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.

After being diagnosed with MS in 1998, in her early 40s, Wendy says she was scared – scared of winding up in a wheelchair, scared of the unknown, in uncharted territory. “I figured I’d better start working on my bucket list.” So even though she’d never been athletic before (sound like anybody else we know?), she trained for and ran the Boston Marathon. Eventually she hit on the idea of climbing the highest mountain on each continent: the Seven Summits. She knocked off six of them, but after two tries at Everest, in 2009 and 2010, she’s come to the conclusion that six and a half summits is just going to have to be enough.

Here are her own words on why she turned back:

The hardest choice I have had to face in the 12 years I have been living with MS was to turn back from a summit attempt on Everest? twice. I have had to recognize that on Everest I reached my boundary- sustained life above 17,000 feet, where the air is painfully thin and took my body to a place where it couldn?t function with Multiple Sclerosis. My MS could not tolerate the lack of oxygen to the brain and the enormous daily temperature fluctuations on the mountain. Everyday while others on my team grew stronger I was getting weaker. I noticed new symptoms I had not had before as well as a severe increase of those I have lived with for years.

Full entry: Then There Were Four …

I had the opportunity to talk to Wendy recently. I found that she is nothing if not metaphor-minded. If she can’t get to the highest spot on the planet, she’ll go to the top of the world instead. She’s planning to attempt the North Pole next year.

As people dealing with MS, what can we learn from Wendy? Is she saying, “Jump up out of your bed and climb a mountain, you’ll feel better?” I don’t think so (I certainly hope not). In our conversation, she volunteered that she knows that climbing mountains will not keep MS at bay, and said that what she hopes to show people is that no matter what challenge you’re facing, there is something you can do that will take your mind off it, that will put you in control. She acknowledges that everyone has to grieve, to have a period of mourning after something like an MS diagnosis, but says, “You can’t stay there! Find your passion – find something that takes your mind away from MS.” Her passion is extreme adventure, challenging her body to things she never guessed it could. Your passion, she says, might be knitting, or learning Spanish, or taking beautiful photographs.

She is asking people to contribute stories about what she calls their mountains (second form on the linked page), and she’s posting their stories.

In Wendy’s world view, the mountain appears to be both the obstacle and the goal, and for her personally, a certain amount of pain and difficulty seem to be integral to her sense of accomplishment. I’m less metaphorical, more literal and definitely more pain averse. I’d ask two questions instead: “What do you want to do?” and “What’s keeping you from doing it?”

An MS diagnosis is a horrible shock. It’s a sucker punch that leaves you feeling like whatever it was you had planned for your life isn’t gonna happen. It can take months and years of grieving and anger to get to the point where you realize that even though you may not be having the life you planned, you can have something else. It can be extraordinarily difficult to let go of beliefs about how you should live, hard to find out about alternative ways of doing things.

I started doing things differently before I realized what my goals were (“What do you want to do?”). I want to continue to participate in life’s activities, and I want to be healthier. In order to do those things (“What’s keeping you from doing it?”), I have used all sorts of mobility devices (cane, crutches, wheelchair), because my goal is to get to the grocery store, get to work, get to the movies. Your goal might be different. Your goal might be to stay vertical and ambulatory as long as possible, in which case you might be getting to the kitchen, or the mailbox, rather than to the grocery store, but doing it upright and walking. Neither one of us is wrong.

You can still work, climb, play, love, have children…but it might be more challenging. You may need more help. You will need to take care of yourself. None of these things can prevent MS progression but you can still live well now. And you don’t have to climb a mountain unless it’s something you really want to do.

When Exercises for people with MS was launched in 2004 it was the first publication designed to build on the evidence that exercise was good for people with MS. It offered people with MS and health professionals simple guidance about appropriate exercise regimes. Since that time, in excess of 45,000 copies have been sent out.

To enable more people to have access to this information and to enable health professionals to provide a more tailored approach, the book has been transferred to this web based format.

The exercises are arranged in categories based both on how they are done and the type of problems they address. Each exercise includes clear, attractive diagrams, and an animation to illustrate the movement. The option to download each individual page allows the compilation of a personalised set of exercises to meet particular needs and to suit lifestyle.

But no. I spend weeks berating myself for not being able to do four or five workouts a week “like everyone else”. There doesn’t seem to be any middle ground between going full bore and feeling like it’s a major effort to drag myself out of bed to go to work three days a week. Where’s the Reality Check fairy when you need her?

One mistake that many people make when they start exercising regularly??whether it?s lifting weights, circuit training, or performing cardio??is focusing on what everyone else in the room is doing. Bad idea. Naturally, when you notice others at the gym lifting twice as much as you are, running twice as fast on the treadmill, or working out with a lot more intensity, it?s easy to feel a bit disheartened. The best course of action you can take, however, is to focus on yourself.

This is probably the hardest part for me.

Today I feel better – more like I’ve been hit by a Fiat.

A kind of hippie-ish guy fell in with me as I was crossing the street. He was friendly. He told me about how he had hurt his knee, and they said he would never walk again, but he healed himself naturally in six months! “That’s great,” I said.

Then he wondered if I was paralyzed. “I have MS,” I said. So he wondered if I was getting bee stings. “No,” I said. He thought I ought to know about a new supplement, something with silicon or silica (he didn’t seem quite sure) that was invented by the guy who invented the electron microscope, in France. He was pretty sure that there’s a hospital in Mexico that administers it. His friend did it, but he had heart disease, not MS. On this strange note we parted.

As far as I could tell, he was genuinely trying to be helpful, which counts for something.

On Labor Day that year Clark’s sister was able to talk her through an attack, which was brought on by the stress of planning to go away for the weekend. After that, she was able to stop several other attacks by relaxing during stressful times.

“Talk her through an attack”? Maybe it’s a variation of “it’s all in your head”.

At some point it just feels sucky to be around people having fun if they expect you to also be all fun-having when you can’t. I have to go off by myself a little at that point to deal with myself and whatever pain I’m in. I used to be a fun person. Now that barely ever happens. Anyway. I’ll get better, it will just take a while.

That’s how I’ve been feeling, except for the last sentence. I’m really glad Liz added the last sentence. I need/want to feel that way, too.

I’m trying to find the balance between exercise/activity and rest/recuperation. I feel disgusted with myself when I don’t work out three times a week, but I feel scared to do more. I feel like there’s no excuse not to work out, except that I know there’s an excuse not to work out. What to do? Work on a schedule, or try to detect the incomprehensible signs of the body? Is the fact that I’m tired and in pain because I’ve done too much, or because I’ve done too little?

Some excerpts:

Less than two out of three responders (57%) recalled their treating physician ever having recommended exercise to them. The main reasons given for an exercise recommendation were general health benefits, weight control, and fatigue management (see Table 1). Interestingly, 8% of the responders who had received an exercise recommendation were unsure of or could not recall the specific reason for it. More importantly, among this group only 38% were engaged in regular physical activity, versus 51% among those who were able to name the specific reason. Also worth noting is, that in several cases the discussion on exercise participation was initiated by the patient rather than the clinician.

Among the main reasons physicians had given to discourage physical activities were energy conservation, overheating, and concerns for imbalance and falling. Most of the comments referred to temporary limitations during an injury or an exacerbation, or to reasonable precautions not to “overdo it”?. In some cases, however, the perceived message seems unnecessarily pessimistic, such as “it won’t do any good”?.

Other useful references on multiple sclerosis and exercise:
Multiple Sclerosis & Exercise Resources