Favorites from our Florida vacation - on the Jolly II Rover

Steve Hughes

First post: Feb 6, 2022 Latest post: Sep 22, 2023
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

GoFundMe: https://www.gofundme.com/f/steve-hughes-als

Steve's Blog - Working With ALS: https://dataonwheels.wordpress.com/working-with-als/

Steve's YouTube Videos: https://www.youtube.com/@dataonwheels (Living with ALS, Working with ALS, and Working with ALS - Voice Access)

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 with 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. The next step is to meet with a team of ALS specialists (on February 9th) to get a specific diagnosis, rate of progression, and determine our next steps.

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 journal updates will pick up in February 2022. 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

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