As I reflect back to last week’s journey to Omaha, it took me a while to process all the events, testing and interactions with the OT patients and their companions.  I’m still trying to work through a lot of my thoughts as I write.  I decided to write as if I was back in school, with three basic principles of the scientific method, with some opinion on the side of course.  They would be: 1.  What did we know before we got there?  2.  What do we know or feel now?  3.  What’s in store for the future?

So, what did I know before I went to the conference and trials.  Well, I knew that I was dealing with a very rare disease, that could affect 1 or 2 in a million, the treatment doesn’t work very well, and it normally is starts presenting symptoms in the late 50s or 60s.  It takes a lot out of me physically and mentally throughout some of my days.  I was scared for my future and the future of my family.

How do I feel or what do I know now?  When I first arrived and started to socialize with the larger than expected group, I mentioned previously that I was excited and terrified at the same time.  Excited because this was the first time I had met anyone with OT, excited to meet people in person whom I had only spoken to on Facebook or Twitter.  Terrified because I was face to face with my possible future.  People who could walk very little without assistance, some had wheelchairs, some with walkers, and some with canes.  As the week progressed, I began to realize that my now OT family was truly amazing.  The we’re not constantly depressed or down trotted, but they were some of the most amazing people I have ever had the pleasure of being around.  They were eager to share their story and listen to mine as well.  The fear factor dissipated quickly.  Throughout out the week of some very impressive technological testing that was exhausting and revitalizing, I began to come to terms that this may actually help myself or others down the road.  I felt fortunate that I was diagnosed fairly early as opposed to some people who were properly diagnosed 20 years after starting to show symptoms.  I learned that cases have been diagnosed from age 7 to 85 and may not be as rare as previously suggested. The average age of the diagnosed is around 56 years old  and the population size maybe 20 to 25 in a million.  It is still rare but that is a highly exponential sample size to what was previously thought.

So what does the future hold?  The best answer and the answer from Dr. Torres and his colleagues is,  we don’t know.  We do know that these trials may lead to better diagnosis, which can lead to more patients, which may get the attention to bigger money research.  I also know that this maybe years away.  It’s hard to say in this medical world we live in now.  Unfortunately the almighty dollar still rules at this point. One thing that I do know for sure is that Dr. Torres is extremely passionate about the puzzle of OT and he is a remarkable man other than being a fine Neurologist.  Hopefully the data collected from Omaha 2017 will keep the fire that burns in his soul for our OT family.

Lastly, I again want stress how amazing the people who I met during that final week of September.  I made some what I hope friends for life, and know that we as a group will continue to be our own advocates for this perplexing illness.  I hope to participate in trials in the future be it a year, 3 or 5 years down the road.  Until then I will continue to be here, learning and listening to anyone who may contribute to our community!

Thank you for reading, sharing and may God bless you this Sunday!!



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