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Showing posts from 2023
"Hi everyone, I'm finished with my surgery, and my foot feels pretty good. Thank you for your prayers." ~Les Les recovering at home - Day '0' Les has a plate vertically along the bone on the outside of his left leg down near his ankle and then some screws on the inside of his ankle with some support straps horizontally between. It can remain in his leg forever unless there is future discomfort. His total recovery is projected to be 6-8 weeks. Under normal circumstances, a person with this surgery would get a walking boot and be able to start putting a percentage of their weight on the foot after a couple of weeks, but with the complications of his right leg being impacted by the cerebellar atrophy and not being able to control his ability to walk very well on his right leg, he will be non-weight bearing on his left leg for at least 4 weeks. Then we will explore the boot idea. This afternoon was fairly uneventful. Les came home and texted his friends about his surg

Navigating Life's Rollercoaster: Two Steps Forward, One Step Back - An Update on Les's Journey

Two Steps Forward... Things were looking up in late October and early November. We found a mobility device that seemed to meet Les’s needs and ordered it but it won’t get here for 4-6 weeks. Then we also started remodeling Les’s bathroom to make it “accessible” though not officially ADA. I’ll expound on these two items in future posts when there is something more to show you One Step Back… Then, last Sunday, Les tripped or twisted his ankle, we aren’t quite sure which, and he broke his ankle which will require surgery.  Of course, it was on his “good leg” so now he can’t walk and is bedridden. Surgery is scheduled for next week on Tuesday 11/21/23. And then 6-8 weeks of recovery - no weight bearing on it, so basically bedridden for that whole time too. 😕 In the last few days, we have learned much about moving a person without picking them up and without them putting weight on their feet. Les is becoming a champ at the slide board. It is exactly as it sounds, a board th

Empowering Les: Navigating Neurological Therapy and Mobility Challenges

Before we had the name “Cerebellar Atrophy”, we had come to the conclusion on our own that Les was dealing with a neurological problem. Cecillia came across a program called Z-Health. Their techniques are all based on neurology. Neurology in a nutshell is this -the brain gets input from the body; interprets the input and decides what to do with that information; and then creates some sort of output. Oftentimes one or more of these steps is not doing its job correctly and it causes problems. The idea of Z-Health is to try to identify where in this cycle a problem exists and stimulate that area of the brain to make it work better. That was a super simple explanation - Here is a 6-minute video explaining it a little better - but still simplified. Les has been working with a couple of Z-Health practitioners for about 5 months now. We meet with them weekly over Zoom. Cecillia is the camerawoman and therapy assistant as they ask Les to do various tasks or e

Les's Journey: Navigating Cerebellar Atrophy and Embracing Hope

Hello family and friends, It has been a very long time since I've posted an update. I'm not one to post online much, so you can assume that "no news is good news" in our family. Les has been plugging away since the last update having an excellent life for the most part. He still has a great life, but his mobility has declined over the past year and we have been trying to figure out why. We had an appointment yesterday and they offered a hypothesis for what might be causing the problem. In comparing MRI images over the last two decades, it looks like Les is experiencing something called "cerebellar atrophy". This can be a delayed side effect of the high doses of radiation that he received when he was 4 years old. He actually received an extra radiation boost directly toward the cerebellum because that is where the tumor had been located.  The symptoms that Les is experiencing are balance issues, delayed eye movements (nystagmus - this is intermittent)