A Splendid Update: Annual Neurologist Visit

Thankfully, the neurologist had nothing but good news to share. My appointment was in late September, so I’m pretty behind! My slow season for business usually starts in September, but it’s the end of November and I’m still going. It’s awesome but there’s definitely some things piling up as a result.

I just can’t do it all anymore but the world hasn’t ended. Who knew?

For the second year in a row, there’s no disease activity on my MRI, which is awesome. The Ocrevus infusions are working splendidly, exactly as they’re supposed to. With two years of no disease activity, unless I develop new symptoms I don’t need to have an MRI next summer.

I was able to do some heel-toe walking, which is like walking on a tight rope. Or a roadside sobriety test! I haven’t been able to do that in years. At least since 2020 when it was tested by my first neurologist for the first time.

I still wouldn’t pass a field sobriety test but it’s an improvement.

I’m also getting upstairs easier, thanks to Christifer of the Christifer Duxbury Dance Collective in Calgary, Alberta. I’m glad I’ve gone back to ballroom dance because it’s been so beneficial but psychologically, it’s the hardest. Going from a high level dancer to…this…is absolutely brutal. Christifer has a knack for finding workarounds for my deficits and I’ll probably do a whole post about it soon.

The other splendid improvement is that I’m way less cane-dependant.

I noticed it first this summer when I was working a night shift at a special event. It was really dark but I think the temperature was in my 10 degree window of functionality. In addition to dark, the ground was uneven grass but with just the AFO on and wearing my work boots I was able to walk around my (small) area of responsibility without tripping, falling, or a cane. It was amazing!

I’ve started leaving the house on good days with just an AFO and a collapsible cane in my backpack, but not in my hand. On short errands, sometimes I don’t need the cane. Other times, I need it near the end of my excursion. Today I needed it right from the moment I closed the front door. I also need a cane for anything like a hair appointment or a pedicure where I’ll be sitting for awhile, because trying to get up and move after a period of sitting is dangerous without a helper stick.

My winter infusion is next weekend.

Lately I’m really fatigued, but I think it’s a combination of a few things. I have a strong, negative reaction to winter’s short days and it’s worse after the time change. I got my vaccines for Covid and the flu the same day. I’ve been so much more active with dance, physio, yoga, and I’m back to weight training 2-3 times a week depending how I feel. I’ve added a cardio day, just a short bike ride indoors, since going for a jog or a brisk walk isn’t a thing anymore and the old “if you want cardio, just lift weights faster” theory also can’t apply any longer.

I’m happy with my new level of activity but I also just turned 44 and I have a permanent neurological condition so if my body needs more rest, I’m okay with it. I’ve become pretty good at snoozles, and I may have a gift for the ten minute power nap. Napping for me is more a sudden loss of consciousness while I’m on my comfy chaise. I get hit by the fatigue train, my brain is suddenly incapable of any thought and my head falls back. Then I wake up ten minutes or an hour later. It’s very unpredictable but I’m learning to trust that my body knows what it needs and when and sometimes it needs a lot of naps.

I’ve had three naps today since I woke up at six am. I don’t normally get up while it’s still dark out, but I was hopeful that my energy was back to normal and I’d had a great restorative sleep.

I was restored for a few hours, then nap attack 1 got me.

My third nap just recently seems to have done the trick and now I’ll have the energy to be up all night until the pre-dawn hours. It’s seven pm and I feel more awake than I have all day.

Anyway…

Things are going really well up until the last week or so but this too shall come to pass. I’m hoping once I get my infusion and the big dose of steroids that comes with it, I’ll feel better and be back on my bullsh!t so keep your fingers crossed for me!