that this disease  disorder is not going to go away.  Yes, medications can help to alleviate some of the symptoms, but it is not going to cure me.  Just getting through today, is not getting me one day closer to living without this shit pot of a disorder. (remember we decided it would be called a disorder, not a disease)  I am seeing a new doctor in April.  I have been told he is the best in this part of the country.  He specializes in movement disorders and according to neurologist  #1 he prefers dealing with younger people.  Remember I am only 39.9 years old and compared to the majority PWP (people with Parkinson's)  I am young.

When I was speaking, well chatting, well typing back and fourth with a new found friend in Pennsylvania about this new neurologist, she asked if I was willing to be a part of any of the new medicals trials they have for Parkinson's?  I had not really thought about it before.  Patty, is a wonderful lady who just happened to hit the jig jackpot as well.  She was 37 when she was diagnosed, and is now 46.  She is very knowledgeable, yet apprehensive about many of the medications that are out there.  Time and again she has said to me, "be careful, this is the same body your going to have in twenty years."  I keep reminding her that my body is going to be much thinner in twenty years, but she comes back with "I don't care if your 120 pounds, if the meds destroy your liver it really wont matter".  She is right.  I have to make decisions today, that I can live with in twenty years.  Many of the newer meds have not been out twenty years, they have no idea about long term effects.  To the average seventy year old, they would be willing to take a medication even if they were told they could  end up with renal failure in twenty years, for fuck sake they would be ninety.  I on the other hand would be 59.9 years old and wanting to play with grand children, not spend hours a week on a dialysis machine.  I guess it would have to be a pretty safe trial, for me to be a part of it. 

For someone getting away from drugs or alcohol, one day at a time is great.  Someone who is young, suffering from  a shit pot disorder, one day at a time just isn't an option.  Every decision I make now, will greatly effect my future.  I realize that life in general is like that.  Every action we take has a consequence, rather it's the schools we choose, where we decide to live, who we associate with, or what meds we may try.  I have always been a gambler, but I'm not sure that I would put my kidneys or liver up for the chance of winning it all. 

Today has been a good day.

Weekend in review

I had a wonderful weekend.  I had the pleasure of spending a good deal of time with a special  ten month old little girl.  Many people would not consider a Saturday night being spent changing diapers and wiping snotty noses as pleasurable, I on the other hand  found it to be just that.  A night down memory lane, a night like so many others that I have had, when my own son was that age.  Reality set in within the first five minutes of having her.  My body, besides being fifteen years older, is just not the same.  In my mind I could hear the first Doctor that had diagnosed me saying "you can do everything you always did, it's just going to be harder."  I took his word for it and treated it  like a challenge.  Really how hard could it be?  I raised a baby, it wasn't like shitty diapers changed themselves in my house.  Parker didn't bath himself at ten months, or make his own bottles.  I had been there and done that. 

She had been with me a short time and it hit me, diaper changes.  I prayed when I looked under that adorable outfit that there was a plastic huggies.  I hadn't even thought about so many mothers nowadays going back to cloth diapers.  If I had to use safety pins, this bundle of joy could be in serious pain before my right hand could get this mission accomplished.  I was elated to find out her mother could give a rats ass how long disposable diapers stay in our land fills.  They were good old Huggies and no pins required.

My next thought went to picking her up and carrying her.  My right side is just not as strong as it once was.  I thought about all these pictures you see in the tabloids of high fashion models carrying there young, always propped on one side, looking quite graceful.  Now, I know I'm not looking like that, my point was that I would use my left side to pick her up. My mind kept going back to a day in the kitchen when I dropped a gallon of milk, I was sure the outcome would be much worse dropping this angelic baby, so extra care was taken and all was well.

I decided on the kitchen sink for bath time.  Seemed much easier then leaning over the bath tub, and quite honestly once I remembered to move all the knives and forks from the dish drainer next to it, it worked like a charm. I had forgotten how slippery the little bambinos can be.  Lets just say I pinned her like a pro wrestler, she wasn't getting away from this proficient parent.  I have missed the smell of freshly bathed baby. I haven't however, missed the smell of freshly soiled diapers.  I was reminded of that this morning.  Apparently, I dumped one in the kitchen garbage last night.  The stench quickly reminded me why I started taking my rubbish out nightly before going to bed.

When bedtime came, I was sure this would be what she was thinking.  I wasn't sure I would be able to walk the floor to get her to sleep.  We no longer have a rocking chair, and the thought had even crossed my mind about a car ride to get her to sleep.  All of that was thrown out the window as I laid this little angel down, there was not a sound.  She simply smiled and fell fast asleep.  I was a bit worried about taking my night time meds and not hearing her if she was to awake.  Guess I worry to much, last night every noise in the house woke me up. 

Reality check, I'm not 25 anymore.  Reality check, I have Parkinson's, but it didn't have me this weekend.

Today has been a good day.

Terrible movie night

I decided tonight would be a relaxing, no laundry, no worry, just kick back and watch a movie kind of night.  My first mistake was the movie I picked. Remember a few posts back, where I spoke of a new movie out, the one with the young lady that was suffering from Parkinson's.  At that time I  felt that it would be against my better judgement to watch that particular film.  There was good reason for that, so why the fuck did I decide now was the time?   

If I were anyone else, I would say that it's your typical chick flick.  Boy meets girl, boy falls in love, girl dumps stupid boy, boy gets educated and wins back the girl.  End of story.  I read so much more into this shit packed flick.  The normal eye wouldn't have seen how most every time she was laying in bed she was rubbing her foot, this helps to take away the sharp pains that shoot through your feet for no apparent reason, when just lying there.  Maggie (main character) seemed car sick at one point.  I have had this thousands of times when not driving.  Silly girl can't open a fucking pop tart for silly boy after a night of heated love.  That's because she just got out of bed and your fucked up fingers aren't connected to your brain yet.  One particular scene, silly girl is nervous and the twitch hits.  I swear to you ,when I seen her face and hand, I knew exactly how she was feeling, I mean if she was real and not an actress.  There were little things through this entire film that just smacked me in the face.  I probably missed a dozen or so, for the simple fact that I couldn't see the tv and was to lazy to get up and get a Kleenex.  Would I watch it again?  That would be a negative.

I will leave you with a few quotes from the movie.

1.  People suffering from Parkinson's say "fuck" a lot. ~ ryan corderman
2. Spilled milk is nothing worth crying about. Spilled vodka on the other hand is a big freaking deal!
3.Parkinson's conventions are better then comedy clubs

I'm pretty fucking sure the first one to be true, the second one was just damn funny and the third, well it just stuck with me.  Sometimes things are funny, no matter how bad they really are, you have to laugh.  At one point an older gentlemen told the young lad who was in love with the young Parkinson's patient to run.  "Grab your shit now and go" he said.  "It's gonna get real ugly, she's going to forget how to dress, to feed herself, hell she'll forget you."   Yea, see why this well nourished girl is banning this movie forever, but it was just a movie right?  We don't all end up like that right?

Today has been a day.

Holli Proof the house

After reading thousands of articles concerning the shit pot disease I am dealing with, one thing keeps coming up.  Well exercise, but I am still just thinking about that one.  It is safety.  There are times when your body just isn't where it is supposed to be, meaning when you expect your right leg to follow the left and it remains planted firmly behind you.  This will time and again leave you picking your well nourished ass up off the ground.  Many of you know me, and I am sure many would agree when I do something, I really do it.  I have decided, with pushing from others, it is time to get some hand rails etc. put up around the house. I am not going to go over board on the safety shit.  I don't think I could ever use a four point harness on my dog, like above, but I am going to be more careful.  I find it ironic that just the other day I found an outlet cover still on in the bedroom.  The outlet covers that keep tiny people from inserting tiny objects into them.  Yea, Parker is almost old enough to have a drivers permit, I think I can safely remove all child proofing objects.  Out with the old and in with the new, I guess.

I know isn't that beautiful?  Everyone is going want one of these groovy little gadgets around their toilet.  In all honesty, I am excited about this. Imagine if you will, doing about a thousand squats.  That familiar burn and stiffness the next morning in your upper legs.  Yea, that is how my legs feel for about the first two hours I am awake.  It makes it nearly impossible some mornings to get up from a sitting position.  This leads to a rocking motion to get up, and this could lead to some very bad and embarrassing moments. I keep picturing the toilet coming loose from the floor and like a fire hydrant sending water straight up in the air or straight up anyway.

 We will also need to install handrails up the stairs as well.  I do spend quite a lot of time in the basement as that is where the laundry room is located.  If you by chance see my son wearing a shirt that looks a bit small, feel safe assuming it was a bad day and someone else helped with the laundry.  God love them for helping, but everything colored is not the same and everything does not go in the dryer.  So those rails are going to be a must.

6 months ago, I would never have dreamed I would be installing hand rails and being worried about rocking my toilet from the floor.  Ohh rocking and toilet reminded me.

This could be a pretty cool thing as well.

Today has been a good day.