Multiple sclerosis is a strange, no, bizarre, disease.
To review: for many (most) people, MS is a relapsing-remitting disease. Attacks (relapses), which can have a variety of symptoms, hang around for days, weeks or months, and then go away (remission). Remission may mean that the person is free of all symptoms of the attack, or some of the symptoms may remain, usually at a less troublesome level.
When we read about MS, we read about relapses lasting at least 24 hours and at most a month or two. We read about remission being a long term thing, years or even decades for many people.
At some point, though, for many people with relapsing-remitting MS, the symptoms of a relapse don’t go away. Perhaps there are no more relapses. Perhaps there are relapses, resulting in loss of function, and they don’t get better. This variation of the disease is called secondary progressive.
As a person who has been unable to walk without support for over 5 years, I fall squarely into the secondary progressive category. But something has changed.
Early in December, I noticed that my brief periods of standing up and talking a few steps around the kitchen (hanging on to counters) to do dishes or cook were getting longer and stronger. For a week or so, I experimented with more walking in the kitchen. Pretty soon I was making it across the hall and into the bedroom. A while after that, I was doing it without crutches.
Several weeks ago, I started taking some small trips (with crutches) out into the outside world (massage appointment, choir rehearsal). Just before Christmas, I went to work with crutches for the first time since 2005.
Aside from getting a puppy in November (which, if anything, should have sent me to bed for weeks), nothing has changed (medication, PT, etc) that I can attribute this to, so I’m saying it’s a remission. Since it’s lasted (and I’ve seen improvements) over a full month, I’m feeling cautiously optimistic. My husband, on the other hand, is feeling wildly optimistic—he’s talking about buying me a bicycle!
Random observations about being upright after all this time:
- I’d forgotten how tall I am, or at least what the world looks like from this height—it’s a re-working of perspective
- What am I supposed to carry my stuff in? I have to buy a purse now that I don’t have my trusty wheelchair bag there 24/7
- All my pants are too long
- Wait, what do you mean I can’t wear the 2.5 inch high pumps I bought because they look good and it doesn’t matter cause I use a wheelchair?
- When did my husband get shorter than me?
Things people have said to me:
- Did you have surgery?
- Are you on new medication?
- Have you started physio-therapy? (No, but does exercising count?)
- Wait, I didn’t recognize you!
- (Even weirder) Nothing at all
Now I have to worry about how my ass looks. At this point, it’s a pretty cool thing to have to worry about.
P.S. I am not a superstitious person, but I hope announcing this to the whole world (or at least the two dozen people who read this) doesn’t jinx the whole deal.
I cannot imagine all of the physical, mental, and emotional changes you’ve encountered this past month. I hope your upright status is permanent but MS is a bit scary that way. I know you won’t let that stop you from trying.
I also hope you plan and do everything you ever wanted to try in the past 7 years. You’re a vibrant woman with a unique outlook and opportunity. Look out world.
I’d like to congratulate you on all the exercise and training you have put your body through in the past years. Without that work, I think it would be unlikely that you would have been able to start moving even though your MS had remitted. You kept every muscle you could as strong as you could when many people likely thought, “What’s the point?”
I’ll close this with: Who says nothing??!! How can someone see you upright after knowing you in a chair and say nothing? *That* makes me speechless.
Katja, I hope you get on that bike soon! I am keeping my fingers tightly crossed for you. Happy new year!
Katja, you are amazing.
Thanks, Linda – I was hoping for ‘hilarious’, but I can work with ‘amazing’ :-).
Hi Katja:
Let me start by thanking you for your blog and your awesome job of providing links. Congratulations on being upright. I am writing in hopes that my little story may be able to help you even more. I am also upright now and I found your blog when I was trying to decide whether to stay home or start using a wheelchair. I check back with you occasionally. Anyway, as an introvert married to an introvert, I do not have any social networking accounts and this is my third blog response in the last a decade.
My GP was insistent that I had/have MS. The neurologist observed some unknown densities on my MRI but referred to them as non-conclusive and not typical of MS. Obviously the previous CT had shown nothing. My symptoms included numbness and loss of function on my left side to the point of hemipeligia one day. The vertigo was so severe that I could not stand on my hard-to –control legs. I was also having the foggy-headedness of reduced executive function. We were really getting nowhere when my wife changed her research to a question of allergies.
So here is the part that may help you: my blood was tested for gluten antibodies and the test was negative however in the meantime we excluded gluten from my diet and within days saw improvement. I have read that it takes a year for all of the gluten to leave your body. It has only been half a year and I walk all the time and I have been getting back memories from years ago. Now all of us with chronic conditions have had cures recommended by every person who ever opened a tabloid or a website but the endocrinologist said that gluten intolerance is often only diagnosed with an exclusion diet. My research shows that 15% of those with gluten allergy/sensitivity have gluten ataxia and many of us have no typical gut symptoms. Gluten is in lots of surprising foods besides the wheaty bread and muffins, but there are great sites with lists of safe and unsafe foods (www.celiac.com). This may be of no use to you but my other motivation for this note is that you may be able to get this question out to others. I really wonder how many MS patients have gluten ataxia with, or misdiagnosed as MS. If you want to post this on your site you may and please edit it as you wish (I still tend to ramble)
Keith
Katja,
You are also hilarious. :-).
I never know what to tell people about my ever-changing physical condition. Stuff shows up suddenly, then eases off gradually, and there’s nothing to announce in a gradual shift, except that eventually it’s like, “Oh look. I went for a walk. First time in a year. Um, I guess I’m better. Okay, that’s a nice change of pace.”
–> I had a weird moment last spring where I rendezvous’d with an internet friend, who’d last had an update from me when I was deep in decrepitude. He asked me to do something, and I start to do it, and he’s like, “Oh wait, will you be okay –?” because, well, I’d failed to mention the gradual recovery, because I wasn’t ever really sure it had happened until, gee, I guess it had.
But probably I personally wouldn’t say much of anything if someone went from wheelchair to crutches or vice-versa, because I’m used to those being a continuum. (Or all-out walking for that matter, since my corner of the world always seems to collect the folks who can walk fine a little, use a powerchair for distances.) Plus I’m notoriously not nosy in what other people don’t see fit to announce. I figure that people will explain what they want to explain, and other than practical questions (want a travel lid for that cup?), otherwise it isn’t my concern if they don’t mention it.
Jennifer, thanks for the good comment on why people might say nothing. And for reminding me that I kind of like people, in general, to mind their own business.
Hey! When can we start cycling together? :)
Katja, you are simply the strongest woman I know. Memories of your strong spirit and body and voice remind me of how inspired I was by you back in college. I hope to hear more about your continuing recovery! Thank you for sharing your life and educating us all. Love you!
I am not simply amazed, but in awe of what you have done in the last several years.
A rocket scientist who goes on biking tours and travels as extensively as you and a IRON WOMAN marathon participant
I was going to say congrats on the new upright situation, and I know you can’t just take this recovery portion of your disese with a shrug and a WHO KNOWS WHAT IS GOING ON … so I will just say WELL DONE!
and I have a question – I guess your new JEANS don’t fit anymore?
Love and Hugs and smooches to you!
Nats: not quite there yet – I’ll keep you posted.
debe: yeah, the new jeans don’t work with the upright lifestyle, but that’s ok, they can be in the drawer as backup. I need to get some shorter regular pants, too.
Rashna: thank you, sweetie.
Oh that is encouraging news it sounds. Thanks for sharing your journey and wishing you well in the new year and hoping so much you get to get on that bike and find some fun new jeans!
I really know what you mean! I don’t have MS but I do go back and forth (without being able to predict it very well) between walking, crutches, and wheelchair use. It is very strange to venture out of the house for even short trips without the wheelchair and to walk from my car into work barely using a cane. What an eerie feeling to walk out of the house and across the street to get something from my car, without any mobility aids at all! For some times I could even fold up my canes and put them into my backpack. It was nice, but I could see not super reliable. I liked feeling tall(er), the convenience of it, and being “unmarked” by people I met. I did not like trying to stand in lines for things, or standing up to talk with people!
Well, I messed up both ankles and I’m flat on my back again now. I enjoy the walking moments and the optimistic moments but try not to have all my expectations of what I can do reset. (But I start to expect it anyway and then have a bit of an emotional rollercoaster to ride when I can’t walk again.)
Do people sometimes act like they’re really happy (with you) that you’re “better” now? I never know quite what to say to that. There is a bit of an attitude that other people are vastly relieved, and then they’re disappointed when they realize I am not actually “better”…
I forgot to say that I have a small Dahon folding bike, which weights less than 25 pounds. It’s amazingly cool and you can rig up crutch holders on them. Anyway, with the folding bike I can put it in my car and drive somewhere, then bike around.
Liz, long time no read! Great to see your comments.
“Eerie” is really apt. Yes, people are happy, and it’s hard to satisfy them that I’m as happy as they are, because this whole thing is eerie and unpredictable. I’m trying to resist countering people’s happiness with a laundry list of the things that are still wrong with me…
I’m just so excited for you, Katja. I can understand the mixed emotions. I’m convinced the workouts have something to do with it, all that bike riding in the country. I’m green with envy.
wow – very inspiring for one who has been struggling to stay out of full-time wheelchair status! VERY happy for you to have the luxury of worrying about how your ass looks. you are right, MS is a weird disease.
It has been a long time and I stop by and there is very good news. I am very happy for you! MS is a life of the inexplicable from the the good to the bad. I am glad that you at a point of the inexplicable good. I look forward to seeing some pictures of you on a bike!
Becky, Stephen, Erik – thank you for your comments! Erik, good to hear from you again.
This is good news, Katja! I have not been blogging still because of my wretched shoulder pain but miss doing it and talking with you and others more. I hope your remission is as long lasting as possible.
Sometimes it’s easy to forget how much more difficult every movement is in the wheelchair–my family laughed uproariously at me recently when I was on foot and took a weird footpath into the laundry room–I automatically followed the same path I have to do in the wheelchair, walking past the doorway and turning around in the hallway. Very strange. It was just so automatic.
Cool with the new puppy–will try to read back for more info. I have a service dog now–labradoodle.
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