Summer of 2013
Well that was weird!? I had Tripped several times, kicking a soccer ball at a park with the kids.
Early 2014
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
Difficulties writing
A slight limp
Excessive fatigue
Emotional breakdowns

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.
TJO

ALS Awareness Month: Day 3

True or False?

How about, True & False.

Yes ALS itself does not cause pain. As the motor neurons deteriorate, loss of function (movement) ensues, pain receptors remain in tact. However the pathology of ALS does not elicit pain in and of itself. So ALS the disease process, is not painful. Now before you jump on me for stating this, be aware that pain does in fact accompany the effects of ALS on the body, mind and soul.

The body – as the neurons die, muscle weakness follows, leading to atrophy. This, in advanced stages of ALS, is what makes us appear gaunt and emaciated. Limbs begin contracting, cramps are a precursor of this. But not just feet, legs and arms, oh no. Cramps in the abdomen, neck, fingers, toes and tongue. Strictures, the locking of limbs, and the neck. Which contorts the body into uncomfortable positions. All of what I just mentioned are painful.

Little known pains associated with ALS:

• Heel pain/burning due to foot drop
• Hot flashes
• Sensitivity to cold
• Fasciculation’s (all body twitches)
• Yawns, causing lockjaw and full body spasms
• Tongue and cheek biting
• Neck pain due to head drop
• Injuries as a result of falls

But yeah, ALS is painless…

Mental and spiritual pain are topics onto themselves.

TJO

ALS has just shattered your world, what now? You and your family are left to do what… pick up the pieces.

Much like every shattered mirror, the pieces that remain, are unique to that mirror. So is ALS, your ALS is unique to you. You will put yourself together, when you come to terms with it. Not the same you, though. Cracks are rampant, just like those annoying muscle twitches, fasciculation’s. Every day you wake and look at yourself, everyday a new you. More cracks, perhaps now missing pieces, pieces of you.

How do you begin to pick your pieces up? First you have to face yourself, yes, you are from this moment on, a different person physically, mentally and spiritually. You now live with the knowledge of what will most likely be your demise. The weight this places on your existence can crush any person. If you encounter someone with ALS, know this. Living with ALS requires strength, humility and above all grace.

Grace is essential for everyone affected by ALS. It is what will allow all affected the ability to navigate the rough waters ahead.

Picking up the pieces also requires arming yourself with knowledge. The internet is rife with information, data and opinions. Be careful, and try to focus on what you need at this point in your ALS. I’m partial to two organizations for essential information and support: https://iamals.org/ & https://www.youralsguide.com/

Now that ALS has made itself a part of your life, you must learn to live with it. Yes, there are pieces of you that are missing now. Yet, you are still the same person, you were imperfect before ALS. Now just a bit more, every imperfect piece of you is still… You.

TJO