Thank goodness the saying isn't "Gracefulness is next to Godliness" otherwise I'd be in big, big trouble. You see, I fall down, a lot. I blame it on not picking up my feet, and so does my mother. It was exceptionally bad during the Croc phase - you know what I'm talking about, we're all … Continue reading 12.15.17 Graceful I Am Not
ALS – SunnyStrong
Amytrophic Lateral Sclerosis or Lou Gehrig’s Disease, SunnyStrong is our team for surviving life with this horrible disease
A Day in the Life at the ALS Clinic – The Berkley Family
Carmen's story is a lot like mine: diagnosed in January '15, completely lost but determined, and worried about the toll ALS is having on our families.
12.13.17 Dia de Importancia
Today is a big day in my little world. Though the importance has little to do with me personally, it's the celebration of two of my closest friends that gives this day so much meaning. Without this day, the people below, and the significance of December 13th my life would look completely different, in the … Continue reading 12.13.17 Dia de Importancia
Round 3, 9&10
and just like that, we're done with round 3. Round 4 starts 12.29.17. ALSFRS-R Scores: 12.10.17: 34 11.16.17: 35 10.19.17: 34 according to Radicava.com : ALS Functional Rating Scale–Revised (ALSFRS-R) The ALSFRS-R consists of 12 questions that evaluate 4 domains (fine motor, gross motor, bulbar, and respiratory function) in patients with ALS.1 Items: speech, salivation, … Continue reading Round 3, 9&10
Fight Depression by Keeping Watch on Ourselves and Others
DECEMBER 4, 2017 BY RACHEL DOBOGA IN COLUMNS, THE MIGHTY MIND - A COLUMN BY RACHEL DOBOGA. Depression is a sneaky beast. It’s the monster beneath the bed, waiting until you’re vulnerable to grab you by the ankles, drag you into its dark, misty kingdom and leave you to wander alone. I’m just stumbling out of a month-long … Continue reading Fight Depression by Keeping Watch on Ourselves and Others
Round 3, 7&8
de accessed the port after last nights infusion and it made this suction kind of pop when it came out. i jumped, and we almost lost kenneth. poor guy, he's come a long way with all this stuff. today's appointment included cookies #winning two more infusions and we're done with round 3, hooray!
12.8.17 Stupid Poof
Remember when I told you that I was losing my shoulders? Well, here's what I'm talkin' 'bout, Willis: Obviously my bra agrees as it couldn't dare be bothered to remain in hiding - don't judge! It's hard to see those pics side by side, I feel like I'm crumbling in the pic from this … Continue reading 12.8.17 Stupid Poof
Round 3, 5&6 and then some
Port life is a dream, round 3 is easy peasy lemon squeezey. Today was my 12 month visit for the PHENOTYPE, GENOTYPE, AND BIOMARKERS (PGB) IN ALS AND RELATED DISORDERS study at UTSW with Nina the Great. Good to catch up, got my blood on the second stick (after we shot the tube out once), … Continue reading Round 3, 5&6 and then some
Round 3, 3&4
Two more flawless infusions with nothing overly exciting to report, whoo hoo! I found this fun little info graphic the other night while I was looking for something in my insurance app. Interesting article from The New York Times: A New Drug for A.L.S., but the Diagnosis Remains Dire states: The Food and Drug Administration … Continue reading Round 3, 3&4
12.3.17 Hi Pot, meet Kettle
My entire 30 years on this planet have been dictated by some other agenda: sports, school, work, etc. so this last month has been completely foreign to me. Doesn't get done today? There's always tomorrow! Sleep until I wake up? Sure! No pants party for 3 days straight? The cat doesn't mind! I'm in unfamiliar … Continue reading 12.3.17 Hi Pot, meet Kettle
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