"You Were Probably SPMS From the Beginning"
In part two of our series "Letter to My Just-Diagnosed SPMS Self," writer Trevis Gleason goes back in time to the day he was diagnosed with secondary progressive multiple sclerosis.by Trevis Gleason Patient Advocate
Dear SPMS Me,
So, that’s what I look like when I’m surprised…
As you sit in the office of the MS Center’s clinical director, having just heard the news that your MS has advanced to secondary progressive (SPMS) just 18 months after you were diagnosed with relapsing-remitting disease (RRMS), know this: It’s been like this for a while.
You didn’t just get MS a year and a half back when you had the ‘big one’ and finally went in for the tests. You’ve had MS for at least 15 years.
How long do you think you could blame the wine glasses for jumping to their deaths on the kitchen floor? How rich would you be if you didn’t have to keep replacing toothbrushes as they flew into places one dare not associate with an implement designed for oral hygiene? And did you really believe that those tree roots were grabbing you by the ankles, causing all those years of hiking mishaps?
Your change from RRMS to SPMS is after a decade and a half of undiagnosed (and—admit it—ignored and explained away) symptoms. Not a bad run if you think about it. If a person were to know they had RRMS for that long and done nothing about it, they’d likely progress at least as fast as that.
Truth be known: You were probably SPMS from the beginning. It’s likely why you had breakthrough attacks of new symptoms or worsening old ones while on your disease-modifying therapies. It may not have been that the drugs stopped working, rather it’s more likely that your disease was changing.
So now what?
Well, now 18 years your senior, I have a few things that you might want to know, a few you mightn’t but I’m going to tell you anyway, and one or two that I’m not going to tell you about because–as difficult as this is for me to say–some things you’re just going to have to live through to learn about fully.
You Need Therapy!
You’ve had a lot of changes to deal with in the past sliver of life. Big changes! Work, marriage, home life, personal life, physical self, emotional self–the whole lot, really–have taken to you blow after blow. Each punch lands before you've had a chance to recover from the last.
If you’re going to come out of this in the shape, you’re going to need to be to continue the fight, you need some help. Find a good rehabilitation therapist. No, not the physical type. Your psyche needs the same support that your body requires. Do the work with her as you would have attacked any other assignment in your life, and you’ll lay a solid foundation for the shit that’s to come…and there will be shit.
A Change is Gonna Come
You’ve just passed over a threshold from RRMS to SPMS. It’s a doorway from one disease “room” to another, but there wasn’t really a door. It’s not like there was a moment when it stopped being one and began being the next. You were accumulating damage in-between MS Things (yeah, you start calling them “Things” rather than attacks, exacerbations, episodes, or otherwise. Seems like something you’d do; don’t you think?) for a good long time.
And–now this is important because you’re going to think that maybe the doctors were wrong about the SPMS diagnosis–you’re still going to have a few of those “Things” even after this change in diagnosis. It just happens that way sometimes.
It’s Going to Get Worse
Don’t know how to tell you this, Tiger, but you’ll be in an untreatable place for a while. Your symptoms are going to get worse and there aren’t any disease modifiers out there for people with SPMS for a good long while. But there will be. In fact, I’m writing you from a time when progressive MS is the major focus of MS researchers and patient advocacy organizations around the globe.
When they come out with some stuff for progressive MS, however, you’re going to have to look long and hard at the efficacy as well as side-effect profiles. You’re going to have to focus on your whole well-being and symptom management. There are going to be difficulties (you’ll get the irony of me using that euphemism one day).
You can and will get through (or around, or under, or over) those craters in your path, but you’re not going to be able to do it alone. Use what you learned in therapy, lean on the support that is offered, and for pity’s sake, lad… learn to ask for help faster than I did!
You’ve Got Some Decisions—So Many Decisions—to Make
Much of what you once saw as control in your life was only ever really an illusion. The only thing over which you’ve any real control are your responses and reactions. That and your preparation for things which might happen.
The thing is, you can’t live your whole life in the "What if...” zone. You will find, however, that having two or three “...then I woulds” at the ready will keep you mentally upright when the MS storms rage.
You’re going to have to make some heavy decisions in the coming months and years–what meds (if any) to take, when are the risks of those serious potential side-effects worth the possible benefit, what people/things/experiences in life are the most important to spend your limited resources on, how and when to say that most difficult word, “no.” Create a risk-benefit ratio template for yourself. Your symptoms may be at a place where you’re willing to risk more than you would at other times when things don’t seem quite as bad.
You’ve built a strong medical team, you’ve prepared yourself for many of the possibilities, and you’ve educated yourself as best you were willing. Use all those tools when it’s time to make big decisions about your care, and you’ll make the right decision for the situation.
You’ll Be Grand
Your Irish cousins have a phrase, “It’ll be grand.” It doesn’t mean that things will be perfect. It doesn’t even mean that they’ll be good. It means they’ll be good enough when they need to be.
I’m not saying that you shouldn’t expect some great things to happen. While some of your dreams will be abandoned, you’ll not only dream new things–but you’ll attain and even surpass some of them.
I also want to tell you that you should prepare because some not so great things may happen as well. You’re not always going to handle your changing situation in the best form, and neither are some people close to you. Preparation is the key beforehand, and “It’ll be grand” is le passe-partout to getting beyond the sticky parts while you wait for them to get there. And sometimes, you’ll make them grand because you can.
Lad, when you leave this appointment things are going to be different and they’re going to keep changing. But they’ll not all change for the worse, and not all of those that do get worse will stay as bad as they’ll get. Build a strong defense against what’s coming by attending to your mind, body, and spirit.
Secondary-progressive MS isn’t a death sentence… it’s a life sentence. So, get on with living your life. MS or not, it’s the only one you’ve got.
All the very best (you’re going to need it),
TLG. Your future self, 2019