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Jul 19, 2017 Latest post:
Sep 25, 2017
As many of you know, my dad, Harold Reed, was diagnosed in October of 2016 with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease.
Over the last 9 months, we have slowly watched him lose his independence with first losing use of his right hand and arm and then his left hand and arm. We have had great care at the VA ALS Specialty Clinic along the way as they have helped us through many challenges and given dad and our family some tools to help him regain some of his independence back. Most recently, he was provided an eye gaze computer that he can select words, control the television, turn his light on and off and also sound an alert if he needs assistance. If you ask any of us that have been around him while using this device, what he enjoys most about it (other than giving him some independence back) is that he likes to use it as a toy (or an annoyance)....from sounding the alarm alert which more times than not causes his wife, Roberta to come rushing in to find him laughing at this "false alarm" he set off on purpose to tease her. He also likes to use this eye gaze computer to change the channel on other people when they have landed on a station they want to watch, often causing a "remote war" that typically ends with him winning that battle. Dad has continued to be mischievous all throughout this journey. He loves to play around with those that he loves; so since he can't use his arms to play, he now uses his legs to kick, tickle and wrestle....and boy are they still strong. I have always said….he will never “grow up”.
It is with a heavy heart that I share some difficult news that none of us were expecting to hear at my dad's quarterly VA ALS clinic assessment on 7/18/17. Dad's breathing test went from 62% lung capacity down to 25% over the last 3 months. We have seen some significant changes in his speech, swallowing, breathing and energy level in the last month or so, but we never thought we would hear that his respiratory muscle function was declining the way it is. Due to his respiratory failure and other symptoms that have come on quickly, we have been encouraged to have hospice care walk these final months with us. Only God knows how long we have with my dad, but we will spend the upcoming months cherishing every moment of time we have left with him.
I have started this site so we can keep family and friends updated in one place as my dad has so many that love and care about him, we don’t want to miss anyone! The "Guestbook" or "Thoughts and Well Wishes" section on the site is also for you to share your support, prayers and words of encouragement to my dad, Roberta and all of our family. I will also be adding journal entries with updates as we continue walking beside dad together.
Please pray for peace and comfort for my dad and our family.