Y’all know how much I love my devices, so much so that they each have been assigned affectionate names. Unfortunately we have had to retire some of the crowd favorites as this disease continues to progress. Let’s meet a couple of our old faithfuls, shall we?
Phil was a great companion. Named after my favorite TV character, Phil Dunphy, he was a great conversation starter and traveled well. He almost became a Boston resident by rolling off the TSA conveyor belt and remaining at security. Giving up Phil was a difficult but necessary decision.
Garth was practical once we got him upgraded to a four wheeler, flipped’em a couple of times mostly out of stupidity. Our first concert together was Garth Brooks at the Houston Rodeo, hence his name. We quickly fell in love with his basket and beer carrying ability. An opportunity to upgrade moved me away from Garth, but he was at the center of many great adventures.
And now for the newer faces on this journey.
This is Sallie, named after her first partner in crime my Great Aunt Sallie Artman. We’ve been fast friends, scootin’ around the house and short distances in public. She sports a purple bicycle horn that annoys all who crosses her path. We can throw her in the back of the truck and she’s not afraid of the rain. Sallie is a big part of maintaining my independence and will be part of my wardrobe for years to come.
Baloo is everyone’s goodest good boy but this is about Eugene, my new tracking companion for an ALS study. Mass Gen states, “There is a need for new ways to collect data about daily functioning in order to better understand disease progression, and ultimately help us create ways to progress ALS research with new outcome measures.” Eugene will be around for about 10 more months and the study is still recruiting if you’re a pALS. Lovingly named after the middle name of my best friend Lancer, when I enrolled in the study I had the choice of wrist or ankle device. In my mind the wrist option was going to be closer to a fitbit but as you can see it’s much bulkier. Mom and I have giggled a lot about the stories we could have shared over why I was wearing an ankle monitor, but that ship unfortunately sailed.
Last but certainly not least, this is my noble steed Phil. Don’t get confused, this Phil is the legendary Phil Green. This upgrade has taken my mobility and independence to all new heights as I can walk Baloo, roll around Hico, and even keep me dancing. Safety and confidence are major factors that impact my anxiety on a daily basis so Phil serves to keep me emotionally and physically safe when venturing out into the world. I’ve started decorating him with stickers from our adventures and lights so that you couldn’t miss me if you tried.
All of this is a great time to direct your attention to this amazing resource that was compiled by the badass women of Her ALS Story. I’ve personally purchased items from this list that make my everyday easier. All of the adaptive equipment in this post help me stay me for just a bit longer.
2 thoughts on “1.10.22 New Faces”
Hi Sunny! I wanted to formally introduce myself! I saw you at Jim Hilliards party a while back. So very sad to lose another amazing friend to this devil disease. I am not sure if you recall but we sat at the same table, but since I am unable to speak and my husband spent most of the evening roaming around talking, I never introduced myself. Anyhow, I was also a patient of Dr.Heitzman for several years and everyone always said you need to meet Sunny! Yall are so much alike! This went on for a few years lol and I thought well maybe one day! Then I finally got the chance, and blew it. I just wanted to say that I enjoy reading your blog! Keep up the great positive attitude and you will continue to inspire many! I am always willing and able to advocate, so please let me know if you ever have something come up! Blessings, Trece Porrata Trece’s Warriors
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hi trece!! yes of course i remember you and hate that we haven’t been able to see each other again since, stupid covid. i’m so thankful you are well and truly appreciate the encouragement