Below is the story about Seth and what he is battling from his wife, Krystal...
My husband worked at an autoparts contractor for over a year. In that time, he was worked seven days a week each week during the day, then seven nights a week after that. He was placed in a paint booth with a dirty filter that was roughly eight months overdue in being changed. He asked about once a week for a painter’s mask and was told “sure, we’ll get you one.” It never came. My husband came down with a sinus infection in October 2019, and became increasingly tired. By December 2019, he was beginning to talk slurred in the evenings. If I did not know him so well, I would have thought he was drunk, literally! It had gotten that bad that quickly. These were the first symptoms of ALS. We have since been from Alabama all the way up to the Mayo clinic in Rochester Minnesota, where we sadly confirmed that this is the only diagnosis left. Fast forward to today, we are getting a wheelchair ramp built, and had him fitted for a power chair, as we have no idea how much longer he will be able to walk.
There is no cure for this disease. It progressively takes a little chunk of function, each time there is a big decline. With each decline there is a new need for adaptive equipment and changes to everyday life. I do not know what the future brings in total, as the best advice I have gotten in dealing with it is to take one day at a time. That being said...each day, I am looking for better ways to make my husband comfortable and to attempt to slow progression. I cannot work because my days involve being Seth's caregiver, while also caring for my 7 yr. old son (which also includes homeschooling him).
We are in need of funds now, and continually, as the disease progresses. Anything will help, because there are always going to be medical bills associated with this disease.
We are going to need a power chair that has a $4,000 addition for a lifter that allows for independence, which is not covered by insurance. We eventually need extra procedures, modified barium swallow tests, maintaining breathing equipment, and several types of durable medical equipment. In addition to these, I make my husband a smoothie twice a day with fruits and vegetables and a wide array of vitamins in the hopes of keeping his overall being as healthy as possible, for as long as possible.
Other things that can help are prayers; we accept them gladly!! We could use help with spending time with him. We are always looking for promising clinical trials on the CDC website and ALSuntangled.com. If anyone finds anything or has any advice, we would love to hear from you.
At this point, he cannot work because of his illness, nor can I, as I am his primary care giver. We will have a fixed income, but it will be modest and will by no means cover the expenses we face. Any little bit helps, and we appreciate support and prayers more than you will ever know! All of our family and friends mean the world to us. THANKS for your support!