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.

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.