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.