ALS, A Personnel Time-line
Summer of 2013
Well that was weird!? I had Tripped several times, kicking a soccer ball at a park with the kids.
I noticed my left hand was having trouble holding items, the muscles between the thumb and index finger had wasted away. Within a few months my right hand did the same. This concerned me, so I went to my PCM.
Later in 2014
Extensive labs for common concerns: heavy metals, toxins, Lime Disease, MRI’s, CT Scans and two EMG’s — INCONCLUSIVE!
My PCM tried for a second opinion in Houston. Insurance denied, this is now early 2015.
In 2015 I began experiencing the following:
Tripping at work
A slight limp
A friend recommended a neurologist they had experience with. My record were forwarded to the clinic. Appointment scheduled for 9 am, October 14th, 2015.
After a brief exam and review of history, symptoms and discussion of possibilities, he excused himself. When he returned, he explained that he stepped out to review the EMG’s with a colleague.
“I’m sorry Mr. Reyes, everything is indicative of ALS. Are you familiar with it? “ I am. “unfortunately there is no cure or treatment to stop it, and is fatal. “
That da I was prescribed Riluzole and Neudexta, in addition to being referred to an ALS center of excellence in San Antonio. This was to confirm the diagnosis and to explore treatment options. December of 2015, ALS confirmed.
Present day, 7.5 years living with one of the most devastating diseases known. I have extremely limited use of hands, use a powerchair to navigate through life. I require assistance with every day to day activities that we all take for granted. I am unable to walk without assistance, otherwise I will end up on the floor.
My swallowing, breathing and speech are affected. I have a feeding tube in place and am attempting to become proficient with my eyegaze, the computer that will speak for me. Allowing me continue engaging with the world.
Of course there are many minute details that build the time-line that I haven’t included. Not because it’s too much to share, but because it’s unique to me and I also don’t want to keep you up at night. Because it would in fact make you wonder how the hell we endure this living horror.