Walking In My Shoes: Living WITH FALS ( Episode 6 )

I would love to give thanks to all of my readers! Thank you, from the bottom of my heart for walking through one of the most epic times in my journey. Walking In My Shoes has been a truly rough outlook on life with FALS. Thank you for making it until the end and giving me courage to continue writing.

Blog Post 6: The Now 

Currently, due to my health and financial situation, I don’t do much. I’m in my room 24/7, with just my thoughts and computer. I have to pay for help—$30 an hour to assist my wife with moving me, cleaning me, and changing me daily. I haven’t been out of my room in over a year. We can’t afford a second worker to help put me in my wheelchair so I can go outside. I just want to feel the sun and air on my body. I have a wheelchair with the ability to drive, so I’m able to control it with my eyes. My wife tried to use a lift to put me in the wheelchair, but I got hurt badly. So, the only option I have is to pay two guys to help me get in and out of my wheelchair. $120 is rough to pay just to get in and out of my chair.

Before I got sick, I was a Karate teacher and involved in youth ministry. I spent my whole life in service to my community. I also worked as a communications tech. I was in the process of receiving a second black belt in Goju Ryu. I was also working on becoming a master in my main style of Okinawan Kenpo Karate. Unfortunately, I wasn’t able to finish due to ALS making me very weak. I couldn’t go to the dojo because it was on the second floor at the time. ALS takes everything away from a person.

My hopes and dreams are to spend my last days teaching Karate. I have schools waiting for me to get back, but they don’t understand how hard ALS is on me. I wish I could take my daughter to the park and watch her play. If I had the money, I would purchase a vehicle that could take me out. Financially, I would love to have funds to pay for extra help to get me out of my room—anything to help me out of my cage. I don’t want to keep wasting my days away in bed all the time. I would love to have some normal parts of my life back. It’s crazy how having money can change all of this.

I spend my time now being an ALS mentor for I AM ALS. I try to help others in my ALS community. I also joined an ALS group on Facebook to help out PALS. ALS - Patient and Caregiver tips for every day living Click for more details.

Anything I can do for anyone else is the only outlet I have to a normal life. I love helping Bridging Voice out when I can. They are great at keeping PALS connected to the world. They’ve partnered with a voice company called ElevenLabs. They help PALS get their voice back using AI technology. I lost my voice before I could save it. Nachum from Bridging Voice is trying hard to get me my voice again.

If you ever find yourself needing a great medical team to add to your current one. Take a moment to look up Synapticure services. My nurse Michelle and I have become great friends. I just wanted to share a little bit about myself and my life with FALS. If I were to write a third of my current life, it would be as long as a standard book! Lol. When I wrote this it wasn't intended for the public. I wrote this for a grant I applied for at the beginning of last year. I shared it with one of my leaders and they suggested I should release it. I just wanted to thank whoever is reading my story. I tend to write a lot. I blame it on being a Communications Tech. I give thanks to God for having me live so long. Be on the lookout for other projects I'll be posting.

( Conclusion )