DeAnn R

Yay! Home at last.  Since November 17th I’ve been in quarantine due to coming down with virus symptoms and subsequently testing positive.  Fortunately my case was mild and no one else I’ve had contact with, including Mom, has come down with it.  Although the caregiver I believe exposed me did test positive.  Everyone should be in the clear now…[Read more]

As Thanksgiving approaches I am thankful for the treatments that are now available. After much consideration I’ve decided to pursue Evrysdi. Today in fact I had a telemedicine appointment with my neurologist and he prescribed the new medication. Now it’s a matter of submitting it to my insurance. Since overall it’s less expensive than Spinraza I’m…[Read more]

Hey everyone!

Autumn in Minnesota is unpredictable, to say the least. That’s why I decided to take advantage of what could possibly be the last nice day of the season and get out and about. Since socially distanced activities are somewhat limited, I decided to have lunch with Mom at a local park. I…[Read more]

“Detected.” Not what I had hoped to hear. After months of eluding this tricky virus I was exposed by a caregiver and tested positive. Fortunately by the time the results came in I was feeling better. Although I didn’t have a dire case, I can see how it could become serious for certain individuals. There was a point during my illness where I…[Read more]

As I mentioned earlier this week one of my caregivers has been exposed. Not only by someone at her other job, but her mother also tested positive. My plan was to have my other caregivers fill in while she got tested. Of course plans changed Monday when I woke up with a slight sore throat. It went away, so I didn’t think much of it. Tuesday…[Read more]

So, my new chair had a sticker on it to activate the Bluetooth. What does that do? The rep couldn’t tell me much. Although I’m intrigued I’d like to know more before I just start messing with things. Have an inkling it might be something I love if I can figure it out.

Although I love trivia I’m not that good at it. When this invitation came through my email I figured why not. Sounds like fun. Cure SMA is hosting two virtual trivia nights for adults with SMA. Read more about it here http://events.curesma.org/site/PageServer?pagename=Virtual_Trivia_Night_Home

Having two cats and a service dog myself I loved Katie’s latest column, Some Trails are Buddy Trails. Hearing how Eva came into their lives is heartwarming. My takeaway is that sometimes the struggles we go through, Buddy Trails, allow us to appreciate where we are in life. Do you find that to be true? Did you have any other takeaways from her column?

Hey everyone! Here’s my latest vlog. In September, I was unexpectedly invited on an epic adventure. I was notified that Canine Companions for Independence possibly had a successor service dog available. I wasn’t expecting the call until November or February. What that meant for me was a trip to Ohio for a week of t…[Read more]

A message just came through from my neurologists office regarding if I am interested in the new SMA treatment. They’d be happy to schedule an appointment to discuss my options. I’m still on the fence but am seriously entertaining the idea. If you’re on Evrysdi I’d love to hear how it’s going. If you switched from Spinraza do you feel you made…[Read more]