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Living with ALS: Scott Jones’ Story

My name is Scott Jones. I am 51 years old and have been married to my wife, Rose, for 18 years. We have five children, 3 daughters-in-law, and one grandson. My family is my pride and joy.

I have always been an avid outdoorsman, hunter, pool player, and hard worker. I have worked for Chevron corporation for 24 1/2 years. I have played many pool tournaments from Colorado to Wyoming to Las Vegas. I have even played a doubles tournament with professional pool player, Shane VanBoening. Needless to say, we won! Looking back, I estimate that my symptoms started around October 2022. It began with muscle twitches and weakness in my right arm. At first the muscle twitches were random, then progressively started to become more constant, eventually crossing over to my other arm. After seeing my doctor and doing some of my own google diagnosing, I was told I may be dehydrated and to drink more water. I was also referred to an Orthopedic doctor for the weakness. I was given an MRI but there was nothing the doctor could see that would cause my weakness. He referred me to physical therapy. However, at my wife’s insistence, I scheduled an appointment with a Neurologist at UC Health Greeley. After completing an EMG I was referred to Anschutz Neurology with Dr. Sreenivasan. After another series of tests and bloodwork, I was officially diagnosed with ALS on August 1, 2023. This is when my battle began. In addition, I was notified that I carry the C9 gene mutation that causes this horrible disease. Sadly, one of my sons has tested positive for the same gene.

Upon diagnosis, Rose and I were a little lost. Rose reached out to ALS United Rocky Mountain through their website and was immediately contacted the next morning by Megan Frisk. We were provided with a lot of educational material and sent a packet with several helpful items. Unfortunately, I have progressed pretty quickly. In October, I started experiencing weakness in my legs making walking difficult. I use a non-invasive ventilator, no longer have the use of my right arm, and have limited use of my left. I can no longer do the simple things you take for granted. Giving hugs, feeding myself, shaking a hand, or holding my grandson are no longer something I can do. I have been blessed with the support of my wife, children, family, co-workers, and friends. My company has gone through great measures to accommodate my needs and my wife’s employer has provided us with much-needed equipment and assistance as well.

By the middle of December, I knew for my own safety that I needed to be in a wheelchair. I did not qualify for one through my insurance. One call to ALS United Rocky Mountain and I had a loaner wheelchair within a week of my request. They have been a constant blessing to us. They have also provided me with additional equipment (delivered right to my door) as my disease progresses. There is never any hesitation and if something is not available, I am immediately provided with information on where to obtain it. Most recently, I have received an eye gaze device to assist with my talking as I slowly lose my voice. Megan, Kaleigh, and Suzanne have been a wonderful support. They always go above and beyond to assist in any way possible. The monthly support groups have been very valuable and something we look forward to every month.

No one wants to fight this battle. At the end of the day, I know I will leave this world and walk again. I will walk right into the arms of my Lord and Savior. It is the loved ones I leave behind that I worry about. I do not want them to ever have to personally fight this battle. I find comfort in knowing that even after I am gone, ALS United Rocky Mountain will be a resource to assist. Without the support and research of ALS United there may never be a cure. Thank you, ALS United Rocky Mountain, for all you do.

Praying for a cure,

Scott Jones

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