How Long have I had this? Does this explain all of the undiagnosed illnesses that I have had? Where is this road going to lead? Why ME? All of these questions and more will be explored as I now kick off the BIGGEST and MOST IMPORTANT Project of MY LIFE! This Site is dedicated to my entire project team, including the healthcare professionals and Support Groups established for me, my partner and my family. The goal of this project is to determine what it is, help find a cure and get me back on the road again to see more of the world.
- Fred Perry
OK. I get it now, but why don't I feel like I've won the lottery or something. The odds certainly indicate that I should have won some thing BIG before now. 1 in 1.5 Million world-wide., 1 in 100,000 in America, 1 of the 60 in Indiana. Well I guess it could be worse. I could have gone on for the rest of my life not knowing that I was so "Special".
(Updated: 10/25/10) Even though it does not appear to be LUPUS, according to the results of the latest ANA & DNA Test. It DOES appear to be a rare Immune disease that I have probably had all my life, or at least since I was a teenager. I am hopeful that my past medical history will finally unlock the door to the mystery. I have done a LOT of reading over the past week and I am quite shocked that there are so many unanswered questions concerning immune diseases. The other thing that I have grown to realize, mostly due to my own ignorance on the subject, is that there are way to many people, especially healthcare providers, that need to be more informed. In my case, everything was there in plain view. It was just that no one could ever connect the dots. Not until Labor Day Weekend 2010. My Journal starts there, the day when the puzzle pieces finally started to fall into place. My Journal will follow all of the events as they happen each day, going forward.
I am now a man on a mission. Since I think I was an OK Project Manager for my current employer (even though I have been unable to work since Feb of 2009), I have decided to handle this just as I would have with any other project. However, for selfish reasons, this one is more important to me than any of the high profile projects that I had previously completed for National City Bank, now PNC. The purpose of this project will be to gather a team of caring individuals, including helthcare professionals in every ...oligist field there is, family members, friends and those who just want to help. This team will work to spread the word, raise LOTS of money, form "Support Groups" for me, John and my family. All the while, heading down the path that has finally appeared. I have Big plans and it should be an interesting journey to say the least. I am expecting a lot of "Ups" and "Downs". But, hopefully, you will find it interesting to follow along.
Those who have known me for any period of my life will remember that I suffered from some strange and previously undiagnosed medical issues. It all seemed to first manifest itself in my Central Nervous System when I was merely a teenager. This was the period of time when the running joke in the house was "Fred, Do you have a headache today?". The answer was always "Yes"! For years, I had some of the worst headaches, including some 'hum-dingers' that felt like an ice pick was being stabbed into the back or side of my neck. Then the seizures started. They got so bad that I couldn't attend school "in person" during my 1st semester of High School, Instead, I had to sit at home and try to learn French over a speakerphone. Fun stuff, that was - NOT! Regardless, I still seemed to do OK in school and continued to get good grades and graduated in 1973 in the top 3rd of the class. I went on to study Radio & TV Broadcasting at Butler University.
I was in my second year and doing well, when this roared it's ugly head in the worst way. Perhaps it was a stroke, maybe something else. All I know is that my thoughts were all stymied and I couldn't even complete a sentence. The word would be right on the tip of my tongue, but I could not find it and then I started to stutter. And that, Mom & Dad, is the REAL reason I did not not stay and get my degree. Sorry, to all for having kept that a "secret" for so long! However, you can imagine how devastating it was to my chosen career path.
- FRED (9/11/2010)