ALS TEXAS DAD

Hello blogging world, I am a 50 year old husband and father of four diagnosed with ALS 2 years ago, October 2015. I live in San Antonio Texas and I’m also a retired Air Force medic, having spent 21 years in the Air Force at multiple locations around the world. Upon receiving the devastating news, ” Mr. Reyes I’m sorry to tell you but all of your exams and history confirm that you have ALS”, our lives changed inextricably.

 Given that we have so much information available at our fingertips through the internet I was aware ALS would be the diagnosis. This was based on my research of the condition and the fact that I had identified the majority of the symptoms I was experiencing. Of course this is the last thing I wanted to hear given that my wife and I had so many plans for our future once we both retired, her from her long-term Federal position with the Force and me from my third career which at that time was in the nonprofit Arena.

 Of course that day everything changed for us and our family. Even more emotionally devastating wise the fact that we have four children, one biological and three adopted. It really hit me realizing that our three adopted children had finally found their forever home and now we had to give them this horrible news. Of course it was going to be difficult to share this with the rest of our family, and it was.

 Since that fateful day I have retired from my nonprofit position. I’m also a 100% disabled veteran and currently a stay-at-home dad and full-time ALS advocate. My wife continues to work full-time as my children continue their education, with my oldest being a freshman in college. I am blessed to have my baby sister as my dedicated caregiver, don’t be mistaken this is not a pro bono position, this is a business arrangement and I’m lucky that I have my sister as my caregiver.

Where am I in my condition? As of this date and time I have difficulty walking without assistance and I have little to no strength in my hands and arms. Additionally I have both peripheral and Central degeneration of my nervous system. What does this mean? It means that my limbs and all voluntary muscles in my body are affected in addition to my brain or central nervous system. The effect on the central nervous system causes severe mood swings manifesting as full breakdowns or uncontrolled laughter. Both of these symptoms are tempered with a medication. Allow me to clarify that this condition also known as Pseudobulbar Affect or PBA is a condition that is present in many patients that have either degenerative central nervous system conditions or traumatic brain injuries. PBA is not exclusive to ALS.

As far as peripheral onset this basically indicates that all voluntary muscles controlled by the nervous system are affected. This is due to the fact that the nerves in the body are dying, one common theory is that an oxidative environment exists in the nervous system causing the nerves to experience hyper excitation leading to nerve ganglion death. Of course this is an oversimplification. Basically what it means is that ALS patients eventually lose the ability to use their arms or legs and even the diaphragm is affected once the condition is advanced. With respect to the central nervous system this affects your vocal cords, your ability to swallow and this combined with the peripheral effects results in the inability to breathe independently once the condition is fully progressed.

So as you can see this is a very difficult and horrific condition to end up with. Ultimately you’re completely dependent on others in order to lead any quality of life not to mention just to live.

 I know that there are a multitude of other blogs pertaining to ALS. However one of the biggest challenges for ALS and its funding for research is public awareness. On average 30,000 patients are affected by AlS in the United States alone. Every 90 minutes someone is diagnosed or passes from ALS in the U.S..  Although these are Stark statistics, they are not enough to encourage both the government and private-sector pharmaceutical corporations to aggressively pursue research and treatments. This does not mean that there is nothing being done for this condition, far from it. There are major organizations developed by a combination of patients, family members and friends that have partnered with interested investors in order to collaborate on creating a world without ALS.

 So with that said I enter the fray of the blogging world as I try to share my perspective and insights into this condition. I hope to include posts in Spanish as I have an extensive Hispanic family and contacts. I am not a professional writer so please excuse my grammar and structure occasionally. I also only use speech to text so on occasion I will mis and (sic) autocorrect. So wish me luck and let’s hope that I can contribute to the ALS community in a positive and perhaps slightly entertaining way.

 J. Reyes

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