Hi Shelby, thank you for sharing your story. Your story touched my heart and hits really close to home. First of all…You are doing awesome in your journey and fight against ALS. It’s great that you have such family support, that’s really important. My older sister Tonya Monden was diagnosed with ALS in 2015 and fought hard until February 2023. Tonya had taught school for over 30 years in Lake Dallas, TX and received her degree from Texas Tech. She was a true Red Raider!! Tonya was always surrounded by friends and our family helped with her care. My older brother was financially able to pay for anything she needed to help her quality of life better and during the pandemic in 2020 I started as her main caregiver until 2023. I managed four other caregivers, so Tonya had the best of care. ❤️ Tonya received a trach in 2016 and received all nutrition and meds through a feeding tube. This was a family decision to hopefully prolong Tonya’s life to enjoy her grandkids and other upcoming family events. We had a handicap van and a mobile chair for her and Tonya and I took trips everywhere, including several to Lubbock for our niece and nephew Tech graduations (my brothers kids). Tonya and my brother loved Tech and both attended Tech at the same time in the 80’s and actually have bricks at Tech with their names on them. My brother just recently had the Tech Rawls School of Accounting named after him, a great honor. After losing her speech, Tonya was able to communicate with her eyes by use of a computer. First she used the EyeGaze and then later received a Tobi system. Tonya loved to get pedicures and we would all go as a family monthly and get them. Sometimes we would have 10-15 family members lined up getting painted toes. It was great!! The main thing is, don’t let ALS win in taking away your life’s dreams. My sister enjoyed every day of her life and we did everything we could to make it happen. We got her up and dressed everyday. Tonya was always a dresser and the girls were always great to get her makeup on and the jewelry she wanted to wear. Tonya always enjoyed the ALS support walks and we usually had one of the largest groups walking with her. I know I’ve said to much, but just want you to know that you are not alone in this fight. I’m praying for you and your family and hopefull for them to find a cure someday for ALS.
Keep up the FIGHT!
Love
Kyle Lyons
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