It's funny. The "Will" that my friends and family see... and the "Will" that exists every day.... Trying to pull those two guys together without hurting anyone is hard. I'm tired. Tired of doctors. Sick of hearing what may or may not be wrong with me. It's been a very LONG two years. FUCK... it's been a very long 7 years. Knowing that I probably never had a "massive stroke", and the changes that had on my life and the lives' of the people I love... HURTS. I'd rather go down thinking that what I went through... what I put my folks and Rusty through.... geeeeeesh. If we I could have had an accurate diagnosis all those years ago who knows where my life would be now. Where Rusty would be. Where my folks would be. The "what ifs" can go on and on... and are the things that could mean life and death for me now.
Most Parkinson's patients go through a period of diagnosis. Where you could have MS, ALS, Hunnington's, blah blah blah... I thought I had it easy. LOL! What makes me different than the next guy? FUCK THAT! I'm Will damn it! Things are supposed to be different. BECAUSE IT'S ME! I'm so sick of going to doctors. I'm SO sick of taking meds. I'm SO FUCKING SICK of hearing bad news at every turn. I've lost so much over the last 2 years. I moved back to Virginia to pull my shit together... to support myself without someone else attached to me. To move past my "Rusty" years.... rediscover myself and really start living my life for myself. Linda once told me that I would never be happy until I could get past the PAST.
PART of that past is the stroke. I'm so angry. I'm not even 40 yet. I should be planning for my kids education, looking forward to retirement, and loving the fact that all that I worked for was coming into place. I've lost EVERYTHING over the last couple of years. Walking away from Hawaii..  From Rusty. From the life that we built together. From my best friend. Geeeesh. I don't regret that at all! LOL! It made me grow in so many ways. I just see my life now so differently than I did then. If only I could go back and SHAKE myself. WAYNE!!? That's another story entirely. I've thought many times over the last couple of months that God was playing a joke on me. I was being PUNKED. I've never in my LIFE loved someone so completely. Evenly. Without question. Only to find out that he was human too. GOD DAMN HIM! Looking back... I take complete responsiblity for what happened between us. He was holding the world on his shoulders, and trying to take care of me at the same time. No one can do that. NO ONE. Gilbert is and always will be one of my heroes. 47th street. Neptune Festival. Jazz nights at Neptune Park with Levi and Lane. The camp ground. Petunia. THE LAKE. Period. The happiness that I felt far outweighs anything negative that came out of that period of my life.
But here I am now. Trying to make sense of a life that doesn't make ANY sense at all. I'm tired. I should be at a place in my life where I should be taking care of my parents. Being the mentor to my nephew... to be the man that he used to look up to... and able to support my sister the way the men in her life have failed to do. Here I am at 4am on a Thursday morning looking back at the destruction of my life.
And then... there's my faith. My Grandmother told me years ago that even when things seem really dark... If I closed my eyes REALLY tight... I'd see some light. And that would be God. Grandma Pillar was a wise woman. I miss her like crazy because I know she'd have something to say about all of this. Something sweet, but stern. I'm a control freak. I get that from my mother. I can't control anything that's happening right now. I'm scared shitless, and I don't know what to do anymore. Thankfully I have people in my life that love me enough to put up with my bullshit. Spencer (ohhhhhhhhhhhhh Jesus, YES.... SPENCER!!!!) came back into my life and has been absolutely amazing. That's another story all to itself... but hopefully it will be a great love story. Carl and Tom are my rocks. I don't know what I would do without Krystal and Domonique. My day to day friends like Spencer, Carl, Tom, Dominick, Jamie, Em, Chris, Fi, Megs.... you guys give me strength. My family... no matter how much I push.... you're always there. Blood and otherwise.
I'm sorry. I'm sorry I've pushed you guys away so many times. I don't know what is going to happen with all of this. Signing Advance Directives, Living Wills, etc.... it's not something I want to deal with much less think about. Worrying about what's going to happen to my family after I'm gone... it's not something that a 40 something should have to deal with. I'd much rather be planning trips to London... skydiving in Hawaii... surfing in Australia... hiking in Colorado... watching the sunsets that I always LOVED in San Diego off of Sunset Cliffs. Now I worry about what's going to happen to my CONSTANT companion. Petunia has come a long way. From Hawaii... to California... to Virginia. That little girl has gone through hell to have a happy home. And I've given her nothing but a hella lota drama. She worships me, and I adore her. I may not (or who knows... may HAVE) have found true love with another man... but the one thing I'm sure of in my life is the love of Petunia.
I don't know what's going to happen from this point forward. I'm TIRED. SICK and TIRED. Not looking for PITY (and yes... I'm thinking of a certain SOMEONE), but maybe some empathy. Those of you that are close to me know what I've been dealing with, and KNOW ME. I may be dramatic at times... yes. But I don't want anyone's pity.
Ok. You guys asked for it. My first bullshit free blog. I won't go back and change anything. I'm tired. Not sleepy tired, but sooooooo drained I could hardly stand if I had to. I'm grateful. I'm humbled every day. And I'm feeling bad for writing half the stuff I just did. (It's the Catholic boy in me... ) All I know is I need peace. Peace of mind. And that's what I'm praying for as I go to sleep this morning. I wish I could KNOW that everyone in my life was taken care of. PERIOD. I'd be ok with anything.

Listening to some old school Nickelback... geeeesh. Why do I do this to myself? LOL!http://www.youtube.com/watch?feature=endscreen&v=GP7zpdwo3Xo&NR=1

UVA, DBS, and Dr. Wooten

I've taken some downtime from Facebook, email, and everything else this week so I could get my head clear. Leaving in a little while to head up to Charlottesville for my appointment with Dr. Wooten at UVA. Spencer is going with me, and I'm sure will distract me from all of it. I have to be there at 9am, and will probably be caught up with that most of the day. Decisions. It's not something I've ever been good at. I've always been indecisive when it comes to making major life changes. I've meditated, prayed, watched a LOT of Sparticus, and spent plenty of down time with Petunia at Carl's place. (If you haven't seen Sparticus... watch it! Great show and lots of eye candy.) Trying to stay positive and look on the BRIGHT side of things. I haven't been to Charlottesville since Ken and I lived there in the 90's. So it will be nice to see the mountains and the town that I love again. I have so many things RIGHT going on in my life. I have a wonderful family, incredible friends that have TURNED into family, reconnected with a man that was a huge part of my life 14 years ago, great partnerships with people in the Parkinson's community in Hampton Roads that have become mentors in my fight with this disease, a dog that won't leave my side no matter what,  and I'm busy planning for the Parkinson's walks here at the beach and the NYC Unity walk... both coming within weeks of each other. So overall... I have a lot to be grateful for. I try to remember that when I get down on life.
So my friends and fiends... say some prayers that everything goes well tomorrow. I'll update as soon as I can.

Friday and "pity."

Thank GOD for Fridays. It's been a long week, and I'm ready to relax. Someone who thinks that she's close to me said something last night that I found funny. She said that all I think about is myself, and that I want "pity." Those of you that ARE close to me in everyday life, know what's been going on, have been around, ask questions... know this isn't the case. The last thing anyone with Parkinson's wants is "Pity." Especially me. It's rare that I complain about what I go through every day. If I did... I'd drive myself nuts just thinking about it. I try every day to get my mind OFF my body. I try to concentrate on the positive things going on in my life. But I think I'm going to use this entry to explain what a day in the life of Parky's is like. And no... I'm NOT looking for "Pity." I hope that person reads this and finally understands. Doubtful, but I'll try.
I wake in the morning with cramps. First thing I do when I get out of bed is take a handful of pills that will get my body moving. I've always hated medication, but it's part of my daily life now. I take pills in the morning, in the afternoon and before bedtime. I could name them all, but the only one that's really important to me is Sinemet. It's my juicer. It stops the stuff that people see. Makes my movements more "fluid." Sometimes it works, and sometimes it doesn't. Going back to my first blog yesterday... it really depends on how much stress I'm under. Regardless... every one of my meds cause drowsiness. I get drowsy, but sadly I don't actually sleep. Forget the meds. Seriously... there's not a moment in my day I'm not feeling SOMETHING physical. I may not be shaky or rigid (depending on what part of the day I'm in and what I'm taking), but I always feel shaky on the INSIDE. It's sometimes unnerving. And there's not a medication out there that can take THAT away. There's not a hour in my day when something isn't happening with my body. You "normal" people complain of headaches, stomach problems, colds, etc... try living my life for a day. And then LISTEN to what comes out of my mouth. I hardly ever complain. Why? Because I've seen the end stage of this disease, and I'm blessed that I'm not there. And hopefully through research and development of new drugs... I won't be there any time soon. My body starts fading right around sunset. Meaning that I get fatigued, tired, and rigid (I go from tremor to stiffness pretty quickly). I can handle the tremor. No problem! It's the rigidity that is sometimes painful. It feels like every muscle in my body is flexed. I get spasms and cramps. Imagine living with a constant charlie horse. That's what it feels like sometimes. Do I complain. NO. It doesn't accomplish anything. Usually I just sit quietly in front of the tv, take muscle relaxers that usually don't work, and talk to God. Yes. I said God! Silently in my head I have a one way conversation with the man/woman above. It FEELS like it's one way, but it isn't. Usually if things are really quiet in the house... I do get a message. PATIENCE. I can feel a stillness. Not in my body, but in my head. For me... that's GODLY. I know that what I'm going through is God's Will. Maybe it's so that I can touch others and bring about change. Maybe it's so that when people see someone in the grocery store, on the boardwalk, in a wheel chair, or at the mall using a cane (I've been this someone)... they think twice before being ignorant. Maybe it's so that people have more empathy. Maybe it's so I can open up a conversation about people with disabilities and what we go through. For quite some time I was scared to go out in public. I didn't like it when people stared at me. Now I have fun with it. I actually ask people what's up. Usually I don't get a response, but I know it makes them THINK about how stupid they are. I had a friend that used to make fun of fat people riding around in the scooters at the department stores. He doesn't do that any more. A overweight person riding around in a scooter isn't lazy. People you meet or see in everyday life all have their own burdens and crosses to bear. I try to remember that when I'm dealing anyone. You never know what that person is going through.
See?! I got off the subject. Back to what I was talking about before. I don't want pity. If you pity me... GO FUCK YOURSELF. If you're part of my life you should do the research and understand my disease. Don't make assumptions about something you don't know ANYTHING about. Getting through a "NORMAL" day for me is a lot different that getting through a "NORMAL" day for you NORMAL people. LOL! I'm not complaining. I'm trying to make it REAL for a certain person in my life. I like to say that I'm an Optimistic REALIST... and I hope that came through with this entry.
Ok. Again. That blog just took 2 hours to type. I give up for the day. Hope everyone has a great weekend! I'm looking forward to mine! WHOOP WHOOP! I'll be back on Monday! Pic was taken this morning.

I christen you JITTERS!!! Day 1

Wow. Setting this thing up wasn't easy. I'm soooo NOT computer savvy, but happy that I can start recording my life again. I used to keep a blog on MySpace years ago and I've missed it. It's always nice to go back and read about your life years later. A few important people over the last year convinced me that starting a new blog would probably help me deal with my life and my condition. I'm hoping that my blog helps other Young Onset Parkinson's peeps, and maybe give some insight into what living with this disease is like for those who are "NORMAL." I say normal, because over the last couple of years I've definitely felt ABNORMAL. I suppose many of my friends would say I've always been this way. Quirky, manic, funny, sad... I could go on and on. Getting a diagnosis like Parkinson's Disease changes who you are, the way you think, and the way you live your life. Over the last couple of years I pulled away from a lot of people that were important to me. I've slowly started letting people back in. Letting people see me the way I am now. I guess there comes a point when you accept life the way it is. I know for me it felt great to just say, "FUCK THIS, AND FUCK PARKINSON'S! I DO WHAT I WANT!!!" Parkinson's is a degenerative disease. I won't get better. I have good days and bad days. The good days are great! The bad days SUCK. But even on my bad days I have my faith... I trudge through. I get through it. I was ANGRY after my diagnosis. And I still have days when I want to punch my Parkinson's doctor in the face, but it's getting better. He's doesn't have to duck for cover when I'm around. But then... I'd probably miss him altogether anyway. After New Years I started feeling a sense of peace. Michael J. Fox once said that when he was diagnosed he told his therapist that he felt like he was always waiting for the other shoe to drop. She informed him that he should stop worrying, because that shoe hit the floor already. That's kind of how I feel about all of it now. I've lost a lot over the last couple of years. I've watched people walk out of my life because they couldn't deal, couldn't watch me go through this. And of course I've made some pretty bad decisions along the way and hurt people that really did love. How I dealt with things before is totally different than the way I deal with things NOW. The few years pre-diagnosis and POST diagnosis were awful. AWFUL! Those of you that stood by and have seen me through the darkest part of this disease... I thank you. It's always nice to have cheerleaders. =-)
My condition has changed... it's constantly changing. That last paragraph took WAY too long to type. I guess that's what's frustrating for me sometimes. It takes longer for me to shower, get dressed, TYPE, walk, move, and sometimes even speak. Stress affects my condition big time, and I try to walk away from it every chance I get! I used to RUN towards drama, even created a lot of it myself. These days I like things simple. Easy. I try to save the drama for the movies.
So my fingers are giving up. I have tons more to say, but will have to do it later. I'm gonna go wash my dog and call it a day! Thanks for reading!