The face of Parkinsons

Picture this billboard with 4 people on it.  An older man, a middle aged man, a thirty something woman and a baby.  The three adults would all have captions below them reading " I have Parkinson's".  The baby would be holding a tulip (the symbol for Parkinson's) with the caption "I have hope".   This apparently will be coming to a town near you in the future.  I received a phone call from a very nice woman tonight, asking if I would consider being that thirty something lady.  She said we have to get the word out about this horrible disease and want you to put a face with it.  Well my first thought was,  I know how big a billboard is and just how big is that going to make me look?  My second thought was,  Do I really want to be seen in that way?   She was a very sweet lady who is on a mission to find a cure.  Her husband was diagnosed years ago and she has taken every step with him.  If this woman,who has never had to physically feel the pain that comes with Parkinson's is this passionate about helping others, how could I tell her no?  We spoke for about an hour.  She explained how different every Parkinson's patient was, yet we couldn't get over the similarity I had with her husband.  But a billboard???  Seriously,  My face on a billboard.  Ohh what have I gotten myself into?

I keep having these visions of my face ending up on something like this.  Like an episode of a bad sitcom. You agree to one thing and you walk out one morning and BAM there you are.  Someone messed up the design and your face is advertising for something else.  I know silly, but seriously that is how my mind works.   Maybe they want me to look younger, you know attract a younger crowd.  I could give them a picture of when I was 30.  Hell, who am I kidding I didn't look any better then.  So, in a few months if your driving down RT 29 and see my smiling face,  give me a call if  I have any 1-800 numbers below me.  Otherwise think of Parkinson's.  Think that maybe, just maybe we will get a cure.  Today has been a better day.

Things that go thump in the waiting room

If this shirt would have found its way to my closet, it would have been what I chose to wear today.  Please, if you are offended by F bombs or complete negativity, please check back tomorrow for a feel good post.  This is not one of those kind of days.  I did however, have success in finding the proper foot apparel for sleeping.  It is rather simple actually but the sole is hard and flat and the top has velcro strips which allows me to tighten it over the top of my foot. This may be the only thing that was positive about the entire day.

Now, I know everyday is not going to begin with birds chirping and rays of sunshine beaming in the windows, but I honestly felt as though there was a black fog over my bed this morning.  I have learned a thing or two about making my mornings easier.  I now set my alarm for thirty minutes before I need to get up.  When the alarm sounds, I take my first little yellow fellow before my feet hit the floor.  This  thirty minutes allows me to actually walk to the shower, rather then feeling as though I am dragging half my body beside me. Well, this works wonders if you remember to set your alarm.  I did however manage to get out the door in time for work.   Things were a bit slow at work this morning, which was probably a good thing.  I just wasn't feeling great.  I took a few minutes to look at a few websites about this wonderful disease I have and everything  I came across let me know what I was feeling was normal.  Well, normal for a Parkinsons patient. 

Anyway, this afternoon I headed to the hospital to be with my uncle.  He was having a procedure done, and I was waiting in a room with about 15 other people.  I was told someone would come and get me when it was complete.  As I sat there, I happened to look up to see them pushing him down the hall.  I jumped up to  follow, when my right leg thought it was still time to sit a bit.  The next thing I know I have done almost a perfect belly flop, minus the water of course.  Now this was fucking embarrassing. 

I could feel everyone staring and heard someone say "that poor thing".  I jumped up grabbed my things and shuffled out as quickly as I could.  The hallway seemed miles long.  I could hear that woman's voice in my head again "that poor thing".   I had to stop and compose myself  before I seen anyone.   At that moment something entered my head that I never wanted to think.  WHY ME?   Is this the way things are going to be?   I didn't like that woman's pity, but I was beginning to feel it for myself.   I just couldn't help it, I lost it., right there in a dingy colored hallway that smelled like ass. I stood  sobbing like someone who had just seen there prom date leaving with the prom queen.  I don't think I will ever forget how I felt at that particular moment.  It hit me, hard.  These are the fucking cards I have been dealt.  In this game you get no other cards and folding isn't an option.  Sorry, this has not been a good day.

Laughter and bad feet

So, everyone has heard the expression "hit the ground running".  Well in a perfect world the feet above would be mine and I'd be running. That however is not the case.  I have a hard time lately being without shoes on.  Parkinsons does some crazy things to your body and I am the lucky recipient of horrible pains in my right foot.  As my sister so lovingly pointed out, it looks as though I have a cramp in my foot all the time.  Without shoes on it also feels that way.  So, after a night of actually sleeping with a not so attractive tennis shoe on I decided it was time to ask for some help.  A couple of phone calls and a lot of explaining how my foot is constantly arched, and I just need a shoe of sort to be able to sleep in.  Something to help with this

I am told I need night splints, so off to the local pharmacy I go.  While waiting in line, an older woman started up a conversation with me.  I'm really not sure what she was talking about but she seemed nice enough.  It was my turn and I was describing to the nice lady behind the counter what I wanted, it was obvious she didn't get it.  I was beginning to get nervous and I was starting to feel my little jig coming on.  Ten minutes later I am telling her " I have parkinsons and is causing havoc on my foot, I need something like a shoe to sleep in" The older woman behind me had not said a word until she heard Parkinsons..  She taps me on the shoulder and says,   "I just love Michael J Fox".  I wasn't sure what to say so I turned around and waited for the nice lady to flip a few more pages in her catalog.  Again, I hear her say "Michael J Fox is one of my favorites".  I turned looked her dead in the eye and said " yea, Michael J Fox huh?  Well, he sucks and Jenga.

I'm not sure she knew what Jenga was and I'm quite certain she never played.  The look on her face was something like this

I began to laugh, out loud actually.  I am thirty nine years old, looking for orthopedics to sleep in for fucks sake and this hag wants to talk about Michael J Fox.  The lady behind the counter heard the entire conversation and that made me laugh even harder.  I had heard the jenga joke a long time ago and I guess my tiny mind was nice enough to store it away for just the right moment.   The trip wasn't real successful as far as getting my new sleeping gear, but it was successful at giving me a good laugh.  So everyone out there in cyber world please keep in mind,   Not everyone who has parkinsons loves Michael J Fox.  I do find him charming in a 1980's kind of way. I think what he is doing for research is amazing, but because I have Parkinsons does not mean I want to talk about Michael J Fox.  

If you happen to come a cross a person sleeping with only one shoe, don't assume he is drunk. Maybe he suffers from this shitty disease as well.  Ok,  he's probably drunk, just sayin.   Anyone know of a nice place to get single shoes?  It needs to be for a right foot and size ten. No pumps please. 
Today was a pretty good day.

A few lessons learned

Well my Friday night began with an invitation to a local hockey game.  It was the Kouri cup, which I learned later was Pekin vs Peoria.  These were not the hockey players I was accustomed to seeing.  They were grown men doing what they loved.  It was a packed house.  I must admit, I was not so sure about going.  I had at this time been taking the little yellow fellow for 3 days and was beginning to learn what to expect from him. He makes me tired and he makes me move more uncontrollably.  Now, there is an upside to my little friend.  I do not have the stiffness in my legs and it doesn't seem to hurt nearly as bad moving around.  The movement had me concerned.  Many people have the preconceived notion that the disease causes all the movement and that isn't the case.  Without the medicine you feel very stiff and move very slow. I decided to take the medicine at the regular time, as I have been told is so very important.  I knew that meant it was going to kick in about the time I got to the arena.  Upon entering I seen many familiar faces.  I was a bit concerned about whether my shimmy shimmy shake was going to be noticeable.  Apparently it was.  More than one person stated " boy you never get used to the cold do you?"   I quickly learned I was being paranoid thinking others were staring.  People simply thought I was shivering from the cold.  I can live with that.  Lesson learned---I can go to hockey games and seem like any other cold fan standing around.

Saturday night was wonderful.  Earlier in the weekend my BFF (sister in law) had invited Doug and I, along with their cousin and her husband to join them at Alexanders for dinner. Keep in mind, I was nervous.  Not about the company but about the eating out part.  Again, this little yellow fellow was haunting me.  I was due to take the med at dinner time, and I knew I had to.  If I didn't take it I would be miserable with the aching legs and foot pain.  When I did take it I knew I would have the uncontrolled little jig.  Well the jig it was and it wasn't bad at all.  I chose to eat chicken as I am not much on steak anyway, but knew I could cut the chicken easier if I was having the tremors in my hand.  Without the meds I have resting tremors and am able to still do just about anything, it is just a whole lot harder.With the meds, like I said everything seems a bit wobbly and uncontrolled.  I held that salad plate with both hands and prayed all the way to the table that I wouldn't drop it.  The entree came and another glass of wine and I had made it through an evening I had been so worried about. It all seems silly now to have been worried.  This group of friends are the best ever.  I had envisioned this big white elephant in the room all evening and that just wasn't the case. 

As we made our way to the car we passed a handicapped spot.  Doug said he thought I should apply for one.  Now, I know I may walk a bit slower.  I may seem uneasy on my feet at times.  This comes from the fear of falling.  I am in no way in need of a parking permit.  There are so many others out there that need those spaces.  I appreciate the thought that was behind that, but I'm not ready for that quite yet.  I must admit the thought of a front row space at Walmart on Saturday mornings seems mighty inviting, but I will keep driving around looking for the closest space for a while.  Not saying that day wont come, but it's not going to be today or even tomorrow.  Today has been a good day.

Parkinsons and food

                                           Well, with all the reading I have been doing on this new found friend of mine, one thing keeps popping up---Diet.  Depending on what site you may go to there is only one thing in common and that reads as follows

Avoid alcohol, sugar and caffeine, all which can disrupt neurological function. Also try to avoid any type of processed food because processed foods contains high levels of chemicals and toxins. Hmm,  just burst my bubble.  What the hell am I going to eat?  It's quite obvious by looking at me that I have a love for food.  By love, I mean I love food.  Fried, baked, broiled, boiled, grilled, and any other way you can think of, I love food.  Now, many of the sites claim high in protein is best.  That is a good thing, but I like my protein on carbohydrates.  The butternut man and I go way back.  I adore bread of any kind.  It seems as though the affair I have been having with english muffins needs to slow down.  Kind of like a first love.  Just step back and enjoy small amount of time together.  Maybe we could meet up on the weekends or special occasions, but not everyday and not three times a day.  I am trying to add a vegetable to each meal.  Now vegetables to me, is like a husband.  Forget that lust you had for the first boyfriend (carbs) .  Vegetables( husband), you can't live without them.  They help in so many ways.  They can be a pain in the ass,  it takes a while to get them the way you like them.  They are better all dressed up, I'm thinking cheese or a cool pair of Levis, depending on whether your thinking of your man or a piece of broccoli at this point.  Guess what I'm trying to get at is that I love them very much, just can't stand the thought of them there ALL the time.   The alcohol really isn't a huge thing to me.  Alcohol to me is like a gay friend.  He is a blast on the weekend.  Goes great with a good chick flick, but I don't need it all the time.  They both make you end up talking about your feelings and that's just not me.  The caffeine, now that is a problem.  Caffeine to me is like my Dad.  He always makes me feel better.  Can't imagine not having a little bit of that every morning.  Kind of gets you going.  Last but not least--processed foods.  Do not tell the butternut guy but I may love spam as much as the bread I eat it on.  Actually, I eat a whole bunch of processed things.

 

Well, today I began to put a twist on things.  I am really watching my portions and am adding the protein and stepping away from a few of my loves.  I really need to do this.  Many believe that the extra pounds you carry daily make it very hard to function with PD.  I am also going to add exercise to this new twisty thing as well.  I need to do things to keep my muscles loose.  They say Tai Chi is wonderful.  I keep picturing myself in the Karate Kid movie.  Not sure if I could make it through a class without laughing.  I will research that a bit more.  Tonight, Parker and I will play tennis for at least an hour.  Ok, it's on the ps3 but I don't shake at all when relaxing doing that, so I say it's a keeper.  Today is a pretty good day.

 

Just for the record.   If my food and man story got you a bit confused

If I made a man pyramid he would be my fruit and vegetable.  Love me some Andy Garcia.  He's fucking hot.

Starting power steering fluid

I wanted to take a minute and explain the name I have given my blog.  You see, the day I was originally diagnosed they tried to explain it in a way that I could understand.  Dr Miranda told me simply "your a car and you have very little,  if any power steering fluid left.  You have a power steering pump, but over the years all of your fluid has leaked out.  Now, you can still drive this car but it's much harder. The turns that you made before with ease now takes much more effort.  You are able to get where everyone else is, but it is much harder now to crank the wheel."   The power steering fluid she was speaking of is dopamine and my brain is the power steering pump.  This has happened over a period of time and that is why it is sometimes hard to diagnose.  My pump (brain) is fine, it just needs the fluid (dopamine).

So last night it was time to give myself a little fluid (sinemet).  Sinemet, also known as
carbidopa levodopa is going to be my cocktail of choice to help me be able to drive a bit easier.  Of course I had to read all the side effects, drug interactions, and long term effects.  To say the least, I was nervous about taking it.  You must keep in mind, I was already nervous about the amount of snow outside and the fact that my power lines were moving like jump ropes.  I took the tiny yellow pill around 7 o'clock.  I waited and waited and never really felt anything.  This morning I woke, ate some toast and met up with the little yellow fellow again.  About twenty minutes later my legs began to feel a bit tingly.  My foot, that has felt as though it has had a cramp in it for months, did feel better. I again took the med about lunch time (a little after) and I guess I felt relaxed.  I had a bit of a fuzzy head and just relaxed. 

I am getting ready to have yet my third pill of the day and feel a little more at ease.  I did feel really tired today, but it's hard to judge what caused it.  On a day like today, everyone is laying around enjoying their snow day.  I am actually looking forward to getting back to work and seeing what the little yellow guy will do for me at work.  I have read where people say it's a miracle drug and others say its hard to tolerate.  I hope I am singing to the angels tomorrow.  The picture at the top of the old truck is how I had been feeling.

This is what I am hoping for soon.  Easy driving.    Oh, I must tell you.  While searching for images on the Internet, you need to be careful putting in hummer.  No really,  some crazy stuff comes up. Today, I'm having a good day. 

One eskimos adventure

So anyone living in the mid west is experiencing this wonderful weather.  I seriously woke up to the news stating record breaking snow and thought wow, I may need to wear a coat today.  Anyone who knows me, knows that I hate to wear a coat.  I hate driving with a coat on and hate what it does to my hair.  Anyway, shortly after waking, I realized that someone was in need of a phone call.  You see I have this friend and she tends to worry a bit.  After she read my blog, the news was out to her.  She seemed quite eager to speak to me, basically by the fact that all her messages were in caps and she explained that meant she was yelling.  Well,, I sent a text and shortly after she called.  We spoke for quite some time.  I explained what had been going on and why I hadn't told anyone.  A few tears were dropped, and not by me.  She seemed to understand me and to have a special friend like that really means something.

I guess now is when the adventure began.  Doctors office called and due to weather offered me an earlier appointment.  I really thought this would be my chance for my sister to stay behind and not get a chance to see my weight when they weighed me.  Seriously, I had already told her " you can come in when the Dr is ready to talk plan of action".  I had no intention on her or anyone else seeing that 3 digit number pop up.  Well luck would have it that her programs were also cancelled because of the weather and her appointment book was cleared.  Ohh how I beamed inside that she would be able to go.  Actually, I was glad she was going but was just nervous about the outcome of all of this.  We headed to Morton on some mighty slick roads.  Made it there fine and got right in to see the Doctor.  Did I say he is hot?  Ohh yes, my doctor could grace the cover of GQ and that is no exaggeration.  He looked me over, as I did him. Ok, not in the same way but you get the point. Then after talking about some of the tests and symptoms it was time to talk action.  The good doctor did insist then that I allow my sister in the room.  I mean she did risk her life to get there with me.  Quite frankly, yes indeed I am the newest member of the Parkinson's club.  Not your ordinary elderly member but a member none the less.  We have started some oral med and he thinks we need a neurologist on board for this cruise.  So, on February 17th I will again be nervous about meeting yet another doctor.  I can hope that he is as adorable as my Morton Man. 

This is what it was like on the way home.  I really did appreciate Dede being there.  I am sorry I shed a few tears there.  I guess a tiny little part of me was hoping that the other two doctors were wrong.   Now,  I will officially deal with it.  I will play ps3 with Parker and laugh at silly people on FB.  This is not going to change me,   I won't fucking let it.  (I added that F bomb for Patti S.  she likes that word)