Thursday, March 28, 2013

41.9 years old

So, When I stopped posting last I was celebrating my fortieth birthday.  As some may remember I was 39.9 years old for quite some time.  I think our minds trick us at certain ages.  We are reminded of our twenties and where we thought we would be at a certain age.  I had chapters set up in my book of life.  The chapter where I turned forty was not exactly what I was expecting.  As I looked through a journal I had been scribbling in, I found something that even surprised me.  I was happy at 40.  Yes, I had a disease that will more then likely cut my life span a bit, but hey I was feeling good, meds were working and I had a 14 year old son who was my biggest supporter, besides my  bra.                                               

Mornings are still the hardest time for me.  I still awake early to down my little yellow fellow and his friends, but it just doesn't seem to work as well as it once did.  So, for an hour or so, I may appear to have a bit of the jig going on.  I always think of it as my morning exercise.  My legs are the worst, so this gives me a very good excuse not to do laundry in the morning, as I have to avoid the stairs.  Other then an afternoon nap and being up most of the night, I am ok.

I had left my last post stating how my views on "the right to die" issue had changed.  There was one particular instance that this really hit home with me.  I would like to share with you a little story.  I had posted on facebook about my dear friend (email partner) I will call "Mary". 

Shortly after dx I of course got a degree from Google on Parkinson's.  While studying hard to get this degree, I stumbled upon a message board, forum call it what you may, full of people who were diagnosed before the age of 40.  I quickly began following Mary's posts, as she was very well informed and had been living with the Shit Pot Disease for five years.  Hers did seem to progress quickly, and this did scare the shit out of me.  She was a book of knowledge.  When my foot gave me problems, she had the answer.  When I had nearly bled to death trying to shave my legs, she was there with a remedy.  So, you get the picture.  She was very kind, and would email me daily or at the least every other day.  She was a stay at home mom of two college students. They lived out east and by the pictures she had sent, seemed to have the all American dream, well with the exception of hitting the Jig Jackpot at an early age. 

I had kept most of our conversations to myself, as I did many things at that point.  I woke one morning to realize I hadn't heard from her in a week.  I sent off a cute little email and nothing.  She had not posted on any boards and quite frankly I missed her.  Then I remembered she had spoken of a trip the family was taking.  I knew when she returned she would get in touch.  A month passed, and no word.  I emailed for almost two months before I got an email. 

This is where the story gets long, so you can bail now.  Late one evening I received an email from my long lost friend, or so I thought.  I was so excited, figured it would be a novel so I grabbed a drink, a pillow and began to read.  Mary was not the one writing this email, it was her husband.  The love of her life, had found my email address in her laptop.  He was quite to the point and told me Mary was gone.  She had taken her life two months earlier.  He had not had the nerve to look at her laptop until now and seen all the emails I had sent.  He explained went on to explain, that it was like every other morning, with the exception he had to go to the city for a meeting that day, and left early on the train.  Both kids were away at school, and in perfect Mary fashion, everything was done meticulously.  She fixed his breakfast, sent a snack and he was on his way.  She then changed all the linens on the beds, put dinner in the crockpot.  Finished every ounce of laundry, headed to the store to fill the fridge and cupboards.  When all of her tasks were completed she called the gas company and said she thought she had a gas leak.  When workers arrived, the door was open and Mary was on the couch.  She was already gone by the time the workers arrived.  Suicide by overdose.

So here is the hard part.  He was asking if she had given any hints as to why she would do this?  He needed answers and honestly I probably could have given him a few.  He said she was perfectly normal. Oh for fucks sake, she wasn't normal. She had been fighting a progressive disease that was moving at the pace of an Amtrak in her brain.  I so badly wanted to now ask him questions.  Like, so in the morning do you really think she just stands by the toaster as to not burn your waffles?  No, her legs are hurting and it's much easier to just stand there.  Did you ever notice she was always up before you?  She got up early as to get meds kicked in before you seen her.  Do you really think she didn't want to sleep in the same bed with you?  Of course she did, but the leg cramps would have awaken you as well, so she makes excuse to sleep in guest bedroom.  By chance did you ever notice that you don't have a glass jar in the house?  This is because carrying glass jars in the house make a huge mess if you happen to drop them, not to mention getting a grip on a jar to open is nearly impossible.  Were you surprised at how good her hair looked lately?  She had a friend come over every other day to fix it, as her hand had a hard time holding the brush, not to mention with the tremors she would have had a bee hive hair do.  One last question I really wanted to ask him....Did you ever try and talk about how she was doing?  Don't let that, "I am fine" fool you, she was aching inside.  She was scared to death of embarrassing her family.  Her daughters still young with bright futures and a handsome husband that deserved more then what she felt she could give him.

I simply sent an email back stating how sorry I was.  I didn't have the nerve to tell this heart broken, still madly in love with his wife that I understood why she did it.  Please, I don't want people reading more into this.  I am doing well, and this is not something that I see in my future.  I will tell you this, she had every right to do what she did.  I believe that a person deserves to die with dignity.  In the last year I have sat beside two of the bravest, most courageous people on this earth loose their battle.  It wasn't pretty, it wasn't fair, and it sure as fuck wasn't something I wanted to see.  I think of "Mary" often, I have only shared this story a few times.  It still hurts, although she wasn't a friend that I had drinks with, although we did joke about plastic cups and drinking only half a drink as we would probably spill a little.  We never had the opportunity to go shopping, or just sit together and talk.  I will forever be grateful for the months that she visited me via email.  The many times that I confided in her above all others, as she was feeling many of the same things. I guess I didn't realize to what depth her disease had gotten to.  I erased her email, as I was afraid on a drunken bad night I would be tempted to send one last email.  An email that would upset her husband. I just wanted her to know I understood.  I totally get it.

Well Today is a good day so far. 



Tuesday, March 26, 2013

I'm Back

                                                          

It has been almost two years and many emails since I updated this blog.  I thought about starting a new one, but that would mean explaining much of my rambling, as well as much of the background of when I was diagnosed. So, for anyone new reading dont' be lazy just scroll to the bottom and read some of the older posts.  I have been asked so many times, why I stopped updating.  Well, honestly I began to feel as though the disease was defining who I was, or who others seen me as.  In some crazy way backing off of this and keeping  much to myself, well besides my facebook posts, would help me mentally. 

Two years?  Wow, It will take a few posts to catch you all up on some of the fucked up crazy things that have gone on.  Oh, anyone new reading, If you are offended by and occasional F bomb, you should probably go back to facebook and read about every ones problems on there. Lets see, I have officially made it through what my, not so good looking or good speaking neurologist called "the honeymoon phase." My first thought was this was a milestone passed in the journey with this shit pot disease.  Yea, not so much.  In a nut shell, it means the first few years are easiest once meds kick in.  Many may remember my little yellow fellow, well he has had to have a few more meds added to help him work. 
                                           
Well, maybe the photo is a bit of an exaggeration, but some nights it feels like it.  I am having a lot of sleeping issues, not that I cant sleep, it just seems my clock is set to sleep during the day and be up all night.  As many other Parkys (someone who is fighting this shit pot disease some call Parkinson's) Fatigue is a huge issue.  What the hell, it's nasty out anyway right?

Instead of starting out with all the changes, I will remind you all of a few things.  I hate when people tell me "they just love Michael J Fox"  I would never walk up to an alcoholic and be like "I just loved Betty Ford".  I still will not under any circumstance try to play Jenga, I fucking hate to loose as I always seem to be the one to cut the game short.  As much as I admire this man
                                                      
I hate being compared to him.  I didn't stand on a huge square mat, surrounded by ropes and take repeated blows to the head.  I have been known to hit my head on the cupboard door from time to time, but I am pretty sure this did not cause my lack of dopamine.  What did cause it?  Sure as hell wish I knew.  One man stated that "genetics is the ammo but the environment pulls the trigger".  This could explain why the number of people being diagnosed before the age of 40 has risen by 25% in the last ten years.  There is one thing that my views have changed about over the last two years.  I will explain what changed my feelings on this when I update next time. Today has been a good day.