DeAnn R

This spring I had to cut my shade tree down. Because it’s been in the 90’s and there’s no sign of it cooling down I’m highly anticipating the umbrella I ordered. It should’ve been here a week ago. My backdoor door opener is hasn’t worked since early last fall. Supposedly the county is working on it. Yes, I’m still waiting on the wheelchair…[Read more]

Initially I was excited to get my hands on the Nike Go Flyease so I could try them out and show all of you. Unfortunately, not for lack of trying, I was unsuccessful in that endeavor. What really irritated me is Nike’s marketing campaign. Because they’re inspired by someone with a disability you’d think that…[Read more]

Just wondering, are you attending the virtual Cure SMA Conference this year? Sounds like next year it will be irl in Anaheim, CA so I figured I’d sign up for the virtual version this year. Are you looking forward to any specific sessions? Of course the timing of the ones I’m interested in isn’t stellar so I’m playing it by ear. Gearing up for…[Read more]

Yesterday I met with my neurologist. Afterwards I also had a physical therapy assessment. That portion was a little tricky to do virtually. However, we decided there hasn’t been a significant change. Because of that along with finding a 1/2 dose of Imodium daily is alleviating my side effects from Evrysdi we decided to stay the course. We’ll…[Read more]

In my neck of the woods Memorial Day is the unofficial kick off of summer.  The original intent is a day to remember those who died serving our country.  Even though we honor these men and women, Memorial Day has grown not only to remember them but reflect on our past to build our future.

Today I think about my little brother, Scott, who p…[Read more]

We’ve talked about if we’d rather be hot or cold.  Now let’s talk about our families and caregivers.  Would you rather be comfortable with the thermostat settings yourself or have them be comfortable?  For years I would just go with their preferences, but now that I have my own place I like to be comfortable so keep the settings where I prefer.

June 2nd I have a telemed appointment with my neurologist.  Mainly we’ll be discussing if I’ll be continuing with Evrysdi or switching back to Spinraza.  Despite being less than thrilled with Evrysdi I don’t know if switching back is worth it.  Not only did I feel better on Spinraza I think physically I benefited more too.  It’s hard to det…[Read more]

Hey everyone!  The process can be overwhelming when you’re looking into an accessible vehicle. What features are right for you? In this video, with the help of my friends and colleagues, I show you key points to consider. It’s nice to have options, so you can find what works best for you and your family. If ther…[Read more]

I have mixed feelings on the rebranding of the organization I received my service dog through.  They announced they’re dropping Independence from the title.  Now they’re going with Canine Companions.  In this way, it will be easier to say and remember and won’t be abbreviated to CCI.  Not only that, their logo is changing.  Instead of the silh…[Read more]