“Getting To Know Me” Chapter 20

We die twice once when we leave our bodies and the second time when the last person who knew you dies.

I thought it would be interesting to answer the questions I've gotten from friends, family, and blog readers over the past few months.  I want to let you inside who I am personally, not just in the context of ALS. I also want to thank everyone who asked the question and did not stay silent to protect my feelings. I am an open book and welcome all questions. Never hesitate to ask me a question or tell me how you feel. Lastly I hope that by sharing my blog and stories, I will only have to die once.

Do you have any pain?

Yes, but it is not muscular. My pain is more in the joints. I'm achy most of the time at a 3 out of 10, but if I move the wrong way or stay in the same position too long it can be up to 8 on the pain scale.

Is there anything you miss?

I miss the freedom to get up and move. I also miss cooking, enjoying the taste of good food, sleeping next to Laura, giving a good hug, gardening, and volunteering.

Knowing ALS is terminal, how do you stay so positive?

I have moments when I get frustrated, angry, and upset.  But then I think, "what do those emotions bring me?" If I stay in those feelings it will not only affect me, but also those around me. I am blessed to have lived a great life. I have a beautiful family and friends who lift me up mentally and spiritually. God has blessed me with all the resources I need to go through this journey.  Although my voice has grown silent physically, I still roar. My blog, social media, and technology gives me a voice.  Lastly, I think what is age, anyway? My bucket is full. What will more years bring me to make me happier than I am now? Yes, maybe grandkids, but I don’t have any to miss, so I don’t know what it feels like. Bottom line is if you have one foot in yesterday and one foot in tomorrow you are not living in today. I chose to live in today.

If you had to guess, what do you think contributed to your ALS?

I cannot say directly. I can say for me my first symptoms came shortly after my first COVID shot. Statistics say military are twice as likely to get ALS.  Since only 10% of ALS is hereditary and it is not in my family, then it must be from other conditions.

When using the PEG do you feel anything?

Like you I feel hungry, full, hot, and cold. Feeding for me is only for sustainment of life.

Why did you start the blog?

Shortly after my diagnosis I felt that God spoke to me and gave me a mission. I truly believe I was meant to tell my story and teach others about ALS. I started posting on Facebook, but after speaking with my family and friends, we came upon creating a blog. Thanks to those family and friends, as well as Katie who help me create the website, the blog was started. My hope is that if I can help/teach one person, then I have completed the mission God asked of me.

When your trachea is being suctioned, what does that do and what do you feel?

I am unable to cough because my muscles have weakened as a result of the ALS. So using the suction through the trachea pulls out any fluids in my throat. The suction hose goes directly into my wind pipe, and if it goes too far down, it could hit the trachea split. If done correctly I feel very little, but if done wrong, it can damage the walls of my trachea and that hurts.

Where can I learn more about ALS?

I recommend ALS.org. This site is a comprehensive site with many other resource connections to completely help a paitient with ALS.

How can I help?

I love knowing my friends and family love me and want to help. As I said earlier, I am blessed.  As a veteran, there are many resources the VA provides. Home improvements, van, all personal equipment and food. They also provide a stipend for your authorized caregiver. So as far as physical things we are good.

In other ways, though, I ask you to share my blog and story. Tell others about ALS. Go to ALS.org and find a local chapter you can help. What I love most is receiving a text, email, or visits that give me time. This truly fills my heart, and if you are here, I love hugs.

How did you know you had ALS?

At first, like most people, I had no idea what ALS was. I did the ice bucket challenge, but did not know I was supposed to donate. I had heard of Lou Gehrig Disease, but not know it was the same as ALS. So when I first stared seeing symptoms, I had know idea what was going on. It took me three months just to think I had an issue to see a doctor. It was around October 2021 when I first hear motor neuron disease. After seeing the second doctor is when ALS reared it’s ugly head and I started researching it.  Still hopeful that what I had was not ALS, I did not know for sure until May 2022. Since there is no official test to determine ALS, doctors use EMG tests and look at symptoms to make an official diagnosis.

What was your favorite job?

I would have to say out of all the jobs I’ve had I would have to say it was being a Small Group Leader at the US Army Military Police school. There I worked with the best teammates in my life. John, Denise, Tom, Sam and the other SGL’s, we had a great time and were a family.  We were SGL’s for Basic Non Commissioned Officer course and were shaping  the minds of our future leaders. I absolutely love teaching and this job is where I learned my craft and was awarded the Master Instructor Certification and Military Instructor of the year for Ft Leonard Wood.  Over the years I would meet former students who thanked me for mentoring them, which gives me joy.

What was your favorite place you have ever visited?

I have been blessed to travel to many places around the world. Panama, Honduras, Great Britain, Europe, Korea, East Timor, and Australia are all on the list. I have traveled to 48 of the 50 states, Mexico, and Canada.  But if I were to chose one location, I would have to say San Jose, CA where my in-laws live. I love every minute spent with them and have such a deep love and respect for them. There is no other place in the world I'd rather be.

If you could be fly on the wall to any conversation, what one would it be?

Financially: the conversation of the Apple CEO going public on the market.

Love: the first time Laura told someone she liked me.

Job: the interview panel right after my interview.

What scares you the most?

Disappointing my wife and children as their father. Sure, I have told them "no" at times, which may have upset them. But what I mean is disappointment that is so bad I lose their respect.

Additionally, it scares me to not being able to take care of my family and their needs.

What is the worst thing about ALS?

Unlike Alzheimer’s, where the victim loses their cognitive abilities over time, ALS takes a piece of you one day at a time while you remain fully cognitive and aware. Neither disease is forgiving on the patient and neither have a cure.

I hope sharing my blog, answering questions, and being open help you understand ALS better.

Thank you all for taking this journey and living with me.

Love and blessings