Steve Hughes - ALS expenses

Thank you for visiting our GoFundMe and helping our family with upcoming and current expenses that accompany the ALS diagnosis. Many of our family and friends have reached out asking how to help, so our kiddos offered to set up this GoFundMe for us. Prayer is first and foremost the best way to support us, so thank you to the numerous prayer chains that have been built on our behalf.

About ALS:

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.

ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need.

Known upcoming expenses:

1. $30,000 - Wheelchair accessible van. The KY ALS Vocational Rehab team will generously do all the retrofitting for this van to make sure it fits Steve's exact wheelchair, but we are responsible for buying the van itself.

2. $2000+ - Surface Laptop for personal use. Since Steve can't use his phone easily to communicate or access the internet, he'd like his own personal laptop that can travel with him to any room in the house instead of only having accessibility in his office.

3. Generator. Many of Steve's equipment such as his ventilator, power wheelchair, reclining lift chair, and stair lift, run on electricity. Although most have a short-term battery backup, many only last for a few hours before needing to be charged again. It is scary when our power goes out during storms and we are unsure how long it will be until we can charge his equipment again. A generator will give us the peace of mind needed during storms.

4. Other. As Steve continues to push for the ability to work, there are a lot of little expenses that pop up (buttons for his feet, eye movement technology, different mouse options, etc.). There's also a chance he will need a new bed that fully lowers and raises as he loses the ability to stand. We never fully know what he will need and often make adjustments on the fly.

For more details and current updates, please see below and visit CaringBridge (https://www.caringbridge.org/visit/steve.hughes) where we keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for your help, every little bit helps.

BACKGROUND INFORMATION from 2021 and how this all started:

July 2021: Steve first noticed issues when he was unable to hand screw a screw. Seemed odd, but just chalked it up to getting older or possible arthritis.

August 2021: Had his annual physical with his primary physician and mentioned the issue with his hands. The doctor did some preliminary hand strength tests. Steve had no pain, no tingling, and no numbness in his hands or wrists so there weren't any real concerns. The doctor recommended Steve see a neurologist. He scheduled an appointment for the end of November.

Late September/Early October 2021: The issues seemed to escalate. For example, Steve was no longer able to button shirts without help. It was a very frustrating time as simple tasks became nearly impossible. Steve also started to experience some issues with typing. This was the real trigger point for him to try to understand what was happening.

November 2021: A hand therapist friend who works for a hand surgeon was able to get an urgent appointment for Steve at the beginning of November since he was becoming very concerned. The hand surgeon did a full-strength test on Steve's hands, wrists, arms, and some tests on his legs. This process eliminated all of the "normal" suspects such as carpal tunnel and pinched nerves. As part of the surgeon's after-visit notes, he mentioned possible ALS. We did not understand the severity of that possibility until Steve looked it up on the Mayo Clinic site and the seriousness of his condition hit him hard. We waited until we were all together in person with all of our children for Thanksgiving to share in detail what had been happening up to this point and the very real possibility of ALS. Steve met with the neurologist after Thanksgiving and after doing several preliminary tests, he scheduled Steve for several more tests throughout December.

December 2021: Steve had an EMG, MRI, CT scan, lumbar puncture (spinal tap), and a lot of bloodwork tests throughout the month of December. After that set of tests, the doctor confirmed that this is likely ALS. Unfortunately, there is no specific test for ALS so the tests were all done in hopes of finding something else that would be causing the neurological issues. All of his tests came back as "unremarkable" which normally is a good sign, but in this case, it meant the diagnosis is probably ALS.

January 2022: Steve and Sheila were planning to take a missions trip with their church to Kenya, but due to changes in covid restrictions and Steve's health, we decided not to go to Kenya. Instead, we took a two-week vacation and drove to Florida. It was a great time for us to reflect on what has happened and to begin making plans for our future, including moving to Kentucky to be closer to Steve's parents and to get Steve out of the extreme cold as that seems to intensify his symptoms.

The CaringBridge journal updates pick up in February 2022. Please follow our journal to read the rest of our story and continue to follow our journey.

Thank you for reading the background and for praying for Steve and our whole family. We are continuing to trust God through this journey and we know He is still in control. While we have good days and bad days and sometimes we just break down and cry, we are confident that God loves us and somehow this all fits into His perfect plan. We have peace in knowing that even though we don't know what our future holds, we know the One who holds the future in His hands.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7