I’m afraid to say that I’m dealing with another set of medical issues. Not clear exactly what’s going on, so I won’t say yet.

(It’s one of those times, again, where I think… “can’t I just have MS? That’s enough, thankyouverymuch.”)

But as we tackle difficult issues, especially ones out of our control, our minds immediately stray to the “why me”s and the “life isn’t fair”s. Especially as one who leads a healthy lifestyle, I’ve had more than my share of “what the…” medical issues that seem to completely come out of left field.

During these difficult times, I challenge you–us–to reframe your thoughts. Instead of “woe is me” or something similar, think constructively about how you can address things, how you can move forward. If this isn’t the way you think, maybe take a moment of gratitude, and think of your wonderful support network. (I, for one, am very grateful for the nonstop support of my husband, who’s dropped everything many times to take care of me.)

After all, attitude is so important. It’s not as though we have scientific data to prove it (happy people get cured, while sad people don’t! is not an easy study to conduct) but there’s strong evidence to suggest that. (Nerd alert! Correlation vs. causation and all that.)

Chin up, everyone! :) We’re in this life together.

I met a new friend not too long ago. And she’s already moving away. (She was here for work, short-term.) A mutual friend hooked us up, as she’s also an active person with MS.

We got to chatting recently–she’s a few years younger than I am, and was diagnosed at a much earlier age than I was (in her late 20s). Prior to her major flare-up, she did some work as a concert violinist. However, she lost enough fine motor control in her hands–and strength holding up the instrument–that she could no longer play professionally.

She’s currently a nurse, and knows my professional background teaching physiology, so she talked about where, in her cervical spine, the MS did damage and led to all of the weakness in her arms. I’ll admit to only having caught half of her detail, because I realized that I also have a similar amount of damage, in a similar area, yet my MS has affected more my legs than arms in terms of strength. (See? All of us have such different trajectories with this disease…)

But–and I feel so silly–what I failed to realize until now is that since the nerves for the legs branch from the lumbar spine, that the bulk of my spinal damage must be lower. I told this friend that I’d only had an MRI done of my brain and cervical spine (yes, they find lots of information lower down, but it’s costly and time-consuming) and she was encouraging me to image the rest of my spine.

I have a lot of damage in the areas I already know about. Putting two and two together now, I’m thinking that I have a lot more around my lower back area. Do I want to know about it? Would it change anything? I would go from “25+ known lesions” to who knows how many…

I don’t know. I guess if I have a flare-up that involves more lower limb weakness, I’ll ask to have my whole central nervous system (brain and spinal cord) imaged. Tough call. I just figure I can’t change what’s done, right?

Until the cure is found… (holding out hope)

I try not to be negative about my MS, whether here or in real life.

But sometimes, I think it misleads people to believe that everything is all unicorns and rainbows. Which it isn’t, right? I have been tired. I have lost strength, and I’ve had moments of blurred vision–not to mention paranoia about losing my night vision.

A few weeks ago, I taught a spin class at the gym (the only format I feel I can teach with strength… somehow, I have the endurance for it! Other class formats, I can’t demonstrate well enough) and I was chatting afterward with a woman I’ve known for years–told her about my MS, since I’m “coming out” a bit more. I said that I was frustrated with myself, having not done any strength work for the month that I was gone, and that I lose strength so quickly, and physiologically, it’s challenging to recover.

Her response was upbeat: “knowing you, it’ll come back in no time at all!”

But I was a bit… let’s say realistic, here, and told her that with MS, there’s a good chance it probably won’t entirely return, even with my hardest efforts. And then, explained the physiology of it all.

So… was I being too negative about it? Sometimes, we just want people to know the realities of hidden illnesses, right? Even people like me, who aren’t “gloom’n’doom” types. I want people to know that I work my butt off for the pseudo-results that I see. Ha!

(putting in a plug) Which makes it even more important–if you know anyone in the Seattle area, or would just like to contribute, I have my fundraiser coming up in a few weeks… I hope to be able to skim 10% off of ticket sales to donate directly to the Neurology dept at UC San Francisco (where I went to graduate school! not neurology, but pharmaceutical chemistry). This department is doing groundbreaking research on myelin repair, and I really want to support them in any way. Heck, if I could, I’d work my teaching job up here half the week and in their research labs half the week… Whatever it takes! Don’t we all want to see a cure??!?!?

In any case, I’ll post my flyer again–and if you have any questions you’d like to send backchannel: brooke at dancems dot org. Thank you from the bottom of my demyelinated nerves!

Lots of great music! Come join us!

Lots of great music! Come join us!

Hey y’all, check this out:

This is a 10-minute short film that’s been nominated for a handful of awards. It’s the story of a new young couple and an MS diagnosis. I won’t tell you the end… you’ll need to watch. But I think a lot of us with MS have experienced what this young man goes through, whether in romantic or platonic relationships.

The ending is wonderful. (Don’t give it away, Brooke!)

get a grip


Just a few days ago (a supposed partial “day off” where I only had 2 hours of my online job, so I could catch up on cooking, cleaning house, and prepping fall quarter), I broke a dish.

Luckily, it wasn’t a sentimental one. It was a useful one, so that was annoying. But I had cooked a few things, had to clean a few dishes for reuse, and was washing the glass blender when… it slipped and landed on the bowl in the sink. Cracked through the side.

I’ve been tired recently (two day-trips of over 300 miles recently will do that to you, both work-related) so I’m hoping that’s it–also, our recent cold snap has dried out my skin–

But I’ve also been losing my grip. Grip strength has been a challenge for me since my diagnosis, and it’s been slowly getting worse. You’d think that I get a lot of strength training, being a piano player, but that doesn’t really seem to improve my fine motor skills too much.

Mind you, I can still reach out and grab things just fine on a regular basis. I can still write, I can still hold a steering wheel. But opening jars has been a problem. The tendons at the base of my left thumb have been weak. If I do too much vinyasa yoga (all those planks and weight on my wrists), the base of my left thumb will tell me… I just don’t have enough strength built up there.

So will this ever improve? The rehab exercise therapist in me says, “do these exercises X times a week and you will see improvement.” The one I really need to do for both hand and forearm strength is simply wringing out a towel… But as with the rest of my body so far, will I improve? Or will I just stagnate?

I guess I won’t know until I try. (Adding yet another exercise to the already-busy routine.)

… to someone in a bad situation?

“It’ll all work out fine.”

Because, left to its own devices, a situation typically does not work out fine. You have to WORK at it. There is often a struggle. (And, in the end, the struggle is typically worth it… but leave it alone, and things don’t just “work out” on their own.)

But how many times have I been placated by someone who just says things will work out?

How many times have we ignored the elephant in the closet thinking things will “work out” anyway?

Denial is powerful, isn’t it? I’d love to think that things will “work out” and that I’ll magically regain the strength that MS has stolen from me. Or, how many times have we all put exercise on the backburner during the holiday season, saying we’ll get “back to it” later, saying things will “all work out” with our health in the end?

Don’t tell yourself things will just “work out”. Keep on pushing to be the best YOU that you can be. Oh, and if you haven’t guessed… I’d rather have your support and genuine friendship than the flippant “things will just work out”. Think about it… wouldn’t you?

So, when I went on that month-long trip… (that blog is also woefully behind) I had plans to do some yoga in the room. Something to keep myself strong. But then, the incredible heat wave hit. Over 20 days of 90-105 degrees in Europe… and it’s humid there.

Needless to say, there wasn’t a ton of energy to exercise, other than the walking around we did. (If you know anything about the walled cities of the Croatian coast, you know there was some exercise involved… for sure… instant stairmaster!)

But when I came back, 28 days of no strength training later… I had nothing. MS had gotten the better of me. Total lack of strength. The normal person will lose muscle mass while not exercising for a few weeks… imagine someone whose motor nerves don’t function as well.

But I went right back into it (I taught spin 48 hours after returning; I had to, to stay on the “active employee” roster at the gym) and… a week later, total upper body spasms. Really painful. I had to take a few days off of lifting all together, and anything impactful. Even going down the stairs jarred me a lot.

Now, was that related to my lack of exercise, then getting back into it too quickly? MS in general? Something totally random? Gnomes tying me in knots in the middle of the night? Really, I’ll never know…

But even so, the total loss of strength, which will take a while to recover (if ever), is disturbing enough that I vow to never do that again. I may not do the hours of exercise that I do at home, but I must do something while on lengthy trips.

Or else risk more loss of function…


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