It is a rainy Sunday… Since I don’t have to be out in it today, it’s very relaxing to watch the rain falling outside my window. Relaxation is just what I need right now. I have an Emory ALS Center visit this Tuesday. I’m feeling a little nervous so I’m thankful for the calming rain. I guess the nervous feeling is because of new tests that will be performed. I guess anything done for the first time gets my mind rolling. That is surely it, I don’t even get nervous over the lumbar puncture for the Validation of Bio-marker study I’m in since the first complete one.
This is for the Outcome Measures study I’m in. I will have several tests performed but the only one I’m sure of is an ultrasound of my diaphragm. I know it will be painless. That helps. It’s still my first one and I’m not positive what other tests will be performed, hence the feeling of butterflies with a few moths thrown in. I’ll take this any day over nothing. I need to feel like I’m doing something in regards to ALS. Even if I don’t benefit at all personally, I feel good knowing there is data from me in the mix to help bring clues, signs of any kind to help researchers put the puzzle that is ALS together until that final piece is placed and ALS can be cured or at least treated.
The cure for ALS and other neuromuscular diseases is out there, but damn does it know all the good hiding places and disguises! With the genius minds of researchers coming together and patients helping, we will find it! I just don’t like thinking of the lost people, the grandparents, parents, siblings, and friends that have and will be lost before it’s found. I try not to stay there too long. Forward thinking and active participation is my way of coping with the fear and devastation of it. Sometimes it works better than others but it works, for me at least.
Anyway, another short blog for now. Tony is doing more den preparation and will be cooking something good. Tonight is also a Big Brother 15 show night. The best reality show out there. Until then I’ll give my little poodle partner in crime, Abby, some playtime, listen to my favorite music and hopefully get a little more added to website pages.
Until next time, take care,
This article was written by April