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.