Month: May 2021

So here we are a year and a half post-treatment. To be honest, I kind of thought I would be feeling better right now.

I think that I have been dealing with a longer, gentler “roller coaster.” While some of the tone has died down, like I documented the last time around, some of the new symptoms I’ve experienced since the treatment are still around. Although one painful one is getting better.

I have also been experiencing some increased weakness. But I think that is due purely to how much I’ve been sitting.

The MS Gym has also reorganized itself. Their feedback has been largely positive, but I’m not sure that it is the best thing for me.

I have also become more aware, that the scale for recovery post-treatment doesn’t go from “lots of reversals” to “stayed the same.” There are people that experience worsened symptoms. I am just hopeful that any increase of symptoms continues to improve.

What I have been finding is the amount of time my Fitbit says I spend in REM and Deep sleep has gone up from pre-treatment. I’m hopeful this will continue to climb until I’m sleeping normally for my age. And I have had a couple nights where I slept for six or seven hours straight without getting up to use the bathroom.

I’m thinking, also, many people report this year to be their worst year. Hopefully with the pandemic and everything else in the rearview mirror, things will continue to improve.

I know this sounds a little doom and gloom, but I am still hopeful. And on another note…

Kaiser finally bought me my Bioness devices!

I got the confirmation just shy of 2 years after having found out about their existence. It was a long process of finding the right person to prescribe it, renting them, getting my PT to document the improvements, and finally having her write her referral.

When I first put them on all that time ago, it seemed to dial back the degradation of my gait by about 8 months!

they are what is known as FES (functional electrical stimulation). I like to think of it as what Star Trek calls a neuro-stimulator. They sit on top of my nerves, and when the accelerometers in them detect the correct part of my gait, they stimulate the nerves to lift up my toes.

They aren’t cheap. That’s why Kaiser want you to use braces instead, that wrap around the calf, and hold the foot bed up. They never worked too well for me, and even if they did, it just seemed to me that it would cause the muscles to atrophy. In this case the muscle is actually being used!

Even with them, I’m not back to where I was before the treatment. But my hope is that with their help I’ll get there.