Here are 8 things to know when you go into surgery: Don’t eat or drink after the hospital tells you. For me – that means no food or drink after 10:30 pm on Thursday. My caregiving team (i.e. mom and dad) should bring a book because they have to wait while I’m in surgery. Mom,… Continue reading 8 things to know
Perfect paradise, tearing at the seams. - Imagine Dragons One of my favorite bands, Imagine Dragons, has this line in Bad Liar. When the song came out, I was in a place of pain and this helped me forget. This was actually last fall and the pain has been at a steady 6 with jumps… Continue reading Tearing at the seams
Amazing concert on Wednesday at the Varsity Theater! Can't even describe how awesome this concert was! The pictures say it all - this band is energizing and exciting. After the last song, the band threw t-shirts, drumsticks, guitar picks, and sheet music out to the crowd. The lead singer, Aimee, saw me and brought me… Continue reading The Interrupters up close
I watched a documentary, To Err is Human, with my mom and dad last weekend. Like Cal Sheridan, who is featured in the film, I also have kernicterus because of a medical error. Did you know that medical errors are the 3rd largest leading cause of death in our country? There are as many as… Continue reading To Err is Human
In the 2018 fiscal year, 16 percent of Minnesotans with disabilities who received state services worked in the community alongside people without disabilities. Chris Serres, Star Tribune, 3/16/19 How is this real? That number needs to be a hell of a lot higher than 16%. I am NOT one of the 16% by the way… although I… Continue reading Barriers to Inclusion Part 3: Employment
The system is stuck! Why aren’t Consumer Directed Community Supports (CDCS) options on a level playing field with traditional Personal Care Attendant (PCA) Services? We need to rethink the model and provide real options and choices without being penalized for choosing CDCS, even though that's the choice that provides more flexibility and choice for the… Continue reading Barriers to Inclusion Part 2: Caregivers
Today, Chris Serres, reporter for the Minneapolis Star Tribune, wrote an excellent article about how Minnesotans with disabilities are fighting barriers to inclusion and unfilled promises. I love seeing Chris Serres’ articles because he gets it. He’s able to tell the world about what it’s like to try to navigate this system and what happens… Continue reading Barriers to inclusion
Why did I write this book? It seemed like a good idea at the time I started writing, but now that I am editing, let us just say that there are moments when I feel like the book should be thrown into the garbage can and then the garbage can should be thrown into the center… Continue reading The scary part of editing
Follow up to last week’s post about Google Live Transcribe app for Android. I had another doctor’s visit with my Movement Disorder Team on Thursday, so tried out Google Live Transcribe again. We made a video while waiting for the doctors to come in to the room. “Huh, you say? Not a video!” Yes, a… Continue reading 3…2…1 Action
The toes report Met with the orthopedic specialist on Friday. Surgery in the next month or two as soon as it can be scheduled. Basically, the muscle tone and uncontrolled muscle spasms in my feet have caused my big toes to be just shy of dislocated. I have really strong muscles! And as I’ve mentioned… Continue reading Discoveries
Justin Smith Writes 