Hello? Hello? (Tap tap tap) Is this thing on?

(Ahem.)

Welcome to the launch of HackMyMS. Probably viewed by two people (my sisters – hi guys!) Hopefully, more to come.

This is something I’ve been wanting to do for a long time. In 2002, I was diagnosed with what was almost immediately identified as primary progressive MS (PPMS), a.k.a. the booby prize. At the time, there were no treatments for this form. It became quickly apparent to me that if I wanted to stop the steady slide, I was going to have to figure it out on my own (translation: walking out of my fourth or fifth neuro appointment and saying, “Crap, this is up to me.”).

I’m actually a science and engineering type by training, so the idea of problem-solving was sort of a natural fit. Over time, I’ve developed a variety of techniques that work for me, anyway. I wish I’d known them back in the day. Also, whenever I read a blog where somebody talks about obnoxious MS symptoms or the fact that they can’t stop what’s happening to them, I kind of want to wave and say there are possibilities.

So here’s me, waving.

Now at this point, we have to go through a few caveats. First, I haven’t found a miracle cure, just ways to make things incrementally better. Some days, that’s enough for me, just the sense that I have some control over this wild ride. Of course, understand that MS is an incredibly idiosyncratic disease – I’m just sharing what works for me. Let me know if it works for you, or if something else does. I have hopes that this site can sort of evolve into a solutions hub where we all share what works for us. And hold hands and sing Kumbaya.

Yeah, I know, I’m gagging a little bit myself. No, I am not Pollyanna incarnate. I’m a card carrying pessimist (DH, my hunka hunka burnin’ love, swears that Marshall Crenshaw wrote “Cynical Girl” just for me.)

So, you won’t find aggressive positivism here. Keep reading, though, because I’ve got some really cool stuff to cover. For example, I’ve figured out a way that for me, anyway, can (most of the time) interrupt that sudden intense urge to void that generally leads to wet clothes, showers, laundry, and generalized humiliation and despair. I’ve used e-stim to improve everything from my ability to stand up to my ability to get my feet off the ground to my ability to sit up straight.

I have plans for lots of other practical columns, including things like navigating insurance approvals, getting automotive hand controls paid for, etc.

I still have a full-time job and this is very much not it. This is a labor of love that I’m shoehorning in around the edges (observe me fearlessly mixing my metaphors – I’m a professional writer on a closed course, don’t try this at home). My goal is to update with new content every other week. I have a content map in my head but welcome questions and suggestions that might prioritize certain columns.

So, thanks for joining me. Sign up if you want to get notified of new content, and by all means forward this to anyone you think could benefit. I have plans going forward of videos and Instagram feeds but let’s just get the basic site up and running first, shall we?

Disclaimer

Hack My MS provides news and information only. It is an account of my own experiences and some techniques that have worked for me. It should not be construed as medical advice, nor is there any guarantee that any of these techniques will work for you. Always check with a medical professional before starting any exercise program, treatment, or medication. Do not discontinue any exercise program/medication/treatment or delay seeing a doctor as a result of anything you read on this site.