In the very near future I will be embarking on yet another adventure. This isn't new to me since my entire life has been nothing but one adventure after another. I have to admit that I have done some pretty cool things over the last 48 years and of course not all of them could be considered sane. But regardless how close I have come to death, it never happened and I had fun.
This adventure is different. Instead of risking my life by cave diving off Cyprus or watching a polar bear eat a seal, this adventure is suppose to save my life. The only thing is, we don't know if it will work or not.
The disrupted blood flow theory in Multiple Sclerosis patients isn't new. It has been published before. The problem was there was never a way to prove it. Along comes Dr. Zamboni from Italy after proving he could identify and repair the blood flow anomalies providing relief for patients. He then did what very few doctors are willing to do. He made it public.
Any doctor that brings forth information that radically changes the way medicine is perceived is subject to career ending ridicule if he is proven wrong. But to have a doctor bring it to the public and then stand behind it with such conviction is nothing but amazing. Dr. Zamboni didn't do this for personal gain, he didn't even do it out of compassion for others suffering. He did it out of love for his wife.
In my research, I had seen the theory in passing but didn't really look into it again until the W5 episode that is now basically destroying the Neurological Societies of the world. My reasoning was pretty simple, I had a fatal form of the disease with a short prognosis. I needed some proof. My efforts in using high doses of cannabis were proving effective at helping to slow the progression, but were by no means stopping the damage from happening. If anything it was proving to repair previous damage better than actually slowing the progression.
The problem was getting the proof that Dr. Zamboni's theory would work. Knowing that clinical trials would take years that I didn't have, I needed to try a different approach. I ran my own unofficial clinical trial. I used my friends, my friends friends, and complete strangers. I was asking some of the strangest questions, but I was getting answers. Finding the information proved to be very easy thanks to social networking as everyone was posting their stories of success.
Except I was looking for the failures. I had far more questions for people that were unhappy with the procedure than I had for the success stories. By July, I had started to see a trend where patients were actually falling into three groups. A very small group of patients that said they felt worse, a slightly larger group that found no blatantly noticeable improvements, and the biggest group of patients that were doing much, much better after the treatment.
I watched videos, read blogs and posts that numbered in the thousands. I educated myself. All while planning for my own death. Every morning I woke up would start with wondering if this would be the last. I fought back. I fought against pain and fatigue. I didn't always win every battle, but I never gave up the war. My reasoning for continuing is really the same as Dr. Zamboni's. What most people don't know is that Chrissy and I have only had one healthy year together. A year after moving in together we find out that I am going to die, but before that happens, I get to suffer.
The problem is that it isn't just the patients that suffer. Everyone gets to share in the pain. I've had to miss family functions and birthdays, holidays and friends weddings. I have had to miss Lily's school concerts and playing in the sun. Going to the beach is a thing of the past. Then throw in the odd mood swing and life becomes a living hell for everyone.
I have been prepared to die for a long time now. What I am not prepared for is living. I figure I have one crack at pulling this off. I am a realist, I know the outcome of not having the procedure. But, I also have to look at the future if it does stop the progression. No matter how you look at it, I will still be sick. My body has basically gone through about 30 years of disabling progression in the last 4 years. I now have a hard time recognizing old injuries from disease damage which is going to also hamper my recovery.
I have to regain strength and balance. I will need to reteach muscles to work properly again and I may never be able to walk without a cane. But I need to get better as I will have no choice but to eventually go back to work to be able to afford my recovery. On top of all of this, I also have to figure out how to afford to fix four years of teeth shattering seizures. And there is no one I love more than a dentist.
But giving up would be too easy and I never get to take the easy way. I need this procedure to work. For the last four years because of this disease, I have watched Chrissy risk her own health for me while family members who will never be forgiven treated us like garbage. I came into this relationship with full intentions of me taking care of her. Not the other way around. I know I will never be able to repay her but I at least want to try. She really has kept me going this far so it would be pretty selfish of me to let her down.
Of course the real bonus of this procedure isn't me living, it's proving that the treatment stops the progression. Simply put, if I live a year after the procedure, then it will have stopped the progression enough to make my form of MS no longer fatal for anyone. If my friends and I also get better faster than others because of our follow up treatment plans, then even less will suffer in the future.
Best of all, if it works, it will allow me to have the energy I need to make sure no other patients suffer from this disease again. No animal should have to endure what I have been put through. Actually, no animal suffers like this because "humane and compassionate" people put them out of their misery. We aren't that lucky. As patients we have no one in our corner fighting for us. We are doing it ourselves. As more and more patients get treated and start recovering, they too are joining the ranks against the Neurological Societies and politicians.
I am playing the odds. I know this, but I plan on being on the winning end. I am already planning my battles for the new year. I may be going into this with a 50/50 chance, but I am smart enough to plan for a good outcome since the bad outcome is taken care of.
I am also glad that I did my homework, one thing I noticed very quickly with people going to get the procedure, stress is bad. Yes I know all stress is bad, but did you know that very few people that have gone through fundraising and wait times for clinics got away without a relapse within the last two weeks before the procedure? Check it out and see how bad some of them get. I know this and prepared for it. Other than going to a fundraiser on the weekend, I am pretty much booked to be in bed avoiding stress at all costs until my appointment.
Hang in there folks.. I will be back to fight for everyone else soon.